New Address reminder :)

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!!

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"

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

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

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

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

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

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

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.