Sunday, January 11, 2009

OMEGAVEN!! Welcome

With the article on the front page of the Globe last Friday we have a bunch of new readers. We went from having around 150-200 visits a day to over 900. So we decided to do an quick post to catch everyone up to date. I have linked key words in this post so if you don't know what something is, just click on it.
Ellie before the Omegaven
Ellie was born in with Jejunal Atresia, this left her with 30cm of grossly dilated small bowel coming down from her stomach that ended in a dead end, and then 70% of her colon, that was very small from disuse, coming up from below also ending in a dead end. What happened is that at about 10 weeks into gestation the bowel either got twisted or there was a blood clot, and the bowel lost blood supply and died. It was then reabsorbed into the body. We have been told by the geneticist at CHB that this was a just bad luck and not associated with any genetic disorder.
Ellie post Omegaven
She is was at Children's Hospital Boston for 8 months and now is doing very well. We have been back multiple times since then but not enough to get the name "frequent fliers." She was on Total Parental Nutrition (TPN) and Omegaven for IV nutrition through a central IV line in her chest for the first 32 months of her life. But as of December 1st, 2008 we were able to stop both with the hope that she would be able to sustain her needs from the small amount of bowl that she does have.
She eats 3 meals a day, and the only thing she drinks in Elecare formula. She also is on tube feeds 16 hours a day. This is what the is in the backpack that she wears. The backpack holds a pump and a bag of formula that is pumped into her belly 16 hours a day. Your intestine adapts as it has contact with food, so if it always has contact with food, then it is always adapting. And adaptation is the only way her bowel is going to be able to do the job that a normal child's would.
Ellie had very dilated small bowel that resulted in inability to tolerate food, bacterial overgrowth and a few line infections. So in November 2006 we opted to create an ostomy at the end of her small bowel to allow the back up of food to have a place to go, while keeping the colon attached. This has worked very well and we have seen little to no bacterial overgrowth since. And (knock on wood) no line infections. Click here to see a map of her bowel layout.
We are hoping that sometime this year we will be able to reconnect her bowels and remove the ostomy. Then she will have a central IV line for a short time and a G-tube for as long as she needs it.

If you are looking for information about short bowel syndrome or short gut, a very good site is the Short Gut Wiki, it was created by short gut parents and patients for anyone with short gut.

If you are looking for more info on Omegaven please look at the Short Bowel Wiki for more information. There are some great stories of some amazing kids on that site. Also you can contact Children's Hospital Boston to learn more about their Omegaven program. The lead surgeon for the program is Dr. Mark Puder he works along with pharmacist Kathy Gura to run the program.

We have met many amazing families through this blog. Please look at the column to the right to visit their blogs, get more info on short gut and our doctors. We also love to meet new short gut families, please feel free to email us (look in column to the right).


We can not say enough about Omegaven, or Dr. Puder, pharmacist Kathy Gura and Ellie's surgeon Dr. Russell Jennings. We give credit to all four for saving our daughter's life. She is an amazing child and we can't wait to see what she will do next.

7 comments:

Rhea said...

You guys are amazing!!! Sharing Ellie's life has saved so many babies. Thank you for saving mine. Olivia says "thank you Gib, Abby and Ellie".

PsychMamma said...

Glad that Ellie's doing so well!! She still reminds me so much of J, in so many ways. Glad that the paper gave you a chance to reach out to so many more people.

There's an award waiting for you at:

http://psychmamma.wordpress.com/2009/01/16/and-the-award-goes-to/

{wink}

Anonymous said...

The article is great. All of us cannot thank you enough. -Connor and family

Erin said...

The article on Omegaven ran in the Globe just a week after our daughter was born with short gut and it gave us a lot of hope to see the photos of your beautiful, bouncy girl. We know every child with short gut is different, but we wanted to thank you for the inspiration.

All the best,
The Conwell/Balas family

Anonymous said...

Good to hear about Ellie. Just a note, Kathy Gura is a PhD, so also a doctor.

Ashley Cooper said...

Hey my daughter is going through the same thing she is still in the hospital she was born with her guts outside her body but they have done put her back together and she is still not able to eat she is 3 months she was born june 4 2009 and her doctors are talkin about puttin her on this omegaven lipid her name is Hannah Brook and she is my first child im so happy that your daught has made it i hope mine does the same

Ashley Cooper said...

Hey my daughter is going through the same thing she is still in the hospital she was born with her guts outside her body but they have done put her back together and she is still not able to eat she is 3 months she was born june 4 2009 and her doctors are talkin about puttin her on this omegaven lipid her name is Hannah Brook and she is my first child im so happy that your daught has made it i hope mine does the same