Welcome!

I'm starting this blog as a means of recording our food journey. Marissa has sbs due to NEC. She has between 2-4cm of small intestine, no IC valve. She also lost 95% of her large intestine/bowel and colon. As a result she is on 20hr TPN daily. We are working to fight off TPN induced liver failure. At one point her liver function was so poor she remained in the hospital awaiting a liver transplant. Thankfully her liver function is now within normal limits. Her GI attributes this to enteral feeding which he tells me stimulates her liver and pancreas to function. Previously the benefit of the formula enteral feeds out weighed the side effects. Thankfully I am now aware that we have more options than the high calorie formula alone. This is food. Good old foods like avocados, potatoes, bananas and plain yogurts and kefir. Her side effects have improved drastically. With the addition of these foods and a few supplements we are hoping to maintain this liver function and hopefully adapt her bowel to absorb *something* with these added calories we pray that eventually the number of hours she spends on TPN each day will be reduced. I have this fantasy of hooking her up before bed and unhooking her when she wakes in the morning...It might still be many moons off from reality..but I believe in dreaming big! My plan is to keep a daily food journal here and talk about all other things short gut as the need arises.