Another Monday at the NICU

We are getting better over here, slow and steady (wins the race?)...

The history, so I can try to update and have it make sense: Basically, A had a volvulus in his small intestine, specifically his ileum, which is the lower part of the small intestine. That volvulus (small spontaneous twist, likely resulting from when the intestines migrated into his body in utero) died and backed up the rest of his small intestine. That volvulus had to be removed, but b/c of the back up his intestines are incredibly dilated. They have to repair his condition in two surgeries. The first one lets the waste go through his body and out (the side.) Then, we wait 6-8 weeks for the dilation to go down. At that point, they will then reconnect his intestines and he SHOULD be able to go on like a regular baby because he only lost 10cm of his intestine, which leaves 90-95%. Our trusted friend, Dr. Go.ogle assures us that when folks lose more than 2/3 of their guts, they start to have major problems... and we're no where near that, at least in the long term. In the short term, however, he is using only the highest part of his intestines which is a big piece of why we may be having the problems we are at the moment (during this interim between surgeries.)

OK, so I wanted to explain that b/c I doubt we did a good job of explaining earlier.

So, now, we are here because A doesn't seem to be absorbing. They've ruled out infection, which is a good thing... except that it is the most common reason for "dumping". We are working on getting him up to full feeds while supplementing with IV nutrition. As of today, we are at 75% of oral feeds (45cc/3 hours). He is no longer dumping, but his output is still really high. It's amazing how obsessed we are with input and output now...

We are cautiously optimistic and trying to remain in the here and now because there is nothing to plan for as of yet. In terms of us making do - my mom and sister B left this afternoon (arrived Friday), and they left us a few days worth of meals. We have some good friends in town who are going to help us with Gladys for a few days until E's dad returns at the end of this week. We, unfortunately, have no hope of getting out of here particularly soon.

So, that's the scoop for now. At this moment, I'm going to change my son's diaper and get ready to feed him. We are going to attempt actual nursing today - he LATCHED this afternoon in quite a surprise move, so we're going to attempt a significant feed with bottle as backup. No pressure, as today's latch was a significant milestone, but it feels good. We're trying now to focus on some of his developmental milestones and de-medicalize our understanding of life. He doesn't know that he's hooked to tubes, and we don't want to miss this start of his life because of it.

At least, that's the theory for today.