Eating Problems

My son, Aiden, is 3 1/2 months old. He was born with LCDH with his stomach, spleen, intestines and part of his liver in his chest cavity. At 1 week old he was repaired! After 64 days in Vanderbilt NICU we were discharged home- at the time of discharge he was eating exclusively breast milk that I was pumping and had some pretty severe gas but otherwise was doing well. We didn't have to come home with a feeding tube! Yay!

Fast forward to a month later and I am running out of ideas. We have been working with his specialist however I am hoping someone will read this that has possibly been through the same thing. After coming home Aiden's gas continued to get worse and with the stress of everything my milk supply dried up. At that time I started trying 1/2 BM, 1/2 Formula. I started with GentleEase after about a week he started having extreme amounts of pain with eating, I could literally hear his stomach rolling and then he refused to eat. Over the last month we have tried Nutramigen, Elecare, Pregestimil-- all having the same results after a few days. Pedialyte is the only thing that hasn't caused him problems-- which is what we have done for a 24 hour period prior to trying a new formula.

He has had an Upper GI study as well as a lower-- there is no malrotation (Thank you God) and no blockage.

However mommy and baby are exhausted. He is obviously having difficulty gaining weight since every 3-4 days we are doing Pedialyte for a 24 hour period.

Is there anyone that has had similar issues? At this point I'm willing to try anything! We have spent almost $300 in formula that he refuses to eat. Who knew the repair surgery would be the easiest part of all of this!