nicolejoy81

New Address reminder :)

2010-10-31T22:04:00.000+08:00

Just another reminder, I've moved the blog over to http://madeline-hope.blogspot.com - if you haven't updated your links and your bookmarks, please do so :)

New Address!!

2010-10-22T12:30:00.001+08:00

I've been thinking for a while of moving this blog over to a new location. When I started this blog, I just used my regular gmail account with the email address that I've been using for 100 years (nicolejoy81). I've been thinking for a while of moving it to a new location, somewhere with a more relevant address - and so now you can find us at www.madeline-hope.blogspot.com - Maddy's very own little site :)

If you have linked this blog somewhere, please update the link so that people can still find us :) I'll keep this blog open for a while at least but eventually, I'll shut it down, most likely.

Thanks for following us :)

Nicole

In defense of babies that are "not healthy"

2010-10-21T21:00:00.001+08:00

If you ask a pregnant woman what gender baby she wants, many will answer with the cliche "I don't mind, as long as it's healthy". I never answered like that - I guess I was too honest, or not politically correct enough. I'd always joke "I'd love all girls, but Bernard really wants a son, so either way, one of us will get what we want ;)" or something along those lines.

By most people's definitions, Maddy does not fit into the category of "a healthy baby". For one, she has a genetic disease that she will have to live with for the rest of her life. Secondly, she very obviously does not look "normal" - she didn't even at her 17 week ultrasound and she never will look like what most people consider "normal" to be. And thirdly, she will spend at least her first four months in NICU and will have many more hospital stays, surgeries and all kinds of therapy in her life.

Yet as soon as I found out that Maddy would not be like a "normal" baby, there was nothing within me that said "I don't want her if she is not healthy". Or course I didn't want to have to face these issues, and I've had to come to terms with our "new normal" - but I always wanted HER.

In fact, because of her problems, I felt an even fiercer love and sense of protection for her much earlier in the pregnancy than I did with Lana. When we were faced with the prospect of losing her, every fibre of my being just whispered to her with every heart beat, "Live, little one, we want you, we love you, just as God made you".

I think that most people who say "We just want a healthy baby" haven't really thought it through. Many babies are born every day who don't fit the category of "healthy baby". Sometimes they are like Maddy, they have issues that were noticed during the pregnancy. Other times, they simply are too early. Sometimes a baby can be born after a completely uneventful pregnancy and problems are encountered at birth or soon after. Yet the vast majority of these babies are wanted and are loved just as they are.

So I think that instead of saying "I just want a healthy baby", we all should say "I just want THIS baby, whoever he or she is, whatever they look like, whatever personality they have, whatever differences they will have, whatever problems and issues they are going to have in their lives, however God made them..." - because ultimately, we're going to fall in love with our little ones, no matter what... that's what parents do :)

Counselling

2010-10-18T22:48:00.000+08:00

I am a big believer in counselling - I think it has it's time and place and it can often help people going through hard situations - plus it rarely hurts the situation, so I think that whenever someone's going through a very difficult time, whether it be in their marriage or whether it be in general life situations, it should be an option that they should look into.

I also think that anyone who is given a poor prenatal diagnosis in pregnancy, or anyone who suffers a loss of a child, or anyone who gives birth to a child with special needs or a disability should also consider seeing a counsellor as well.

I hadn't really thought about it too much as counselling was never suggested to me, all through my pregnancy - even when the doctors thought that Maddy most probably would not survive, to after she was born and it was confirmed that she had diastrophic dysplasia. I think that in other countries, counselling might have been part of the process somewhere along the line there - but here in Hong Kong it was never even recommended to me.

A couple of things happened recently that made me think about counselling. First of all, one of my friends here in Hong Kong is studying for her masters in counselling and needed a volunteer to "practice" on. She couldn't use anyone that she knew though, so she asked her friends to see if they knew anyone who would be interested. I ended up setting her up with one of my friends - but in the process I joked "It's a shame that you can't use anyone that you know because I'm sure I'd get you an A+".

Secondly, I was talking with someone about Maddy and she asked whether or not we had been offered any counselling - and when I said we hadn't, she said that I probably would find it worth my while looking into it independently. She made me "promise" that I'd find someone and talk with them. She said "Even if you just talk with them once and they say you're coping with it in a good way, it's better than not talking with anyone and then regretting it later". I could buy that - and I know I definitely have been through a LOT this year. It has without a doubt been the hardest, most stressful, most challenging years of my life.

So since I like to keep my word, I decided to look into seeing a counsellor to talk about what I've been through in the past year, how I've been coping with it, and whether there are areas that I can make improvements. I remember reading Matt Roloff's autobiography - he has DD and his parents had four kids, three of which had DD. He wrote a paragraph about his mother that stuck with me. He said:

Mom admits that there were times when she wondered if she might break down. She talks now of a mental picture she would get when things got really tough. It was a picture of her walking precariously along the edge of a very steep precipice. When she got so emotionally, spiritually, and mentally exhausted, she wondered what would have been wrong with just going over the edge. But she remembers thinking how useless that would have been because all that would happen is that she would be put in an institution, put on medication, and made to get back up on the edge. In the long run, it just wasn't worth it to fall, so she decided to keep her balance - day by day.

I know that ultimately, I want to be strong so that I can be the best mother possible for my kids, the best wife for my husband, and the best person that I can possibly be, and I figured that it wouldn't cost me anything to talk with a counsellor and just make sure that mentally, I AM coping with all that I'm going through.

So last week, I had a chat to a counsellor. It's the first time in my life that I've ever done so (unless you count the premarital counselling that Bernard and I did with my pastor before we were married) and it was a bit emotional and humbling for me, asking for "help" in a way - although I did say to her "I think that I'm coping pretty well with it, but I know that it's not always easy to see when you're NOT coping, so I wanted to talk to someone more as a precaution rather than because I'm falling apart now." (nice disclaimer hey?)

The counsellor did say that I seemed to be dealing with the situation fairly well and that she could see that I was pretty positive about it all. It was an emotional talk at times, telling her the whole story of my pregnancy and Maddy's life so far and what the future will hold for her and for us as a family. Even she had tears in her eyes as she said to me "I'm a mother too - and I know how hard it must be for you seeing your child in hospital in that box day after day". She gave me some things to think about though, and the main thing that I took out of it was that I need to make sure that in looking after everyone else, I need to make sure that I'm looking after myself as well. I have a pretty busy schedule with taking Lana to school, pumping at regular times each day as well as heading up to the hospital. I'm trying to still be a good wife for Bernard as well and not neglect him - but I need to take some time to remember not to neglect myself either...

So all in all, it was a pretty good experience and I'm glad that I went to see her. It isn't something that I will probably do on a regular basis but if I do get to where I'm feeling like it's all too much, I will definitely keep it in mind for the future. Being able to ask for help is difficult for me - but I would rather ask for help than fall off that precipice. Even though I don't like asking for help, I want to be the best wife and mother that I possibly can be for my family - and I know that I need to be strong now more than ever :)

Pregnancy and Infant Loss Remembrance day

2010-10-15T22:50:00.001+08:00

When a child loses his parent, they are called an orphan. When a spouse loses her or his partner, they are called a widow or widower. When parents lose their child, their isn't a word to describe them.

October 15th is Pregnancy and Infant Loss Remembrance day and I just wanted to write a quick post in honour of that. While I have suffered an early miscarriage (around 5 weeks along), I don't pretend that the grief that I went through then was anything compared to what someone goes through when they have a stillborn child or lose an infant. I've had some good friends who have lost little ones, and I've also made some friends through my own pregnancy journey who lost their little ones to lethal skeletal dysplasias.

And while I haven't really gone through that pain personally, I do know is what it is like to fear for the life of the child that I was carrying. I know what it's like to be told that there is a fair chance that my baby may not survive. I know what it's like to begin to consider funeral options for a child who is not yet born. And even though now Maddy is expected to live a long life, I still carry that experience with me and I will always feel strongly for those parents who didn't have the kind of happy ending that we did.

So today I'm remembering the little ones who died all too soon, in particular the children of my friends. Even though they didn't spend long enough here with us on earth, they will not be forgotten.

Chris Errera part 2

2010-10-14T21:00:00.000+08:00

A couple of weeks ago, I blogged about Chris Errera, a guy with Diastrophic Dysplasia who is also a brilliant pianist and composer. After I blogged about him, a bunch of you guys must have gone and checked out his website because the next day, I had an email from his web-guy and because so many of you went to his site from here, they came across my blog! So now, if you go to Chris's website, you will see Maddy mentioned on there :)

There is now a more recent news story about Chris here and if you listen closely, he mentions Maddy - so now she's famous ;) ;) hehe

I also want to say a big thank you to the people on the the Yahoo dwarfism group who brought Chris's story to my attention. It has really inspired me, and I hope it can inspire you too!!

A Productive Talk with the Doc

2010-10-13T22:18:00.000+08:00

First of all, I have a LOT of updates that I've been wanting to post but I've been really short on time since Lana started preschool three mornings a week. In addition to that, Bernard has Hand Foot and Mouth disease and is working from home this week, so even when I have been at home this week, I haven't been on the computer very much!

About a week ago, I told the head doctor that I wanted to have a talk with him about the long-term plans for Maddy. I often see him when he is doing the rounds but we only really have a couple of minutes to chat as he's busy rushing off somewhere, but yesterday I had the chance to sit down and talk with him for over half an hour. It was probably the most productive chat I've ever had with him, and it's definitely the longest.

The "bad news" is that he expects Maddy to be in NICU for at least another two months (until she is four months old) - that is if everything goes remarkably smoothly from here on. That makes things really tight for getting back to Australia in January but maybe it's not impossible. If we can't make it then, we'll just have to push it back until we can make it.

I really pushed the doctor to explain exactly why Maddy couldn't come home right now since day to day, she is so stable. But he explained that with her airway being only 1.9mm at the smallest point, he couldn't reassure us that a simple virus wouldn't make her condition deteriorate so quickly and severely that she would not be able to survive. He said he has seen other kids with small airways like this and they did let them go home earlier, but they ended up dying even though they seemed very healthy. I guess that even though she is breathing fine, if her airway somehow gets completely blocked, it doesn't matter how healthy her lungs are - no air is going to get to them anyway. One thing he said really stuck with me - he said "Even if she was my own daughter, there's no way I would take her out of the hospital until this issue is resolved".

In talking to other DD parents, I often have questioned why it seemed as though Maddy was so much healthier but had to be in hospital for so much longer. Other kids don't even always have the airway assessment done before they are allowed home. I don't know whether maybe I've been a bit naive about how severe Maddy's condition is (she does seem so healthy) - or maybe their doctors possibly should have been more cautious. But regardless, as I said in this post, I know I need to accept the situation because I cannot change it.

In our conversation though, I also told him about some of my frustrations with the hospital, with the visiting hours and with the way things are done up there in NICU. Often the strictness of it all makes you feel more like a visitor inconveniencing the nurses rather than the parent of the child laying there. He did hear me out though and he said that he's going to see what he can do about helping us have an easier time up there. He told me that until a few months ago (right before Maddy was born), the visiting hours were 8am til 8pm but the nurses just found that it was hindering them from doing their jobs - a lot of them were complaining about it and they ended up having a very high staff turnover because of that issue - so that is why they reduced the visiting hours.

One good thing though is that they are going to start aggressively doing the oral training for Maddy and the doctor hopes that within 3-4 weeks, that she will be fully on oral feedings. It will be after this that they are most probably going to do the MRI and bronchoscopy and then we will know a bit better what will need to be done in order for Maddy to come home. Also with her really starting oral feelings, they allowed me to attempt to breastfeed - so I tried that for the first time yesterday!! Of course after more than two months of being fed through a tube, Maddy had no idea what to do - but at least it gave her a bit of a feel for it. I know that exclusively direct breastfeeding will be a near impossibility but I'm grateful for the chance to at least give it a try. Also that MAY be one way around the rigid visiting hours, for me at least. Breastfeeding mothers are allowed in the NICU 24 hours a day.

In other Maddy news, Maddy now has to wear a Pavlik Harness for her hip dysplasia - her hips are slightly out of joint and this harness will help them to stay in the optimal position and hopefully that will help the problem.

Anyway - I'll leave you with a few pictures of Maddy over the past couple of weeks.

Here you can see her cute little smile - so hard to catch on the camera - but this one gets a bit of it at least ;)

This is Maddy in her new Pavlik Harness - she needs to wear this 24 hours a day for the next couple of months at least.

We tried to get passport photos so that we can process Maddy's Aussie citizenship and passport while she's still in hospital. We're going to attempt to use this one - hopefully it will work!! This is the ONLY time we've ever seen her face without anything stuck on it!! And I wasn't even there that time, I was taking Lana to soccer at the time!!

I've got LOTS more to blog about but I'm going to leave it for another time :)

The New Kid

2010-10-05T22:07:00.000+08:00

Today when I went to the hospital, there was a new baby in NICU. I don't know whether it was a boy or a girl, but I'm going to refer to him as "he"...

I think he must have been only an hour or so old when I got there because there were four or five nurses around him, attaching wires, inserting tubes, doing whatever they do there.

I was watching out of the corner of my eye, but not so much that it would be rude. I always worry about the other little ones, even though I don't know them or their families.

I hadn't been there for long when I saw the father coming down the hall. I could tell he was the father because his eyes were red and swollen, like he had been crying. Also, he was practically running into the room. It must have been his first time up in the NICU.

I saw him come up to his child and look at him laying there, with all the tubes attached. I know what it feels like to see your child for the first time like that - and as he started crying, so did I because it wasn't that long ago that I was that parent seeing my child for the first time.

I heard the doctors talking to him - and while I couldn't understand what they were saying, I know what they say by now. "Your child has some obstacles that he needs to overcome. We will do everything in our power to help him grow bigger and stronger, but you need to be prepared that it will be a long hard road and there are no guarantees. But we will do everything that we can."

I wish I could do more - I wish I could give that dad a hug and tell him that everything's going to be ok and that he'll be bringing his little one home before he knows it - but I know there are no words for times like that, so I just sent up a silent prayer for that little baby, that he'll be a fighter and survivor - because that's what you need when you're the new kid in NICU...

Dwarfism Awareness Month

2010-10-05T14:21:00.000+08:00

Last year, the Little People of America (LPA) declared October as "Dwarfism Awareness Month". There are a lot of these kinds of "awareness months" around (I believe that October is also "Breast Cancer Awareness Month" as well).

Before February, I had NO awareness of dwarfism at all. I had seen people with dwarfism every now and then, but never interacted with them at all. (I have met some lovely people online over the past eight months - some who have some form of dwarfism, others who have children with dwarfism, but I still haven't interacted with any of them "in real life" - although I hope to!!)

It is funny how quickly things change though - and the crazy thing is, this could happen to anyone. The form of dwarfism that Maddy has (Diastrophic Dysplasia) is a genetic condition that is inherited from the parents. However the most common form of dwarfism (Achondroplasia - responsible for 70% of dwarfism cases) is usually a random mutation which could happen in any family.

Here are some dwarfism facts:

There are over 200 distinct forms of dwarfism and skeletal dysplasias.
Many forms of skeletal dysplasia are not compatible with life - 55% of babies diagnosed with any form of skeletal dysplasia do not make it to six weeks old. (thankfully Diastrophic Dysplasia is compatible with life - Maddy is expected to live a long, full life :) )
People with dwarfism are generally not taller than 4' 10" at adult height. The typical height range is 2'8" to 4'5". (average height for DD is a bit under 4' tall)
Eighty percent of people with dwarfism have average-height parents and siblings.
Skeletal Dysplasias affect bone growth, but generally do not affect cognitive abilities.
There are an estimated 30,000 people in the United States and 651,000 internationally with a type of dwarfism.
There are two types of dwarfism: proportional (where the whole body is small, but in the same proportion to an average height person), or disproportional (where the head and trunk are average sized but the limbs are much shorter). Maddy has a disproportional form of dwarfism.
In July 2009 the word "midget" was declared inappropriate and offensive. Preferable terms are: having dwarfism, short stature, little person, lp, and the medical terminology use of dwarf.

Hong Kong has no organisation for short statured people. Australia's is the Short Statured People of Australia (that website really needs a good overhaul!!), and New Zealand's is the Little People of New Zealand. I plan to get involved a little with SSPA when we move back to Australia - I think it is good to have some contact with people with similar issues to Maddy, that way we won't need to "reinvent the wheel" when it comes to helping her through the issues she will face growing up.

For an list of people with dwarfism, you can check out this list on Wiki. It's really interesting looking at all the people and what they accomplished.

The Ups and Downs of this week

2010-09-29T22:10:00.000+08:00

Every week these days have these ups and downs, it's pretty crazy... but this week has had some good moments and some not as good moments and I thought I'd share them with you :)

My biggest bummer moment this week is that I found out that my favourite doctor is being transferred to the general pediatric ward so he won't be our NICU go-to guy any more! I loved this doctor because he was a bit more "Western" in his "style of doctoring" (if that makes any sense). He was born and raised in the UK (although he is Chinese), so he seems to understand where I'm coming from better than most of the other doctors because he's practiced in the UK - he actually just moved to Hong Kong a few months ago. Although maybe there are good things about him moving to general ward - I usually talk most to him because he's the easiest to talk to, but he is more junior so he can't make any big decisions. With him gone, I'll probably talk directly to the doctor in charge - and then maybe that will actually yield more results, I don't know.

One "crazy" thing that's going on right now is that we just decided to enroll Lana into preschool. The first month, she will be attending three mornings a week, and I will accompany her to the school. This will hopefully get her used to going. Then starting in November after she turns two, she will be going five afternoons a week, unaccompanied. I know that she will love it - and this is something that I've been thinking about doing for a while but put it off with all the pregnancy concerns, planning to look more into it when Maddy came home from hospital. But with Lana's 2nd birthday coming up next month, and with Maddy being in NICU indefinitely, I thought we should start actually doing something about it. So we start next Monday - wish me luck! I'm going to be really busy for those four weeks. It will be "easier" for me after November because Lana will be at school the same time that I'm at the hospital, if Maddy's still there.

There's actually a lot of stuff going on at the moment. We've got two birthday parties over the next two Saturdays, and also one of Bernard's best friends is getting married on the 10th, and Bernard, Lana and I are all in the wedding party. October is going to be a crazy month!! And I've still got to fit in pumping as well as daily trips up to NICU in between everything else.

One thing that is bothering me a bit about Maddy is that her "ear bubbles" are now hardened - I'm a bit frustrated because the hospital did not manage the cysts the way that we were advised, leaving the bandages off them for a lot of the time - and I'm a bit worried about how her ears will heal. Other DD parents - once they start to harden, will the remaining lump decrease in size, or is it like that for life? Can massaging the lumps decrease the size? Is there anything that can be done at this stage? We spoke with the hospital over and over about the issues but they did what they thought was best rather than what we specifically asked them to do. And since we weren't about to remove Maddy from the hospital and we couldn't physically be there to manage her ears the way we thought they should be managed, our hands were tied.

One of the best things of the week happened today - I've been asking the doctors at the hospital a few times to consult with a DD specialist somewhere. I even provided them with a couple of contacts. Yesterday, I asked them whether they had consulted with anyone and the doctor said that they emailed one guy but he never replied. Bernard's been telling me for a while that I should just get in touch with one of them myself - and so today, I did. I decided to find the email for the professor who runs the Skeletal Dysplasia clinic at Westmead Children's Hospital (where we will take Maddy when we move back to Australia). He has a lot of experience in this area and is probably one of the most, if not THE most, respected doctor in this area in Australia. Plus with there being an actual Skeletal Dysplasia clinic, all the doctors there collaborate together regularly on the issues involved in these kinds of conditions (kind of like those rare multidiscipline meetings that the doctors have set up for Maddy).

So anyway - I emailed him an outline about Maddy's situation and asked whether he would be able to consult with the doctors, and whether we would be able to bring Maddy to him when we visit Australia. I told him we planned on bringing Maddy there when we move back, and it may be helpful both for the doctors there and the doctors here to be able to collaborate a little. He replied to me within a few hours - and not only is he willing to help, but he will also be in Hong Kong in the first week of December and would like to see Maddy then!!! I forwarded the emails onto our doctors and they plan to consult with him. I am so glad to be able to start to get a bit of a second opinion - even if at the moment it's from a distance. Maybe this will help to get that ball rolling again a bit...

It's been so frustrating the past few weeks, we're pretty much just waiting for Maddy to get bigger and stronger so that she will get these tests done - and so from day to day, Maddy's condition is exactly the same. It's a bit frustrating that nothing is being done day to day - I want to see results, and this feels like a case of "a watched kettle never boils"! It can be so draining - but every now and then something happens and reminds me that this is not forever :) And we can make it through this time.

Today also, I received one of the sweetest, most thoughtful gifts that I've ever been given. I went to visit one of the girls from my bible study group, and all the girls had put together a "In need of... box" for me! It's a box with seven different bags inside, each with a different label. There's one which is "In need of encouragement from friend", another one which is "In need of a good laugh" and so on. I'm meant to take a bag with me in the cab when I'm going to the hospital on days when I'm feeling down, or when I'm feeling in need of that particular thing. I had to resist the urge to open them all at once, but I think it will be better to savour them one by one. It reminds me a bit of "PS I Love You", where the husband wrote all these letters for his wife to be delivered to lift her up after he passed away. It made me cry!! And now probably seven different cab drivers are all going to experience my tears on the way up to the hospital on different days over the next couple of weeks ;) It was so thoughtful though and I feel so blessed :) :) Thank God for good friends who know the right things to say and do to encourage me and give me that little "pick-me-up" that I need :) :)

My Firstborn

2010-09-26T21:57:00.000+08:00

When I was pregnant with Lana, I never kept a journal or anything like that. When she was born, I didn't write down the dates that she first smiled or when she started walking. I thought briefly about starting a blog back then to let family and friends back in Australia know how we were doing - but there was nothing "different" about us then. Bernard and I had already been married for three years, so having children was a natural progression. People get married and have babies all the time, and I figured there wasn't anything interesting enough about us having a baby that would make people (other than our immediate family) want to read about it.

Even now, when I blog, 95% of the time I'm talking about Maddy and her medical issues, or my thoughts on the social issues that she will face, or my thoughts/feelings throughout a kind of pregnancy that most women will never experience - the kind that no one thinks they will have to go through, and everyone hopes that they won't have to go through.

I don't blog about Maddy because she is my entire life - I blog about Maddy because she is "different" to the norm. I am aware that most people know next to nothing about the kinds of issues that she is facing and will face during her lifetime - and I hope that me writing about them will help other people to be able to relate to her, or that it will be able to help other people who are going through similar struggles.

All that said, I wanted to talk about Lana for a bit. I blogged about her before in this post - and that seems like such an eternity ago now! At this age, they grow up so fast. The first year of their lives seems to be mostly physical development - and once they start walking, they start learning so so soooo fast that it's hard to keep track of! There was a time when I could count the number of words that Lana could say - now, I wouldn't even know how to estimate. It'd probably be 500 or so - with more new words every single day.

Lana's still a ray of sunshine in our lives - she sings nearly 24 hours a day, all kinds of songs - from The Wiggles, to nursery rhymes, to songs that they sing on Playschool - even a few church songs. Then she makes up songs, or changes the words of them. Instead of singing "I will worship, I will worship, worship Jesus", I've heard her sing "Macaroni, Macaroni, Macaroni Jesus", or "I will worship, I will worship, worship (fill in random person's name here)". Instead of "Celebrate this happy day, Celebrate let me hear you say", she sometimes sings "Watermelon this happy day, Watermelon let me hear you say". I don't know the rationale behind everything that she sings, but it always makes me smile to hear her cheerful little voice singing at the top of her lungs.

When I'm pumping (which is six times a day, for 15-20 min each time, so quite a lot if you add it all up!!), Lana loves to jump on our bed and we'll sing together, both of us belting out "THAT'S ELMO'S WORLD!!!" Then when I'm finished pumping, she'll scramble to try and grab the pump and sit in my spot so that she can "pump" too.

I think Lana's pretty smart - although I know I'm probably a bit biased. But at only 23 months, she knows her alphabet and can recognise at least 5-10 of the letters, she can count to 10 and count some objects one by one (although she often will either miss some, or count others twice), she knows most of her colours and shapes, and she talks in full sentences already using words like "I", "me", "you" instead of always saying "Lana", "Mummy" or "Daddy". And most of that, she's been doing for months already (although the pronouns is a more recent development).

I know that having Maddy in the hospital has been difficult on Lana too. The hardest thing for her is that I'm leaving her every day so I can go to the hospital. There are days where she says to me "No hospital today Mummy, Mummy come to the park!!" - that's the kind of thing that we used to do in the afternoons before Maddy was born. She knows that Maddy is her sister and she knows that Maddy is in the hospital. We've talked about how Maddy is going to come home to live with us, but I think it might still be a bit of a shock to the system at first - I know that Lana will adjust to it though...

I know that there are going to be things that will be difficult for Lana because of Maddy's condition. Already, people always ask me how Maddy is doing. A bit less frequently is how Bernard and I are doing, and least of all is how Lana is doing. It can't be easy being a sibling of a child with special needs - and I don't want Lana to ever feel like she is less important, or that her needs are less important than her sister's. And just because I don't write about her as much as I write about Maddy doesn't mean that I don't care about her as much.

I wrote in March that I was glad that she was already in our lives before our difficult pregnancy - and I am so glad that she can still make us smile and help our lives at home these days to be filled with joy and laughter. I think that the whole NICU journey would be a much darker time without her around to have fun with at home. Our home these days is still a happy place, filled with more smiles and laughter than stress and tears - thanks to Lana.

I'm so blessed because of our first born. I love you, Lana Joy!!

Chris Errera

2010-09-21T13:42:00.000+08:00

I recently came across this story of a composer/pianist with Diastrophic Dysplasia (the same as Maddy). There is a 7 minute video which I found very uplifting. And I love how he plays piano better than me, with my long, slender "piano fingers", 10 years of training and 20 years of experience.

I was moved to tears when his Dad was talking about the emotional time of Chris's birth. I can relate to those feelings - even though a lot of it was still unsaid.

I love how Chris said "Don't pity me. I'm doing just fine. I've lived a life that I'm very proud of, and I'm happy... If I feel sorry about myself, then people are only going to know how to feel sorry for me. It's life. I'm in the game... I don't want them when they look at me to see the disability, I want them to look at me and see the ability. The ability of what I have. The things I can bring to society. How I can be an actual player in society that benefits people... And that's my job. And that's what I feel is my gift."

I wish all of that for Maddy - the strength of character and the ability for her to find that area in which she can excel and impact people in the unlikeliest of ways.

I've been realising that people who are born with things like this have both a blessing and a curse - it is a blessing because people who are "different" are memorable. People will notice Maddy. People will watch her and give her more attention just because she's not what they expect to see. On one hand, that's an amazing opportunity as well as a difficult struggle. It's an opportunity because she will have peoples' full attention, and if she can capture it, it will be able to open doors for her that may not have existed if she were "just like everyone else". However I also know that Maddy won't be able to have "off days" where she can slip under the radar and go do her groceries without being stared at, talked about or approached about her differences. I know that all that attention can also be intrusive and even cruel at times. But I also know that it is what you make of it. And here's praying that like Chris, she'll learn how to make lemonade :)

Check out Chris's homepage here - he has more videos of his songs there.

When Sisters Meet

2010-09-19T21:40:00.000+08:00

I mentioned in my last post that I was thinking of asking the doctors whether Lana and Maddy would be able to meet, but I wasn't particularly optimistic knowing how strict the hospital system is over here. Well yesterday when I was at the hospital, my favourite doctor was there and he was quite chatty, so I figured I'd ask him - and he asked the nurses, and they set it up so that Lana could meet Maddy today!! It's technically not really "allowed" so they had to move Maddy to an isolation room around the back, and they set up all her monitors over there, and then Lana had to use the back entrance - but for the first time in Maddy's life, our family was all together :)

Lana was very gentle with Maddy and seemed quite fascinated by her, and Maddy had big grins for Lana too. I'm so happy that they were able to spend some time together - even though it wasn't for particularly long. I'm looking forward to watching them grow up together and play together in the years to come :)

Moving towards Acceptance

2010-09-17T23:57:00.000+08:00

I've been thinking and writing a lot lately about my desire for Maddy to come home from hospital - but after a lot of discussion with practically every NICU pediatrician, I realise that it's not going to happen in the near future. And I think that it's a lot "healthier" for me to come to accept it (at least in part, even if I still disagree in principle) than to fight it so much. I don't want to be so stressed and upset about it that it hinders my ability to be a good mum to both my girls.

Anyway, I've been thinking - maybe I need to try other ways to get what I want... I'm not going to change the hospital system here, as much as I think it's pretty horrible. I'm not going to be able to magically extend the visiting hours, or the people who are allowed in and the people who are not allowed in. So I need to be a bit creative...

One thing that I REALLY want is for Lana to be able to meet Maddy - maybe I will ask the doctors if I would be able to take Maddy out into the waiting area so she can meet her sister. I know that they are pretty likely to say no, but I also know that there's not really any medical reason why she couldn't - and I can always ask at least... (and I think I know which one is the softest, so I'll ask him!!)

Another thing that I am a bit afraid of is that Maddy will have trouble bonding with us after she is released, particularly if she is there for another few months. Yes, she sees me every day but only really for about 1-2 hours. Bernard can't get up there every day because if he did, he'd never see Lana as he'd be getting home after her bedtime. One thing that we are planning on doing is making some audio clips of us reading stories, maybe try to get Lana to sing a few songs or something like that, and then the hospital can play them when we're not there.

Maddy already has two toys up there that we will bring home with her - hopefully she will notice and when she does come home, she won't feel "out of place"...

Maddy's NICU stay isn't like a premie's NICU stay, even though that both are often around 3 months long. For a premie, they are still so busy still developing that they don't do much interacting and responding etc (I guess - I've never had a premie, I've just observed the other babies around Maddy...) - but Maddy really needs that stimulation. She loves looking around and responding to things - I don't know if she recognises faces yet, but she definitely will while she is in there. When we visit her, I try to spend most of that time holding her and talking to her, and I love that I can now bath her, even though I still feel pretty clumsy (for Lana, we had a bath which had this kind of hammock in it so we didn't have to hold her so awkwardly, she could lay half in the water supported by the hammock thing. Wet babies are so slippery!!) We need to bring up some books to read to her - we haven't done that yet, but we've talked about it.

Anyway - I want to find creative ways of helping her to know that we're her family... any suggestions? Please leave a comment or email me!!

I'm not that inspiring...

2010-09-14T22:10:00.000+08:00

I've been getting a lot of emails and messages from friends and strangers, people I know, people I knew years ago but haven't stayed in touch with. And a lot of people have told me how inspiring we are.

I don't really get that because I don't think we're inspiring at all. I feel tired, worn down, emotional. I have days where I'm used to the whole routine of the NICU thing - but I have days where I just hate our current situation and wish there was something I could do to change things. I'm constantly frustrated at the hospital. If we could somehow go back in time and change things in our past, I would have done just about anything so that Maddy could have been born in Australia rather than here in Hong Kong - but she wasn't and so we're pretty much stuck here and can't do anything about it.

Today was a pretty bad day for me - I had my 6 week postpartum check up at 11am at the hospital. I know these appointments always take forever and I expected to be there for around 1.5 or 2 hours. So yesterday I arranged with the nurse to go and see Maddy at 1pm and give her a bath. Visiting hours don't start until 3pm but they agreed to let me since I was already going to be at the hospital. As well as the postpartum appointment, today was the day scheduled for the multidisciplinary meeting about whether Maddy would have the MRI tomorrow or not - Bernard and I were "uninvited" from it (the doctor yesterday told us that they only had 30 minutes so they didn't want us there asking too many questions because they needed to be very punctual) - but we were anxious to find out what the next step would be.

Well the postpartum check up was in itself a bit draining - the doctor was talking to me about Maddy and I was explaining my frustration at her being in hospital, pretty much just in case there is an emergency. In other countries, Maddy probably would have been allowed to go home with some in-home nursing, an oxygen tank just in case and an oxygen monitor. I was asking the doctor whether Hong Kong has in-home nursing at all, and pretty much it doesn't provide that option - it is possible to get nurses to come, but it's extremely expensive. So already I know that if we want Maddy to come home, we either need to do all that ourselves (probably needing someone to be with her 24 hours a day in case her O2 stats go down), or we'll need to pay for the in-home support ourselves.

I got to the NICU about ten minutes late (my appointment went later than I expected) and the nurses wouldn't let me in - they said that they were too busy and that they'd already bathed Maddy so I couldn't bath her anyway. Even though I'd already arranged it the previous day, they wouldn't let me in. And the nurse who told me I couldn't come in was the same one who said yesterday that I could! I was so upset that I just walked away in the middle of talking to her. I hate how strict the visiting hours are and how they won't let me see my own daughter if it's not convenient for them!!

I decided that rather than sitting around for two hours at the hospital doing nothing, I might as well go home. I decided instead to go and see Maddy with Bernard after he got off work (it meant going to the hospital twice today, but it was better than sitting by myself in Starbucks for two hours!!) I was expecting the doctors to call and see where we were as I was meant to discuss the results of the meeting with them. I saw one of the doctors this morning and told him I'd be around in the NICU between 1 and 2 and that we could discuss it then. When they didn't call looking for us, I told Bernard "I bet they've cancelled the MRI".

Sure enough, we get to the hospital and the doctor told us they have cancelled the MRI (the one that took two weeks to book). Basically, they don't want to risk the bronchoscopy as long as Maddy is stable - they want to leave it as long as possible, and so they don't see the point in doing an MRI now since the orthopedic doctors say that even if they can confirm that the cervical spine is stable enough for the bronchoscopy now, they can't say that it will still be stable in one months time. The irony of it is that if Maddy were not so stable, they would need to take action and do something now - but because she's stable, they are willing and happy to leave it.

Also when we were at the hospital today, Maddy's oxygen levels weren't so good. They're meant to be above 95% ideally but tonight they dropped down below 80. It's the first time I've seen them so low since she was a week old or so - and they put her on oxygen (which helped her stats go right back to normal again) and ordered another x-ray to check if her lungs were ok. Maybe it's a little reminder that as much as I don't like it, Maddy is better off there than at home at the moment.

So all in all, it wasn't the greatest day today. I'm so tired of all of this - and the end isn't even in sight. I feel like I'm barely juggling NICU and still being a good mum to Lana. I don't know how I'm going to manage another who knows how many more months of this (although I know that I have to, one way or another)... And I don't know what's so inspiring about all that.

Two new firsts :)

2010-09-10T20:47:00.000+08:00

Today when I visited Maddy, we had two more "firsts".

Today was the first time that she was DEFINITELY smiling :) :) For the past week or so, there have been some times where I thought "Was that a smile, or was it just gas?" but today she was really smiling and responding to me talking to her. It was soooo sweet - I wish I had my camera or video. I know it's really hard to catch those first smiles on film though (why do we still say "film" when everything's digital now?) - I remember that from when Lana was the same age... but it was so precious that it brought tears to my eyes :)

The other "first" was slightly less charming - when I was about to bath Maddy, half way between her bed and getting her in the bath, she peed all over me! Now I'm feeling a bit more like a "normal Mum" than a "NICU mum". It's a good feeling to have :)

Firsts

2010-09-09T23:18:00.000+08:00

I've slowed down a bit with my blogging because not much is happening at the moment! Maddy still has an MRI scheduled for next week Wednesday to assess the stability of her neck, but the doctors are not even 100% sure if they will go ahead with that. The MRI will include a bit of movement of the neck and they are not sure whether that movement may press on the narrow airway and block it. The pediatrician is setting up another multidiscipline meeting, most likely on Tuesday (the day before the scheduled MRI) to discuss whether that is the best next step. It's been really difficult for him to schedule because at the meeting, there will be something like five doctors who are all the heads of their departments (pediatrics, ENT, anesthetist, pulmonologist and orthopedics, I think). Because Maddy's case is complicated, they need all of the best doctors in their fields working on her. We are meant to be meeting with all of those doctors next Tuesday to discuss what we will do from here. I'm hoping that the meeting will provide us with a bit more of an understanding as to how long Maddy will need to be in hospital, and what steps will need to be taken in order for her to be able to come home safely...

We found out last week that Maddy is actually the FIRST case of Diastrophic Dysplasia ever in Hong Kong! I guess because the mutation is much more rare in Chinese populations, that's probably why there hasn't been a case here before now - and it took my Western genes and Bernard's weird mutation (another first there) for it to happen. What are the odds? We should start buying lotto tickets!!

Part of Maddy's condition means that she has these cysts on her ears - it happens in most cases of DD within the first month or so of life. It seems like it's pretty painful and uncomfortable, the doctors and nurses have been applying compression bandages to them (the standard way to treat them so that they heal well), but Maddy doesn't like the bandage being changed, or anything touching her ears for that matter. The doctors have found that the bandages that they were using were causing some pressure sores on her ears, as well as slightly elongating Maddy's head because the skull of an infant is still not fused and pressure can move the bones around a bit. They've been experimenting with other ways of compressing the cysts without causing Maddy as much discomfort and they are currently using this clip kind of thing which only applies the pressure directly to the ear without pressing on the rest of the head. Here's a picture of Maddy's ear cyst on her right ear. She's had this for a couple of weeks now...

In other firsts, the nurses asked me the other day whether I would like to start giving Maddy her daily bath - so I've been bathing her for the past couple of days! It's so nice to be able to be involved a bit more in the practical aspects of caring for Maddy. Here are some pictures of Maddy's bath time :)

And one last picture of Maddy in her bed,

Fun with Grandma

2010-09-09T22:47:00.000+08:00

Bernard's mum was recently in Hong Kong and she visited with Maddy last weekend. She was only the 4th person other than doctors and nurses etc to meet Maddy because of the strict visiting rules at the hospitals here in Hong Kong. Here are some pics of their time together.

You can see from the pictures that they're trying to give Maddy a more stimulating environment now that she's getting older. She has a little seat that she can sit in so she's not just laying in the bed all day - she can be a bit more upright as well, and also she has a funny little mobile that they set up for her. She's actually quite fascinated by it and loves to stare at the hanging toys :)

One Month

2010-09-04T20:32:00.000+08:00

I don't have a lot to say today but just wanted to write and say

Happy One Month Birthday Maddy!!

Maddy celebrated by meeting her paternal grandmother. One of the "benefits" of being in NICU for a month or more is that grandparents are now allowed to visit her. Maddy only has one grandparent living in Hong Kong (Bernard's dad) - but Bernard's mum is visiting at the moment so they were able to meet and spend a bit of time together today :) The visiting hours for grandparents are even more strict than the visiting hours for parents so Bernard's dad is planning to meet Maddy next weekend.

This past month has been completely crazy - but I'm glad that our little girl is here and that she's safe and getting stronger in the hospital. I wish more than anything that she was able to be home with us - but I'm just thankful that she's here...

How can I help?

2010-09-03T13:14:00.000+08:00

I found this great link yesterday when I was looking up random NICU information. I agree nearly 100% with it so I thought I'd post it over here too... It's mostly specifically about premature babies (as probably 90% of NICU babies are there because of prematurity - that's my estimate from my limited experience in NICU anyway). But whatever reason a baby is in NICU, I think the principles below generally hold pretty true.

from http://www.prematurity.org/baby/preemie-baby-helping.html

1. Don't judge the parent's reactions. There is no right or wrong way to deal with a premature birth.

2. Don't compare the baby's needs to those of a full-term baby OR to other preemies.

3. Don't just say "Call me if you need something." Do something! You can provide dinners, do yard work, go grocery shopping, offer to drive them to the hospital, and/or clean their house.

4. Be available when parents ask for help. If we ask for help, that means we needed it a long time ago.

5. Don't discuss the possibility of death or severe complications unless the parents initiate it.

6. Be inconvenienced. Helping someone should not always be bound by our comfort zones and busy schedules.

7. Buy appropriate gifts for the family, such as disposable cameras, calling cards, rolls of quarters, snacks, magazines, photo albums, journals, scrapbooks, and gift cards.

8. Support and praise a mother who is pumping breast milk during the baby's hospitalization. If is very difficult to maintain a milk supply when the baby is unable to nurse directly from the breast.

9. Baby-sit free of charge if the parents have older children. You can do this so parents can visit the hospital together or go out on a date.

10. When asking about the baby's progress, always listen carefully to the parent's response. Then, the next time you speak with them, refer back to the last thing they told you.

11. Offer encouragement during setbacks and gently remind parents of previous obstacles the baby has overcome.

12. Don't ask "when is she coming home?" The parents want the baby to come home too, but there are no quick fixes in the NICU. Besides, they will let everyone know when the time finally comes!

13. Don't be fooled by smiling faces. Just because the parents are smiling doesn't mean everything is going well.

14. Don't offer too much unsolicited advice.

15. Show interest in the baby and the parents throughout the hospitalization and after the baby has been home a while.

16. Make sincere compliments about the baby whenever you're visiting the hospital or looking at photos.

17. Don't compare their experience with someone else's hospitalization.

18. Offer a hug when the parents are expressing grief.

19. Avoid discussing disappointing news or concerns within hearing distance of older siblings. The older children are suffering as well.

20. Nicely recommend that counseling be sought when parents show signs of losing control.

Not going to happen...

2010-09-02T22:07:00.000+08:00

I talked to the doctors today about the possibility of bringing Maddy home first and bringing her for the hospital as an outpatient for the MRI/bronchoscopy but they said it wasn't safe to bring her home. Even though she's been stable for the past few weeks already, because her trachea is so narrow, it would be very easy for it to become blocked. If it did become blocked for whatever reason (eg, a common cold could be dangerous for Maddy), they may need to take emergency action such as giving Maddy an emergency tracheostomy.

The good thing about the CT scan is that now we know exactly where the narrowing is, and we know that the rest of her airways down into her lungs look ok - so if Maddy DID have to have a tracheostomy, it would completely bypass the problem area and hence (hopefully) solve the entire problem. However I'd prefer if we could avoid that altogether!! I guess that's one thing I can remind myself of - that if her being kept in hospital as a precaution prevents her from needing a tracheostomy, maybe that's a good thing. And it's definitely a good thing that they know what to do if Maddy's small trachea does happen to become blocked for any reason...

I've got mixed emotions about the whole thing. I am happy to know that Maddy is there for some kind of "medical" reason beyond just waiting for the tests - but I'm still frustrated at how long everything is taking. They booked the MRI for September 15th, two weeks away. And that's not even going to assess her airway (the main problem area) at all. So we've got a long wait to have any kinds of answers about what we're doing next.

The doctors are going to have another meeting with the ENT and orthopedic doctors next week to discuss whether this approach (MRI and then bronchoscopy after that) is the best for Maddy - and given their past track record, I wouldn't be surprised if they end up changing it up again!

I really don't relish the thought of Maddy being in hospital for two months or longer, all up - but like I said in my previous post, I need to do what's best for her, not what's best for me... and I know that even though it doesn't always seem like it, the doctors aren't my enemies who are playing a tug-of-war with me over my daughter. They want the same thing that I do, and that is for Maddy to be completely healthy :)

CT scan results

2010-09-01T23:14:00.000+08:00

Last Tuesday, Maddy had her CT scan. There were two purposes to it, a) to check the stability of the cervical spine, and b) to assess the airways to see if there was any narrowing.

We got the results back today and a) the stability of the cervical spine was inconclusive from this test, and b) the CT scan showed some narrowing of the airways at the larynx (voicebox area).

The main concern at the moment is Maddy's airways. Although she's doing great at the moment, breathing independently (she has been for weeks now), and her O2 stats are always very good (I haven't seen them lower than 95 or so for weeks), the narrowest part of the airway is about 1.9mm instead of the normal 3.5-4mm. The doctor explained to me today that this narrowing would make it very easy for something like a simple cold to be a serious problem for Maddy, and also if she were to get a bit of milk or something in her airways, it would be very easy for this narrowing to become blocked. So as a result, oral feeding is probably out for a while at least.

Because of the results, the doctors want to go ahead with the bronchoscopy which will give a better image of the airways than the CT scan, however they still will not do it unless the orthopedic doctor clears the cervical spine first. And the orthopedic doctors will not clear the cervical spine just based on the CT scan, so the next step is to do an MRI.

The MRI is a bit more risky than the CT scan. It takes a longer period of time and so it will require a heavier sedation, and also as a part of the MRI they will maneuver Maddy's neck to be able to get images of her neck in different positions.

The MRI will be done in a week or two, and then IF that clears the cervical spine, the bronchoscopy will be done a week or two after that. (If it doesn't clear the cervical spine, I don't know what the plan is then...) Then based on what they find in the bronchoscopy, we'll see what we need to do from there. But in any case, it still looks like it will probably be at least another 3-4 weeks from now...

I'm getting more and more frustrated and down about the whole situation. It just seems like with each step that they take, the end seems further and further away. And Maddy is just there waiting for the tests, not attached to any machines, doing seemingly so well. When she was born, I knew that she would need to go to NICU but I was expecting it to be for maybe around two weeks. It has now been a month already, and it's looking like it will probably be at least another month... I think I would be happier about it all if I could see an obvious "reason" for Maddy being in there, but the only reason she's there is to get these tests done, and also because I don't know how to replace a feeding tube and she can't feed orally...

I want to try to talk with the doctors and see if it would be possible to bring Maddy home first and then to bring her back to the hospital as an outpatient for the tests. I've already asked that question before though and they weren't very receptive to it then... I might try again though and see what the doctor says this time. I'm just getting so worn down by all this... but I do want what's best for Maddy, not just what is best for me...

Hands and Feet

2010-08-30T21:51:00.000+08:00

I mentioned in a previous post that the occupational therapist was thinking of splinting Maddy's hands and feet. Diastrophic Dysplasia has a huge impact on the shape of the hands and feet of the people that it affects. One of the biggest tell tale signs of DD is what's called the "hitch hiker thumb" and it was this that first made me suspect that Maddy had DD back in February - we could see the shape of the hand on the ultrasound and it was very typically DD.

In addition to the hitch hikers thumb, the middle joints of the fingers are often fused, which means that making a fist is impossible. The fingers can still bend at the other two joints though - and although you would think that this would make the hands pretty difficult to use, people with DD learn to adapt and do things in a different way. For example, they wouldn't be able to hold a pen in the conventional way - but they find other ways to hold a pen so that they are still able to write.

Here are a few pictures of Maddy's hands:

I talked with the Physiotherapist the other day and she said that we will not be splinting the hands at the moment - my preference is that we don't splint them at all. People who have more experience with DD have told me that it doesn't offer any real benefits at the hands can function as they are and splinting can lead to other problems such as stiffness. I talked with the Physio about this, and she really hasn't had any experience with DD at all, but I think she at least listened to me. I know that we all just want what's best for Maddy.

Most people who have DD also have clubbed feet, ranging from mild to very severe. Most of them will need to have both splinting done at birth, as well as surgeries done when they're a little older. I personally don't think that Maddy's are particularly bad, comparing to photos that I've seen online - and the doctors don't seem to think they are that bad either because they don't want to splint them at all. I'm a little worried though, knowing that most babies DO need their feet splinted - so I don't want to be missing a problem only to find out later that we should have splinted now but no one pushed for it.

Here are some pictures of Maddy's feet:

All baby toes are cute baby toes aren't they? You can notice that there is a pretty big gap between her big toe and her other toes. And also all her toes are not quite 100% straight. Her foot print looks a bit more slightly "C" shaped than another baby's would. And look at those chubby legs too!! I think it's cute that her diaper nearly comes to her knees too. When I see pictures of other newborns these days, they look kind of odd with their long arms and legs!!

This picture shows her "range of motion" - her feet can move to 90 degrees to her leg. Severely clubbed feet can't do that. To me it looks pretty good - but really I don't know exactly what to look for and would love the opinions of other DD mums!!

Another foot shot - in this one, you can really see the big gap between her big toe and the next toe. Also one thing I'm a little worried about is that her feet seem to bend more "outways", not completely flat to the floor, more like if she was walking on her toe and the arch of her foot, with the outside of the foot not touching the floor. I know that I'm completely over-analysing her feet - but like I said earlier, I just don't want to miss a problem because I didn't know what to look for, and then to regret not getting those issues treated earlier when she's older...

Anyway - in other "Maddy news", the plastic surgeon came to see her today with regard to the cleft palate repair. We will need to go and see him in about two months, and then he will follow up with her over the next year or so and hopefully that will be repaired when she is ready - I think usually around 12 months of age...

Also apparently the results from the CT scan should be in tomorrow - fingers crossed!! It's about time too, I've been getting so impatient. I don't understand why everything takes so long. The ENT is anxious to clear Maddy's airways so hopefully her opinion won't take longer than a day or so, and double hopefully her opinion is that Maddy's airways are strong enough for her to not need the bronchoscopy and that she can start oral feedings with no risk her airways!! I'm so wanting our little girl to come home and I know that she's strong enough!! I'd love to have her home before she's a month old on Saturday, although I think that's probably pushing my luck a bit...

Anyway - I'll just leave you with a few last pictures of our baby girl :)

Playing with her bunny rattle that Mummy bought when she was still pregnant :)

Sleeping like an angel :)

Genetics

2010-08-27T22:46:00.000+08:00

Today, Bernard and I had an appointment to see the geneticist to discuss the results from our genetics tests. We already knew that we were both carriers, and that Maddy obviously inherited both of our "bad" genes and that match resulted in her having Diastrophic Dysplasia. What we didn't know were the specifics of it all.

It turns out that my mutation is the most common mutation for Diastrophic Dysplasia outside of the Finnish population. Diastrophic Dysplasia has a much higher rate of occurrence in Finland, but the Finnish population usually have one specific mutation that is not seen as frequently in non Finnish populations. Bernard, on the other hand, has a mutation that has never been reported in the literature before.

It's funny, me being a bit of a Science-nerd took Genetics in university and was quite fascinated by it all. When Bernard and I started dating and then got engaged and married, I remember joking to someone (probably another nerd like myself!) "At least with marrying inter-culturally, I know that my chances of having any recessive genetic diseases are reduced!!" - and usually that is the case. A lot of genetic diseases have higher rates of occurrence in specific people groups, for example DD in the Finnish, and also Thalassemia is very common in Hong Kong and South Asia (in the Maldives, a whopping 16% of the population are carriers!), so when you marry inter-racially, your odds of carrying the same mutations as your spouse are lower than if you married someone of your own race.

The science-nerd in me actually got a bit fascinated and intrigued by the results of the genetic tests, particularly with Bernard having a previously unknown mutation. It is possible that for Bernard it may have been a spontaneous mutation, or he may have inherited his mutation from one of his parents. The geneticist also seemed to be "excited" by the results of the tests (if you can be "excited" by genetic diseases, that is) - and he, along with the head pediatrician, are going to write a paper for a scientific journal about Maddy's case.

If you were to guess whether or not Bernard and I were likely to be carriers for the same genetic disease, no one would guess that it would be likely. But it just so happens that Bernard's previously unknown mutation happens right on the same gene as the one for DD, which I'm a carrier of. Bernard's been joking that we've been "breaking the odds" and we really have. Some would look at it and say it was really bad luck - and in some ways maybe it was... but I still believe that there's some kind of plan and purpose in all of this, and especially now knowing how incredibly unlikely it was, it seems to me like it was too unlikely NOT to be part of God's plan somehow.

Three weeks old :)

2010-08-26T13:12:00.000+08:00

Yesterday, it was three weeks since Maddy was born. It's a crazy thing to see her growing up in hospital. Already the changes in her are big. When she was first born, she was so sleepy all the time. Now a lot of days when we're there, she's really alert. She's also tracking things with her eyes more and more now, watching for movements and lights and colours. It was around this age that Lana started responding more to things, smiling and laughing. I wonder how many of these small developmental milestones Maddy will hit while she's in the hospital. Will we miss her first smiles and laughs? I hope it's not too much longer until we can bring her home.

The CT scan on Tuesday went smoothly, but we are still waiting for the results. The radiologist will take a look at the 2D scans and recompile them into a 3D picture of Maddy's airways for the ENT to assess. I'm trying to be patient with it all but I think the doctors are sick of me asking every day what the results are. If the ENT is satisfied with the stability of Maddy's airways, she will then begin the oral feedings and probably start to begin preparations to come home :) (fingers crossed!!)

The occupational therapist wants to begin the splinting of Maddy's feet and possibly her hands as well. Her feet to me don't seem particularly bad, they are slightly clubbed. But I guess it's better to deal with it now and to get that extra range of motion now and maybe it will help to prevent future surgeries etc... From what I've read though, most of the time with DD babies, they don't splint the hands even though the thumb is not in the normal position, and most of these children grow up to be able to use their hands as they are, even with the hitch hikers thumb. I don't know - I'll have to talk with the doctors more about that when they are wanting to go ahead with the splinting... I'm a bit concerned that splinting her hands will lead to more developmental delays like reaching/grabbing etc... but if the benefit is greater than the cost, I guess it will be worth it. I feel like I know so little about what is best for Maddy though, even though I've been trying to learn as much as I can...

Tomorrow morning, Bernard and I have an appointment with the geneticist to discuss the results of the genetic testing. I already know that we are both carriers of the DD gene and that any future biological child will also have a one in four chance of also having DD like Maddy. I don't know what else he's going to discuss with us. Maybe which mutations we have, often there are mutations that are more serious or more severe. We also know that DD runs in both of our families now - so any of our siblings will have a one in two chance of also being a carrier of DD, any of our cousins will have (I think) a one in eight chance of being a carrier... But even with those odds, the chances of any of them marrying another carrier are remote so I don't know if it's even worth them getting the genetic tests done or not.

And in completely non-medical news, I've been wanting to process Maddy's Australian citizenship and passport - but they won't accept a photo with a feeding tube in! So we need to wait until Maddy has that removed before we can process it all. It makes me wonder what people do if they are continually on oxygen and need a passport photo taken. Do they take a big gulp of air and then take the tube away for the photo and hope they get a good picture fast? Or maybe people on oxygen don't want or need passports? I don't know - but unfortunately we have to wait to process all that. Hopefully we'll be able to do all that soon because we were wanting to get back to Australia in October, less than two months away - and all of this takes time to process... I hope we can still get back there then. If not then, we may go back over new year instead (when the weather is actually nicer - Summer is my favourite time of year!!) We'll have to wait and see what happens though...

Let's get this ball rolling!

2010-08-23T18:22:00.000+08:00

After much frustration with the doctors not deciding which tests to run and what to run first, they finally had a meeting last Friday with the ENT, anesthetist and orthopedic doctors to decide the best way to proceed. They agreed to do a CT scan on Maddy's neck and use that to examine both the airways and also Maddy's cervical spine. The main benefit of the CT scan is that they don't need to hyperextend Maddy's neck as they would for a bronchoscopy, so they can get a "virtual bronchoscopy" with minimal risk.

Today they went to schedule the CT scan and asked for an appointment within two weeks. The doctor told us that we should expect it to be right around two weeks but instead, she was able to get an appointment for tomorrow! So tomorrow at 10am she's having the scan. It is the safest option for right now but it's not entirely without risk. She will need to be sedated and will also need to be given some contrast intravenously before the scan, and she will need to fast for four hours before the procedure too. Please pray that it all goes smoothly!! If there are any complications they will cancel the appointment and reschedule.

The best result for the CT scan would be that both the ENT and the orthopedic doctors will be satisfied with the stability of both the cervical spine and also the airways, and obviously that's what we're hoping for. If that happens, most probably they will start trying to feed Maddy orally and she should be able to come home fairly soon. If the doctors are not satisfied with the results of the CT scan, we'll probably need to go ahead with other tests - most likely the bronchoscopy, in spite of the risks. I don't think that it should be necessary though given that Maddy is breathing quite well on her own - although she still does have a bit of the Stridor (the squeaky noises when she breaths).

I'm pretty happy that things are actually happening now. So much was depending on this one test that I was pretty frustrated that we were just in limbo waiting for it, and Maddy wasn't able to come home or start feeding orally or anything until we had the results of this test. We'll know the tentative results in the next couple of days and will be able to move on from there :)

Diagnosis Confirmed

2010-08-19T18:47:00.000+08:00

We got the results back today from the genetic test. It's confirmed that Maddy has Diastrophic Dysplasia. No big surprise there - it was nearly six months ago that I suspected that diagnosis in this post here. And since then, it seemed to be confirmed over and over in Maddy's symptoms so we weren't really expecting a different result. We don't have the results yet for Bernard and my genetic test - but 99% of the time, Diastrophic Dysplasia is an autosomal recessive disease - so both parents must be carriers. We will meet with the geneticist probably next week on Friday and should get the results to that then, if not before. I'd love to not have to worry about passing this on to our next child, because we would like more children. Chances are though that there's a one in four possibility of our next child also being Diastrophic. Many people would choose not to have more biological children with those odds - but DD isn't the worst thing that a child can be born with, so others still choose to have more children regardless of the odds.

In other Maddy news, she's starting to get the ear cysts which are very common among DD babies. The nurses have put a compression bandage over the affected ear so hopefully it doesn't scar into a cauliflower ear. The ear cysts usually last around 3 weeks or so and then heal with no permanent damage (apart from scarring - but the compression bandages should minimise that).

Also, the ENTs, orthopedic doctors and anesthetists will meet tomorrow at noon to discuss Maddy's neck issues - I'm not exactly sure what they're discussing because I thought it was confirmed that they were going to do the CT scan next. Maybe they're going to change that again on us, I don't know. But at least this meeting should finalise whatever they're going to do so that we know what's happening with her...

There's not much else new going on. Maddy is still stable, still off all the machines but still on the NG feeding tube. The occupational therapist still hasn't come to start the oral stimulation, hopefully that will start soon so that she can get off the feeding tube as well. She already does suck on a dummy (that's a pacifier for all you Americans ;) ) so hopefully she learns quickly and can get the feeding tube out soon :)

Three to Four weeks

2010-08-18T20:37:00.000+08:00

I asked the pediatrician today for his estimate of how much longer Maddy will need to be in NICU. He said probably another three to four weeks. I was pretty shocked - she's doing so great, she's not on any of the machines at all and is only on a feeding tube. She's meant to start oral stimulation any day now so that she can come off that as well and feed via her mouth instead.

I think that the doctors are being super cautious with her. Maddy is the first case of Diastrophic Dysplasia that they've ever seen so they are taking their time to do all the relevant tests and examinations, which all take time. They decided to cancel the MRI and to do a CT scan instead. They think it will be better for Maddy. I don't mind what they do as long as they decide what she needs done and then do it so she can come home already...

Maddy's two weeks old today - that means that she'll likely spend her first 5-6 weeks in hospital. It also means that we've got another three to four weeks of going up to the hospital every day at the same time for those ridiculous visiting hours (unless it becomes possible to breastfeed directly, in which case I'm allowed at any time and don't have to honour the visiting hours). Another three to four weeks of our lives being on hold...

When Maddy was first born, the pediatrician mentioned that she may be in for two weeks. Now that those two weeks are over, I can't believe that we're probably not even half way through this NICU stay...

Having a child in NICU is a weird thing... it's like having a baby but then not really having a baby. Our every day life is so similar to before Maddy was born, we have no newborn to feed every few hours, no little nappies to change, no stroller to push around as we go out. But my mind is on Maddy practically the entire day.

I know that in many ways, life will be "harder" once Maddy comes home. I know that she will be demanding (particularly if she's gotten used to being fed every 2 hours around the clock! That's not a schedule I relish). I know that we will have worries about her health too. But I feel as though our family is incomplete without her here...

I've heard parents who have lost babies talking about how they feel like they have empty arms. They have gone through a pregnancy and have no child in the end, and that leaves an empty hole in their arms and heart. Women aren't meant to go through pregnancy and not have a child to hold in the end. I don't pretend to know the pain of losing a child - but I do know what it's like to feel that emptiness, like something very important is missing.

I miss Maddy, and I don't want to go another three to four weeks before we can be together as a family for the first time...

Maddy Cuddles

2010-08-17T21:22:00.000+08:00

Bernard and I have both had the chance to give Maddy cuddles :) She's so snuggly, I can't wait to be able to get her home and snuggle with her on the sofa instead of the hard plastic hospital chairs!!

Here's some of the pics for you all to enjoy :)

In other Maddy news, I mentioned yesterday, she's now off all the machines other than the monitors. She is still being fed primarily through the feeding tube, however they're going to start "oral stimulation" with the occupational therapist soon to help her remember her sucking reflexes. She's very stable and I wish we could bring her home already. The doctors want to wait until after the MRI though which is meant to be another 2 weeks away. I'm going to keep asking them every day though, because in my opinion, if she's stable enough to be at home, and if there's no medical reason for her to be there other than just waiting for a test, I'd rather her be at home and I can bring her back for the MRI... I don't know if the doctors would be open to that but I figure if I keep telling them it's my preference (in a nice way of course), it can't hurt and it may help... I don't want for her to have to spend her entire first MONTH in NICU!! Especially if she's healthy and stable. We're hoping and praying that she can come home soon... we need more of those cuddles!!

Past, Present and Future

2010-08-16T18:56:00.000+08:00

On the 17th of February this year - exactly 6 months ago tomorrow - my life changed drastically. A couple of weeks before that, I'd had bad results in the OSCAR test and the doctor said we had a 1 in 7 chance that our baby had downs syndrome. After much thought and prayer, Bernard and I decided to go ahead with the amniocentesis so that we would know for sure. We knew that our OSCAR results were bad, but surely with odds of 1 in 7, that meant that we had a 6 in 7 chance that our baby was perfectly normal right?

And so six months ago tomorrow, we went for our appointment for the amniocentesis. However it wasn't to be. After a quick look at our daughter on the ultrasound (we found out that she was a girl), our doctor said that our baby did not have Downs Syndrome and instead had something wrong with her skeleton. It was outside of his realm of expertise so he would call around a few specialists and get me an appointment ASAP.

I went back into the waiting room knowing that something was wrong, very wrong. I couldn't contain my tears. After a couple of weeks of reading about Downs Syndrome, I had prepared myself to accept it, if that was the case. But this all of a sudden seemed so much worse.

The doctor got us an appointment with a specialist within a couple of hours, and off we went. That was when we first heard the term "Skeletal Dysplasia". We were told that the chances of our baby being "normal" were extremely unlikely. We were also told that we had a high chance that the baby would not survive the pregnancy, let alone be able to live once she was born. I went home and researched Skeletal Dysplasia and what it really meant, and I found there was a 30% chance of stillbirth and 25% chance that the baby would not make it longer than a couple of days. Our "odds" were probably even worse than that since we found out relatively early in the pregnancy. Usually if Skeletal Dysplasia is detected at 17 weeks gestation, it is bad news.

I spent the next month or two trying to prepare myself for the worst - but I never truly believed that our child would not survive. The thought that it was even a possibility tore me apart. But somehow I "knew" that she would make it. I also "knew" that she would not be like other babies, and I knew that there was a purpose in that, even though it would be a hard road for our family to walk...

As I look back to that time, it feels like it was a lifetime ago. There was a time when I was blissfully ignorant of all these issues. There was a time when I never thought it would happen to our family, that we'd be that statistic - the one in 500,000.

But as my daughter sleeps in NICU, I wouldn't have it any other way. It has been a difficult six months, probably the hardest of my entire life, I think. It is still hard now, not being able to change anything and just having to trust God and trust the doctors. I know that this journey has made us stronger, it has made me stronger. It has opened my eyes to issues that I had never thought about previously. I feel like being Maddy's mother has already made me a better person, and it will continue to do so as she grows up.

Today, I had the privilege of holding 12 day old Maddy for the first time. (I didn't have my camera, once again!! So you'll have to wait for photos ;) ) The first thing she did when she was placed in my arms was to let out a massive poop. It was so nice to hold her after nearly two weeks of waiting. I noticed she felt "different" to Lana as a baby. Her centre of gravity is so much higher. I'm sure that we'll get used to her differences soon though. I already don't notice her short arms and legs, and the different shape of her hands.

Maddy is doing awesome - she's now off ALL the machines, she doesn't even have the oxygen tube any more now. She's only connected to the monitors. She is still being fed by the NG tube, but they are going to start trying to feed her orally today. I hope that goes well - however she may have lost a bit of her sucking reflex since she has never been fed orally before, and also her cleft palate may make it more difficult as well.

The head of the NICU was back today and he is trying to coordinate with the other doctors a way to do Maddy's endoscopy and MRI. However, he was amazed at how much Maddy has improved in the past week. Her Stridor (noisy breathing) is already much less than it was a week ago and it is getting better every day. He also doesn't think that her cervical spine is as unstable as previously thought. Hence we are now able to hold Maddy. He doesn't think that either the endoscopy or the MRI are very urgent and his focus seems to be more on getting Maddy ready to come home. It was really a light at the end of the tunnel. I didn't get much time to talk with him as he was very busy on his first day back, but I want to ask him how soon he thinks Maddy will be ready to come home.

I'm so glad to know that Maddy is getting better and stronger and will be coming home soon. I don't know how soon, but I'm happy to wait for her. After all, six months ago we didn't even know if we would be able to bring her home at all. But now, the future looks so bright. I'm ready to begin life at home with our daughter and to see where this journey continues to take us :)

More Maddy pics

2010-08-14T22:41:00.000+08:00

Nanny had a great time visiting Maddy last week before she left Hong Kong

A big yawn from an alert little girl who is off CPAP

There, now you can see her pretty face better!

Hi Daddy!!

Daddy take 2

Mummy's turn

Now let's smile together for the camera :)

Having a heart to heart with my daughter :)

Hospital frustrations

2010-08-13T19:08:00.000+08:00

Madeline is 9 days old today. And for all the people asking, we decided on the spelling "Madeline". We always agreed on that spelling, but I had a freak out moment in labour where I asked Bernard "What do you think about the spelling Madelyn? I think I like it better." Actually, I prefer the more "traditional" spelling Madeline, but I don't want people pronouncing it as "Ma-de-Liiiine", and "Madelyn" is spelt more like it sounds...

Today when I went to visit our baby girl, I was happy to find her CPAP free!! They put her on a bit of oxygen though, but it's so nice to be able to see her face better now. Now there's just a very thin tube under her nose, that's all :) Unfortunately I forgot my camera though! She's looking really good though and is pretty stable too.

Yesterday I forgot my camera too and was kicking myself because yesterday she was so alert and awake my entire visit. And also yesterday was my first time to see her with the hiccups, and also to see her sneeze :) Silly little things I know, but when I only see my daughter for such a small amount of time, it is actually quite special. Yesterday as well, she was spitting up some milk so she even smelt like a regular newborn :)

I've got a few frustrations with the hospital at the moment. The first frustration is their policies on bringing in the breastmilk. I understand that they just want to make sure that it's all safe - but they don't accept breastmilk storage bags, only bottles. And they only accept frozen milk as well. And it's one bottle for one feed only, they'll throw out any remaining milk.

I'm currently doing great with pumping, I'm pumping about 800mL a day and Maddy's only drinking 480mL a day. Yesterday she was drinking 60mL eight times a day, so I was putting around 100mL into 8 bottles, knowing that they'll throw out the extra 40mL but at least I know they have the milk there if they wanted to increase her feedings.

Anyway, I went in today and the nurse told me that they're now feeding her 40mL twelve times a day. So what that means is that in the past 24 hours, they've given her the eight feeds that I sent up pouring out 60% of the milk, but then also feeding her another four formula feeds. I know it's just a stupid thing, and that formula isn't going to kill her. But I hate knowing that I have plenty of milk that she should be drinking that would be better for her than formula, but because of the hospital policies, they pour out that milk and give her formula instead. I'll have to bring up 12 bottles a day now, and then when the pediatrician changes the system again, it will probably mess up how much milk I've been putting into each bottle, and then they'll have to feed her formula to make up for it. It's crazy... I know I shouldn't let it bother me but when I'm pumping for hours each day, waking myself at 4am to pump, knowing that this is the ONE thing I can do for my daughter, it really gets on my nerves that they're not giving her that milk and pouring it down the sink instead.

My second frustration at the moment is that the doctors are at a headlock as to who is going to do the next tests on Maddy. She needs two things assessed - her airways and her cervical spine. The ENT wants to do the endoscopy to see her airways, and the orthopedic doctors want to do an MRI to assess her cervical spine. For both procedures, she will need to be sedated by the anesthetist. The ENT is refusing to do the endoscopy until the orthopedic doctors assess the spine, the orthopedic doctors are refusing to do the MRI unless Maddy is sedated, and the anesthetist is refusing to sedate Maddy until she knows the state of Maddy's airways and the results of the endoscopy. So no one wants to make the first step there.

The pediatrician has been trying to get those three departments to sit down together and find a workable solution, but so far he hasn't had any luck there. The head of the NICU department is away at the moment but will be back on Monday and the pediatrician we've been talking to is hoping that he'll be able to help get it all done somehow.

In the meantime, we're pretty much just waiting for the results of those two tests. I asked the doctor when we'd be able to hold Maddy now that she's off the CPAP, but we can't until we know the state of her cervical spine. I asked him when they are going to try feeding Maddy by mouth rather than by the NG tube and he wants to know the results of the endoscopy before they do that.

I asked how much longer Maddy is likely to be in for, and his vague answer said that they had no immediate plans for her to come home. I think it will probably be at least another 2 weeks.

So that's where we're at right now. Maddy's getting stronger and looking good. She's getting more alert. But we're just waiting on the results of a couple of tests before they can start thinking about managing her condition and sending her home with us.

Please pray that the doctors can work together to find a solution so that Maddy can get these tests done soon, and that the results of the tests will be good so that she is able to come home soon. I really miss her...

One Week Old :)

2010-08-11T18:16:00.000+08:00

Today is Maddy's one week birthday :) Bernard also went back to work today so I went to visit Maddy by myself. I'm so tired of the whole NICU thing. Some parents have to keep their babies in NICU for months though - so I should be counting my blessings that Maddy is overall pretty healthy and should only be in there for weeks, not months...

In the last week, I've seen babies come into NICU and babies leave. When we first were there a week ago, there were mainly bigger babies but now there are a bunch of new little premies... I have no idea exactly how premature they are, but Maddy would easily be four to five times the size of the smallest one (although they're probably the same length!!)... I know that really Maddy's very healthy compared to some of those little ones...

Maddy is still doing pretty well - getting stronger and healthier. She's now up to 60mL per feed, 8 times a day!! And she is completely off the IV as well. Her CPAP has been turned down once again - although the setting it is on now, you can still hear her wheezing - but her oxygen stats are good even with the wheezing noise.

I've been a bit worried the past few days that Maddy may need a tracheotomy - that is one of the ways that they treat the tracheomalacia "floppy airways" issues that she is having. Although her endoscopy isn't for another week and if they keep turning down her CPAP, I think she should be fine without the need for a trach.

The orthopedic doctors still haven't really given an assessment of the spine. A few orthopedic doctors have come to see her, but none of them really have the expertise to comment on Maddy's cervical spine. There are some who are experts in pediatric orthopedics, and others who are experts in spine orthopedics, but as our pediatrician said, we need the right doctor who has the right expertise in pediatric spine orthopedics to be able to give his assessment of Maddy's spine. So far, they haven't found that doctor, or he hasn't come to see Maddy yet. It's frustrating for me because so much is hanging on that particular assessment, and it feels like we are no closer to getting it than we were a week ago.

Maddy's still being treated for the jaundice, but she's not even looking very yellow now - I think most likely she won't need the phototherapy for much longer.

I have to keep reminding myself that this NICU thing is not forever, it is just for a couple of weeks. And I know that it is the best place for Maddy for now. Yesterday when we went to see Maddy, she was particularly wiggly and got out of her CPAP too many times to count. She was also pretty cranky and so she'd get herself worked up and cry really hard - and every time she did that, you could see her oxygen stats dropping. She's fine off the CPAP if she's not crying and just breathing calmly (although it is still obvious that her breathing is not "normal"), but as soon as she gets cranky, her oxygen levels go down. It helped to remind me that she does NEED to be there for now. So I know that I need to be patient about it all, even though it's very hard!!

Five Days Old

2010-08-09T21:16:00.000+08:00

I've been trying to update my blog every day because I've got so many people asking after Maddy - and it's easier to update here than to explain it over and over again.

Maddy's still doing pretty well, pretty stable. I noticed today that they've decreased the pressure on the CPAP machine again, so that's one step in the right direction :) I'm a bit frustrated though because at the moment, the focus is on keeping her stable and letting all the specialists from every department come and examine her in their own time, rather than on getting her ready to come home. But then again, I also know that Diastrophic Dysplasia is extremely rare and all of the doctors (apart from the geneticist) have never seen a case before, so I understand them needing to spend more time examining Maddy.

Maddy's eating pretty well at the moment too. The other day, they started feeding her 10mL each feed, 8 times a day, then they stopped for a day or so because of the concern over the neck issues but they started again - yesterday she was on 15mL each feed, and today she's on 25 or 30mL a feed :) I'm expressing and bringing milk up for her so I'm glad to be doing my bit to help her get stronger :) It's one of the small things I can actually do for her at the moment... I don't know if I mentioned before, but Maddy was born with a cleft palate - something that we knew could possibly be an issue before she was born. So breastfeeding will likely be difficult, if not impossible, even after she is out of the hospital. But we'll cross that bridge once we get to it. For now I'm preparing myself to pump long term and if it turns out I don't have to, then that's an added bonus.

Today we had an appointment with the anesthetist and the ENT. Maddy has what is called Stridor which is a high pitched whistling sound when she breathes. Normally, the ENT would do an endoscopy, where she looks at the airways with a little camera in order to find the cause. However with Maddy's neck instability, it could be dangerous to do this. They have tentatively booked her in for the procedure next week on Wednesday but are waiting for the opinions of the orthopedic doctors about her neck instability first. The appointment was in order to explain the endoscopy to us and explain the risks (which include "sudden death" - not something you want to hear when talking about your 5 day old daughter). I figure though that if Maddy was fine with delivery, hopefully that means the neck is stable enough for this procedure because it will help us to know how to manage Maddy's breathing issues long term.

Maddy is also slightly jaundiced and is now under the phototherapy light. I guess it is to be expected when they didn't feed her for the first three days or so! In comparison to her other issues though, the jaundice is a mild thing which is easily corrected, and she's in the hospital anyway so it doesn't really make that much difference whether she's there under the light or not. And now that she's under the phototherapy and eating better, I'm sure it will pass quickly :)

My mum left Hong Kong today after being here for a bit over two weeks, and Bernard will go back to work on Wednesday, so it will be a bit crazy around here I think. I'm so glad that we hired a domestic helper though, it makes it so much easier for me to get up to the hospital. Without help, it would be near impossible since I can't take Lana at all. I need to go to the hospital every day to take my milk up, and we don't live particularly close to the hospital unfortunately!!

Please keep us all in your prayers, we really appreciate all the notes and emails we've been getting as well - even if we haven't been able to reply to everyone individually.

Day Three

2010-08-07T21:25:00.000+08:00

Today I had the pleasure of seeing my little Maddy twice :) (usually we only see her once because of the strict visiting hours at NICU). I wanted to take some milk up for her in the morning and got to sneak in as well (even though it was outside of the visiting hours). She was awake and looking around, although she couldn't see much because she was laying mostly on her stomach. It was cute to see her little eyes though, I don't think I've seen her with her eyes open before :)

Maddy's still pretty stable, not much change there. They did stop feeding her orally though for now, I think they want to take it slow, just to be safe. They want to avoid intubation so they're not pushing her too fast, they're not in a hurry to take her off the machines until they know she'll do great off them, and now there are still many unknowns.

They did end up managing to get the blood from her for the genetic test, so they'll send that off and we should know the results within a week and a half or so. Everyone's pretty confident that it's DD though, I think we all would be surprised if it's not. Plus, I don't think that they have any second guesses - so if it's not DD it will be back to square one!

I also asked the nurse today how long Maddy was. When she was born, they had other priorities than measuring her, so we didn't find out on day one and I hadn't remembered to ask again since. I knew that she'd be short because her legs are so short, but I wanted to know exactly how short she was. She's only 39cm long - which I think is pretty average for DD babies. But it explains why she's so rolly polly - she's got 8lb of weight (a bit above average for full term babies) squished into the length of an average baby born at 29 weeks gestation!!

In non-Maddy news, we had tickets to take Lana to go see Sesame Street Live, Elmo grows up. We bought them knowing it was right around my due date, but thinking that if Bernard and I couldn't go, we could give the tickets away, or have my mum take Lana to see the show instead. With all that's been going on, we thought it was important for Bernard and I to take Lana and spend some quality time with her as well. She had a great time joining in the singing and pointing out all the characters. When it was finished, she burst into tears - "More Elmo?? More Elmo??" She was not happy that it was over!! It was great to spend some time with our big girl because I think she's had a bit of a hard time with me being in the hospital, and then with Bernard and I leaving her for a few hours every day.

Another thing - my mum is going home on Monday. She has been a great support to me over the past couple of weeks during the end of my pregnancy and the birth of Maddy. She's been great with Lana too, she's now officially better at putting her to bed than Bernard or I ;) One thing that was difficult for her (and also for me) was that because of the NICU visiting rules, she wouldn't be able to see Maddy before she left. They only allow parents, unless the baby has been there for over a month - then after that, grandparents are also allowed. I talked to the nurses though and explained the situation and they are going to allow Mum to come and visit as a special exception. I'm so thankful that Mum will be able to see Maddy before she goes home :)

I think that's all my news for today :) Keep praying for Maddy, I'm sure that this time will pass quickly and before we know it she'll be coming home with us :)

Two days old

2010-08-06T22:48:00.000+08:00

We went to see Maddy again today and we're pleased that she's doing well. The CPAP machine was originally giving her 50% oxygen but now it is down to only 21%, the same as we all breathe. Her blood oxygen levels are great too, her lungs are doing their job well. The main problem is her airways though - the pressure of the air coming out of the CPAP machine is helping to keep her airways open so that she can breath well. The airways are a bit like a floppy straw that tend to narrow when air goes through them but with a bit more pressure, they can stay open well.

We had an appointment to talk with the geneticist today and he talked with us through all the x rays that were taken yesterday. He is fairly convinced that Maddy has Diastrophic Dysplasia and blood tests will confirm whether or not that is the case. Bernard and I got our blood taken today because this is a recessive disease which means that we both would most probably need to be carriers in order for Maddy to have inherited the disease from us. They will try to take Maddy's blood in the next couple of days - but they need between 2-3mL of blood for the test which can be difficult to get from a newborn. Once they have her blood, they will send off all our samples together and we should have the results a week and a half later.

One bit of good news about Maddy is that they've started feeding her orally now. She seems to be tolerating it - although she needs to be fed by a feeding tube directly into her stomach. Hopefully the food will help her to get stronger :) It means that I need to be more disciplined about expressing - I haven't been as good and consistent as I should have been because I've got so much on my mind and so much to do as it is.

While we were there today, Maddy seemed to be much happier. She was sleeping a lot, which was nice to see because on most of our other visits, she's been crying and struggling against the machines. I didn't want to disturb her though so we didn't spend as much time patting her back and tickling her toes as we have on other visits.

The x rays that were taken yesterday gave us a bit more of an understanding about her condition. One of the main things that is of concern is her cervical spine (the neck area). The vertebrae in this area are misshapen and there is one particular area which appears quite unstable. This is quite common in DD babies and they often wear special neck braces that help to give them extra stability. The danger is that if this instability becomes a dislocation, it may cause the bones in the neck to press on the spinal cord possibly causing things like permanent paraplegia.

We had a bit of a fright tonight - Bernard had a call that went like this:

Nurse: Bernard? This is the hospital, the doctors need to urgently speak to you about your daughter.

Bernard: Ok, let me talk to them.

Nurse: They'll call you back soon. *click*

Talk about getting our hearts racing! We lasted about 2 minutes before we called the hospital directly to ask how Maddy was doing. Turns out she was fine, as stable as she was this afternoon, the doctor just wanted to discuss her case with us.

It was another half hour before the doctor called us back so I'm glad that we at least knew that Maddy was ok! The doctor actually wanted to talk to us about the dangers of the cervical spine so that we are fully aware in advance. The problem for them is that since Maddy is having trouble with her airways, IF something happens and the CPAP is not enough to keep her airways open, they may need to intubate her. Intubating will require moving her head around in order to get the tube down to her lungs - and in doing so, they may inadvertently cause her spine to dislocate since it is already unstable, possibly causing damage to the spinal cord. If there is the need for this, they will just need to go ahead and do it because it would be a life or death situation for Maddy - but we need to know the risks in advance. It's definitely scary for us, so let's all pray that she WON'T need to be intubated - or worst case scenario that God will guide the doctors' hands so that nothing goes wrong. If she does need intubation, we will likely be informed after it has happened because at that particular time, all of their energy will go to looking after Maddy, they may not have the resources to spare to contact us at that time. And while that's hard to know, it's the way it should be. I don't want their care of Maddy to be diminished because of my "need to know". It is definitely sobering though... even though Maddy is doing well now and is pretty stable, she is still quite delicate and she's not completely out of the most dangerous stage yet.

I know that through all of this, God has brought us this far and he won't leave us know. He's given us so much strength, more than I thought was possible. And I know with all my heart that He has a purpose in all of this. I might not understand it exactly but I need to trust Him.

The night that Maddy was born, I was pretty emotional about her health and as I was praying after I had visited her in the NICU, I said to God, "She's not mine, You gave her to me and I dedicate her back to You. Her life and all that it involves belongs to You and I need to trust that You have a plan for her and You will look after her and give us strength to be the best parents we possibly can be for her." I have to keep reminding myself of that because there's not that much I can do for Maddy at the moment except for love her. I can't hold her, I can't feed her, I can't bathe her. The medical staff are doing all the day to day things of looking after her, and they're doing a much better job than I would be able to do in her current delicate state. I just need to keep loving her and keep trusting that God is watching out for her. I know that He is :)

Maddy Pics!!

2010-08-06T19:10:00.000+08:00

Here's our first picture of Maddy, one day old in the NICU.

She's a chubby baby - part of her condition means that she's got a lot of excess skin. I think it's cute ;) She'll grow into her skin with time ;)

Her bed is kept under this cling wrap. I haven't asked why yet! The nurses let us take it off her so we can touch her and hold her hand though.

There, now she's uncovered :)

The CPAP machine helps her airways to stay open so that she can breathe stronger. Maddy has a velcro headband that holds it in place. Stylish!! Looks like she's just been to the gym ;)

She doesn't really like the CPAP and wiggles around so it will come off.

Here's all her machines - she's already got a few computers especially for her!!

This is what Daddy sees when he's sitting down looking at his angel :)

The NICU ward

Maddy after she successfully wiggled out of the CPAP ;) I think she looks like Lana!!

Maddy - one day old

2010-08-05T22:14:00.000+08:00

I just wanted to update about Maddy's condition today. Last night, it was a bit difficult for us to hear that Maddy had been transferred from the Special Care Unit to the NICU. In my mind, I thought there were two levels in the SCU/NICU. I thought that SCU was where the babies are for observation when they're not that sick, and that NICU was for the babies who were critical and in danger of dying. And although there are some truths in that, I was thinking about the two extremes of both NICU and SCU. Maddy isn't in a critical condition at all, I think that they just don't use the CPAP machine in the SCU wards and so she's in the "least serious" NICU ward there. The other babies in there with her aren't the delicate, frail premature babies fighting for every breath but are also mostly full term and not very seriously sick.

Overnight, Maddy was pretty stable and by morning, they had even turned the CPAP down a bit. The doctor is going to be weaning her off it slowly. Maddy doesn't like the machine at all, she fights against it and cries quite a lot - but when she actually succeeds at ripping it out, she calms down and is happy. I know that's a good sign ;)

Maddy's already had quite a few specialist visits, and has even more lined up. She has seen (or will see in the next couple of days) the radiologist for a full skeletal survey (x rays of her entire body), the ear nose throat specialist, the geneticist and the orthopedic doctor (whatever the proper name for that is). I can't remember if there are more than those. She's mostly in the care of the pediatricians and nurses at the NICU though and they're really good with her. The pediatrician is a sweet heart - I was talking to him last night and he said to me "She really is a sweet little thing, isn't she?". She's in good hands there!

I came home from the hospital today - I asked for an early discharge because there's not much that I can do for Maddy at the hospital. I will be there every day and will be making sure I know medically what's going on, and I will be pumping and taking milk up for her - but I know that I can look after myself better at home where I can rest, eat good food and be with my family instead of alone in a hospital ward, unable to sleep because of the cries of other peoples babies when my own is four floors above me.

It was hard to leave Maddy in the hospital, but I know that's where she needs to be to get the care she needs right now - and it's only for a time, until she gets a bit stronger. I know I could be anxious about it but really I'm not. I knew that this might be necessary for her, and so we were a bit more prepared for it. Neither me nor Bernard have held her yet - although we've tickled her feet and patted her on the back lots. She is on an IV drip and can't have anything orally until her breathing is a bit more stable, but I'm pumping for when she can eat and drink because I know that's the best thing for her too.

I know that most mothers don't go through this kind of thing with their newborns, but I know that Maddy isn't like most babies... and most babies like Maddy do need a bit more care and attention as they transition into the world. It's only for a time and we know that she'll be home with us as soon as she can be :) She's going to be ok :)

An email from Bernard

2010-08-05T21:05:00.000+08:00

Bernard wrote this email the night that Maddy was born (ie, last night) and I thought it was so great that I got his permission to post it on my blog too. I want to set him up as a contributor on my blog but he said he wouldn't post - so I'll just have to post his emails myself ;)

Dear family, relatives and friends,

I just wanted to let you all know that our little girl Madeline (or Madelyn - we're still deciding on spelling) arrived at 4:53pm today. She is by-and-large quite healthy so we're all really grateful and thankful for that.

As some of you may know already, the doctors had suspected that Maddy might have a form of skeletal dysplasia called "diastrophic dysplasia" (also called "DD"). (I guess a number of you might have been following Nicole's blog (http://nicolejoy81.blogspot.com) about our journey through this situation but I thought I would send around an e-mail for the benefit of those who don't follow it.) DD is s a genetic condition, and what this means is that there may be complications with the formation of her bones (which can affect her height and appearance). We found out at 17 weeks that Maddy might have this condition - but we nonetheless decided to continue with the pregnancy. It wasn't an easy decision, but we knew it was the right decision to make. And it's certainly been a rough ride for us (and family also), and we're extremely grateful to everyone for their prayers and support.

Anyway, since DD affects the formation of the skeletal structure, one of our biggest concerns was that Maddy's chest wouldn't be large enough for her lungs. Well, the doctors and the consultants have had a look at her and they think it sort of looks ok. But having said that, Maddy's been moved to the NICU (Neonatal Intensive-Care Unit) for observation because she's having trouble with her breathing now - they've put her on CPAP (see http://en.wikipedia.org/wiki/Positive_airway_pressure) to try to help improve her breathing. The doctors have said that we might need to be prepared for this (i.e. the issue with her breathing) to be a long journey.

I suddenly remembered reading someone else's blog (see Lindsey's blog at http://eviejayne.blogspot.com/2010/07/prodigal-daughter.html) a month ago or so, in which she shared her thoughts and fears about her daughter who has another form of skeletal problem. I read her post and cried - and I realized that's what I need to do. I need to nail my fears and burdens on the cross. You see, Nicole is quite vocal and outspoken, and in her blog, she explains a lot about the condition our Maddy has, and she also shares a lot on how she's been feeling personally. I, on the other hand, tend to be a bit more reserved and I'm not really that much of an open book for all to read. I tend to let people only see the calm exterior, even though a whirlpool of emotions may be churning up inside of me.

Which makes this next part a bit out of character, but I also need to nail them to the cross. So here goes:

I'm a bit scared.
Ok, I'm actually very scared.
I'm scared of not knowing how Maddy's breathing is going to be.
I'm scared of not knowing how to deal with Maddy's skeletal issues.
I'm scared that I can't control things.
I'm scared that I don't hold my destiny in my own hands.
As a daddy, I just want my little girl to be ok.

Lindsey also mentioned a Scripture in her blog which really spoke to me:

When I am afraid,
I will trust in you,
In God, whose Word I praise,
In God I trust, I will not be afraid.

~ Psalm 56:3

So yes - I'm afraid. The little girl whose medical condition frightened me 6 months ago is the same little girl I can't bear to lose now. I'm afraid that my little girl will slip through my hands like a vapour in the wind...

But I'm so grateful that someone greater than I is holding my little girl in His hands. Someone greater knows how it's all going to turn out. Someone greater is the author of my little Maddy's destiny. So while I'm scared that my hands are enough, I have a blessed assurance that His hands are larger than mine, and that He'll look after Maddy and my family. Isaiah 59:1 says this about my God: "Behold, the LORD'S hand is not shortened, that it cannot save; neither his ear heavy, that it cannot hear."

So yes - I'm afraid. But when I am afraid, I will trust in the Lord. I will trust in Him and not be afraid.

Please continue to pray for Maddy that she'll breathe strongly and independently (without the need for any assistance), and that her breathing will stabilize very quickly.

Thank you all for the support you've been over this period.

Lots of love,
Bernard and Nicole (and Lana)

She's here!

2010-08-04T22:38:00.000+08:00

Our little girl is finally here! Maddy (her name's Madeline or Madelyn - we haven't decided which spelling yet) arrived at 4:53pm today. The doctor's expected her to weigh around 2.4kg - so imagine our surprise when they told us her weight was 3.62kg (which is even heavier than what Lana weighed at her birth)! She also scored slightly higher on the APGAR test than Lana did (scoring around a 9 out of 10 or so) so that was good to hear. There are still the skeletal dysplasia issues but I guess that didn't really catch us by surprise.

The main thing however is that Maddy is having some issues with her breathing now - I went to check up on Maddy later in the evening and found that they had moved her into the NICU ward for observation. She was breathing via CPAP. That's the main thing we're concerned with right now - once she's stable in that regard, we can start worrying about the other issues. She's our little girl - and we just want her to be all right.

So we would appreciate if you could all please continue to pray that her breathing stabilizes and that she can breathe strongly on her own. After all, our little Maddy is a fighter and she's strong. It's hard for her daddy to see her struggle, but whatever happens, I am supremely confident that God knows what He's doing.

Thanks everyone for your love, prayers and support. We'll keep you posted as things progress.

Love,
Bern (and Nic)

Inducing!

2010-08-03T19:02:00.000+08:00

Just thought I'd write a quick update, I'm currently at the hospital and will be induced tomorrow morning. I've already had the prostaglandin gel to prepare the cervix - there's a chance that in itself will get things moving. I'm already feeling a bit crampy and all that, so maybe - hopefully! If not, I'll have the pitocin in the morning and baby girl should be here by tomorrow night!! I'm so glad that we will finally be able to meet her.

Thank you all for all your prayers and support over the past 6 months or so. If you can please continue to pray tonight and tomorrow for the safe arrival of our daughter, for a smooth and uncomplicated labour and delivery, and that she will be healthy when she gets here, able to breath normally.

Looking forward to being able to update with news of her arrival!!

I blame Bernard ;)

2010-08-01T21:25:00.000+08:00

When we first found out I was expecting again, at our first Doctor's visit, he said the baby would be due in the last week of July or the first week of August. He said that the most accurate time to predict the due date was at the 12 week scan though. At our 12 week scan, the "accurate due date" was given as July 28. For some reason though, whenever someone asked Bernard when the baby was due, he would say "early August". I corrected him over and over because I was "sure" that the baby would be born in July. After all, Lana's due date was also the 28th (but of October), and she was born on the 24th. Even if this one was a whole week later than that, it would still be born in July, not August. Because surely you're "similar-ish" from one pregnancy to the next right?

I was so wrong though. It's now the first of August and the bub is still not here, she's now 4 days late. A couple of weeks ago, I was "sure" that she was coming any day now. My prediction was that she'd be here on the 20th - I really felt that she'd be earlier than what Lana was. Now if she doesn't come in the next few days, I'll likely end up being induced!!

It's funny though, a couple of weeks ago, I was really anxious for her to be here. I was expecting it at any moment. And now that I'm overdue, I'm actually less anxious and impatient. I'm glad that she decided to wait - last week we were all so sick, now we're all doing much better. But it feels like the birth is getting further and further away instead of closer and closer. I know that it will almost definitely happen some time this week though. If not naturally, then I think they'll want to induce this week. I'm hoping and praying that it will happen naturally though!

So a note for all the ladies: mother's intuition isn't all it's cracked up to be ;) At least for me in this area anyway. I expected to go late with Lana and I was wrong. I thought that this baby was a boy and I was wrong about that too. And I was sure that this one would be around a week early and I was wrong there too. Maybe there's something to be said for father's intuition - because Bernard's been far more correct than I have been! Or maybe he just jinxed me ;) Anyway, I blame him ;) ;)

Sick, sick, sick

2010-07-27T22:52:00.000+08:00

With my due date coming up tomorrow, sickness is the last thing that I want to worry about in our house. For one, I don't want anything to infect our newborn and for her to start her life with some virus. And for two, I don't want any of our sicknesses to separate us from her when she's in the hospital, particularly when she's in NICU.

On Friday, however, our whole family took a trip to the doctor. For Lana, it was just to have a vaccination (which she was amazingly good for, didn't cry at all - since she was promised a chocolate which she was staring at during the needle ;) ), I had been starting to come down with a cold, and Bernard had a weird kind of nerve pain in his leg. The doctor told us that I seemed mostly ok, and Bernard probably had some infection in his nerve - but we had to watch for a rash because it may be shingles.

The weekend was downhill for both of us - I started sneezing and coughing, and Bernard was feverish and had a bad headache which kept him in bed for a lot of the weekend. And on Sunday, he started developing a rash as well.

I know that for colds such as mine, there's not much that a pregnant lady can take other than to relieve the symptoms - so I spent the weekend sucking on Strepsils and drinking lots of water. Fortunately for me, the cold seems to be pretty mild and I'm 99% better now with just a little bit of residual congestion.

Bernard on the other hand went back to the doctor on Monday and it was confirmed that he has shingles. He's now on antiviral medication and has some cream for the rash and pain medication for the headaches. Fortunately it's not very contagious and it also seems like he has quite a mild case. Also it's in his benefit that he got the antiviral drugs early and has been able to rest for the past four days - although he will probably go back to work tomorrow, even if it is just for a half day.

Now I'm glad that the little girl hasn't come yet - and I'm kind of hoping that she'll give us another couple of days to recover a bit more. But only a couple of days - I'm hoping she'll be born before the weekend, if I have any say in the matter ;)

39 weeks, 2 days

2010-07-23T15:43:00.000+08:00

Today, I'm 39 weeks and 2 days. When I was pregnant with Lana, I was 39 weeks and 2 days when my waters broke. I was induced the following morning and she was born that night (at 39 weeks and 3 days).

I was so sure that this bub would come earlier than Lana did - with Lana, until my waters broke, I had no pre-labour symptoms at all. With this one, I've been having irregular contractions, some quite painful, for a couple of weeks now. I also feel like this bub is much lower than Lana was as well.

I was really hoping that this baby would wait until my sister left Hong Kong, and I was a bit worried because I felt like she might not be able to wait - however my sister left on Monday and 4 days later, I'm still here.

My mum is getting to Hong Kong tonight, she will be here for 2.5 weeks. I was pretty sure that the baby would be born before she got here. Now, unless I go into labour right now and the baby is born within 7 hours, it's not going to happen! The good thing about that is my mum will be able to see me visibly pregnant. Throughout my two pregnancies (three, if you count the one we lost at 6 weeks this time last year), I've only seen my mum once - and that was when she came over in February. She came to be my moral support when we were meant to have the amniocentesis, which ended up not happening - instead we found out about the skeletal dysplasia. I was only 17 weeks then, showing slightly - but the bub wasn't really kicking very hard then, no where near hard enough for Mum to be able to feel.

Because I was expecting this baby to come early, I already feel like I'm overdue - but in reality my due date isn't until next Wednesday, and my next doctors appointment isn't until August 3 - and I'm now wondering how late I'm going to go! Usually the doctors here won't let you go more than a week late (which for me would be August 4) without starting to induce. I'm really hoping that I don't go that long because I'd rather have Mum here when the baby's born than just sitting around waiting for things to happen!! And she's leaving on the 9th.

I know that ultimately, baby will come when baby is ready - but in the mean time, I'm drinking my raspberry leaf tea (which hasn't been shown to do that much anyway - but it can't hurt) and hoping that she comes soon - because I'm so ready!! Although my hospital bag is STILL not completely packed ;)

Waiting

2010-07-18T15:17:00.000+08:00

John Waller - While I'm Waiting Lyrics
I'm waiting, I'm waiting on You, Lord
And I am hopeful, I'm waiting on You, Lord
Though it is painful, But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience

While I'm waiting, I will serve You
While I'm waiting, I will worship
While I'm waiting, I will not faint
I'll be running the race, Even while I wait

I'm waiting, I'm waiting on You, Lord
And I am peaceful, I'm waiting on You, Lord
Though it's not easy, But faithfully, I will wait

This song has been in my head lately. There's 10 days today til my due date. Lana was born 4 days early, so if this one is the same, then I've got less than a week til this one will be here. In some ways I feel so ready - this pregnancy has been so long and so emotional for us and I'm ready for our little one to be here so we can start our life together with her. But in other ways I don't feel ready at all - I still feel in so many ways completely unprepared. Actually, I still haven't even finished packing my hospital bag yet. Sometimes I feel like I could go into labour any time - I'm having far more contractions than I did with Lana at this stage (or maybe I just recognise the signs more this time around), but then I also feel like it might happen a bit later this time as well.

I guess there's not much really I can do at this stage besides just waiting. And packing my hospital bag. But mostly, I know I just need to wait...

Dwarfism: Disease, disability or just different?

2010-07-13T12:45:00.000+08:00

I don't pretend to be an expert on the subject of dwarfism and skeletal dysplasias. I've just been thinking about this subject for a while. I'm part of a yahoo group called "Parents of Little People" and these issues are some that they have recently been talking about. I'm not even yet a parent of a little person so obviously my experience is pretty limited but since I've been thinking about it, I figured why not write about it?

Many parents of little people seem to take offense to comments like "What's wrong with your child?" or "isn't it sad that he has that disease" etc. They say that their child is perfect the way they are and that instead of wanting to change the child, more effort needs to be focused into changing society to be accepting towards people who are different. There are things like extended limb lengthening surgery that can add up to a foot onto a person's height and while some people with dwarfism are pursuing the surgery as an option to help them become more "average height", most of the dwarfism community seems to be quite anti-surgery as the costs, risks and pain of the surgery are high and they can outweigh the benefits.

Back to the original topic though, is dwarfism a disease, disability or just a difference? I kind of think that in some ways it's all three, depending on what aspect that you're looking at.

A disease is anything in the body that doesn't function "normally". And ultimately, all forms of dwarfism are that. In proportional dwarfism, the pituitary gland doesn't release enough growth hormone which results in stunted growth. In other forms of dwarfism, there are other mutations etc that lead to the bones growing abnormally. Pretty much all forms of dwarfism come with their share of serious health risks, from things like hydrocephalus to sleep apnea, mobility problems and severe curvatures of the spine. I feel that "disease" deals a bit more with the physical aspect of a condition whereas "disability" describes more the social aspect of a condition (I don't know if that's really correct, or just my personal interpretation of it) and I do know that some people with dwarfism have very few serious health concerns associated with their condition - so I can understand why they may shy away from the term "disease" when physically they can function as well as someone without dwarfism. But I do think that in general, these conditions ARE diseases in the strictest sense of the word. I hope and pray that our daughter has as few health complications from her conditions as possible though!

Is dwarfism a disability? Again some people with dwarfism who can function as well as others without dwarfism do not like to be considered "disabled". Probably no one likes to be considered "disabled" though - but in reality, there are aspects of dwarfism that do fit the definition of disability. Their physical condition can impede their physical ability to do certain things since the world is set up for people who are a foot or two taller than them. On the simplest level, they may need a stepladder to do things that 95% of the population can do standing on their feet. They can drive, but the car needs to be adapted to them with extension pedals etc. The sad thing about the issue is though, many times someone with dwarfism is not treated as an "equal" when it comes to things like applying for jobs etc. They may be passed by even though they are as qualified as everyone else. When it comes to the term "disability", I think it's important to note that most forms of dwarfism do have some level of physical impairment which can usually be dealt with by simple things like stepladders, those extension grabby things (what are they called anyway?) and just plain common sense - but when it comes to the mind, dwarfism is not a disability in that area at all.

Are people with dwarfism just different to everyone else? I think that the real thing here is that this is how they want to be seen. Not as someone who is diseased. Not as someone who is disabled. But as someone who just happens to have brown hair while you have blond. Someone who doesn't wear glasses while you do. Someone who is a bit shorter than you but is completely your equal in every way.

Even though I do think that dwarfism does, in certain ways, fit into the category of "disease" and "disability", I understand why parents of little people don't like people putting their kids into those categories - it's because of the underlying things which say "your child is not normal" and "your child should be pitied" and "your child has such a hard life". I know that I get frustrated when I get those "vibes" from people. Yes, I do think that our child may have more obstacles to overcome, but I also believe that this will make her (and our whole family) stronger and that it will give us certain advantages through her differences as well. There are aspects to that which should be envied, not pitied.

There are people who are praying for us - but praying specifically for our child to be "normal". It upsets me to think that these people seem like they may not accept our daughter if she does not fit their perception of what "normal" is.

There are scriptures that say "And which of you by worrying can add one cubit to his stature?" (Luke 12:25, and virtually repeated word for word in Matt 6:27). We can't add any height to our daughter. And the bible tells us clearly that it's God who forms us in the womb - so He's the one who made her the way she is.

The bible tells a story of a man called Zacchaeus who wanted to see Jesus - but he was so short that he needed to climb a tree to be able to see Him. The bible doesn't specifically say, but I personally think that Zacchaeus may have had dwarfism. It's not common for the bible to comment on people's height, so when it does it usually is significant. It's interesting to note that in his encounter with Jesus, Jesus never "healed" him or made him any taller. He just accepted Zacchaeus as he was, and changed his life in the process.

Likewise, I love and accept our daughter however she is - whether she ends up being six foot tall, or only 4 foot tall. My prayer for her is that a) she is healthy (something that can be achieved regardless of whether or not she has dwarfism or not) and b) that God will use her life for His glory (maybe this is something that can be achieved specifically through her having dwarfism - I'll not limit God!). I hope and pray that all our family and friends can feel the same way about her.

I will trust in You

2010-07-09T10:41:00.000+08:00

I've been finding that the closer that I get to my due date, the more I have to deal with my crazy emotions and fears. I know that a lot of this is normal, pregnancy hormone related and every mother goes through it in the weeks leading up to when her child is born - but it is also augmented by the complications of the pregnancy and all the emotions that have surrounded that as well.

When I look back at the past 20 weeks since we first found out there were issues, it's a bit like I'm looking at someone else's journey, not my own. I am amazed by the strength that we have found through it all - strength that I'm sure has come from our faith in God and from the prayers and support from many family and friends, some who we have only met because of this situation.

But we are still human and we still have fears, we still are experiencing that sense of loss... We still struggle with the fact that if we could have chosen whether or not we would be in this situation, we wouldn't have chosen it. No mother wants to think about her child being born anything less than "normal" and "perfect" and "healthy". No mother wants to imagine her child growing up different and wondering what cruelties they will have to endure, wonder whether life will treat them fairly, whether they will find love and happiness - knowing that much of this will likely be more difficult for them, just because they look different, even though inside they're just the same as everyone else...

Yesterday I was catching up on my blog reading and I came across one of my favourites - the blog of little Evie Jayne - Evie was born 9 months ago and her parents were told that she would not survive her first day but the diagnosis the doctors gave was incorrect. She's now a happy and adorable 9 month old. I've always loved this blog because of the faith and strength that her mother, Lindsey, has shown through all the struggles they've had. And they have the most adorable pictures on their blog too (I should be inspired - I've rarely posted pictures here!)

Yesterday, Lindsey wrote a beautiful post entitled the prodigal daughter. It talked about how she is struggling with the fears and worries of Evie's upcoming surgery (she needs surgery on her skull on the 16th, so if anyone needs another prayer point, please pray for little Evie and her family!!) and how we can give our worries to God and "nail them to the cross". I could relate because I have so many things that I am scared about with the birth of our child, so many things that I can't control, so many things that aren't ideal. So like Lindsey, I choose today to give my worries to the Lord and trust that He has a plan for our lives. I'll rely in the knowledge that He will work everything out for good.

Psalm 56:3

When I am afraid,
I will trust in you,
In God, whose Word I praise,
In God I trust, I will not be afraid.

Visitors

2010-07-07T10:13:00.000+08:00

On Monday, the first of our pre/post-baby visitors arrived. My sister is here for 2 weeks while she's on school holidays. She's just started high school so it's harder for her to take time off during the school term, so instead of coming with my mum later on, she's coming first before the baby is born. Hopefully the baby doesn't decide to come while she's still here for two reasons - one, the bub will be bigger and hopefully more healthy if she comes a bit later, and two, we're going to dinner at Disneyland with some of Lana's friends and their families on the 18th and it'll be a lot easier if the baby's still inside rather than here already!! It reminds me of when I was pregnant with Lana, I planned to go to a Chris Tomlin concert when I was 38 weeks pregnant and once I passed that milestone, I was ready for her to be born any time after that. So my sister will leave on the 19th and my next prenatal appointment is on the 20th. I'm aiming to go into labour on the night of the 19th so I can get my sis to the airport fine, then I don't have to go to my prenatal appointment. That's the plan ;) If only it was that easy ;)

After my sister leaves, I have a few days before my mum gets here. She arrives on the 23rd and will be here for just over 2 weeks, leaving on August 9th. If the baby isn't here before Mum gets here, she'll definitely be born by the time that Mum leaves. My due date is the 28th and here, they don't tend to want you to go more than a week overdue. Lana was born 4 days early though, and hopefully this one will be similarly early (but not TOO early).

My mother in law will also come for a visit for two weeks in late August. The baby will be a few weeks old by then.

When Lana was born, we decided to have both our mums and my sister all come at the same time for 2 weeks. I guess we'll see after this time which way works better! The benefit of having them here separately is that we get more one-on-one time with each of them. Another benefit is that we won't need to get a hotel room for them all - something which was very expensive last time around! (plus now with just moving, our budget is much more tight so it wouldn't have been a viable option anyway). But some of the cons mean that it may be harder/longer to be able to settle into our "normal routine" with having 6+ weeks of visitors over the next 2 months. But then again, what is routine in the first month of a baby's life anyway?

Pediatrician Appointment

2010-06-30T12:15:00.000+08:00

Yesterday I had my long day at the hospital for my prenatal appointment and the appointment with the pediatrician. I was out of the house by 8:30 to get to the hospital by 9:30 - then my tedious prenatal appointment took until 11:30, during which time I actually saw a doctor for maybe 5-10 minutes. The rest of the time was just waiting for the slow cogs of the public health system to turn ;) I did manage to persuade the doctor though that I didn't "need" to come back in 2 weeks for another prenatal check up and would prefer to come back in 3 weeks (when I'll be 39 weeks pregnant) instead so at least I don't have to go through that so soon. When I was pregnant with Lana, I did these prenatal check ups at the Maternal Health Clinic 2 minutes from my house - and things there seemed to happen a bit faster as well. But because this is a more complicated pregnancy, I must go to the hospital instead. Although I don't really understand why because all the complications are with the baby, not with me.

Fortunately for me (not so for her), a friend of mine who lives 5 minutes from the hospital broke her foot a couple of weeks ago so she was off work - so at least I could go visit her and have lunch with her in between 11:30 and 2 when my pediatrician's appointment was scheduled.

At 2 I was back at the hospital for my next appointment - and I actually had to go and get admitted to the hospital for that appointment, although I never got given a bed or even got to wear that wrist bracelet they print up - I was actually only there for an hour.

It was really good to be able to meet with the pediatrician and talk with him about his expectations of what would happen after the birth of our baby. When she is born, the most immediate concern will be her breathing. Her ribs are still slightly restricted but it's impossible to tell before birth exactly how well she will be able to breath. If when she is born, her breathing is very affected, she will need to be immediately rushed to the NICU and we won't have any time with her in the delivery room. She may need to be intubated or put on oxygen to help with her breathing. However if her breathing is pretty stable, she will be allowed to stay with us in the delivery room for about an hour or so, during which time we can try to breastfeed or just cuddle and get used to each other a bit. Obviously we're hoping that her breathing is stable at birth!

Regardless of whether or not her breathing is stable though, she will need to spend probably at least 1-2 days in NICU/special care for observation and tests. The pediatric team will be looking after her most of the time but she will also have an orthopedist (bone doctor) who will do a lot of the x rays etc. Her feet are still appearing to be mildly clubbed so most probably pretty much from birth, she will need to have her feet splinted/put in casts to try and mould the feet back into a better position. This is usually done pretty soon after birth because the tendons and muscles are more relaxed then and can be manipulated easier.

The good thing is that the pediatrician does expect for her to be relatively stable and he expects that she most probably will only need to be in the hospital for less than a week. Of course all that depends on her condition when she is born - but it's still a nicer alternative than what we heard earlier in the pregnancy. Then the doctors couldn't even assure us that we would be bringing her home at all.

From the ultrasound, the doctor estimated her weight to be around 2.2kg or 4.8lb - which is still on the small side (average for 36 weeks is 2.6kg/5.8lb). I don't put too much trust in the accuracy of weight measured by ultrasound though - particularly in situations like this where the baby is not proportioned the same as an average baby. But hopefully she puts on a bit more weight before she is born - because generally speaking, larger babies at birth are healthier. I know that NICU often has "target weights" at which they will release a baby - and if a baby is small, even if everything else is looking ok, they will sometimes keep the baby in for a bit longer until they reach their "target weight".

I asked the pediatrician how often they had cases like this at their hospital. The hospital that I am going to is the one hospital in Hong Kong that has a great NICU and also specialises in high risk pregnancies, and the private hospitals would not accept cases as complicated as this - so pretty much, this hospital is where 90+% of these kinds of cases in Hong Kong would end up. The pediatrician said that they have milder cases of this kind of thing maybe 1-2 times a year (maybe something like Achondroplasia, the most common form of dwarfism) - but in our case, the limb shortening is much more severe. I think that this is a once in a few years (or even less than that) kind of situation for them. We're somewhat celebrities over there and a lot of our doctors appointments will have all kinds of interns at them, because it is not often that they have the chance to learn about this kind of situation.

This was our last appointment for an ultrasound, and our last appointment with the prenatal diagnostic clinic. Everything else now is just "wait and see when the baby is born". I'm 36 weeks today and have another 4 weeks until my due date. Lana came 4 days early and I'm really hoping that this one comes a bit early too. Maybe she can come on the date of my next prenatal appointment so I don't need to go to that ;)

A few prayer points for the last couple of weeks:

Please pray that when our daughter is born, that her breathing will be stable and that she won't be in any immediate danger. Pray that she surprises the doctors by how healthy she is and is able to leave the NICU quickly
Please continue to pray that she doesn't have a cleft palate - it's one complication that I'd rather not deal with. It would make breastfeeding (and feeding in general) so much easier if we don't need to worry about that - and it will mean one less surgery down the road
Please pray for me - I am preparing myself that I almost definitely will need to be separated from her at birth. I know that medically, it is in her best interest but that doesn't necessarily make it easier for me. I'm not looking forward to that. I'll be separated from BOTH my girls and I'm not looking forward to being separated from Lana either.

I'm really glad that this pregnancy is coming to an end - it has been a long, hard, emotional pregnancy and I'm ready for our little one to be here. I want to start our life together as a family of four :) Even so, little one, come quickly :)

Being Prepared

2010-06-25T10:08:00.000+08:00

When I was pregnant with Lana, I wasn't too concerned about how my mothering skills would be - I benefited from having a sister 16 years younger than me and could remember what it was like having a newborn in the house. I had lots of experience with poopy nappies (or diapers for all you Americans), bath time, putting a baby to sleep, vomit in bed, etc. I had no false illusions about what motherhood would be like - and when Lana was born, I found that it was even easier than I expected. Lana was such a good baby - she fed really well, was never sick, slept pretty well... I think I've had it easy!!

Now that I'm pregnant with my second, I'm finding that it's in this pregnancy that my fears and insecurities of my own inadequacies of mothering are coming up. I have no idea what it's like to parent a child with special needs. Everything seems so much more complicated and I have had no experience in that area.

One of the things that I've been thankful for in this pregnancy is that the prenatal testing and diagnosis of skeletal dysplasia has given us the opportunity to research and to prepare ourselves for the differences of this child. I'm thankful that we found out earlier in the pregnancy and that I've had time to process my feelings about it all. I think it's probably much easier to process while you're still pregnant than if you found out when the baby was born with no warning at all. However the flip side of that is, while we can research, we can't really "practice" what we're learning. And while I know a lot about potential issues that our daughter may have and what we should do in those situations, I don't even know yet which issues are relevant to our child.

One of the issues I've been specifically concerned about is cleft palate. This is something that occurs in about 30-40% of babies with Diastrophic Dysplasia (although it's usually just the palate, not the lip as well - so cosmetically it's not as bad). I asked the doctors to try and look on ultrasound and the lip is definitely not cleft, and the palate doesn't appear to be cleft - but it can be quite hard to see that on ultrasound so there are no guarantees. I would like to breastfeed if possible, but cleft palate can make that very difficult. And if that was the only issue a mother was facing, there are things that you can do to breastfeed a baby with cleft palate - however I think that with our baby, there are so many other issues as well that I don't know if I'd be able to dedicate the time and energy to exclusively pump if it came to that. I have brochures from La Leche League giving tips on breastfeeding a baby with cleft palate so regardless of if we face this issue or not, I do want to give it a sincere try...

Another issue that I'm concerned about is called "cervical kyphosis" which also is quite common in diastrophic dysplasia. This is where the curve in the neck area of the spine is not correct and it can result in neck instability. This means that the baby needs to be held much more carefully for much longer than a baby without this condition. It also means that it may not be safe for the baby to be carried in a baby carrier and she may need a pram which is more supportive for the back/neck. Getting around with two kids in Hong Kong is hard enough as it is - and Lana's not really old enough to just walk around all day while I push the baby in a pram. The easiest way to get around with two kids over here is to have the baby in a carrier and push the older one in a stroller. I really don't know how I will manage if I can't use a carrier - but I guess we will cross that bridge if/when we get to it... hopefully we will be able to figure out some kind of option where I can carry the baby in SOME kind of carrier/sling... but ultimately, the safety of the bub is our priority and even if it means that we can't get out as much, or I've just gotta take one kid out at a time, we'll manage. Thankfully we do have a helper now so we have a baby sitter on hand most of the time, if we need to do that.

So if you are a praying person, please help me pray for these two specific issues. There are other issues that may affect us later on - but these two things are the two that I am most immediately concerned about.

I also want to thank Stacey once again for her help and support throughout my pregnancy, answering so many questions that I've had about diastrophic dysplasia and parenting. One thing that she said to me in a recent email really meant a lot. She said:

I'm a worrier. I worry about everything, and when Grant was born I was completely overwhelmed...until I realized that Grant was just a baby, like any other baby. He had special needs, but I learned those needs quickly, and he was very good at telling me what he needed, even before doctors knew what he needed. So trust those motherly instincts, and try not to worry as much as I did! It won't take long for you to be surprised by how normal it all feels. :o)

I still feel less "prepared" and "ready" for this child than I did with Lana... everything is still so foreign to me - I've never been in this situation before and it's hard to really imagine what it will be like when you haven't been there yet. But I do know that we will learn, we will cope - and I even think we'll do a pretty good job, once we figure it all out!

Pediatrician Appointment scheduled

2010-06-23T12:56:00.000+08:00

I got a call today from one of the nurses at the hospital where we're delivering the baby - they have scheduled an appointment with the pediatrician so that he can see the baby (on ultrasound) before she's born and they can be prepared for her birth, as well as us having a greater knowledge of what is likely to happen after she is born as well. The appointment is scheduled for next Tuesday - the 29th.

Unlike the geneticist who will be involved in finding and confirming a diagnosis for our daughter, the pediatrician will be involved in her care immediately from birth. If she has do go to NICU (something that our obgyn said was almost definite), he will be the one supervising her care for her first few days. He probably will also be the one who will be ordering the x rays and blood tests that she will need.

I'm looking forward to being able to prepare ourselves for what is likely to happen once she is born. When Lana was born, she needed to go to Special Care for observation for about 12 hours or so and I was completely unprepared for it and found it extremely difficult as a new, first time mum. Everything happened so fast that I wasn't really able to ask questions and really understand what was going on at the time - and I was still recovering from the childbirth as well (AND it was past midnight by that time) so I was encouraged to go to my ward and sleep while my newborn was placed on a different floor to me.

I think that with Lana's situation, if I had been able to know about it in advance, it wouldn't have been as hard on me as it was. So I'm really grateful that I will be able to talk with the pediatrician (and not just the nursing staff who often convey messages between the patients and the doctors) and get a better idea of what to expect once our little one gets here :)

The annoying thing is though - on Tuesday, I've got a prenatal appointment at the hospital at 9:30am, then I've got this appointment there at 2pm. The hospital is quite far from my house - it takes an hour to get there by public transport - so there's not really any point in coming back home. So I'm going to be at the hospital pretty much the entire day - something I'm not looking forward to! But I guess it's good practice for when the baby is born...

5 weeks today til my due date!

The Joys of Pregnancy

2010-06-18T10:28:00.000+08:00

I'm not the kind of woman who loves being pregnant and feels like she's glowing with pregnancy joy and wonder. I have some friends who are like this and I just don't "get it" at all! For me, pregnancy is a means to an end - you want a baby, you get pregnant.

I kind of liken pregnancy to a long flight. I love going back home to Australia to see my family. But to get there, I've gotta go to the airport two hours before my flight, go through immigration, sit in an uncomfortable, crowded seat for 9 hours, fight the other passengers through Sydney airport, wait for my bags and then there's that ridiculous customs line they have in Sydney (that must be the part that is like labour) - all before I can begin to enjoy actually being back home. There are some weird people who love flying and all that it involves - but for most people, it's a necessary evil.

Earlier in my pregnancy when we started having medical issues, my mum said to me "Just enjoy your pregnancy - don't let this change your excitement etc" - I looked at her and said "Mum - I didn't even enjoy my pregnancy with Lana, how am I meant to suddenly love being pregnant this time around?"

I never ever missed being pregnant after Lana was born. I never thought about her hiccups and kicks when she was in my womb and wanted to feel them again. In fact, after she was born and I first found out I was pregnant again my first thoughts were "Oh great, this again!!" - I knew I wanted more kids and would like them close together but didn't really think about the actual "being pregnant" part until I saw that positive pregnancy test - and I wasn't looking forward to that part of having another baby.

It's not that I've had hard or difficult pregnancies. I'm healthy as can be, I haven't had any morning sickness or other complications in either of my pregnancies. I don't bloat up like some women do. I haven't put on excessive amounts of weight. The worst things that I have to deal with is a bit of pelvis pain (more so the 2nd time around, probably because of carrying Lana so much as well), some leg cramps a couple of times a week, and just the uncomfortable feeling of carrying around the extra weight.

I think that now that I'm approaching the end of this pregnancy, I'm really looking forward to the end of it all. I know firsthand that the hard work really starts once the baby is born - and probably in this situation, even more so! But at least then I can do the hard work in my own body instead of sharing it with someone else ;) I hope that the next 6 weeks or so go by quickly!!

My house

2010-06-12T22:30:00.000+08:00

It's been exactly a month since I wrote this post about my frustrations about some things around the house and I thought I'd write a bit of an update about our dramas in that area.

With the mold problem, we got the landlord to come and have a look at it and he agreed to replace the wardrobe for us. That was fine and dandy - but it meant that in the mean time we couldn't use a wardrobe at all. And for some weird reason, the delivery date was set for two weeks after the landlord ordered the wardrobe. I don't know whether it was Ikea being slow (maybe things weren't in stock?) or whether the landlord set the later date so he'd have time to remove our old furniture - but it was definitely a long wait until we finally had wardrobes that we could use!! They arrived about a week and a half ago now and are mostly filled (although we could still do a bit of rearranging to get the best use of space).

Our helper also arrived about two and a half weeks ago now and she's settling in nicely. It's a bit of an adjustment for Bernard and I as we've never had a helper before, but we're happy with the job that she's doing. Lana likes her, she keeps the house much cleaner and tidier than I managed to do, she cooks pretty nice, usually if I ask her to do something it gets done promptly and meets or exceeds my expectations. It definitely makes my life easier, not having to worry about the house in between doctors appointments and playdates (that's pretty much my life at the moment!). It's nice being able to just leave Lana at home and go out somewhere. Already Bernard and I have gone to a concert and to the movies - things that were much harder and less frequent before she arrived.

And as for the furniture which arrived a month ago sized incorrectly, it was meant to take one and a half to two weeks to be fixed - but somehow it was "forgotten" and then their factory had electrical issues, there was a frustrating lack of communication going on - it ended up taking over a month to be fixed - and then when it was fixed, there are still a couple of minor problems with it. At least now though, our helper's bed is more usable and we could finally put the mattress onto the bed - it had been standing against a wall for the past 6 weeks!!

Lana's "big bed" is going well now. We bought a little two step ladder for her so that she can climb into bed herself and she really likes it. She still has times where she wants to get out of bed and not go to sleep but overall she's very good. She likes us to sit outside her room while we're waiting for her to fall asleep though - she tells us "Chair! Book!" (ie, sit in the corridor and read to yourself while I go to sleep). There've been a few times when she's been really bad at getting out of bed and I've ended up just closing the door on her (which she does not like at all!) but after crying for 5-10 minutes, it's a sure way of getting her to go to sleep.

When we first were talking about when we should move in preparation for the little one, we were talking about May-June. We ended up moving in April instead - and I'm so glad that we did because we've been in this new place for 8 weeks now and with all the issues that we've had, it's only really now that we're feeling more "settled in" and at home! No one could have predicted the complications though - but I'm so glad that we managed to get them figured out now rather than when I was 38-39 weeks pregnant.

So now, when it comes to our house, I feel like we are practically ready for the little one now :) A few more little things to take care of (like sorting through and washing Lana's old baby clothes and making sure we know where all our baby supplies are) but we're pretty much ready to welcome our new daughter in a little over a month's time!!

32 week ultrasound

2010-06-08T21:21:00.000+08:00

Today I had another ultrasound. I'm currently 32 weeks 6 days (practically 33 weeks). There's no real new news or anything like that - it's much the same as previous ultrasounds. The head/body/internal organs all appear normal, average size etc. The limbs are now all 10 weeks behind - measuring at 22-23 weeks. I'm thankful that I'm this far along and I haven't developed any other complications. My umbilical fluid levels are normal and I'm healthy as a horse - I feel much more fit than I did when I was pregnant with Lana. I have a bit more back pain but I think that's because I've been carrying Lana around a lot this time. When I was pregnant with Lana I had the worst foot/leg cramps - but I haven't really had very many of them this time around thankfully!! Thanks to the pilates I've been doing with my physiotherapist since Lana was about 6 months old, my posture is much better and I feel stronger. Things are coming along and the end is in sight.

The doctor today suggested having an appointment with the pediatrician so that he will be able to "see" the baby before she is born and that way, he is a bit more prepared and I am also a bit more prepared. The doctor said that the baby will most likely need to go to NICU - even if it's just for observation for a while. I kind of expected that. I know this hospital tends to be very cautious, one thing that frustrated me about them when Lana was born (she was put into Special Care for observation when she was first born since she was born 40 hours after my waters broke and I wasn't emotionally prepared to be separated from my newborn. In the end, she was only there for maybe 12 hours and she was perfectly fine anyway). I do think it will be beneficial though to talk with the pediatrician though and to have a bit more of an understanding as to what to expect after she's born. I don't know yet when that appointment will be - they will call to schedule it.

In the mean time, I'm down to biweekly prenatal visits at the moment (so annoying - they take so long in the public system and like I said, I'm healthy as a horse so there's not much that they say anyway), and my next ultrasound is scheduled for the beginning of July. I think I'll be 36-37 weeks then... I can't wait for this little one to get here! It's been such a long pregnancy...

Another way of looking at it...

2010-06-02T09:34:00.000+08:00

When I first found that my child may have a genetic disease, my first thoughts were those of "Why me?" and "How can we be the one in 500,000 - everyone else has "normal" babies, why am I so unlucky?" - but now I have a slightly different perspective... If our baby does have a genetic disease, and if I do believe that God is the creator and giver of life - then HE not only "allowed" this, he also intended it for a reason. So out of 500,000 other families that God could have allowed this situation to affect, He chose us. And out of every other family in the world, he chose us to be the parents of this special little girl who's going to be joining us soon. Instead of this being a burden, I know that it will be an opportunity. I feel so blessed and excited to welcome our daughter into our lives - and although I am aware of the difficulties which we may face due to her medical situation, I know that we will be strong enough with God's help to face it with grace, love and hope :)

Jeremiah 29:11

For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope.

Romans 8:28

And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

But a Vapour

2010-05-28T13:36:00.000+08:00

James 4:14

For what is your life?

It is even a vapour,

that appeareth for a little time,

and then vanisheth away.

Mortality - this is the common fate of all mankind. We may not have much else in common, but we all share the same destiny - the grave.

It really hit me last year when Heather lost her little girl. I saw that little coffin - not that much larger than a shoe box really - and thought "Babies shouldn't die".

I never thought that I would have to face the same scary news - that OUR baby might die. Thankfully now, her odds are looking much better. But I don't know if there's anything that would scare a pregnant lady more than knowing that her child may not survive.

All of this made me think for the first time of the mortality of children. I never really experienced that before - most of the people in my life who had died were either old or sick. One of my mother's best friends died unexpectedly when she was 39 (I was about 14 at the time), and I also knew a couple of people who died of cancer before they should have (around ages 25-40).

This past week though, I've been faced with the mortality of someone my own age. One of my friends from home just died unexpectedly in his sleep. He was just a month past his 30th birthday. I wasn't particularly close to him lately - since we moved to Hong Kong three and a half years ago, I had seen him a few times when I was back home, but I didn't stay in touch with him or anything. But regardless, he was a big part of my life when I was younger. I had a crush on him for a while when I was 18 or so. He was kind of a "big brother" to the girls in the youth group at the time. He was one of the best guys you'd ever meet - so sincere. A bit rough around the edges but that only added to the charm. He talk his way out of anything the cops pulled him over for - I don't know how, but he seemed to ALWAYS get pulled over but NEVER get a ticket.

I'm thinking of his family and friends at this time. His sister was one of my bridesmaids and some of his closest friends still go to my home church in Australia. I know it must be affecting them even more than it is me. I wish that I could be back home to remember him with them. To laugh at the memories of a great guy, to cry with them because I'm going to miss him. I may not have been one of his closest friends - but he did make a difference in my life and he was a big part of a particular time of my life.

I think with him dying, it has made me realise even more that we are all mortal and none of us are guaranteed tomorrow. So then we need to cherish each day that we do have. Hug the people you love, tell them you appreciate them. Live life with no regrets. Life truly is a vapour.

All about Diastrophic Dysplasia

2010-05-23T22:31:00.003+08:00

I was talking to my brother the other day and he said to me "You should post more information on your blog about Diastrophic Dysplasia so that people can understand more exactly what it is" - so that's what I'm going to do in this post.

There are a lot of great resources on the web that have helped me to learn about DD and what it is. I'm going to add some of the most helpful of them to my resources page so if you want more detailed information, you can read them. Another great resource has been blogs of other people - my favourite is probably that of little Grant. Grant is about the same age as Lana and has Diastrophic Dysplasia. His mum has been such a support to me since I first emailed her a few months ago and I'm so grateful for her!!

So to be simple, Diastrophic Dysplasia is a type of dwarfism. Apparently the third most common non-lethal type. The rate of occurrence is 1 in 500,000 births. The term "diastrophic" means "twisted" and it refers to how in this form of dwarfism, there's a lot of "twisting" of the bones and joints. Things like scoliosis and other curvatures of the spine, also quite frequently dislocations are involved at the hips, elbows or shoulders. One very typical feature is the hitch hiker's thumb. It was this feature that initially caused me to think that maybe our girl had DD. Below is a photo of a newborn with DD's hand, next to our ultrasound photo from 17 weeks.

Other complications involve clubbed feet - or feet where the heels cannot be placed on the floor when standing. This can range in severity and from the ultrasound, it doesn't appear to be a serious concern in our daughter's case. Below is a picture of typical club feet.

Another very typical feature is cauliflower ears - in about 85% of cases, when the baby is just a few weeks old, the ears will begin to swell and if left untreated, they will end up scarred and misshapen. The current school of thought is to use compression bandages on the ears for a couple of weeks until the swelling subsides, and the result when healed will be much less scarred.

Around 50% of babies with DD will have a cleft palate. We tried to look for one in our baby on the ultrasound but it was not visible. We're praying that she will not have a cleft palate as that can complicate breastfeeding.

As the child ages, the joints degenerate faster than usual and mobility can become a problem. Many adults with DD need to use some form of aid for walking - whether a wheelchair, crutches, or a walking frame.

There will be physical delays for a child with DD, although mentally the child is completely normal. Things like surgeries or foot/leg/hip casts can further delay these milestones.

Here are some facts about DD:

Average newborn length is either 33cm or 42cm depending on which website I believe ;)
Average adult height is around 118cm but can vary greatly
The most well-known person with DD is probably Matt Roloff from "Little People Big World" (pictured to the right)
DD has a much higher occurrence in Finland - there, the rate is 1 in 30,000 births as opposed to 1 in 500,000 in the US. It's estimated that up to 2% of Finland's population are carriers of the DD gene.

I was going to post some pictures of people with DD but for copyright reasons I can't post them on this blog. This site has some wonderful pictures of people of all ages with Diastrophic Dysplasia so if you like, you can go check it out. It's a wonderful site with lots of information and has been excellent in helping me to understand this condition better.

I hope this helps to explain a bit better the most likely condition that our daughter has. We'll have to wait and see if it is or not - but there's never any harm in learning more about things like this. I know that regardless of what happens, I've learnt a lot from this journey. A lot about myself and about other people - and although it's been difficult, I'm thankful for that opportunity.

Geneticist Appointment

2010-05-17T21:50:00.001+08:00

Today we had our appointment with the geneticist - and it went much as expected really.

The geneticist agreed with my "guess" that it looked most like Diastrophic Dysplasia - and that would be his first suspicion. However we won't be able to know for sure until after the baby is born.

When the baby is born, the first thing that they will do in order to get a diagnosis is to fully examine the baby. Then they will take x-rays of her entire body. This should be able to get us a fairly good idea of whether or not it is DD or if it is something else. They will also collect some of the cord blood (so they don't need to take the blood from the newborn) to do the genetic tests which will say whether or not she has the gene mutations that are indicative of DD. These tests will take up to 6 months to give us a definite answer.

Diastrophic Dysplasia is usually inherited - which means that both the mother and father are usually carriers. So if we do get a positive diagnosis for this condition, Bernard and I will also need to have genetic testing done to see whether we are carriers (if the baby has it though, it's generally pretty probable that both parents are carriers - although there are exceptions to that rule). If we both are carriers, the chances of a future child also having the same genetic disease are 1 in 4. This may affect our future plans to have more children (we'd like more), but we haven't really talked about that yet. We'll cross that bridge if/when we get to it.

The good thing is that there are no obvious fractures on any of the bones (we went over all the limbs and all the ribs), and they appear to be well ossified (hard rather than soft/brittle). This suggests that it may not be Osteogenesis Imperfecta (where the bones are brittle and break easily) and I think I should be able to have a natural birth and shouldn't need a caesarean. Particularly now that the little one is head down!

The other good thing is that the geneticist agrees that it appears to be non-lethal - although we're not completely in the clear yet, but I'm happy with the news regardless. This news means that we aren't going to be planning a funeral just now :)

The visit with the doctor today gave me a bit more confidence in the medical system here in Hong Kong. The doctor who we saw (and will see again after the bub is born) was very knowledgeable about these issues - he's really the first doctor who could answer all of my questions satisfactorily.

So we're still really in the "wait and see" mode - but I do feel quite confident that probably we are looking at DD. It was the first thing that "fit" when I was trying to diagnose it myself way back here in February - and to have a doctor's opinion confirming that's probably the most reasonable option (although not the only option) makes me think most probably, that will be the diagnosis. I've already done quite a bit of research and I'm planning on doing more. I know that there's still a chance that it's not DD but a bit of research never hurt anyone - and I want to be as prepared as possible to be the best mother I can be for our little girl :)

Geneticist appointment scheduled

2010-05-14T22:34:00.000+08:00

I got a call today around 4pm asking me to come back to the public hospital on Monday morning for my appointment with the geneticist. I was expecting to have a bit more notice than that - but I'm looking forward to hopefully getting a bit more information. I'm not sure yet whether he will go over my ultrasound images that they've collected over my past 4 ultrasounds or whether we'll be doing more ultrasounds there and then. The prenatal diagnostic specialist mentioned it could be either way.

I don't have my hopes set on actually getting a confirmed diagnosis at this stage - I know that really they will need to do more tests once the baby is born to know for sure since we turned down the amniocentesis (which may not have given us a diagnosis anyway). It will be nice though to get his thoughts and maybe to have his opinion on what his suspicions are. I want to be as prepared as possible for the birth of this little one.

I'm still feeling great following our appointment last Monday - hopefully the geneticist will confirm that the baby's condition appears to be non-lethal. :)

What else could go wrong?

2010-05-12T14:12:00.000+08:00

That's how I was feeling on Sunday night. It seemed like everything that could go wrong was going wrong! All non-pregnancy related though, thankfully...

To start with, late last week we discovered that the unusual aroma coming from our wardrobe was mold. We didn't notice it earlier, before we put in all our clothes. We only noticed it after 90% of our clothes were in the wardrobe and I'd asked Bernard to take out a couple of shelves for me so I could have some long hanging space (the angle he was looking at, as well as the torch he was using to be able to see under the shelf made it very obvious!). Further inspection showed that our entire wardrobe in the master bedroom as well as two sets of drawers in our spare room were both completely infested with the disgusting green growth. And mold is no good for children (like Lana), or pregnant ladies (like myself), or asthmatics (like Bernard) so we need to get it dealt with as soon as possible!!

In order to completely deal with the problem, we need to do a few things. First, remove EVERYTHING from the wardrobe/drawers and rewash it (great, that also means re-ironing it as well!!). Second, completely wash down the inside of the wardrobe/drawers to remove all the mold, and third wash the entire thing down again with bleach or alcohol to kill any remaining mold and prevent it from re-growing.

The bright side to this situation was that on Thursday I found out that all the paperwork for our helper would be complete by today actually, and so I was thinking we may be able to have her come as early as the 13th (tomorrow) and that way she'd be able to help me to deal with the problem.

However, when we contacted her to set a date, we found out that she is busy until the 23rd preparing to leave - so now she won't be arriving until the 26th, two more weeks away!! Some other employers probably would push for their helpers to fit into their schedule rather than working around the helpers' requests but I figure that she's the one making the move overseas to help our family, the least I can do is be understanding of her needs and ultimately, it's only 2 weeks (it's 2 weeks less pay that we need to give her as well, along with one less public holiday!) Unfortunately though, that leaves us to deal with the bulk of the mold problem!

In addition to this, Lana's new single bed mattress arrived last Tuesday so we decided to set it up on the floor and start getting her used to sleeping in a "big girl bed". We wanted to teach her this before the baby arrived and took over her cot. The first night (last Wednesday) went like a dream. We laid her down, she closed her eyes and didn't get up until morning - when she yelled out for us to come and get her. Her first nap in it went just as smooth - although when she woke up, she figured out that she could get herself out of bed and come and say hi.

It was all downhill from there. The 2nd night in her big girl bed, we had to sit with her and keep putting her back in bed because she would NOT stay there. She finally ended up falling asleep 2 1/2 hours after her regular bed time. The 3rd night was slightly better - she fell asleep after 1 1/2 hours, and the 4th only took 45 minutes. Last night was particularly good - it was really only about 15-20 min and she didn't make too much of an effort to get out of bed.

Nap times have been a little more difficult - the first day, she was a dream - but the second day we ended up putting her back in her cot because it was not working and we had a birthday party that afternoon so we couldn't afford to spend 2 hours fighting with her to stay in her bed. A couple of days we've been out and so she napped in her stroller, and today it was 1 1/2 hours of testing each other's will power again. (Mummy won in the end!!)

I know that ultimately she needs sleep and she WILL learn to sleep in her big girl bed. I can see improvement already - although sometimes I think it's a step forward and then two steps back again - but we'll get there. In the meaning though it's so draining and tiring for us!! (hence I'm using her nap time now to blog rather than cleaning more of the mold away! Our wardrobe is nearly all done now, need to finish that and start on the drawers...)

So just when we felt like we were dealing with enough issues, on Sunday afternoon, our furniture was delivered. We had a wardrobe made for Lana and the baby's room, two wooden toy boxes to replace the cardboard/fabric kind that we had been using, the single bed for Lana, and a bunk bed with wardrobe/storage/desk underneath for our helper. They set it all up, it all looked great, then we went to put the mattresses down - and they didn't fit!!! All the furniture was custom made and we were sure that we had requested a particular size, however when we looked at the plans (which we had signed), the guy had written a different length for the beds! So the beds are 3 inches shorter than the mattresses.

Fortunately Lana's bed has no foot board so the mattress can still fit on the bed, even if the end doesn't fit properly. But our helper's bed has a rail around all 4 sides so the mattress can't even go on the bed!!

Thankfully, when we called the guy who did the plans, he admitted his mistake so they are fixing the furniture at no extra cost to us. They theoretically could have refused to do so since the measurements were clearly written on the plans that we signed - even though we had verbally expressed that we wanted the longer size. So I am very grateful that they are doing the honest thing and fixing the situation for us though.

In the mean time though, we have our helper's mattress propped up against a wall in our dining room since it has no where else to go - and we have all the storage underneath Lana's bed which we can't really start to use since they are going to come and replace the bed for us.

Maybe it's a good thing that our helper won't get here until the 26th because her bed should be ready by then - and also we should have dealt with the mold situation by then as well and we'll have our stuff put back in the wardrobes rather than thrown all over the house. I can assure you that she's going to have the biggest ironing pile she's ever seen in her life though!!

After hearing a good report at our ultrasound on Monday though, things started looking up. The wardrobe is slowly getting back to a state where we feel comfortable putting our clothes back in it (maybe once or twice over with bleach or alcohol just to get rid of the few remaining spots). All the clothes have been washed, even if they have not been ironed. The beds will be replaced within about a week or so. Lana's learning to sleep in her big girl bed, slowly but surely... our helper should be here in 2 weeks time. Surely we can get back into "normal life" sometime soon and leave this chaos behind :)

Oh and one more thing...

2010-05-10T17:25:00.000+08:00

I forgot this in my previous post - but the bub is now head down!! WOOHOOO - which means that my chances of needing a C section are lower. There still is a chance that the baby might turn back around, or a chance that we find that her condition necessitates a C section (such as if she does have, or is likely to have Osteogenesis Imperfecta) - but in most other situations, we'll be able to deliver naturally - which means a lot shorter recovery time for me. So happy for that bit of good news too!!

"Probably non-lethal"

2010-05-10T17:06:00.000+08:00

Today, we went back to the public hospital for another scan. I'm now 28 weeks and the last scan was 4 weeks ago. We got to the scan and found out that our previous doctor has moved to a different hospital so we had a new doctor who didn't know anything about our case - although she had obviously read our file in advance. After a small amount of apprehension, my mind was put to ease when I found that she was by far the best doctor we've seen since our regular obgyn (who is also great) transferred us to someone else since this was "outside his area of expertise". I googled her once I got home and found that she's actually the department head for the Prenatal Diagnostic group, so no wonder she's so good :) She was both caring, but still forthcoming about her medical opinion about our baby.

At the beginning of the scan, we started by just talking about the situation, about what I specifically wanted to look for, about what a possible diagnosis was. She was very attentive and she acknowledged that we had done a lot of research about the situation!!

So here are the results from our scan this time. Again, being in the public hospital, we didn't get pictures to bring home so I've got nothing to show, I'll just explain the situation.

Limbs: the limbs are all still behind, now all the bones are 7-8 weeks behind. Some of the bones do not appear to be straight, but they don't appear to have been fractured or anything like that which is good news. I want to be able to rule out a condition called "Osteogenesis Imperfecta" or brittle bone disease because if the baby has this condition, a vaginal delivery could potentially be harmful for her. The doctor said that she does not think that it is the most severe form of OI, but she could not rule it out completely at the moment.

Head size is normal, body size is normal, no problems with any of the internal organs, no fluid on the brain, nothing to worry about there.

Rib to abdomen ratio: this is the measurement I've been keeping my eye on the most - and it's better today! Up to 0.8 which is in the "normal" range! This means that the lungs do have quite a bit of room to grow and show be able to function normally once the baby is born.

At the end of the scan, I asked the doctor what she thought some of the likely causes might be, and she said that it was probably not Achondroplasia (the most common form of non-lethal dwarfism - I already suspected that though) but she did say the words I've been waiting for hear a doctor say for the past 3-4 months now - she said "It's probably non-lethal"!!

I was so happy to hear that. I mean since the beginning of this journey, when I researched these issues, it really seemed to me like medically, it was most likely non-lethal - and even when our previous doctor told me that he was leaning towards a lethal diagnosis, I didn't really believe that he was right. But it's so reassuring to hear a medical doctor look at our scans and come to that conclusion for herself!

I asked the doctor whether she thought it would be beneficial to meet with a dwarfism specialist/geneticist before the baby is born, and she is now going to set up an appointment for me with him. He should be able to provide us with more information about a specific diagnosis and also what to expect after the baby is born. Hopefully we'll be able to see him soon.

This visit today has really raised my hopes - not only of the situation of our child, but also of the medical system here in Hong Kong. I'm looking forward to being able to talk with the geneticist about it and getting his opinion on it as well, and I'm looking forward to once this bub is born and being able to settling in at home with her. I know it's still a long road but I'm so relieved that most likely, we will be able to bring our little one home.

Little People

2010-05-06T15:07:00.000+08:00

In all my life, I don't think I've ever had anything to do with someone who has dwarfism, or "Little People" as they often like to be called. I've never met anyone, talked to them, anything. I've passed them in the street and noticed their short stature, but that's about it. It's only now that my daughter has been diagnosed with Skeletal Dysplasia that I've been learning more about the subject. If our daughter does pull through all this (and we're praying and believing that she will), she will most likely be a "little person" or dwarf as most people would say. (note - most people in the little people community find the term "midget" very offensive, so I won't use that term.)

Most people with dwarfism (I think about 80%) are born to parents of average height - that probably means that a whole lot of parents are just like me, thrust into this situation with little exposure to this disease. It also means that this situation is probably just as likely to happen to you (if you're not done having kids yet) as it was to me.

The most common cause of dwarfism is Achondroplasia. This disease accounts for 60-70% of cases. The average height of an adult lady with achondroplasia is about 4"1' (the same height as an average 7-8 year old girl). I don't think that our daughter has achondroplasia because usually it isn't able to be seen on ultrasound until around 25-30+ weeks of pregnancy, but our daughter's condition was evident much earlier at 17 weeks of pregnancy. I still think that most probably our daughter has Diastrophic Dysplasia - which is the third most common cause of dwarfism. The average height of an adult with DD is around 112 cm, or 44 inches, the height of an average 5.5 year old girl. Some of her features suggest that she may have a more mild case of it though. We should get a diagnosis once she is born.

I've been considering the role of little people in Hollywood and popular entertainment - and it seems like often little people are left to play the roles of leprechauns, or oompa loompas, or the angry dwarf that goes around kicking people in the shins. I don't think I have seen a movie where there was a little person who actually played an "everyday life" kind of a role. My brother tells me that there was a TV show which had a lawyer who was a dwarf - but I've never seen it. There are some reality TV shows that have included people with dwarfism, "Little people big world" is all about a family affected by dwarfism, there was Chandra on "The Amazing Race" (one of my favourite shows ever!!), there's another show called "The little couple" but I've never seen that either. You see a lot of other disabilities being used in various situations in Hollywood - there have been deaf actors and actresses, and compelling stories about their lives. People in wheelchairs, people with Autism and other similar conditions. I don't know why little people are still primarily in Hollywood to be laughed at. It doesn't seem very politically correct to me!!

Many people with dwarfism do not consider their short stature to be a disability, rather in the words of the opening credits of "Little People Big World", "we can do anything an average height person can; just in a different way".Yes there are obstacles of course - but a lot of them are more mental and social rather than physical. There are many people with dwarfism who live very successful, fulfilling lives. Some are doctors, some are lawyers - there is no restricting what they are able to do as their minds and souls are not affected by the condition which limits their bodies.

The next time I see a little person in the street, part of me wants to say to them "Excuse me, I noticed you're of short stature. My daughter is expected to have a form of dwarfism. Do you mind if I ask you a few questions? I hope I'm not being rude..."

Resources Page

2010-05-05T11:23:00.001+08:00

I figured out how to add pages and I've added a resource page here. On it, I've added the links to a few sites that have helped me through this pregnancy journey so far. I have found a lot of support and answers to my questions online and wish to share it with anyone in a similar situation to me. There are many many resources available - but I've just selected the ones that I found most helpful.

The things doctors say...

2010-05-03T12:57:00.001+08:00

I had a prenatal check up last week. It was just a check up for me, no ultrasound or anything like that. Because I'm going to a hospital which is the largest teaching hospital in Hong Kong, I had some student doctors in the process. It's possible to say that you don't want student doctors but I figure, they've gotta learn with someone as the patient - might as well be me! (as long as they're not cutting me open or anything like that!). One student doctor was going over my medical history with me, as a kind of "pre-consulatation". She consulted with me, then wrote down a bunch of information and then reported back to the doctor I was about to see. She was remarkably sensitive and a couple of times, when she saw I had a tear in my eye, she passed me a tissue and said "I'm sorry if my questions are causing you any pain".

Fast forward half an hour and I had a consultation with the doctor. You would expect the doctor to be more experienced, more sensitive, more knowledgeable about the issues surrounding these kinds of pregnancies. And as a doctor, she wasn't a bad doctor - but one question she asked me completely floored me. She asked "So, you want to see your baby grow up?"

Seriously now - what kind of a question is that? And what kind of an answer am I meant to give to such a question? "No, I don't want to see her grow up" - duh. I think she was trying to ask in a different way "So, you have decided against termination?" but in a softer kind of a way but the way she worded it was completely wrong.

In another situation, today I had to take Lana for her 18 month immunisations (a couple of weeks late, but she was sick when we were meant to do them). I quite like our family doctor. She is close to us, she is great with kids, she's pretty easy to get in to see, she's not ridiculously overpriced like most of the doctors that expats in Hong Kong see. We found her from our insurance company and when we see her, we just need to swipe our insurance card and don't need to pay anything for the consultation or for any medication that we need. I've only had one time in the past that I haven't been happy with her and that was when Lana was 10 months old and I was having breastfeeding issues. I found her to be not very knowledgeable about breastfeeding and felt like she gave me wrong medical advice in that situation. I do forgive her for it though because I understand that breastfeeding is not very popular in Hong Kong culture and so most doctors over here (apart from the expensive expat doctors) aren't that supportive or knowledgeable about it.

I thought that I would mention the issues we were having in this pregnancy just to a) prepare/inform her about it, and b) ask whether she had any experience in something so rare. I mentioned that this baby was diagnosed with skeletal dysplasia at 17 weeks and what was her first response? "And they let you continue with the pregnancy?"

Well first of all, no one can force you to terminate, no matter what the situation is. Maybe if I was unconscious and they couldn't get in touch with my family and it was either take the baby or else the baby and I would definitely die, maybe then they would be able to act without consent - but apart from those extreme situations, termination is always the choice of the parents, not the choice of the doctors. And secondly, there is currently no medical reason to believe that our child will not be able to live til she is 80 and have a normal life. Sure that chances are lower, and the other medical issues are greater. But there's nothing saying that she definitely will NOT be able to do that.

I am very aware that our decision is not the "normal decision" in this culture and this situation. I haven't asked the doctor specifically (I may do that at our next ultrasound) but I would guess that the vast majority of people here in Hong Kong would have made the decision to terminate is they were in our situation. You can read my thoughts about that here.

I guess I need to expect that people will not know how to respond to our different decision, even doctors obviously do not know how to respond to it. I wish though that there was a course that doctors had to take called "What not to say" or "How to be sensitive to your patients difficult situations" - it seems that quite a few doctors are unaware of these things.

The first doctor with the public hospital, I probably will never see her again since every time I have a prenatal check up, I see a different doctor (although I do have one doctor who does all the ultrasounds, but he only checks on the baby - not on my blood pressure and weight and whether or not I have protein or sugar in my urine). With our family doctor, I'm not going to stop seeing her based on her insensitivity in this situation. I will even bring our daughter to her once she's born and hopefully she'll be open to learning more about our daughter's condition because despite the difference in culture, I do think she's a good doctor.

Half way through a marathon

2010-04-26T23:53:00.000+08:00

I have never run a marathon and I am quite sure that I never will run one either. But I imagine that there are probably three different stages to such a long race. I could be wrong because I have no experience, this is just how I think about what it probably would be like.

In the beginning, there's probably a whole lot of sorting going on as people want to be placed in a spot that is ideal for them. Some want to be in that front pack, others are content to be not right up the front but will conserve their energy for later in the race. But I imagine that at the beginning of the race, a lot is going on as the contestants sort themselves into groups. In the middle of the race, I imagine that it's pretty much just trying to keep on going, maintaining the position that was gained at the beginning of the race, and at the end, I guess that's when the contestants really make their move, breaking away from the packs and trying to get into first place rather than just being content to be in the first group of people.

It seems to me like in these distance races, most of the hard work is done at the beginning and at the end of the race, with the middle being mostly about maintenance. And that's how I'm feeling about my pregnancy journey at the moment.

I'm currently right at the beginning of the third trimester with another three months before the due date. And it was right on three months ago that we first found out that there could be issues with the pregnancy.

I feel like we have already gone through the process of dealing with the initial diagnosis, preparing ourselves somewhat for those possibilities... the news no longer scares me as much as it did initially, the shock has worn off and I am pretty used to it. We have answered hard questions and thought through difficult scenarios, and I do feel quite content with where we are in this journey. But I know that towards the end of the pregnancy, there will probably be more obstacles to deal with, more trials to go through, more things to process.

I know that the end of the pregnancy will not be the end of this story - but it will be the end of my pregnancy journey and the beginning of a new journey.

So for now, we're in the middle of this marathon - holding onto the place that we got to earlier in the pregnancy and waiting for that finish line and the other issues that we will need to deal with as it gets closer.

We've moved!!

2010-04-23T09:40:00.000+08:00

Sorry I haven't been posting as much lately - things have been pretty crazy around here lately, with visitors, packing, all three of us getting a bit of a cold - Lana is especially miserable - and on Wednesday we moved into our new place!

The actual move went remarkably well. The removalists work so efficiently - they had all our furniture taken apart, moved over to the new place (which admittedly wasn't very far from our old place), all our boxes over here too, then the furniture all put back together again in it's right place - all in just over two hours!! We're still in the process of unpacking but we're getting there.

I'm really loving the new place. It's not THAT different to our old place - the layout is identical except we have an extra bedroom, bathroom and storeroom up the hallway, but being higher up makes it a lot lighter inside, and he actually have a view of the hills behind us, with a bit of green. From our bedroom, we can see Central Hong Kong in the distance (at least when it's not too foggy/smoggy!). I love the open kitchen, I can do stuff in the kitchen without feeling isolated from what's going on in the living area. We're waiting on a bit of furniture which will make it easier to store things (Lana's living out of boxes until then, she has no wardrobe) - but once that comes in another 2 weeks or so, we'll be able to get more settled in. We're also getting a "big girl bed" for Lana - I hope that she transitions well! She'll have a couple of months to get used to it before the baby comes along.

My brother is still here, he was meant to fly out a week ago tomorrow. Earlier in the week he was trying to reschedule his flight and the earliest available date was on MAY 26!! 6 weeks after when he was meant to leave. Yesterday he called again and they said they had some availability on April 28 (I think) but they need to confirm. I hope that it does work out for him. It's been great having him here but I know that he needs to get back for work and all. I'm looking forward to getting back in the swing of things as well - our routine has been so disturbed lately, with everything going on. Getting back to "normal" will be nice.

Pregnancy-wise, not much is going on. I'm heading into the 3rd trimester now - although I can never remember exactly how many weeks along I am. I think I'm 26 weeks now... The end is in sight at least! Now that we've moved and we've hired our helper (although we're still waiting for her to arrive), I feel a bit more prepared for the bub - a lot of the pressure I was feeling a month ago is lifted now. We just need to sit back and wait now!! :)

Thanks, Eyjafjallajokull

2010-04-18T00:09:00.000+08:00

I will never remember that name, nor do I know how to pronounce it, but because of this volcano in Iceland, we're now enjoying an extended visit from my brother!

Ant was scheduled to leave Hong Kong today to travel back to Copenhagen where he has been living for the past 3 years but Eyjafjallajokull had other ideas about that. All flights pretty much to anywhere in Europe have been cancelled - and Ant chose to be stranded here in Hong Kong rather than sitting it out at Beijing airport without a China visa. We called the airline to try and reschedule his flight and apparently they're all booked up until the end of April so he might be sticking around for up to two weeks or so!

I know that Ant should be going back since he has a job over there and he was meant to be back at work on Monday. But it's nice having him around, especially since we haven't seen him for a year. He'll be able to help us move on Wednesday too - I'm fairly sure that there's very little chance of him leaving before then. And once we move, he'll even be able to have his own room (although he won't have a bed in it ;) Not unless he stays for a couple more weeks)

So thanks, Eyjafjallajokull :) I'm enjoying my brother's visit and am excited that we don't have to say goodbye so soon!

Doctor's appointment - 24 weeks

2010-04-09T23:15:00.000+08:00

We had another ultrasound today, and no real new news there. The baby is growing, getting bigger, but things are still pretty much the same as they were at our last ultrasound a few weeks ago.

The doctor was really rushed today so our appointment was significantly shorter than last time (which was fine by me, I wasn't feeling up to laying on that hard public-hospital bed for an hour and a half while three different people of increasing seniority did the same scan over and over) - but we also didn't really get as much detailed information. We did get to see her face in 3D again and she still looks like Lana to me :) We didn't get to keep the picture though so I can't post it here.

The head and body are still average size and everything looks fine there - no problems with any of the internal organs. No hydrocephalus (fluid on the brain) or anything like that. She's currently head up so hopefully she can find some incentive to turn in the next 16 weeks. Like I mentioned in a previous post, sometimes SD babies have a harder time getting into the right position for labour and are breech, needing to be delivered by C-section.

All the long bones (arms and legs) are currently measuring at 18 weeks, or 6 weeks behind. The kidneys are still slightly swollen but the doctor said it wasn't really an issue. The main bit of information that I was wanting was the chest to abdomen ratio - normal is 0.8-1, and lethal dysplasias can be around 0.5 - our bub currently has a ratio of 0.75 - so not TOO bad there, closer to "normal" than to "lethal", and 2% better than our last scan. I said to Bernard after the appointment, if it keeps increasing by 2% each time, maybe we can get up to 0.8 by the time that the bub is born ;)

My next ultrasound will be in a month, unless I schedule an appointment with a private doctor before then. I may try to do that, or I may wait til 30 weeks. I don't know if there's much benefit in seeing another doctor who will tell me exactly the same thing. Although it would be nice to go to a doctor who will give me pictures of the bub at least ;)

The baby is getting stronger and kicking more, and harder, all the time. I feel her moving ALL day long now. She's just like her sister, very active bub! It's nice to be able to feel her moving - I don't worry so much about her when I feel her moving every single hour... Surely that's gotta be a good sign.

Due date

2010-04-08T22:53:00.000+08:00

I've previously mentioned this in my blog but last July, we were expecting and had a miscarriage. And it only just occurred to me yesterday that I totally missed my "due date". I've heard of other women who have had miscarriages and on their due dates, they remembered their bubs and what may have been etc... but I guess I've been so busy with house hunting, visitors, issues in this pregnancy that I didn't even remember my due date until a week and a half later... it's crazy to think that if this had've gone differently, we'd be holding our little one now. But I know also that if we hadn't lost that bub, we wouldn't now be pregnant with this one...

I'm also thinking of two friends in particular at this time - one friend who just suffered a miscarriage (which caused me to think of my own miscarriage), and another friend who is pregnant with her first baby, due this month (I found out she was pregnant just a couple of weeks after my miscarriage).

I want to share an email that Bernard wrote to some of our family and friends last July when we had the miscarriage. So much is so relevant to our current situation.

Dear all

As some of you may have read from Nicole's earlier e-mail, we were expecting another baby to be on the way, but unfortunately things didn't turn out the way we had planned and she had a miscarriage.

It is of course not only very disappointing for the both of us, but it is also very sad as we can only imagine as to what life would have been like with this child. Each life is different, each life is precious, and no one else can replace this little life which could have been. Having said that, I want to thank you all for your love and constant prayers. This stage of our lives would have been so much more difficult without your support.

There is so much in life that we can complain about - for example, why this has happened to us, why seemingly bad things happen to people who are good, to a family who loves God and have devoted their lives to serving Him. But as a family, we have chosen to thank our Lord Jesus - for all the blessings that He has showered on us, for all the favour that we didn't deserve, for each breath that we breathe, for each precious moment of life that we have. For the precious bundle of joy that He has already given to us. These are all things that we don't deserve - but He, in His infinite grace, mercy and favour, has chosen to give them to us anyway. So instead of complaining - today, we chose to thank the Lord for everything.

There was a man in the Bible called Job, and God had allowed the devil to destroy everything he had - his wealth, his health, and even his family. He lost everything he had and everything dear to him in a day. There are 42 chapters in the Book of Job, and I find it amazing that in all of those chapters, Job never blamed God nor complained for anything that happened. There were times that he questioned why those things had happened to him, but his attitude remained the same:

"Naked I came from my mother's womb,
And naked shall I return there.
The LORD gave, and the LORD has taken away;
Blessed be the name of the LORD."

Today, we strive to have an attitude like Job - there will be times that we question why this has happened, but we will continue to bless the name of the Lord.

I remembered that when Lana was born, we had dedicated her to the Lord - and for as long as she lived, we would love her and care for her, but her ultimate destiny remained in God's hands. This might sound like a foolish thing to do, but we had realized that God's hands were stronger, mightier and sturdier than ours - and we had decided to trust that His hands were more capable of looking after our little girl. A few days ago when I was in the shower, God asked me what I would do if He took away one of our children. I had hoped that my faith would have been enough to say that we had surrendered our children to Him, and we would trust Him if He choose to take one of them away. Today, our resolve remains the same - that our Lord Jesus holds everything in His hands, including the lives of our children, including the life of this child we lost. Blessed be the name of the Lord.

I look forward to the day when we get to heaven, when we will be able to meet not only our Lord face to face, but also to meet for the first time, this child that came only briefly into our lives, but who has already stirred deep emotions within us. When that day comes, I sincerely hope that all of you will be there with us to meet our child.

As I was walking out of our kitchen earlier tonight, I saw a Bible verse hanging from the wall - it was written a long time ago by a man called David, a man after God's own heart. In his time of trouble, he wrote:

"I would have lost heart, unless I had believed That I would see the goodness of the LORD In the land of the living." (Psalm 27:13)

I would have lost heart too had I not had the Solid Rock to cling to. I have seen His goodness. I believe that His goodness will continue in the land of the living. I believe that His goodness will continue to be shown in our lives.

Again, we appreciate all your love, prayers and support. We have much to be thankful for. We have hope today because God is good and is working in our lives. We have not lost heart, we have confidence because we know that Jesus lives and holds tomorrow in His hands. We have a firm foundation, a peace beyond understanding, a blessed assurance that all things will work together for good.

Blessed be the name of the Lord.

With love,
Bernard

Thinking of our baby who would have been entering the world around this time... even if I am a week and a half late...

A couple more specific prayer requests

2010-04-02T22:47:00.000+08:00

I know that so many people have been praying for us and for the baby - and this blog is a great way to keep so many people updated all at once. I've been thinking about adding in some other "prayer requests" for a while, specific things for people to pray for during this pregnancy.

I already mentioned that one of the most important things for the baby's survival is that the rib cage is not too small for her lungs to grow. This is still the most important specific thing that people can pray for - that her lungs will have room to grow and be large enough to support her life when she is born.

Another thing that I'd really like prayer for is the amount of amniotic fluid that I have. Currently the levels are normal, but there are two common problems with babies with skeletal dysplasia, they often have either too much or too little amniotic fluid. Too much can be caused if the baby has problems swallowing, and too little can be caused if the baby has problems with the kidneys. At our last two ultrasounds, there were signs that the kidneys were swollen, this may indicate some kind of a blockage, so I don't know whether that means that we're more at risk for too little amniotic fluid, but so far everything is OK there. We can pray that it stays that way!

Both of the problems with amniotic fluid levels may lead to the baby needing to come early - so please pray that I will be able to carry the baby to term, so that she has the best chance of development. I know it's already an uphill battle so she doesn't need the additional complications of being premature as well.

Another thing is that it's quite common for babies with skeletal dysplasia to be breach. I think the reasoning is, their arms and legs aren't as long and strong for them to turn into the correct position. This may lead to needing a C section instead of being able to give birth naturally. I know that ultimately, if it's in the baby's best interest, we will need to do that. But I really don't want to have to go through that! So even though that's more a prayer request for me rather than for the baby, please add that point to your prayer list as well!!

There's just a week now until our next ultrasound so I'm looking forward to seeing the latest images and measurements of our little girl. Hopefully there'll be a bit of good news in there too.

Thanks so much for all your support and prayers so far, I really appreciate it all. I don't think I would be able to go through this hard time without my family and friends who have really given me so much strength, and ultimately that strength comes from God. So thanks for thinking of us and praying for us. Please remember to keep us in prayer over the next few months as well :) There's still a lot ahead of us...

We found a place!!

2010-03-28T18:48:00.000+08:00

After a couple of weeks of looking for places, we've finally found a place that suits our budget and needs. It's not "perfect" but I think that given the circumstances, it's definitely the best that we've seen that is in our budget (and I've spent many days looking - dragging poor Lana around with me!)

Our new place is in the same estate as the one that we currently live in so we don't need to move far. We've just gotta move to the next building. The new place has an extra bathroom, an extra bedroom and a storage room as well. The whole place has been renovated so it's a lot more new feeling than our current place. They've turned the kitchen into an open kitchen which really makes the kitchen/living/dining room look a lot bigger, even though it's about the same size as our current area. Ideally we would have liked another room for our helper as well, but the baby can share a room with us for a while, and when she gets a bit bigger, we can put the two girls in a room together. Our helper can get the 3rd bedroom and if need to, we can use some of space for extra storage as well. Many people here have the helper sharing a room with the baby or a young child but personally I don't really like that idea.

We will be able to move in around April 15 or so, so we're going to spend the next couple of weeks going through our stuff, boxing it, chucking some other stuff, fun fun! At least we don't have far to move it, it literally takes 2 minutes door to door.

The processing of our helper has begun as well - it should take around 5-6 weeks to process and so she should be here shortly after we move. I'm really looking forward to having an extra pair of hands around.

I really feel now like a huge weight has been lifted off my shoulders. We just have to get through the moving process and then we can just focus on the baby and this pregnancy.

Nothing much new has been happening on the baby-front. She's growing, kicking more - we can feel her now from the outside of my tummy. It's nice to know that she's getting bigger and stronger - hopefully we'll be able to see that on the next ultrasound as well.

I have a check up on Tuesday, but it's really just a check up for me so I'm not likely to find out any more information or anything. Then it's just until 2 weeks until our next scan. That's when we'll be able to find out a bit more about how the baby's growing.

In addition to moving, my brother will be visiting us from Copenhagen for two weeks over Easter. It'll be so good to see him again, we haven't seen him since last May when Lana was only 7 months old - so I'm sure he'll notice a huge change in her! And we'll also have Bernard's old youth pastor from the Philly visiting us with his wife for 5 days at the same time. It'll be fun to have them all here, but crowded in our small place! Don't be surprised if I'm not blogging as much, but I'll get on to post about my doctors visits at least.

Choices and changes

2010-03-25T13:29:00.000+08:00

This week has been pretty crazy. Emotionally, it's been up and down - there's a lot going on at the moment and it all seems to be demanding so much attention.

When we found out we were expecting again, we decided a) to move house and b) to hire a helper. Our current apartment is a cozy 780 square feet which is perfectly fine for the three of us, but adding in a baby and a helper would make it a bit TOO cozy for our liking!

Having a foreign domestic helper is very normal in Hong Kong. Compared to the average wage for professionals, the cost is quite small. They help with the cleaning and cooking, and also childcare. There are no daycare centres here where you can take a child to for one day a week or something like that, and being an expat, we don't have an overabundance of free family help so it will be nice to have an extra set of helping hands.

The only way to have a legal helper is for them to be live-in, so that (along with the coming baby) is the reason why we need to move in the next couple of months.

We started our house hunting a little while ago, but in the past couple of weeks we've really stepped on the accelerator since rental prices are rising at the moment. A lot of the places I see online at good prices are already gone and our current choices are more limited. It's difficult making the decision, how much to spend, how far away to move. If we move out to 45 min from Bernard's work on the other side of the harbour, we can get something nicer that is very much within our budget and won't encroach on our savings. But if we want the convenience of being closer, we need to pay for it somewhere else, either in settling for somewhere smaller or older, or by stretching the budget.

Because Bernard works full time, I've been the main person doing all the leg work, looking at places, collecting prices, ruling out certain places and deciding to look more into other areas. It's all hard decisions, and all non-pregnancy related, but if it wasn't for this bub, we would be happily continuing to live as our family of three in our cozy 780 square foot place.

In some ways, it's been an emotional week for me. I think probably because of how busy it has been, I've been out every single day dealing with it all and I feel the pressure to make a decision soon. Also because of the uncertainty of the pregnancy. If there were no issues, I'm sure these changes would be much more exciting - but with the problems the baby is facing, it's more difficult for some reason.

On one hand, I feel like if we make all these changes and then the baby doesn't make it, maybe it's all been for nothing. But then again, I know that these really are necessary changes and regardless of the outcome, I think we're doing the right thing by moving and getting a helper.

We are starting to make progress though. I have gone over all the details of the contract with our future helper and we've agreed on it all, I just need to go to the agency who will oversee all the paperwork/visa side of things, sign some papers and within 5-8 weeks or so, she should be out here in Hong Kong!

Regarding the house hunting, there is one building that I will go see tomorrow, I have seen some pictures of it and the floor plan and it looks promising. Hopefully this place will end up being "the one" for us. The price is lower and it is in a convenient place, close to Bernard's work. It is also right next door to the building where Bernard's dad lives. The compromise in this place is that the building is currently having renovations for the next few months, so it may be a bit noisy during the day and dusty as well. That is why the prices are comparatively low. If we do get it though, the price will be set for the next 2 years so if we can get through the renovation period fine, at least we would have gotten a decent price for the rest of the time.

Anyway, please pray for us that we'll find the perfect place for us for our expanding family and that all the changes will happen smoothly. We'd love for it to happen soon, if possible! I can't wait for the house hunting stage to be over...

Expect the Best but Prepare for the Worst

2010-03-22T10:35:00.000+08:00

For anyone facing a poor prenatal diagnosis or other medical issues, or even life difficulties, one phrase that you might commonly hear is "expect the best but prepare for the worst". I generally don't have that much of a problem expecting the best. I'm mostly an optimist by nature. I have a touch of realism, a bit of a sarcastic point of view at times, but I mostly see the good in people and in situations, even when things are bleak.

I know that the odds that we are facing in this pregnancy are probably around 50-50 (or if I'm realistic, probably even worse since we found the problems comparatively early, usually a bad sign) and at the moment, it's hard to tell what the outcome will be, but I just feel like things will be ok. I really believe that this baby will live. In fact I believe it so strongly that even if the doctors did give us a lethal diagnosis, I don't think that I would believe that the baby would not survive until after she was born. I think I've heard from at least 15 people who had lethal diagnoses and the baby lived, I know it's not uncommon.

What I struggle with is the part which says "prepare for the worst" and although I hope that the worst will not happen, I know that we should make plans in case it does. I know that there will be issues that we will need to work though, and in the long run, it's probably better that we consider those issues at least in part now before the baby is born, rather than having to go through all those issues in the days after the baby is born, when I'm still in the hospital recovering from childbirth, with my milk coming in and no baby to feed. If the worst does happen, in those days I want to be able to focus on grieving rather than needing to make funeral plans there and then.

It's hard to maintain a balance in this area, because one person could be so much "expecting the best" that they don't do anything to "prepare for the worst". And someone else may be so wrapped up in "preparing for the worst" that they can no longer "expect the best".

One of my new friends, the mother of a baby with a lethal SD diagnosis who lived, (find her blog here) wrote this to me in an email the other day:

Unfortunately, I can’t say that the rest of your pregnancy will get easier. We never got the answers we wanted before Grant was born. The doctors made guesses, guesses that broke our hearts, and they still were not able to give us the information we needed. And their guesses were wrong. I was on a never ending roller coaster of having hope, then having doubt, having hope, then feeling discouraged. I turned to God and didn’t even find peace there. Nothing gave me the answers I wanted. The hospital had us participate in a group called Angel Watch. 3 nurses came over to my house once a month for the remainder of the pregnancy to help me cope, and prepare for the death of my baby if necessary. I guess it helped to have someone to talk to, but towards the end when they wanted to talk about arranging a burial plot and getting preliminary funeral plans together….I just couldn’t handle it. They gave me some papers on it, and I never read them. I realized everyone expected my baby to die, but I just couldn’t take it that far. Instead I set up my baby’s nursery. I planned for him to come home. It was a horrible time of uncertainty...

Now looking back, I wish I hadn’t let the doctors ruin my last trimester. I felt silly for buying clothes and getting my baby’s room ready, but I shouldn’t have. The doctors don’t know anything more about your baby than you do. They’ll do their best, but in the end you just have to wait and see what happens.

I too have wondered "Should I buy things for this baby?" On one hand, I want to - but then on the other, there's nothing that she really needs - and maybe if I buy things, it will make it more traumatic if we need to deal with the loss. I know some parents cope in this situation by carrying on as normal, other parents cope by just completely waiting and seeing - and if the baby does make it, they can always go out and buy everything after the baby is here anyway.

I'm trying to be balanced in this area, expecting the best but being prepared for the worst. And it's so hard to know what "balanced" is...

On a side note, I'm really interested in other people who had poor prenatal diagnoses and how you balanced these issues. Did you have any regrets, things you wish you had done differently? Did you buy things for the baby in spite of the diagnosis? Did you plan the funeral or assign that to other family members/friends? Did you do that before the baby was born, or only after the loss? I know that each person is different and I can't take someone's experience and apply it to myself, because your balance may not work for us. But I'm really interested. Please reply to this post, or email me at nicolejoy81@gmail.com

My thoughts on Prenatal Testing

2010-03-19T12:41:00.000+08:00

I sure have a lot of thoughts these days, don't I?

There are a lot of ideas out there about prenatal testing, how much is beneficial, how much is not good, when is it worth the risk of invasive testing, etc. Particularly when you already have decided not to terminate regardless of the outcome, some people think that prenatal testing can just add more stress and worry to a pregnancy.

For me, the argument is somewhat irrelevant because all of the issues in my pregnancy were very evident on my 20 week ultrasound, something that is standard just about anywhere in the world, so in my situation, it wouldn't have taken any deliberate prenatal screening tests to notice that there were issues in the pregnancy. I would be in exactly the same situation now no matter which road I took to get here.

I am of the belief, however, that prenatal screening can be a good thing if it prepares you for what is to come when the baby is born. I do think that any screening should be done in an informed manner, understanding what certain results mean, and always knowing that tests can be wrong. Certain tests have higher error rates than others, amniocentesis is near 100% accurate while generally diagnosing something by ultrasound is much less accurate.

I also think that parents need time to adjust to problems in a pregnancy, and from reading other people's blogs, it sometimes seems like those who knew their child may not make it had a much better experience with their child when the baby was born. I remember reading an extremely sad story about a lady who had a non-problematic pregnancy and when the baby was born, he didn't start breathing. The doctors said he had probably passed away the previous day. The shock of this meant that the mother didn't even want to see her child, they had no photos, and it seems to be something that she had a lot of regret over. I know there was no way in her situation that anyone could have predicted the outcome, but if there was any way she could have been prepared, maybe she would have less regrets now, I don't know.

I do think that different people respond differently to situations, so there is probably no universal "right" or "wrong" in this area. Each person needs to decide for themselves - and I think they need to be free to decide for themselves too. I felt a bit of pressure from certain people to not have an amniocentesis because of the risk - but these people really didn't know anything about our situation, they just feel universally that amnios are wrong. I don't think it's right or fair for someone to try and impose their belief onto someone else - please let people make up their own minds in their situations. Usually if they're considering an amnio, they've got enough to work through without having to deal with other people's negativity as well. On the other hand, I also think it's not fair to pressure someone to get prenatal screening tests done if they don't want it.

Before we knew there was any problem in this pregnancy, we chose to have the "Oscar test" at 13 weeks. Some people call it the Nuchal Fold test, but it is combined with the results from blood work to provide a risk factor for Downs Syndrome and Trisomy 18. The test is non-invasive but it can only provide a risk level, not a definite answer. In our situation, the risk of Downs was pretty high at 1 in 7.

These results were definitely daunting - there was a 15% chance of Downs, and an 85% chance of the baby being fine. We were told that there may have been other issues, but Downs was the main thing on our minds.

We chose not to do the CVS because of the risk of miscarriage - at 1 in 100 or so, it's significantly higher than the risk of miscarriage from amnio (usually quoted as 1 in 2-300 but recent studies have shown that it may be as low as 1 in 1600). CVS could have been done right away, but amnio, we would have needed to wait for 3 weeks until I was 17 weeks pregnant.

We had a lot of discussion, prayer, more discussion, more prayer about whether or not to do the amnio. I was uncertain, my husband was much less "wishy washy" about it than me. In the end, we decided to go through with the amnio because for us, our risk of the baby having chromosomal problems was significantly higher than the risk of problems with the amnio, and we felt that the benefit of knowing in advance would be worth the small risk. I knew that this baby's life was in God's hands and NOTHING could harm the baby without Him allowing it - so I was trusting and believing that God would protect the bub while we found out for sure whether or not it was Downs.

In the end, we went for our appointment for the amnio and in the preliminary scan, the doctor said "This does not look like Downs. It looks like a skeletal problem. You need to go and see a specialist. They may recommend an amnio, but I think they should look at the baby first because amnios may not be as helpful in diagnosing these kinds of problems". So after all that, we weren't even going to get an amnio!

After our appointments with the specialists, we decided that in our situation, the benefits of an amnio weren't worth the risk to the baby. In the case of chromosomal abnormalities such as Downs Syndrome or Trisomy 18, an amniocentesis can be 99.9% accurate. In the case of genetic abnormalities such as most skeletal dysplasias, an amnio often gives no or little information. It may be able to diagnose the problem, but it may not. We didn't think it was worth the risk for a "maybe".

I do wish there was some kind of test that could give us a 99.9% accurate diagnosis right now but unfortunately there isn't. So we're in that awkward position of knowing there is a problem but not knowing what it is. Still, I am glad for the prenatal testing that we have had, and that we are able to prepare ourselves in advance for this little bub. I am glad that we will not be shocked if our baby needs NICU. With Lana, she ended up in Special Care for 8 hours, just for observation, and it was extremely hard for me because I wasn't expecting it.

There will always be those who decide against prenatal testing of any sort. There are people who don't even want ultrasounds. And that's their prerogative. I hope that those people won't be completely shell shocked if the unthinkable happens to them, and that they will be able to deal with it quickly. But for those of us who could benefit from a little foreknowledge, I am grateful for modern technology and testing and I hope that it improves in the future to the point that there will be less invasive, more safe and more accurate tests for a wider range of possible problems.

Please pray for Carys

2010-03-18T12:12:00.000+08:00

Right around the time that I found out that we had problems with this pregnancy, I also heard that a friend I had made here in Hong Kong, Donna, was going through her own struggle. I met this friend through Lana. Her daughter Carys is a few months younger than Lana (I think she's around 14 months old now). At Carys' one year check up in January, Donna asked the doctor about a small lump in her abdomen, she though it was perhaps just a bowel blockage. After some tests, they found out out it was stage 3 neuroblastoma - cancer. Faced with this news, Donna and her family have relocated back to Melbourne to have treatment there. Carys is now on her 2nd round of chemotherapy. Donna's started a blog here where she is sharing Carys' struggle through this. Please pray for Carys, that the treatment will be successful and that she will have a full recovery. And please pray for the Donna and Ian, and also their older son Tane, that they will all have the strength to go through this horrible time.

20 week scan - public hospital

2010-03-16T10:07:00.001+08:00

So yesterday I went to the public hospital to have my scan. This public hospital is a teaching hospital so at first, a student doctor started the scan. It was pretty slow going because she seemed like she hadn't done many ultrasounds before. After a while, the nurse/doctor supervised her, and then after another while, the head doctor came and took over. All up, they scanned the baby for an hour and 20 minutes!! And the beds there are soooo uncomfortable!! But it was nice to see the baby for so long. She was moving a lot during the ultrasound and it's so cool to feel her and see her move at the same time. It gives her movements more meaning, to be able to see her moving as well as feeling it.

I had a lot of questions and had them check a few things, things that in my research may be indicators of what type of SD the baby has. Here are some of our new findings from yesterday:

The baby does not appear to have a cleft lip or a cleft palate. A cleft palate is present in about a third of babies with Diastrophic Dysplasia - but it's present in just about all of the lethal form of DD called AO2 (Atelosteogenesis, type II). The feet also don't appear to be very clubbed, and the baby is able to make a fist with her hands (something that some DD babies can't do). The bones also appear to be straight rather than curved, another thing common in DD babies. Last time, I thought he said that the kidneys were small, but he actually said that they were swollen - I think maybe I just misunderstood him last time. That could indicate some kind of blockage, but I don't really know the relevance of swollen kidneys. The chest to abdomen ratio at the moment is 0.73. "Normal" is between 0.8-1, "lethal" is around 0.5. So between 0.5 to 0.8 can indicate impaired lung function, but maybe or maybe not lethal. At least 0.73 is closer to 0.8 than it is to 0.5 so hopefully the number stays that high, or even increases rather than decreasing.

I asked the doctor if he thought it could be DD, and he said "The hands certainly look similar to that but we can't be sure. It's quite rare and Achondroplasia is much more common."

I also asked the doctor whether he thought that this condition would be lethal or non-lethal, and he said that it was hard to say for sure at this stage, but it's a bad sign that it presented so early. Usually if skeletal dysplasias are detected before 20 weeks, it is lethal. Although there are exceptions to that, and DD is one of those exceptions.

So all in all, I have some questions answered from this appointment, but we still don't have an answer as to what exactly is wrong and whether the baby will be able to survive. I do however feel that the doctor there was more willing to answer my questions and discuss his thoughts more openly so I did feel like I got more out of that appointment compared to my appointment last Friday with the private doctor. On the down side though, out of all the doctors I've seen in Hong Kong for any kind of problem, he has to have the poorest English. It's harder to understand him and sometimes he misunderstands me too. But it's still nice to feel more listened to, and I appreciate that about him.

My next appointment in the public system is on April 9 - I think I'll be 24 weeks, and then with the private doctor on April 12. Until then, it's just wait and see.

Keep on growing, little bub!!

Why not knowing is so hard

2010-03-15T12:37:00.001+08:00

I thought I'd write a follow up post to my one about not knowing what the outcome is going to be and my frustration in that area. I feel a bit misunderstood in some ways about my last post and thought I'd explain why not knowing is difficult.

It's not that I don't trust God (maybe I do need to trust Him more, but don't we all?), and it's not that I'm overly worried about it all (yes I am concerned but it's not consuming me. I'm still playing with my daughter, meeting up with friends, laughing, enjoying life at the moment). I don't feel like I am wasting time thinking about things that are not going to happen. I'm not depressed. What I am doing is trying to prepare for the future, and it's a complicated future.

I know that not many people have had to go through something like this, and I know that even those who have, their situations are usually different to my own so maybe it's impossible for others to understand. We have the added complication of living in a country that we don't call home and so if a funeral will need to be planned, it will have to involve body repatriation in some way or another. We would be negligent if we knew that there was a likelihood of needing such a service and not looking into it in advance.

What I would love, but do not have, is some assurance that I will not need to plan a funeral for a child that is alive and kicking inside of me, however I know that I may not get that assurance. I do not have a specific promise from God saying that this child will not die, I will not ever have a 100% guarantee from the doctors. We most probably will, in time, have a "probably" one way or another. I do have a "gut feeling" that this child will live. But I will most likely not get any complete assurance one way or the other.

I do think that I need more patience and maybe these are issues that I should be thinking about in 10 weeks time when I'm 30 weeks pregnant and the doctors will probably have more to say about what's going on. Maybe we should look into funeral plans at least a bit regardless of what happens. I'm sure it's better to be somewhat prepared than to be blindsided and then need to start the preparations from scratch in the days after delivery and loss.

We are fortunate that this is our 2nd child and so we won't need to go out and buy all the baby things and then have to face an empty nursery. Even if there were no complications, we wouldn't be buying much anyway, particularly since we know it's another girl, we won't even need new clothes. So at least we don't have those issues to think about so much.

I don't think the answer is to just completely stop thinking about the issues that we are facing. To do so would be doing ourselves and our baby a disservice by not preparing ourselves when we have been given the opportunity to prepare (so for those of you who said that I should just not think about these things, I have to respectfully disagree with you on that issue).

I think that from here, our plan is to stick with the current doctor for now, knowing that I am still only 20 weeks pregnant and most probably she's waiting til later in the pregnancy to start making a diagnosis. There are things that I really do like about this doctor. If I am still feeling the same frustrations about her after a couple more appointments, I will seek a second opinion when I'm around 30 weeks pregnant. By then, the issues should be easier for another doctor to diagnose, and that also gives our current doctor time to grow on me a bit more.

I also think that I will hold off thinking about the possibility of a funeral for a while - and when I'm 30 weeks, we can think about it again, whether we are confident enough to not look into it, or whether it would be better to do a bit more research (hopefully unnecessarily, but it's better to look into it and not need it than to not look into it and wish you had).

And in the mean time, I will draw comfort from knowing that even though I don't know what will happen, God knows and He has a plan for us. I know that although I can't yet see the end of this tunnel, I know it's only just over 4 months until the little one will be here and we will know more of what the future holds. Until then though, we just need to keep walking and see where this journey takes us...

Not Knowing

2010-03-13T20:47:00.000+08:00

Since my appointment yesterday with the doctor, I've been really having a hard time with things. I had certain expectations with the appointment, I thought it would answer some more questions and give us some more information but I walked away with pretty much nothing new at all. It's quite a feeling of hopelessness, not really knowing what's going on. I like to know stuff and can't handle the not knowing. Even when my husband starts a sentence and then takes it back, I make him tell me what he was going to say because I hate knowing that there's something that I don't know but not being able to figure out what it is!!

I've been thinking - should I go to yet another doctor and get another opinion on things? I'd love to have a doctor who was as blunt and upfront with me as possible and I don't feel like I have that right now. I know that they cannot guarantee a correct diagnosis at this stage but I'd like to at least have some idea of what the possibilities are. I'd like to hear an opinion at least, besides "wait and see". I don't even know how to find a doctor who is specialised enough in these areas AND blunt enough to tell me their honest thoughts...

Or maybe I should just accept not knowing until later in the pregnancy, or when the baby is born? I know that no diagnosis will be 100% anyway and I've read stories about how both lethal and non-lethal diagnoses were wrong, so maybe it's better to not know, because at least that way aren't expecting anything... I really don't know. I know that in all likelihood they should be able to tell me whether they think the baby will live later in the pregnancy, even if they are hesitant to predict that now...

Two things that friends have said have stuck with me. I was talking to my brother yesterday and he said "Well for you, a diagnosis won't change anything anyway because you're planning to continue with the pregnancy anyway" - and I can see that... maybe I should wait until later in the pregnancy before I get frustrated at not being told whether the doctors think my baby will live because really it doesn't affect anything either way... And another friend commented on my blog post yesterday saying something like "regardless of what the doctor says or doesn't say, that doesn't change the health of the baby - and that's the important thing" - and again I can see that. For now the baby is healthy and what will be will be. The doctor's words aren't going to change anything, and they can be wrong anyway - so maybe I should just be happy that for now, the baby is growing and developing, and has nothing immediately life threatening.

Maybe my "need to know" is doing myself more harm than good. My husband is better at accepting that there is stuff that he doesn't know and he's generally happier to wait to find out (except in the case of birthday presents!). Maybe I should learn from him and trust God that in time, I will find out the answers rather than troubling myself with trying to find them right now.

The hardest thing for me right now isn't the thought of raising a child with a disability. I'm ok with that, particularly in this situation where chances are, the baby's mind will not be affected. I don't want to lose the baby but I'm prepared to go through that if we need to. The hardest thing though is not knowing which of these two extremes it will be. Not knowing whether in 4 months, we'll be bringing home a special little girl who will change our lives more than we could have imagined, or whether we're going to be burying her. I hate not knowing...

20 week scan

2010-03-12T14:50:00.001+08:00

Today I had my 20 week scan. I've got kind of mixed feelings about how things went there...

The good news is that the baby is growing, the head and trunk are still measuring normal, there is nothing right now that says that the baby will definitely not be able to live. The limbs are still measuring short but they have grown since the last scan (although they are now measuring at 15 weeks, but 3 weeks ago they were measuring at 14 weeks).

There's no real "bad news" per say, but it was quite frustrating, I came armed with my questions and the doctor (understandably, I guess) was quite vague in terms of the responses. It was still just "wait and see" and "when the baby is born..." etc. I outright asked her what she thought the baby's chances of survival were but she wouldn't answer. I understand that she can't say for sure "this baby will live" or "this baby will not live" - but I don't understand why she can't say "from the way things look now, I would guess that the baby has an good/fair/poor chance of survival, but things can change either way so we need to keep monitoring it closely". She did more talking about me and how it's normal if I'm feeling depressed and asking how am I coping emotionally than she did talking about the baby. Also I didn't get to keep any of the pics of the baby this time which was kind of disappointing. I didn't specifically ask though, I probably should have... We did get to see the baby's face again on the 3D scan and I think she looks a lot like Lana...

I have another appointment with a different doctor on Monday, I'm currently seeing both a doctor in the public system and one in the private system as well. I figured I'd keep going to the two of them and that way I'll have two opinions. But if it's two closed-mouth opinions, I don't know if there's much good in that...

Half way there!

2010-03-10T10:33:00.000+08:00

Today, I'm 20 weeks pregnant. 20 weeks down, 20 to go. This pregnancy has definitely been flying by much faster than my first time. I have a little one to run around after and she keeps me busy and I don't have as much time to just "be pregnant". First time around, I joined a "due date club" online and started meeting them when I was only 8 weeks - some of them I still see now. This time, I thought it would be nice to join a due date club but it hasn't really happened like last time. First time around, I was reading all the pregnancy books and getting the "Your Pregnancy This Week" email updates, this time I did manage to sign up for the emails but I can't remember the last one I actually read (I think my baby was the size of a cherry or something ;) ).

I'm sure that the next 20 weeks will fly by as quickly as the first 20 did and in no time, this will all be the past and we'll have a better idea of what the future will hold. The next two months are going to be very busy for us - we've got three sets of visitors coming over here (so excited to see everyone!) - that will keep us occupied for a while! Then depending on dr's orders, I MAY try to get back to Oz before the little one gets here (wait and see for that one). In addition to that, we need to move before the bub gets here (better start looking!!), and we also want to hire a helper as well. So much to do, so little time!!

We have our next ultrasound on Friday so I should have a "medical update" soon. Hopefully it all looks good and non-life threatening! We're praying for a good report there :) I'm going to go armed with questions. Hopefully we'll be able to get some more answers this time.

Thank you so much for everyone who has been supporting us over the past month or so - just another few months to go now. Please continue to keep us in your thoughts and prayers over the next couple of months. I know it does make a difference and we have been carried through this time by the support and prayers of others :)

What it means to be loved

2010-03-09T18:33:00.001+08:00

I just found this song online and am sitting here listening to it with tears pouring down my face. Here are the lyrics:

What it Means to be Loved - Mark Schultz

For five months and eight days my wife and I had waited
Gettin' ready for our baby girl
But when he called the doctor said I need to see you
And could you come in soon
Then something died inside of me to sit with him and hear
The tests that said our baby may not live to be a year
Then turnin' to my wife and he said "what do you wanna do?"
And she said...

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
And I wanna live every moment until that day comes
I wanna show her what it means to be loved

So we spent each day, watchin' every minute
And prayin' for our baby girl
And I will not forget the way I felt that moment
When she came into this world
But they took her from the room just
as soon as she was born
And watchin' through a window I could see her holdin' on
When a voice inside me said...

I wanna give her the world
I wanna be her dad
I wanna hold her close for as long as I can
And I wanna live every moment until that day comes
I wanna show her what it means to be loved

I said everyday
we've got to bring her home
she's been out to prove the doctors wrong
Oh and you should see her now
she's as pretty as her mom
And there's a boy at the front door
waiting just to take her to her high school prom...

And he wants to give her the world
Wants to hold her hand
And someday she may get a wedding band
But she's gonna live every moment until that day comes
And we're gonna show her what it means to be loved

Oh yeah (what it means to be loved)

Show her what it means to be loved
What it means to be loved

You can listen to the song here.

Here's the story behind the song in the words of Mark Schultz (to see this as a video instead, go to Mark's webpage and click on "What it means to be loved" - it is pretty much word for word what I'm posting below.)

“What It Means To Be Loved” is a song that basically wrote itself. I just happened to be in the room when God dropped it in my lap. Its genesis was actually from a story that my wife told me about a family that she’d worked with at the hospital.

The mother was expecting a child and was told that tests revealed health issues that meant the baby probably wouldn’t live long after birth. Although the doctors suggested terminating the pregnancy, the mother decided she would love the child as long as she could. I took those emotions and that unselfish commitment and poured them into the “What It Means To Be Loved” lyrics. The song starts out:

For five months eight days
My wife and I had waited
Getting ready for our baby girl
But when he called the doctor said, “I need to see you”
And “Could you come in soon”
Something died inside of me to sit with him and hear
A test had said our baby may not live to be a year
And turning to my wife he said
What do you wanna do
She said…

It was at this point of the song when I was writing it that these words just came spilling out:

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
I wanna live every moment, until that day comes
I wanna show her what it means to be loved…

And I knew as soon as I hit this chorus and tears were running down my face that this is one I’m going to be playing for a long time. It’s the only song that I’ve ever played in concert where it got a standing ovation before the end of the first chorus was over.

To me, what the song says is that we as Christians are called to love. If that means loving a baby that’s going to be here for 7 minutes or 70 years, it doesn’t make any difference, you just wrap your arms around them and pour yourself into them. I love the last bridge going to this:

Well ever since the day
We got to bring her home
She’s been out to prove the doctors wrong
You should see her now
She’s as pretty as her mom
And there’s a boy at the front door waiting just to take her to her high school prom

And he wants to give her the world
Wants to hold her hand

Inspired by this family’s story, my wife continued to look at the implications for our own family. She said, “Since you’re adopted I think we should adopt kids too.” I said, “Ok that’s fine.” She said, “I think we should adopt kids maybe with special needs.” And I said, “Ok, that seems like a tall order.” She continued, “Maybe someday we adopt kids with special needs that the doctor only knows they’re going to live for a year or two.” I responded, “Honey, why would we do that?” And my wife said, “Because before they go to heaven, I want them to know what a great Christmas is like and I want them to know what a great birthday is like and let them know that they were loved well before they get to heaven and realize that love. I want them to know that they were loved here on earth and celebrate them here.”

That’s the kind of wife I’m married to. These are the kinds of songs that come out of those stories. It’s a special song and I’m grateful for all the people who’ve walked through loving unconditionally. I hope the song means as much to folks as it does to me.

This song already means a lot to me and I've only heard it through once. I'm already showing my little girl(s) what it means to be loved, and I will continue to do that as long as I have breath...

My thoughts on abortion

2010-03-08T23:13:00.000+08:00

I had always known that I would not under any circumstances have an abortion. So in this pregnancy, when we found out that there may be problems, it wasn't even an option for us. I believe that God gives life, and who are we to take a life?

When we found out that there was a possibility that our baby may have Downs Syndrome, it wasn't even a consideration that we would possibly abort the pregnancy. However when I was researching about Downs Syndrome, I found out that something like 90% of women who find out through amniocentesis that their baby has DS chose to terminate. The numbers astounded me, I had no idea that it would be that high! I think that this number is so high because of a couple of reasons. Firstly, many women who would not terminate also decide not to get the amnio in the first place. This probably drives the statistic up a bit. Secondly, from my experience, as well as reading other people's blogs, some doctors often try to pressure people to decide about termination as soon as they find out the bad news, sometimes even offering the procedure the following day. I think that the doctors are probably coming from the point of view that termination is less complicated earlier in the pregnancy. And also, there's a time at which it becomes no longer legal, depending on where you are.

My personal opinion is that if someone does receive bad news in their pregnancy, they should wait at least a week before making any decision about termination. (Well actually, I am personally against termination entirely, but I'm not going to force my opinion on others.) The reason why I suggest waiting is that I know that it takes a while for the news to sink in. I know that when I found out that the problem in this pregnancy was NOT Downs Syndrome but Skeletal Dysplasia, I have to admit that I had negative thoughts and if it hadn't been for my stance against termination, I may have started to consider the idea. I asked God "Why did you let me fall pregnant if you knew that there would be issues?" and I thought "I'd rather NOT be pregnant, then at least I could be trying to conceive and maybe I'd have better luck next time." I'm really quite ashamed to admit that now because in the past three weeks since we got the news, my thinking has changed soooo dramatically that it's not funny.

When we initially got the diagnosis of Skeletal Dysplasia, I was WISHING that our baby had Downs Syndrome. But I'd already had a couple of weeks to get used to the idea of DS. I knew that people with DS generally live on average til their 50's. Babies with DS are often happy and sleepy, and children with DS bring a real joy to their families. Yes, the disease affects their intelligence. Yes they will have special needs, but at least they are generally pretty healthy and live a decent life span. Since DS is one of the most common congenital diseases, there is a lot of support for parents and families affected with DS, options available to them for schooling and even jobs as they get older. Yes it's a different, more difficult life. But I really felt a sense of "We can do this, it's not so bad".

Skeletal Dysplasia on the other hand scared me completely. The 55% mortality rate is the thing that really hit me. I had quite a high chance of not even being able to spend more than a few weeks with my baby, maybe I wouldn't even get to see her alive at all. I felt that I could deal with disabilities, but what I really felt I could not handle was the possibility of losing a child. I can understand the initial feeling that hits someone faced with that possibility. It's the feeling of "What's the point of carrying this baby for the next 4-5 months, going through all the associated pain (both physical and emotional), and then not even being able to bring home a baby at the end of it all?"

With the three doctors that I saw in those couple of days, I was always sure to bring up the subject of termination myself so that I could tell the doctor that we would not consider it before they could even present it as an option. I'm glad that I did that because even though it was presented as an option, I had already decided and was not going to be swayed, even though my emotions were crying out thoughts that I never thought that I would have.

Now that I have had the chance to really research Skeletal Dysplasias, I am all the more sure that I am making the right decision to not terminate - even if it wasn't for my personal beliefs. Firstly, with these kinds of birth deformities, there are two categories - lethal and non lethal. If our baby had the lethal form, then sadly, there is only one outcome in those situations and that is death. Nothing I do would change that outcome, but at least choosing not to abort, I will not have the associated guilt and "what if the doctors were wrong" that would come along with that. And in my limited research, I've found at least five or more lethal diagnoses that produced babies with non-lethal forms. If our baby has a non-lethal form on the other hand, generally speaking, there is no reason why she would not be able to live to a ripe old age, go to university and do just about anything that she wants. I know that there may be other medical issues that come with the disease, but I am sure that I would never regret my decision not to terminate.

I really think that it is one thing to say "I would not abort", but it is another thing entirely to be in the situation where abortion would be an understandable option and to go through that knowing that choosing not to abort is still the right decision for you. And I have walked that road, and I am more sure now than ever that we are making the right choice and giving our daughter every opportunity to live.

Lana Joy

2010-03-07T23:48:00.001+08:00

Most of this blog so far, I've been talking about my pregnancy and the issues that we've been facing, but I wanted to take some time out and focus on my first born daughter who is one of the biggest blessings in my life.

My little 16 month old munchkin has to be one of the cutest and smartest little girls that I know, and of course I'm not being biased ;) I love this age - she's learning so much so fast and is really starting to develop into a cheeky little monkey.

Tonight as we were putting her to bed, she decided to give Bernard and I a little "puppet show" on the rail of her crib (copying something that Bernard has done with her a few times before). She also jumped for the first time (mattresses were just made for jumping on, obviously!!).

This morning at church, she made my friend's day by yelling out "GABBY, GABBY!!!" from the back of the church when Gabby was making the announcements at the end of service.

Yesterday when we were out for dinner, she cracked me up by sneezing a mouthful of rice all over the poor waitress who was entertaining her while we were eating (I couldn't stop laughing every time I looked at her and noticed the one grain of rice on her chin that she missed when wiping herself down - poor girl!!)

It took a while for us to conceive the first time around, I was so worried that we may never be able to have children. We had just started going for tests to see if everything was working the way it should, and at long last we got that big fat positive! Being a first timer, I was so scared of miscarriage and of everything else pregnancy related. I read all the "your pregnancy this week" books and websites that I could find - and was so relieved when our little girl was born.

Lana has been such a joy for us - "contented" is a word that everyone used to describe her. She ate well, slept mostly well, she's never really been sick, she's achieved all her milestones early.

I love how she's now developing into her own little person with her own quirky personality. Her favourite word at the moment is "Ding dong!!" (thanks Nanny for that one!), her favourite food is berries of any kind, and she loves toes. Don't ask me why, but they fascinate her. Also shoes. She puts our shoes on and wears them around the house now.

It melts my heart when she gets excited when she sees her mummy, or when she tells me "Besshhu" when I sneeze, or when she repeats "Wahjew" when I tell her I love her.

There's so much I could say about my little angel but I've just been spending some time thinking about her lately. The first week or two after I got the news about this coming bub, I was so focused on that - but the past week I've really been just enjoying my daughter and appreciating her.

I'm so glad that God has put her in our lives, and especially at a time like this - when we're feeling down, she'll do something goofy and make us smile. When I'm scared about this pregnancy, I hold my daughter and somehow it makes it feel better. I am so blessed because of my daughter.

17 week ultrasound photos

2010-03-04T14:37:00.002+08:00

Ok, so I'm finally putting up some ultrasound pics. I'm not going to put up all of them, just the ones that are either the cutest, or the ones that show the most information. A lot of the pictures are just of a random limb so that the measurements could be taken. I'm not putting up those pictures coz they're kind of boring. This ultrasound was taken 2 weeks ago when I was 17 weeks into the pregnancy. Everything measured normally except for all the bones in the limbs which measured consistently at 14 weeks. For more information, read this post.

This is the profile shot, just for cuteness factor. I don't think that much can be seen here about the baby's condition. You can notice (slightly) that the abdomen is larger than the chest/ribs area, but I don't think it's that obvious in this shot...

This is the hand of the baby. The real "cause for concern" is that the thumb is not positioned correctly. Remember in my previous post, I mentioned "hitch hiker's thumb"? This is what it looks like on the ultrasound. (we have multiple pictures of this, this shot captured it the clearest though).

3D shot of the baby. If you look closely, you can see the shape of the hand in this shot too. (if you click on the picture, it will enlarge and make it easier to see). The arms are disproportionally small, although probably if you're not a doctor, it's harder to see...

You can kind of see the other hand in this picture, although it's somewhat mushed against her face so it's harder to tell the shape of the hand. My understanding is though that the two hands are shaped similarly.

Another 3D shot. The arms do look very small here, even to me.

So, there's the pics from my 17 week ultrasound. My next ultrasound will be at 20 weeks (which is next week). Hopefully I can get a bunch of pics from that ultrasound too.

My thoughts on God and suffering

2010-03-04T13:46:00.001+08:00

As a Christian, one of the "hard questions" about believing in God is "Why do bad things happen to good people?" and "Why is there so much suffering in the world?". For some, this is the reason that they cannot believe in God. I don't pretend to know the answers to such questions, but I wanted to share my thoughts about God and my personal situation.

Naturally, when I first heard the bad news, my immediate reaction was "God, why me?" and "God, heal our baby completely" - but as I was praying about it and thinking about it, reading the bible, I began to think a bit differently.

First of all, to believe in God, it's necessary to believe that God is sovereign, that is, He is in control of everything that happens. He has the power and authority over everything that happens - from the rulers who govern our nations, to the weather, to the things that happen in our lives. I believe that He was in control when this baby was conceived, and that He was the one who gave this baby life.

I was doing a bible study about God's sovereignty a few weeks ago and it was looking at the life of Job. (Job is an excellent study for anyone with questions about God and suffering!!) In the story of Job's life, Satan came to God to ask God for permission to test Job by bringing suffering into Job's life and seeing whether Job would curse God. God granted him permission to touch Job, but with certain guidelines - he was not allowed to take Job's life. It's interesting to notice that 1) Satan had to ask for permission before doing anything, and 2) God allowed it.

Some Christians believe that as Christians, we have the promise of perfect health, wealth, whatever we ask for. Some Christians believe that if we do not obtain that, it is because of our lack of faith, or because of sin in our lives, or because of some other fault of our own. I believe that this false belief about God not only is 1,000,000% wrong but it's also damaging to people. First of all, it says that the outcomes to situations (our own and others) are directly related to us - whether we prayed enough, or were good enough, or whatever. This can lead to people feeling self-condemnation and even worse. Then when people who believe this see others who are in bad situations, it can lead to people being judgmental (oh, THEY mustn't have prayed enough or done the right thing). I remember a girl I know whose baby had an abnormality and didn't survive. People actually said to her that it was because she wasn't married to the baby's father!!! These beliefs can drive people away from God - by numerous different ways. By people who are meant to care being so judgmental, by our own feelings of condemnation, if something bad happens and God does not answer in the way we want, then we can take that as "proof" that God does not exist...

So back to Job, my husband read me an interesting scripture the other day from Job 2:10. Job was suffering and his wife came to him and said "Curse God and die", but Job replied "You talk like a godless woman. Should we accept only good things from the hand of God and never anything bad?"

The bible is full of situations where bad things happened to good people. We have company in our suffering.

David was a nomad for years, running for his life from a king who wanted to kill him. Most of the psalms, when you read them, are actually kind of depressing. They go something like this: People are chasing me and want to kill me. God, why did you allow this to happen to me? My life is so hard. BUT they don't stop there. David knew how to say "Nevertheless, you are still God and you are my protector. I will trust you and praise you regardless of the situation."

The apostle James was killed only maybe months (I'm guessing) after Jesus died. Stephen also was martyred.

Paul had a "thorn in the flesh" and prayed many times for God to remove it, however pretty much, God said "no".

Joseph was sold by his own brothers into slavery and once he got to Egypt as a slave, he was put in a house where he was wrongly accused of a crime he didn't commit and was thrown into jail. In the aftermath of this, he had the opportunity to work in Pharaoh's courts and even became 2nd in command over all of Egypt. When he was old and reunited with his brothers, he said to them (one of my favourite scriptures), "You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives."

In addition to these people's lives (and many more similar situations, those were just the ones off the top of my head), there are multiple scriptures that state "In this world, you will have troubles".

So in short, my views on God and suffering: God doesn't promise us a life with no suffering. Christians are not immune to all the problems of life. We have to face difficult situations just as much as anyone. Hopefully (but sadly not always) there are some problems that are lessened for Christians who are actively living for God (such as things directly related to sin - extramarital affairs, diseases caused by alcoholism, etc). But when it comes to death, everyone needs to face death. Everyone is susceptible to disease.

I do believe that God can heal - however I don't believe that God always promises to heal right here right now. Some healings may not be made complete until we're in heaven. I believe that miracles do still happen - but I also know that God is not a genie in a bottle who will perform a miracle just because we rubbed the vase.

So if God doesn't promise that things will always be perfect, where does that leave us? Well, what God does promise is that all things will work together for good. And I 100% believe this. No matter how awful a situation might seem, God can bring good from it. Like Joseph said, his brothers were planning something evil - but God took it and brought much good from that situation.

My responsibility in this situation is not to question God, but it is to trust God and to keep my attitude right. I don't want to let my suffering make me bitter or twisted. I trust that no matter what the outcome is, God has a plan and a purpose and He can bring good out of any situation. (Jeremiah 29:11 says "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.")

My prayer for my baby is that God's will will be done in her little life. I know that her life is in God's hands and I trust Him. I want my baby to live, more than anything. I want her to have a long, happy life. I even pray this for her. I pray that God will heal her - but in the end, I have to pray "... if it is your will". I can't tell God what to do, and I can't assume that I know what his plan in this situation is. I have no idea what the outcome will be. I know what I WANT the outcome to be, but I know that more than that, I want God's will to be done.

I was thinking about faith - and some would say that it takes a lot of faith to believe God for a miracle... but I believe it takes even more faith to believe that God has a plan regardless of the outcome... It takes more faith to trust God when he doesn't perform that miracle we've been praying for...