Moving day

Today we got the go ahead from the Dr. Chris that Lucas is ready to be moved down to the floor of Children's Hospital. We've been ready for this day for a few days now, but I still felt a little nervous. Lucas has been getting such great care from really great nurses, residents, attending docs, and fellows here at the NICU. All the nurses know him, his quirks, his tendency to wretch if you give him too much food too fast, how he likes to be comforted, which side he prefers to sleep on, etc. And the doctors here know his case history, his problems, and his success. I know all of this info can be passed from NICU to those on the floor, but we still felt nervous.

We met everyone in the NICU for the last time at Rounds this morning. His bilirubin count is lower still, but his liver enzymes have risen. The GI consult is keeping an eye on this situation, and needs more data (plot his trend) at this point before he delves into this situation. One thought that he is willing to explore is to test for sign of a rare genetic disorder called alpha 1 antitrypsin. We'll see if anything comes for this idea. The fact that his liver is still inflamed, and the enzymes are still high after all this time off ECMO, is confounding. And all other tests for liver function are all good, meaning it is functioning fine. His bilirubin is lower because he's on a drug called ursodiol to help flush his gall bladder and liver of the sludge that was backed up when his heart failed. So this is his last foe he has to conquer, which the doctors will keep an eye on in the next few days. The hope is that the high enzyme levels will trend down just as his bilirubin counts have been doing.

The feeding therapy is going steady and slowly. One good thing that happened today is that Lucas was able to do a shallow latch on one of my nipple and began sucking and swallowing for about 3-4 minutes. That is a pretty big step, I think. He did give up after he started to gag and cough a little, but it was a start. He also prefers to eat at a slower rate than what they are prescribing. I am starting to question the amount of calories they are pushing him to take over a relatively fast rate. They are hoping he'll take about 2 oz of high calorie food over 1 hour and eventually to 30 mins, every 3 hours. I'm not sure Tessa ate that well when she was his age! I'll speak to the docs about this tomorrow.

At 3:30 pm we packed up all the stuff from his NICU room: charts, tubes, all my breast milk in the freezer and fridge (74 vials). And we rolled him down to floor 2. We checked out his room and met his roommate Mateo, settled down, talked to the nurses and that was that. We felt like we moved to another hospital. We met the resident doctors and talked a little about him. The Rounds they do is similar to the NICU ones, except the docs come to us, instead of the other way. We'll talk to the docs tomorrow and hopefully get an idea of what needs to happen before Lucas can be ready to come home. This move to the floor gets us one step closer to coming home, something my husband and I are so ready for.

I'll end here with a couple of images from the move:

Lucas's last moment in the NICU, surrounded by his animal friends (there's a new friend named Cholestasis--the green alligator).



Daddy helping to push Lucas down to the floor. Lucas slept through it all: