We have a 3 week old baby girl who was born with Gastroschisis at 36weeks. After surgery they found only 50% of the large bowel and only about 20cms of small bowel that was working. Alannah is now on TPN as well as breast feeds and she has a stoma. She is due for another surgery in 3 weeks to see if they can find any more small bowel that will work.
Has anyone had any experience with this amount of small bowel??
I experienced this with my son who had all of his bowel and the majority of his small intestine removed due to disease. TPN is only good for 2 years, and then as a result, other problems arise, and serious ones. This is truly not meant to scare you. They are able to transplant small intestines, as my grandson had a 5 organ tranplant which included the small intestine. I hope they find more working bowel when they do the surgery, and will keep your baby and all of you in my prayers. I know it's scary, but there's a lot they can do these days. Try to stay positive, and I would start asking about options should they not find any more useable small intestine. I don't want you to think negatively, but just be very proactive in getting the answers you need, and being prepared for everything. Good luck to you and your precious baby..........
There is a support group from the Oley Foundation, called Inspire. I don't have the web site memorized but it is easy to search out. I had TPN for over 5 years with no problems. There are many people and children that depend on TPN for the rest of their life. It is a life saver if there is no other way to get nutrition. I may be back on TPN iindefinetly because of severe dumping and gastroparesis. Right now I am on nJ-tube feeding because I am unable to take much at orally. TPN can cause a lot of complications besides line infections. But with good doctors, they do monitor and your little one can do good. You will be in my prayers and many hugs
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