Sunday, February 22, 2009

Ellie's Belly

Hello, my name is Abby, This is my first post, but I have been an avid reader of this blog for a while now. I have a almost 3 year old named Ellie, she was born missing 90% of her small bowl and 30% of her large bowel due to Jejunal Atrisia. What we have been told is the probably what happened is during her 11th week in utero, her bowel twisted as it moved into the abdominal cavity. This bowel died and was re-absorbed. This means when she was born she had 30 cm of small bowel coming down from her stomach that ended in a very dilated dead end. Then what was left of her colon that was coming up from the bottom was very skinny, called a micro colon.


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 Connecticut to Massachusetts to be closer to Children’s Hospital Boston and our family. We had no idea that this was coming and our lives have never been the same since that night when Ellie was 18 hours old, when the surgeon walked in and explained what she found in Ellie’s belly. But in a way our lives have never been better. We love where we live, the path our lives have taken and love our amazing daughter.


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!



11 comments:

Lori said...

Wow! Welcome to the blog. She's a doll. Sounds like you've learned a lot, can't wait to get to know you better.

tiptoe mama said...

welcome welcome! It's always fun to meet a new face in the tulips. Look forward to getting to know you better! :)

Melissa said...

What an amazing journey you have come on! I can't wait to get to know you and Ellie better. She is certainly as cute as can be. I can see that you can bless the lives of all of us here and I hope we can do the same. Thank you for sharing your story!

Nancy Brown said...

wow.. I am amazed at your story. Who knew TPN would be such a miracle drug yet hurt so much. So glad she is doing good. She is GORGEOUS!!

Liz said...

Great to have you here. :)

Luke and Erin said...

Welcome to the garden! I am really excited to get to know you!

Happy in Holland said...

Welcome Abby and Ellie. I love meeting new people and learning about all these amazing moms, kids, and families out there that we can all connect with and relate to. I hope to get to know you better! Thanks for sharing your story!

Katie said...

I am so excited to hear more from you! I am glad that she can do so much. Missing that much bowl is a really tough thing. I love what you said about scaring a new resident. I hope you like it here!

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Pediatric Wheelchair

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Chair For Cerebral Palsy Child

Keep Posting:)

Wheelchair said...

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Karma KM 2500 Wheelchair

Keep Posting:)