Short-gut syndrome

Hi-(My dad wrote about my son b4, i just wanted to give more detail and share my story)
January 2007 started a new life for me and my family, i found out i was pregnant! i had my first sonogram about two in ahalf months when my doctor said something didnt look right..from then on out every sonogram same thing "something doesnt look right" They said at one time the baby had a inlardged stomach and possible surgury would be needed while he was in my stomach..throughout my whole pregnancy it was stressful. Never understanding what was going on or what was going to happen..i had my beautiful 4lbs 9oz son 8weeks premature. I got lucky  with the labor it lasted about 45min. everything went great i didnt feel a thing..he came out crying and looking as tho nothing could be wrong. Two days after his birth, he was taking in for surgury..hoping it was just a blockage in  his intestines. But God had bigger plans for us..Bentley(my son) was pronounced with extreme Short-gut syndrome on his daddys birthday August 2nd. Pretty much all of his smaller intestines had curled up and died he was left with 10centimeters which is not enough to live off of..he will be needing a small bowel transplant and depending on how long of a wait liver transplant as well.We have been to Pittsburgh Pa. once for evaluation and are headed back for our first appointment..i've done alot of research since the people that are suppose to be communicating with me really havent been doing a good job..i still havent gotten everything figured out as far as transportation..my ? for anyone in simular situations is When you get the Tranplant/Donor call it has to flow at a fast pace we are in Texas needing to get to Pittsburgh F-A-S-T is there any places anyone knows of to in touch with to help? Im kinda out on my own about this if your not in the hospital which we are not at the moment thank God everything is kindof in my hands to get worked out. Bentley is now 12lbs 1oz growing and being as normal as can be wouldnt even know if you saw him the troubles he has..i do ask you keep us in your thoughts and prayers we have a long road ahead of us. Thank You-Danielle