We last left off with D recovering from the reconnection surgery. He had lost a lot of intestines, and the surgeons told us he had 65cm left (the average for babies is 300cm). This put him at risk for “short gut syndrome” but the NICU doctors told me that the number didn’t matter as much as the function, so they moved forward assuming he would be fine. After giving him a few days to recover from the surgery, they slowly starting ramping his food (which was breastmilk through his G tube) up to the appropriate level. They said he was tolerating it fine, and he reached the full volume he needed (and was off of IV nutrition) on a Wednesday. They told me to bring in his car seat since he’d be going home on the weekend! But alas… the floor fell out from under us again.
I noticed that D’s eyes were quite yellow. I brought it up to the NICU doctors (who hadn’t noticed – this is why you have to advocate for your LO!) and they asked for a GI consult. D started getting sick again, and not acting like himself. He was pooping a LOT, had dark colored urine, and even started to run a fever. The GI docs were concerned since he wasn’t gaining weight as he should, and then they ran some tests and found out he was severely dehydrated. This indicated to his care team that he was not absorbing nutrients and fluids as he should be (ie, he had short gut syndrome), and needed some serious help. They stopped giving him breastmilk and put him back on IV nutrition, and the GI doctors requested that he be transferred out of the NICU and to their floor.