Monday, August 9, 2010

Five Days Old

I've been trying to update my blog every day because I've got so many people asking after Maddy - and it's easier to update here than to explain it over and over again. 

Maddy's still doing pretty well, pretty stable. I noticed today that they've decreased the pressure on the CPAP machine again, so that's one step in the right direction :) I'm a bit frustrated though because at the moment, the focus is on keeping her stable and letting all the specialists from every department come and examine her in their own time, rather than on getting her ready to come home. But then again, I also know that Diastrophic Dysplasia is extremely rare and all of the doctors (apart from the geneticist) have never seen a case before, so I understand them needing to spend more time examining Maddy. 

Maddy's eating pretty well at the moment too. The other day, they started feeding her 10mL each feed, 8 times a day, then they stopped for a day or so because of the concern over the neck issues but they started again - yesterday she was on 15mL each feed, and today she's on 25 or 30mL a feed :) I'm expressing and bringing milk up for her so I'm glad to be doing my bit to help her get stronger :) It's one of the small things I can actually do for her at the moment... I don't know if I mentioned before, but Maddy was born with a cleft palate - something that we knew could possibly be an issue before she was born. So breastfeeding will likely be difficult, if not impossible, even after she is out of the hospital. But we'll cross that bridge once we get to it. For now I'm preparing myself to pump long term and if it turns out I don't have to, then that's an added bonus.

Today we had an appointment with the anesthetist and the ENT. Maddy has what is called Stridor which is a high pitched whistling sound when she breathes. Normally, the ENT would do an endoscopy, where she looks at the airways with a little camera in order to find the cause. However with Maddy's neck instability, it could be dangerous to do this. They have tentatively booked her in for the procedure next week on Wednesday but are waiting for the opinions of the orthopedic doctors about her neck instability first. The appointment was in order to explain the endoscopy to us and explain the risks (which include "sudden death" - not something you want to hear when talking about your 5 day old daughter). I figure though that if Maddy was fine with delivery, hopefully that means the neck is stable enough for this procedure because it will help us to know how to manage Maddy's breathing issues long term.
Maddy is also slightly jaundiced and is now under the phototherapy light. I guess it is to be expected when they didn't feed her for the first three days or so! In comparison to her other issues though, the jaundice is a mild thing which is easily corrected, and she's in the hospital anyway so it doesn't really make that much difference whether she's there under the light or not. And now that she's under the phototherapy and eating better, I'm sure it will pass quickly :)
My mum left Hong Kong today after being here for a bit over two weeks, and Bernard will go back to work on Wednesday, so it will be a bit crazy around here I think. I'm so glad that we hired a domestic helper though, it makes it so much easier for me to get up to the hospital. Without help, it would be near impossible since I can't take Lana at all. I need to go to the hospital every day to take my milk up, and we don't live particularly close to the hospital unfortunately!!  
Please keep us all in your prayers, we really appreciate all the notes and emails we've been getting as well - even if we haven't been able to reply to everyone individually.


  1. nik you and bernade are amazing...through all this you are such an encouragement and a blessing to everyone else...i remember a couple of times you wrote notes to me (and others) to encourage...its great to see that even through this tough time you are encouraged by your own words...(and Gods) im not sure what else to say coz im not that good at saying what i mean.
    anyhow love ya...and again you are such beautiful people....:)

  2. Still praying for you guys daily. I was born with a cleft palate as well, hers looks as though it doesn't extend all the way to her nose and lip, mine did not either. I had a couple of surgeries to correct it and I have no lasting issues as a result.

  3. Sounds like she's doing well! Grant had the wheezing issue until he was about 6 months old. Everyone always thought he was sick, I just had to explain that that's just how he sounds when he breathes. He seemed to outgrow the problem. The Pigeon nipple on a soft bottle worked great for us with Grant's cleft palate. I'll send you some info on anesthesia. Thanks for keeping us all posted, we'll keep you in our prayers!

  4. Thanks for all the updates! We're still praying for little Maddy - and you and Bernard!