Routine

It's hard to believe that it's been two weeks already since Maddy came home! That time has flown by so quickly! When she first came home, it took a little while to adjust but now we're back into the swing of things :) When Maddy first came home, her oral feedings were not doing so well but now she's feeding like a champion! She drinks her milk so quickly and hungrily and often will cry when she is done. She's drinking more than the doctors recommended that I should feed her - but I think it's a good amount for her. I'm so glad that it's not a struggle any more!

It took me at least a week to figure out Maddy's routine but I think I've got it down pat now. She actually has a very reliable and predictable routine (once I figured it out anyway!). She'll eat, and then play for about an hour or so, then sleep for about an hour or so, and then wake up and want a bit more to eat again. It's a three hour cycle that starts at about 7-8am and goes until her last feed at 10-11pm, then she will sleep like an angel until 7-8am. 

Now that we are in our routine and Maddy is feeding well, things are going VERY smoothly! I always expected that the hard work would start when Maddy came home from hospital, but the opposite is true. It's been so easy! I actually am in awe of how easy things are at the moment (although the first week was VERY hard work!)

It's true that we haven't yet started our doctors appointments - we have six different specialties that we will be seeing in the next two months (occupational therapy, physiotherapy, ENT, cleft palate surgery team, neonatologist, and orthopedic doctor). I know that the appointments will complicate things a bit, but it can't be harder than going to the hospital for a few hours every single day. We have our first appointment (occupational therapy) tomorrow.

I've been loving having Maddy at home and have been showering her with hugs and kisses, blowing raspberries on her delicious baby cheeks and making her giggle non-stop. I think she might currently be one of the most-kissed babies in the world!!

Here's a few pictures of our lives the past week or so :) (I know I probably should break it up so that I have at least one picture with every post, but I can't help sharing them all!!)

Resting on Mummy and Daddy (and 50% of the time Lana)'s bed

Grimacing about "tummy time". Her center of gravity is much higher than an "average height baby" and her arms are so short that it's hard for Maddy to keep her head up. Often her little legs will pop up into the air instead and her face will be smooshed against the floor ;)

There, that way is MUCH better!!

Maddy loves this bunny blanket. She's exploring a lot of things with her hands lately and likes to hold/stroke things with interesting textures like her blankets and towels. This one is a favourite!

Maddy's first introduction to Playstation. She seemed fascinated ;)

There were three in the bed and the little one said...

Travelling

As expats living away from "home" in a foreign country (albeit the one where my husband was born), we generally do a lot of travel. In the first year that we were living in Hong Kong, I went back to Australia twice. In Lana's first fourteen months, she went to Australia three times, and Singapore, Malaysia and Thailand all once. That's more travel than a lot of people do in a lifetime!

The last time that we were overseas was last Christmas. We went to Malaysia and Singapore to visit Bernard's family over there. We had just found out that we were pregnant with Maddy at the time but we had no idea what the year would have in store for us!

We had been planning to go back to the US for a long time and were nearly at the stage of booking tickets for Easter this year when we found out that we had complications in the pregnancy. We decided to cancel the holiday and possibly head back to Australia later in the pregnancy - but the doctors recommended that I shouldn't travel at the time. 

Instead we were planning on heading back in October after Maddy was born, for Lana's second birthday. NICU changed that plan for us, but we didn't mind postponing until Christmas. We knew that Maddy should be out by then - and in some ways that was a better plan since my brother would also be in Australia from Denmark - plus it's SUMMER (and I love the Australian Summer!).

Last week I asked the doctor, just to be sure, whether Maddy was fit to go in a plane - and the short answer was "no". With her airway issues, the doctors cannot guarantee that she would be strong enough for the flight - although the cabin is pressurised, the pressure is still lower than atmospheric pressure. And the oxygen content is lower as well - closer to 17% than the usual 21%. Most people can fly and these conditions don't have any impact on them, but people who have respiratory problems can really suffer in those conditions. And the last thing that you want at 30,000 feet is a medical emergency. 

So we're currently "stuck" in Hong Kong. Bernard has nine weeks of annual leave owing since we were saving them up for the US trip that was meant to be at Easter, then for this trip back to Australia. We haven't had a break at all for a year, and we really need one! There's not many options for "staycations" within Hong Kong around here - we could head to Macau, or we could head into China - but I wouldn't want a medical emergency in China either!! At least Macau isn't as far away.

Hopefully Maddy will progress to the point that she is able to fly in the not too distant future - the doctors said it will be at least a few more months though (so no Australian summer for us :( ). Maybe we can make it back to Australia for my 30th in May instead...

Discharged :)

On Friday, we went up to the hospital for an ultrasound on Maddy's hips. Friday morning was the end of our home leave, and so I needed to leave Maddy at the hospital for the whole day until we had a meeting in the afternoon with a few of the specialists.

The meeting with the specialists just turned out to be some kind of disclaimer from the doctors. "Usually we would insist on doing a bronchoscopy when a child has symptoms of airway malacia or narrowing of the airways like Maddy does, but we are not doing that because of these reasons, but you need to be aware that really her airway hasn't been properly assessed". I'm aware of that, but I'm also aware that the CT scan did suggest that she has the laryngomalacia, and this is consistent with diastrophic dysplasia. Even if we were to do the bronchoscopy, in the words of Prof Sillence, there's a 99% chance that we'll just confirm that she has laryngomalacia due to the DD - something that we can assume from what we already know about her symptoms, the CT results and DD in general. There is nothing that we can do to treat it, it is something that she will grow out of in time. 

After waiting around at the hospital until 5:45pm for that meeting, we were free to officially begin to be discharged. That involved a lot of appointment making by the nurses (I think we already have six follow up appointments with various specialties), bill paying, vitamin ordering (although we forgot and left them up at the hospital) and just waiting around for various bits and pieces. We ended up getting home at 8pm after all that! But now that we're home, we're home for good :) No more trips up to the hospital for a while! (unless we decide that we want those vitamins after all ;) )

We received good news from the ultrasound - the Pavlik harness that Maddy's been wearing for the past two months has been doing it's job and Maddy's hips are no longer dislocated. This means that Maddy no longer needs to wear the harness, and she's been LOVING her new-found freedom. In the harness, she could only slightly wiggle her legs, but not really kick them around at all. Now she is kicking them non-stop.

I've been playing around a bit with Maddy's feeds since I didn't really feel as though the hospital routine was working for her. Last week, there were times that we really had to force feed her when she was crying and thrashing her head about, obviously not wanting any more and it was VERY painful for us all. The hospital wanted me to feed her six 100mL feeds a day, and sometimes it was a struggle to even get her to take 50mL. But we knew that if we couldn't get an average of about 600mL, she may need the NG tube put back in, and none of us want that. After a bit of experimenting, we are now feeding her eight feeds a day, averaging about 75mL. If she is hungry and eating well, I'll give her the full 120mL but if she is cranky and not wanting any more after 50mL, I'll stop the feed right there rather than forcing her to drink more. With this new routine, she's actually drinking more than before, and it's a lot easier too! (although there is more bottle washing involved). I know that as she gets better at feeding, she will probably drink greater quantities less frequently, but for now, this is working for us, and we're all happier as a result. 

And would you believe it, since she's been home I've been so busy that I've hardly taken any photos? I need to get around to that ;) Hopefully next time I'll have a bunch of new pictures for you all :)

Adjusting

It's been two days since Maddy has been home and we're all still getting used to it a bit. Lana has been really good with Maddy, but she's been a little bit extra needy with Bernard and I. The night that Maddy got home was pretty awful - Lana woke up around 11pm and didn't go back to sleep (in our bed) until 2am. Much of that time, she was screaming and keeping us all awake - but Maddy slept right through it! The next night, she didn't want to go to her bed at all, she wanted to sleep in our room. We made her go to her own bed, but when I was feeding Maddy at 5am she woke up and made her way into our bed.

Maddy has been mostly pretty good but she's been a bit unsettled and has been crying for no reason (either that or I just can't figure out what the reason is, no matter how much I try different things!!). I'm sure that coming home has been a massive upheaval for her, she has lived all her life in one room, mostly in one bed, and now she's in a strange place, going outside, feeling the wind and the sun, smelling the fresh (or not so fresh) air... all wonderful things, but I'm sure it could be pretty frightening for such a little one.

Bernard has been working from home these last couple of days. It's nice having him around to give me a hand if things with the two girls start spiraling down fast! But he is still so busy with work - he wasn't able to get "time off" because there is too much going on, so he is still working full days but just at home instead of at the office.

Looking after Maddy is a full time job! The hardest thing in looking after her is feeding her- it makes me grateful for just how easy Lana was! With Lana, I always just breastfed on demand, and with her I could rely on her to know when she was hungry and when she was full. With Maddy, if I fed her on demand, she'd need to go back to the hospital with an NG tube because simply, she wouldn't be getting enough to even stay hydrated. 

Instead, I need to feed her mostly by squirting milk into her mouth and waiting for her to swallow it. The first part of her feeds, she will take more actively, so it's not so much work - but after she's decided she doesn't want to work for her food any more, that's when the fun and games start! It's often a long, slow process of just trying to make sure she can at least MOSTLY finish her feed before she's too traumatised to have any more. And it's a fine line before trying to get the food into her quickly, or trying to make sure I don't overdo it and make her cranky faster. Each feed takes us about an hour until either she has finished the feed, or more regularly, she has decided that enough really is enough!

Putting it into perspective though, I think it's just been a week today that her NG tube was removed permanently, so she's only had one week to practice and learn how to fully take oral feeds. I'm sure that it will get better with time, and truth be told, it already has been improving (slowly though!!)

We've been mostly staying at home but I did take her to our family doctor to get her four month immunisations, and I did need to run out to get a couple of things at Times Square (that webpage has the coolest intro!! Check it out!!) so I took Maddy along for the experience too. It was great to go out with her, not so great to feed her while we were out instead of in the comfort of our own home! I'm sure I probably "broke probation" since we're still on home leave rather than formally discharged, but I don't think that any of the nurses saw me! ;) 

Despite how hectic it has been, it's soooo good to have Maddy at home with us all and to not have to go up to the hospital! Our "home leave" was extended until Friday so we will go back up there then for the day and if everything goes smoothly, Maddy will be formally discharged then. She will also have a follow up ultrasound on her hips to see how the harness is working, I have an appointment with someone in order to get a disability allowance for Maddy, and we have another appointment with all the multidisciplinary doctors to discuss how we need to look after her at home and what things we will need to follow up when.

I'm looking forward to when we're all a bit more settled into our new routine and can all relax a bit more! I know it won't take long :)

Home Sweet Home :)

Right now, I'm sitting here after a long, wonderful day listening to my youngest daughter sleeping away next to me. I'm looking forward to having her disturb my sleep (hopefully not TOO much) tonight. And I'm thankful that she is home and that we can begin our lives together as a family of four :) 

Lana has been so great with her this afternoon since we got home. She has been talking to her non stop. "Baby Maddy, would you like to play with the bunny rabbit?" "I like your elephant and giraffe, Baby Maddy" "Baby Maddy, go and sit with Daddy now. I want to sit with Mummy". Lana was so gentle and loving towards her. I hope it continues that way!

It's been pretty intense so far having her home. Maddy is completely orally fed now, but it takes a LONG time and a LOT of effort. It makes me appreciate how easy it is when breastfeeding works like it should!! Instead, I need to pump first, then sterilise, then make up bottles (she is now doing best with the Haberman feeder), then it takes an hour for her to take about 100mL, seven times a day. One hour to feed, then two hours break before we need to feed her again. She gets so tired from sucking and swallowing, she's used to being fed the easy way! But I know she's getting better every day and it won't be THIS hard for that long.

Technically Maddy is only on "home leave" at the moment, we need to take her back to the hospital on Wednesday morning but if all goes well until then, she will be formally discharged on Wednesday. 

I'm sure it will take us a few days at least to begin to get into some kind of routine with her. Tonight was a bit of a disaster really (well we DID get home at "horror hour" and I needed to wash and sterilise bottles and the pump parts, then I had to pump and bottle feed Maddy, and feed Lana and ourselves all within two hours. We had the two girls screaming in harmony!) but we can play around a bit with Maddy's feeding times to find something that works better with Lana's routine as well. 

So now, I'm looking forward to NOT going to the hospital tomorrow!!! Hurray!!!

Welcome home, Maddy :) :)

Sillence in the Hospital

So I couldn't resist the pun ;) (although technically, his name is pronounced "si-LENCE" with the emphasis on the second syllable)

Yesterday, Prof Sillence made his way up to the hospital to see Maddy. It was really good to have someone look at her and look at the x-rays and to give his opinion on her case. And he's had a lot more experience in this condition so the doctors were really wanting to hear what he had to say as well. 

It was all pretty good news. Prof Sillence said that he sees no evidence of any neck instability on her x-rays. That has always been something which was mentioned and not ever really confirmed or denied. I think it was something that the original geneticist (who trained with Prof Sillence) mentioned. In addition, there is no evidence of a cervical kyphosis at all - and this is often the major complication with Diastrophic Dysplasia. A kyphosis is where the neck bends at the wrong angle putting pressure onto the spinal cord and it often needs to be corrected with spinal fusion which is a pretty intense operation to have! Prof Sillence said that with DD, if there is no evidence of kyphosis at birth, it's very unlikely that one will develop later -  so I'm very glad that we don't need to worry so much about that!!

In addition, Prof Sillence suggested against the MRI and bronchoscopy. He said that the neck manipulation that they were planning could damage her neck and they wouldn't gain any information that they don't already have from the CT scan and from what they know about Diastrophic Dysplasia in general. So that is now not going to occur. They will monitor her closely though and if it happens that she does need them later, we can reconsider. But for now, absolutely nothing needs to be done!!

So in light of all that, the hospital is now preparing Maddy to come home! The process still will take a few days as we need to make appointments to talk with various doctors about her airway issues and her orthopedic issues and how to manage everything at home - plus it's coming up to the weekend so all the 9-5 doctors will be off! But she should be home by around Tuesday, give or take a day or two!! 

(forgive all my exclamation marks in this post, I'm just REALLY EXCITED THAT MY BABY IS FINALLY COMING HOME!!!!!!!!!!)

Kody Tobler

I recently got back in touch with my childhood next door neighbour through Facebook. She was a grade or two below me at school and we used to play at each others houses pretty frequently, back when our parents would send us to each others places for a cup of sugar. I remember Mum telling me a couple of years ago that her son, Kody, was born with some health complications but at the time, I didn't really think much more about it and I never asked after them. 

 

I've been reading about Kody on his blog and his Facebook support page over the past couple of days (and there are a few newspaper articles about him if you google him too).  Kody is going on three years old and he has lived his entire life in the hospital. He was born with part of his bowel outside of his body and due to the damage, it needed to be removed leaving him with short bowel syndrome.

One of the newpaper articles written about Kody brought tears to my eyes. It started:

In Kody Tobler’s Warilla bedroom the toys are gathering dust and the crib has never been slept in. The quiet, empty room is not an easy sight for parents Kristy and Justin to bear, but they can’t complain. 

Theirs is a miracle baby.

I know now what it is like to have an empty bed in the house - Maddy's bed has become a storage place for guest pillows and blankets, and I recently went through her wardrobe, taking out unworn newborn sized clothes that I bought for her that she will never wear since she is now too big. And sometimes it seems like these four months have been so hard. But compared to Kody's family, we are SO blessed that it's only been four months and Maddy will be home soon.

Kody still faces tremendous health issues on a daily basis and needs a bowel and liver transplant - however this operation is not performed in New South Wales, so what he really needs is a miracle. His internal organs are already deteriorating.

Kody's family would love to bring him home, however the financial cost of having him at home would be enormous. The family have fundraiser sausage sizzles once a month near Lake Illawarra foreshore in my hometown of Wollongong, Australia so that they can afford to bring him home. If you are near there, please look up Kody's Facebook support page and see if you can go along to one of them. 

If there is any way that you can help to support this family, either financially or through your prayers, you can follow them on Facebook. This boy should be with his family.