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.

The Ups and Downs of this week

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

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

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

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

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!!