3/26 Update: Growth

Hope is doing great. She's basically off her meds. No fentanyl. No milrinone. A little zantac for reflux once in a while. She's getting supplement oxygen at 1/8L per hour. Breast milk at 22ml/hour still through her NG (nasogastric) tube. Apparently some of the alveoli in her lungs are clogging up and/or collapsing. To remedy this, they are giving her "physical therapy". They have this funny looking bell shaped implement that they use to tap on her back. Next, they will start doing it with a pneumatic instrument. We've seen them do this on another kid, and it seems and sounds ridiculously rough. But this other boy seems to enjoy it.

Last night, we went home and were able to eat dinner with Shane and Liv. We were able to go out for a short walk (thanks Mom for taking care of dinner), eat dinner, and do bedtime routines. They seemed so much older and more grown up. I'm sure some of it is relative, but I can't help but think that this process has helped them strengthen and grow. So, while it was awesome to kind of reconnect with our older children, we had this gnawing sense of guilt for having been away from Hope for so long. It was the first time that we had missed an entire 12-hour nursing shift. It has become a delicate balancing act.