Friday, August 6, 2010

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 :)


  1. Maddy is absolutely adorable, beautiful and oh so precious!!! I love all the pics of her! So cute! We will continue to keep her in our prayers! Sounds like she is doing well! I know of 2 other moms that blog who's children have DD. Maybe they would be of some extra support for you! It's nice to have someone to chat to who's been there done that specifically. Maybe you already know these moms, but I'll give you their contacts just in case. Chelsea is mom to Kai and her blog is
    and Stacey is mom to Grant and their blog is
    Hope this helps some! I know that Grant had a brace (might still) for his neck for the same reason and that he also had surgery on his feet and wears foot braces now. I can't remember if Kai went through all of that too. Wishing you all the best!!! Hugs and hang in there!!!

  2. Nicole, Melissa is always on top of things. I scolled down to leave some blogging sites for you and she already posted them. I'm glad that Maddy is continuing to do well and she's still in my prayers.