03/16/10 Week 6

Eli is 6 weeks old today and today marks the 5th full week at Seattle Children's Hospital.

We made a little progress on a couple different fronts today:

First, Eli has had a couple good feeds on the bottle. We're starting to feel like there's some light at the end of the tunnel with regard to getting rid of the NG tube. We know we still have a way to go but we've started and that's what counts.

Second, Patricia has been pushing and pushing to get one of the BiPAP masks to see just how big Eli will need to be in order to transition to BiPAP. With the help of one of the wonderful occupational therapists she managed to get her hands on a small mask and it isn't that much bigger than the one they're using on Eli now. Instead of another 2 to 3 months in the NICU we might be looking at 4 weeks assuming Eli still needs the CPAP/BiPAP level of respiratory support when he's sleeping. I think we have concluded that he does need this level of support but we're going to schedule a meeting with pulmonary to discuss it further. At any rate, we certainly feel better with him on it and we feel that it cuts down on the frequency of his oxygen desaturations by a substantial margin.

Third, we've been experimenting with positioning so Eli has been getting some tummy time. When he's sleeping on his belly the force of gravity on the soft tissues in his neck helps keep the airway open preventing obstructive sleep apnea. Of course he can't be on the CPAP/BiPAP while on his belly because he squirms too much to keep the mask on but when he's hanging out sans headgear it seems to work for him.

Finally, we've been having some issues with Ian and Obie lately. They have been acting out more often and they have been a little "delicate" lately. I think the separation anxiety is starting to take its toll. Patricia and I decided that both of us needed to be home this evening with the boys. We're trying to figure out a solid plan that minimizes the amount of time Eli has to spend in the hospital alone while maximizing the amount of time we get to spend as a family. We had dinner together, as a family, in our own home, for the first time since Obie's birthday on February 20th. This was only the second time since Eli was born that both Patricia and I have been home together. I think Ian and Obie responded well so we're going to try to do this a few times a week from now on.

It's pretty amazing how perceptive kids can be. After dinner tonight Ian asked Patricia, "Who is going to stay home tonight, you or Daddy?" It's a little heart breaking that this arrangement has become normal to our 4 year old but we're working on it.