Feeding into mucous fistula - can it be done at home?

[rahmcd]

Our full term 4 week old has been in the NICU/PICU since birth. It’s a complicated course, but the most recent reason he’s still admitted is that he had a bowel perforation, emergency surgery, and he’s still intubated after a very scary course with ARDS. He’s almost 2 weeks post-op. The expectation is that he will have his ostomy takedown surgery 6-8 weeks after bowel resection, so about 4-6 weeks from now. His ostomy is very proximal so they have just started running feeds into his jejunum where the mucous fistula is, with the hope of advancing to goal and discontinuing TPN.

We aren’t close to discharge now because he’s still intubated, but I’m just wondering, has anyone fed into the mucous fistula at home? He has a foley cath inserted into the fistula; it’s not like a traditional G or J-tube.

It breaks my heart to think about being here for his first 3 months of life, assuming he heals as anticipated after his next surgery and learns to eat by mouth well. I’m preparing myself for it, but wondering if we might be able to have a few weeks at home before his surgery.

 

[straykat]

@rahmcd NICU nurse here. Unfortunately babies with complex gut issues can have some of the longest NICU stays, even if they aren’t preemies. I’ve only ever seen my facility discharge one child home during refeeding into an MF, and that was a unique/weird case for many reasons (and the baby was already scheduled for takedown surgery less than a week after discharge so she was only home for a couple days before returning to the peds unit). I have seen a few kiddos discharge home with ostomies but they’re usually Hirschprung’s kids who are expected to have their ostomy for months/years and aren’t being re-fed into a mucous fistula (I’ve also seen it with severe but very distal NEC).

The reasoning I know of for the hesitancy to discharge while feeding into an MF is that these kids are at high risk of further surgical bowel emergency and their feeding tolerance + weight gain all need to be very closely monitored. It’s a safety issue.

I get the miserable feeling of a long NICU stay, my son was there for 6 months (no surgical gut issues, but basically every other preemie complication in the book). It sucks, there’s no way around it. But 4-6 weeks isn’t that long, especially for a baby who’s still intubated - I’d be shocked to see even a term baby go from severe ARDS + weeks of intubation + surgical gut issues + TPN dependence to tolerating full feeds, off TPN, full respiratory stability in enough time that it would make sense to discharge and come back within the takedown time frame. It sounds like you have a long way to go and I hope baby’s recovery proceeds as smoothly as possible! Hopefully with excellent surgical recovery baby can wean off TPN post-surgery (it’ll be reintroduced even if baby fully weans off it before takedown) and tolerate feedings fairly quickly! Does your facility have a child life specialist and/or PT/OT staff who can offer toys and developmentally supportive activities for you to do with baby in the hospital after extubation?

 

[brethrenfund1]

@straykat To add onto this, refeeding can sometimes go great and sometimes is a huge mess. I’ve had kiddos where whatever we put in the mucous fistula came right back out. Something like that can potentially be very difficult to manage at home I hope everything goes well with the takedown and you’re home soon!

 

[rahmcd]

@brethrenfund1 Good point, thank you! The surgeon mentioned the same. Darn. I hope this helps the gut heal a little bit and he has a successful surgery.

Thank you for sharing your experience!

 

[rahmcd]

@straykat Thank you so much! I suspected as much. The doctor thinks another week or so on the vent (of course, I’m holding no expectations because we have thought we were discharging twice and then crazy stuff has happened), and I’m sure working with OT on po feeding will take a while, so I assume we’ll probably need the whole 8ish weeks anyway. But missing his whole newborn phase has really got me down and I just wondered. 6 months there with your baby must have been so incredibly difficult!

The OT/IBCLC we worked with in the hospital prior to this complication is absolutely wonderful. I know we will be seeing her the day that ET tube comes out, even just for moral support! He was actually eating above his goal before one of his first complications.