Milestones, Day 61

The big news is that Barnaby is big. He has officially doubled his birth weight and is creeping up on 6 pounds. He is two months old now and just about two weeks away from his full term due date.

The road from here is all about milestones. There is a list of things that he has to accomplish to go home and there is no rushing him through that list, he will complete things on his own time. People always ask us when we will be able to take him home and I think it’s safe to say that we really don’t know.

In the past week and a half he has:

• Stopped “drifting” (drops in oxygen saturation) all together and been taken off oxygen
• Tried a little bit of feeding by mouth
• Gone to continuous feeds to try to curb reflux that seem to be causing “spells” (heart rate dips)
• Been taken off of caffeine to help with reflux
• Had a breakdown of skin on his hemangioma that dermatology was called over from children’s hospital to examine
• Switched from an NG to an NJ tube (new feeding tube that goes deeper and bypasses his stomach) to try to eliminate reflux
• Started drifting again after the tube went in, got put back on low flow oxygen

Generally there are a lot of stops and starts to the spelling and the drifting and everything feels like two steps forward and one step back all the time. He can’t go home until he is eating on his own and has not had a heart rate drop for a full five days. If he goes four and half days and then has a spell the count starts over.

For a long time we had been thinking that going home around full term was a realistic goal but now it doesn’t feel like we are just two weeks away from completing the necessary milestones for that to happen.