Long term TPN? Small Colon?

New Wife

james has been on and off TPN and lipids for the past 3 months and they are thinking about sending him home with a central line and staying on them until later when they can work on more bowel surgery. anyone use TPN/Lipids at home? i know they can cause liver damage but i guess getting him home now and doing surgery later is a good option. also, anyone that had NEC experiences and had to get surgery/ostomy....did you have colon issues? they did a barium enema today and said james has a micro-colon because they had to remove so much from the NEC.....thanks for your help!

jennigator3

Nathan was on TPN for about 1 1/2 months while in the NICU but we didn't have to bring the TPN home with us. He did have an ileostomy until he was 8 months old when he had the takedown surgery. He had most of his large bowel removed, I think they said that only 1/3 of it was remaining. As he grew, his intestines grew with him and after the surgery he made a lot of improvements. Now, at 20 months, he has no bowel issues at all, I was expecting a lot worse.

How much did James have removed? Was there any small removed or just the large? I'd be happy to talk to you about ostomy stuff, I know how stressful it can be. I also have a ton of leftover supplies if you ever need them. We went through a lot of different brands and supply companies before we found what worked for us. PM me if you'd like to talk more. 

Denesdia

We also had the TPN for a long time in the NICU, but we did not come home with it.  We also had the ostomy reversal while in the NICU, so I have experience with that part of the process.  Our DD also only has about 1/3 of her large intestines left, but I have not heard of the syndrome you described.  DD did not lose any small intestine, so maybe that would make the whole thing different.  I guess I am not very helpful, I just wanted to share that the stuff you are dealing with is familiar to me. 

OneLady

I know from experience with my youngest son that TPN can affect the liver. Both my boys were on TPN, but they were off relatively early since they were able to get to full feeds quickly. They never even needed a central line. Our youngest son still had problems with his liver functions though. Having the TPN made his direct billirubin elevated and he had to go on a special vitamin and a med to help the liver get out the "gunk." He was just given the green light to stop the med, though, since his latest labs showed that his bilirubin is now normal. All the "stuff" that our babies have to have is like a double edged sword...it helps keep them alive, but there can be side effects. Thankfully the liver issues can and will resolve with time. Good luck with baby James!

lstaylor73

I am no help with your questions, and the pp all probably can answer your q's , my guys were only on TPN for a few weeks after birth.  But I wanted to say that you may find lots of parents with experience with these things on the Special Needs board here on the Bump.  Also you will probably find even more people with this experience on www.Parent-2-Parent.org website.  You do have to create a profile and be approved before you can post but they have been hugely helpful for me with reflux and feeding tube issues this year.  I know lots of people on that board have the info you're looking for.

gizmo909

DS was not on TPN so unfortunately I don't have any help there.  But, I had a PICC line and was on TPN with lipids for 5 months while I was pregnant due to severe hyperemesis.  It can absolutely cause liver and digestive system damage and other issues, but sometimes as we all know here, the benefits outweigh the risks.  I was closely monitored for liver and other organ issues while I was on it.  I was right on the line of them pulling my PICC line and stopping TPN because of my liver and digestive system when I ended up having DS early and didn't have to worry about that.  I still have to get blood drawn occasionally just to make sure everything is still ok but I did not have any long term problems with it.  I guess what I'm trying to say is even though an adult having it isn't exactly the same as a child, it doesn't always cause problems.  GL and if you ever have any questions about it feel free to ask me!

SaranJonathan

How much lipid does your NICU use? Is he on it daily. We follow a low-fat approach to prevent cholestasis in our babies. They typically get 0.5 g of fat/kg/day 4 times a week. That gives them a good amount of rest. Does your LO have any ostomies now? We have also done some refeeding (I know this may sound gross) but we take the partially digested formula and keep feeding. This can help with growth believe it or not of the intestines. PM me if you have any specific questions.