I just wanted to post quickly with the update that Blaise's bilirubin level is now 1.5/0.8, or just 0.8 if direct bili is what you obsess about (and it is). This means she is well within the normal range and that the Omegaven has done its thing on her liver. She also really digs the Fisher Price aquarium bouncy seat, which has me a little worried that all the fish oil has made her think that she is a fish.
Now we're just waiting not so patiently for her lower GI study on Thursday afternoon and our Friday meeting with her surgeon to discuss the plan for April. We know she has some large intestine because her surgeon saw some of it during her first surgery, but she was too fragile and her insides were too much of a mess for him to find out much more. She may have only a tiny fraction of her large intestine. She might have most of it. If we're feeling really optimistic, we hope that she has an ileocecal valve (ICV), which is the valve between the small and large intestines. The real outside shot is that she still has more small intestine than we think. The chances of that are beyond slim. We'll work with whatever she has and we're prepared to hear that she has next to nothing. We just want to know what the situation is. But the more she's got, the better.