Crowdsourcing because I want to push for challenging Luke and getting rid of his line sooner rather than later, and the biggest hangup as far as I can see is that he's great when things are good but as soon as he's a little congested his appetite decreases and we have vomiting and I really don't know how he'll handle that without the boost of fluids and calories from TPN. So I know that this will likely be different for Luke, but I'm just trying to get a frame of reference for what's normal in this situation. I know I could reasonably go for a day or two without eating, or take a significant decrease in calories for several days while sick with no significant effects, but I have no idea how this works in tiny people. (I've also posted something similar in my SBS group so I can get several points of reference.)
So, when your LO is sick - how much less does he or she eat? For how many days? How much vomiting have you endured with no significant ill effects (like needing IV fluids or hospital stay)?
FKA mimi4347: diaper rash magician and unofficial expert on excrement


This kid may not have a lot of bowel, but he has plenty of guts!
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
Re: Talk to me about how your LO handles common illnesses
I lost my angels 07/2010, 04/2017, 10/2017
Meimsx no more
Other stuff is mostly green snot and DC nose. The kind where her upper lip is a booger zone. No fevers really, only from 6mo shots (with flu shot I think).
I'd ask your SBS board. What did your pedi say?
Also, he is adorable and beautiful!
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
When he had his six week ear infection, his milk consumption dropped to 8-10oz at 10 hours of DC and two lackluster nursing sessions. He had diarrhea from the meds, so it was hard to monitor diapers.
When he had the flu, his consumption dropped to 10-12 oz at DC.
No vomiting. So common cold, there is no change. Ear issues there are changes.
Baby boy 7.10.13
DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
We were told one very wet diaper a day was the bare minimum requirement during that time.
Only you know your baby, be his biggest fighter and you can't go wrong! He's already proven he is a tough little man