Wednesday, August 11, 2010

One Week Old :)

Today is Maddy's one week birthday :) Bernard also went back to work today so I went to visit Maddy by myself. I'm so tired of the whole NICU thing. Some parents have to keep their babies in NICU for months though - so I should be counting my blessings that Maddy is overall pretty healthy and should only be in there for weeks, not months... 

In the last week, I've seen babies come into NICU and babies leave. When we first were there a week ago, there were mainly bigger babies but now there are a bunch of new little premies... I have no idea exactly how premature they are, but Maddy would easily be four to five times the size of the smallest one (although they're probably the same length!!)... I know that really Maddy's very healthy compared to some of those little ones...

Maddy is still doing pretty well - getting stronger and healthier. She's now up to 60mL per feed, 8 times a day!! And she is completely off the IV as well. Her CPAP has been turned down once again - although the setting it is on now, you can still hear her wheezing - but her oxygen stats are good even with the wheezing noise. 

I've been a bit worried the past few days that Maddy may need a tracheotomy - that is one of the ways that they treat the tracheomalacia "floppy airways" issues that she is having. Although her endoscopy isn't for another week and if they keep turning down her CPAP, I think she should be fine without the need for a trach. 

The orthopedic doctors still haven't really given an assessment of the spine. A few orthopedic doctors have come to see her, but none of them really have the expertise to comment on Maddy's cervical spine. There are some who are experts in pediatric orthopedics, and others who are experts in spine orthopedics, but as our pediatrician said, we need the right doctor who has the right expertise in pediatric spine orthopedics to be able to give his assessment of Maddy's spine. So far, they haven't found that doctor, or he hasn't come to see Maddy yet. It's frustrating for me because so much is hanging on that particular assessment, and it feels like we are no closer to getting it than we were a week ago.

Maddy's still being treated for the jaundice, but she's not even looking very yellow now - I think most likely she won't need the phototherapy for much longer. 

I have to keep reminding myself that this NICU thing is not forever, it is just for a couple of weeks. And I know that it is the best place for Maddy for now. Yesterday when we went to see Maddy, she was particularly wiggly and got out of her CPAP too many times to count. She was also pretty cranky and so she'd get herself worked up and cry really hard - and every time she did that, you could see her oxygen stats dropping. She's fine off the CPAP if she's not crying and just breathing calmly (although it is still obvious that her breathing is not "normal"), but as soon as she gets cranky, her oxygen levels go down. It helped to remind me that she does NEED to be there for now. So I know that I need to be patient about it all, even though it's very hard!!


  1. I found your blog through someone else on a special needs board. Although our son has a heart defect, his main problem was airway issues caused by the heart defect. They thought he had tracheal malacia, but it turns out it was bronchial malacia. Either way, what you describe sounds just like what we were dealing with. He was on a ventilator, c-pap, high flow, and then eventually came home on oxygen. He is now 17 months old and doing quite well. You can contact me at if you want to connect. I am a NICU veteran...99 days! Your little one is adorable!!


  2. Happy 1 week old, Maddy!

  3. Glad she's doing so well! Sounds like she won't be needing that CPAP much longer! If they figure out what causes the wheezing, let me know, Grant outgrew it before we ever found out. We have a pediatric neurosurgeon that evaluates Grant's neck, do they have anything like that there? It also might be good to get an LP specialist to take a look at her neck because they've actually seen it before and would be able to tell you how severe it is compared to others like her. Hope she gets to come home soon!