All the organs practice and learn how to work while in utero, but because Ellie’s bowels were not connected they never learned how to do what they were supposed to do. We spent the first 8 months of Ellie’s life in the hospital trying to get her bowels to do what bowel are supposed to do.. I quit my job, we sold our house and we moved from
Ellie has an ostomy, a G-tube and a Central IV line (CVL). Ellie is on tube feeds and was on Total Parental Nutrition for the first 2 and half years of her life. The TPN should have damaged her liver beyond repair during those two and a half years but we were lucky enough to get on the new experimental lipid called Omegaven. It is one of the main things we credit for saving her life. She is still on IV hydration fluid every night.
Right now the most important thing is getting her to eat and eat enough. If she eats enough then we can stay off of TPN. We have had Feeding Therapist coming to our house ever since we go home. Now she does eat by mouth but it is slow and we have to remind her to chew. Meals are long and sometimes painful. Even though she does eat she is still on he enteral pump for 16 hours a day.
Now all the being said, if you ran into us on the street you would have no idea that Ellie was in any way different. She is a riot, she runs everywhere and will start up a conversation with just about anyone. She is in Gymnastics, Ballet/tap, and just recently a sports class. She is very active and very social. But if you pulled up her shirt and took a look at her belly and chest then you would know the truth.
We try our best to make sure she gets treated the same and gets all the same experiences that all the other kids get. The only thing she can't really do is swim. Due to her central line, we have to be very careful. She can only swim in very clean ocean water or a swimming pool that we know is really clean. She has been in the ocean twice, my sisters swimming pool twice and she has only had 1 real bath ever in her whole life. The thing we fear is a central line infection. We have been able to go two and half years without one so far, and would like to keep it that way.
So now I know more about the human GI system than I should; I can and have setup TPN by candle light, have spent 264 days in the hospital with Ellie so far, have met some amazingly strong kids, parents and adults and know how to scare the crap out of a new resident at the hospital.
I love this blog and others like it. They have been amazingly helpful and a great source of support, I look forward to getting to know you all better. Sorry this is so long!