Yes! We are currently awaiting our big move back to the regular floor, out of ICU! We have been in ICU for two full weeks. I know that many families were here before us and will stay much longer, but we are ready to bid this place adieu!
Scarlett continues to amaze everyone. She is eating by bottle every few hours in addition to NJ feeds. She is down to just her PICC line, which can be used for all her medicines, as well as to draw blood for labs. The big news yesterday was that both cerebral spinal fluid drains were removed. These were tubes that were stitched directly into her skull that drained excess fluid. She is circulating and absorbing fluid well on her own for now, so they decided to remove the drains so that we can hold her and feed her. She may still need a shunt; they will decide later this week. She's not a big fan of being held much right now; I think she is uncomfortable being moved. However, we'll ease her back into it!
Now, she is stable and ready to be moved up to the floor, where the care is less urgent and there is much less drama. We will be able to eat in the room, make phone calls and have more than one visitor at a time. Whew! It's been so confining in ICU, for Scarlett and for us, even though we started cheating with snacks and texting a while ago...
I realized that we have a lot to adjust to once we are more responsible for her care again. We haven't had to wake up in the night for much in the last two weeks. We haven't had to feed her on demand, or even do obligatory breathing checks like we used to. Taking home a "sick" baby may be much more difficult that living in the hospital. Nevertheless, I want to take her home, let her snooze in her swing and get her toes licked by our dog.