Austin goes to CHOC

Yesterday we got a call from the attending doctor at Hoag NICU, expressing that she would like to have Austin moved over to CHOC for his bowel issue. It was a combination of factors, some good and some bad, that drove this recommendation. On the good end of all this, his weight was up to the lower end of the threshold for performing the rectal suction biopsy needed to make the Hirschsprung's disease diagnosis. He also was responding very well to the antibiotic regimen that he is to continue for another week or so, and they're very hopeful that he should have his infection completely resolved by then. On the bad side, he failed to pass the last little bit of Barium from the original scan, which could mean that his bowel is not moving anything past this segment of his rectum. What is apparent to me is that since he's been off of his feedings and on total NPO, there's also nothing pushing his bowels along either. The doctors have also stopped the irrigation (enemas) because of the infection, so they're quite sure that since he hasn't passed the Barium that something is not working correctly in his rectum.

So the doctors discussed before that they wouldn't want to move him under emergency to CHOC, so once the infection was stemmed they would feel good about getting him over there once a diagnosis could be made. It surprised us that it actually came about so soon, but I guess you have to see this as an opportunity to move forward and get his issue fixed.

Having the babies separated is turning out to be emotionally harder than we could have foreseen. It's not just the fact of having them at two separate hospitals - luckily they are almost the same distance from our house. The extra time it will take to get through our visits with travel time and gas are an inconvenience, but I don't see a way around any of that. The hardest part is the disruption of Austin and Malia's development together; it just doesn't feel right that they should be apart. These feelings are amplified in Cheryl, who carried them together from the start and loves them equally, but still hasn't gotten used to being away from them, now in two different places.

Beyond that, CHOC, albeit a great hospital, is a different environment than we have grown accustomed to in the last 5 weeks. Teddy bear faces adorn the entrance, but it offers little comfort to concerned parents like us. The NICU is busier (it's a level III and has 54-beds, compared to 21 beds at Hoag), so Austin's pod is crowded and noisy. He shares a pod with some other babies who appear to be long-term admits. We didn't see that kind of environment at Hoag; I think everyone there just planned on getting better and going home fairly soon.

Austin settles in for his first night at CHOC

Austin seemed oblivious to all of the chaos last night, and really was his usual self when we saw him.  His isolet was open (no lid), which is actually pretty nice to have such easy access to him compared with his unit at Hoag.  We both held him for awhile last night, but I think we both felt guilt for not seeing Malia.  She had a good night nonetheless, and Cheryl visited them both this morning.

Ready for bed in his papoose, poor guy had the IV line running in his forehead, ouch!

During Cheryl's visit this morning, the nurses trialed him off of his nasal cannula for 2 hours, and he did great! At least they're moving forward in the areas they can, perhaps he'll be free of his lines altogether soon.

Funny face, cannula free.