Two days old

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!!

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

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

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!

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!

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 ;)

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 ;) ;)