Quote from BittyBabyGrower
Oh man, that kid has it bad....I looked up the Ann Arbor News article and they mom said that they are feeding her "sugar and salt"....that tells me that this poor kid's liver is shot also from the TPN...that usually goes hand in hand with bad gut, esp when you have no small intestine. Sad.
From what I can tell, it sounds like she's on D10 Lytes or something similar - but not because of her liver. It's because the docs, ethics committee, and courts have decided on pallative care only. They stopped the TPN and blood transfusions. They are keeping her on narcotics and the ventilator because the parents do not want to remove life support. By providing IV fluids (even if it's not TPN, dextrose alone is considered nutrition so legally they're in a safe place) and mechanical ventilation, they are just supporting her life until she passes naturally, it sounds like.
The parents blogs and the newspaper articles - you can link to them all from the original post's link - give a lot more information but you have to really read everything closely. They keep saying that she's proving them wrong because she hasn't died yet. Yes, it is true that many micropreemies with devastating NEC pass quickly, it doesn't always happen that way. We've all seen plenty of them survive with absolutely NO gut, like this baby. Short term survival is possible, yes.
But the thing is, a 23-weeker is most likely not going to have a healthy brain or lungs and these things can keep her off the transplant list should she survive long enough to grow to the proper size needed for the surgery. So in the end, even if she survives now, without a bowel and liver (which she of course will need by then because she'll absolutely have to live on FULL TPN, not just partial) she won't survive for more than a couple of years.
I have seen this kind of thing a lot at work - we probably all have. I understand about wanting to spend as much time with your children as you can, and not "giving up" by taking them off life support. But after seeing too many babies die a very painful death from liver failure, it just breaks my heart to see cases like this. It's an absolutely horrible way to die. And without a transplant, it WILL happen. Without any small bowel left, there is just no way....
The thing that bothered me the most, for some reason, was the part of the article (one of them) that mentions that this little baby (33 weeks corrected gestational age right now - still a preemie) is smiling at people already.