Transitions

James seems to be handling the transition from special formula to regular formula fine. (Yay!) He continues to do well with his bottles, usually in the 30-40 ml range (so, a little less than half of his feeding volume). And his bilirubin is continuing to go down (the most recent one was 6, which is still elevated but heading in the right direction).

Today we learned what to do if his g-tube comes out. Hopefully we won't have to put that knowledge into practice!

We'll be rooming in with him tomorrow. That means that we'll have him and his crib in one of the sleep rooms down the hall from the Pod, and we'll be in charge of doing all his care, including setting up the feedings with the pump, giving his medications, and taking care of his ostomy. It's like a practice run so that we don't go from having all the support of the nurses to going cold turkey at home. With Matthew, we did an overnight visit, but since James is on continuous feeds and should be mostly sleeping through the night, we're going to do an extended daytime visit and head home after midnight. That should allow us to get practice with everything, but it means we (hopefully) won't be a complete wreck the next day -- as we discovered with Matthew, it's hard to actually get much sleep in the sleep rooms.

We've decided to change our pediatrician to one closer to home that has weekend urgent care hours. I called them today to see if they could handle James's medical conditions. (The advice nurse who returned my call was really great, which seems to be a good sign.) Even though it's just a fact that he has special needs, at least for now, it was emotionally difficult to say that out loud -- that label makes me sad. Along the same lines, he's been referred for evaluation for developmental services. I'm guessing he might benefit from a continuation of the kind of occupational therapy he's been getting in the hospital, to help his motor skills catch up from being there so long. (From what we hear, he's been making great progress with his exercises with the hospital occupational therapist, so that's very encouraging.) But even so, I wish he didn't need it.

In the picture, James is in the baseball outfit, and Mattie is in the truck outfit. Not the most flattering picture of either of them, but it's fun to see them together!

UPDATED to clarify: When I say special needs, I mean special physical/medical needs -- he has the feeding tube and the ostomy, and his doctor(s) will need to monitor his liver function to make sure it's returning to normal. However, there's no indication that any of this has affected his mental functioning; as far as we can tell, his social development seems to be totally on track.