My little Panda Bear...

My son Deacon was born on May 23rd 2008 at 7:15pm. He was a beautiful blue eyed baby and he weighed 7lbs 12ozs. I BF him once right after he was born and again at around 11pm. His last feeding was at 4am that next morning. He was very lethargic and kept throwing up a little bit now and again. That day I kept telling the nurses that something was wrong. My husband Joe has Hirschsprung's as well and we knew that our children could get it as well. Finally at 11pm that night our doctor sent us to the Children's Hospital in Vancouver. She had taken an Xray and seen the big loops of his intestines. He was then diagnosed 3 days later with Hirschsprung's. They had done a biopsy to find it. So they scheduled his surgery to be for June 4th. They told us, the surgery might be a Pull-through or he might have to have a colostomy bag. It all depended on the biopsies they would preform during the surgery to see how extensive it was. 5 hours later they came out and told us that he had long segment and that he was so extensive that he needed an iliostomy bag because he had no colon left. That was really hard to take. We spent the next 2 weeks at the hospital waiting to be released. They finally released us a few days before his 1 month birthday!
He had his iliostomy bag for 5 months before his surgery was scheduled to be in Nov. They went in and it was another 5 hour surgery. When they came out this time they told us they had preformed reconstructive surgery on his small intestines. They had connected them lengthwise together with a piece of his old colon. They did this so that he could better absorb water, salt and protein. But it was so extensive that they couldn't remove his stoma. So they had put in another one on the other side. Sucky!! So he had that one until his Jan 16th surgery. His stoma closure!! Yaa!! That surgery was only 1 hour long! But it was hard for him to adjust so we ended up spending an extra 5 days in the hospital. He was screaming from the gas pain! He had never had gas before! So after that surgery I started looking at him like he was a normal boy. I didn't want to think about potty training, or anything else. I just wanted to focus on my two sons.
On March 17th, I had to rush him to the ER at Children's because he had the flu and he had lost 2lbs in 2 days! They told me later that his kidney's had almost failed! He had been very close to dying.
So that's why I wanted to start this. I was hoping that other parents could give me advise and I could tell them what has been working for me. Right now Deacon is 10 months old and he weighs 15lbs. From the age of 4 months to 10, he weighed the same, 12 lbs. That's scary! So right now I'm trying different things to get him to gain weight.
I also know that 80% of Hirschsprung's is short segment. I know that Deacon is in 5% of Hirschsprung's. I'm looking for other blogs with other types of Hirschsprung's so that if you have a question, you can find it here! We need to stick together and talk about it! If Ive gone through it and it hasnt worked, maybe you need that information!
Anyways... comments are always loved!!