Happy Omegaven Anniversary! Nora received her first dose of Omegaven one year ago today. (click here for original post) Omegaven saved Nora’s liver and allowed her to have the best chance possible to grow strong and healthy. I’d say it’s a success!
It’s scary to think where Nora might be without it. Her doctors thought her only chance would be to have a liver and/or short bowel transplant. Nora was 3 1/2 months old when she started on Omegaven, she was very jaundice and her direct bilirubin was 5.5 and total bilirubin was 9.3. After a short spike up to 10.7 (as expected while flushing out the jaundice) Noras’s total bili was down to 1.0 after only 2 1/2 months and down to 0.3 after 3 months where it has stayed since. Nora went from a very sickly yellow/green color to a healthy pink! Here are some before and after pictures. You can see that even the whites of her eyes were yellow.
Before Omegaven, July-August 2007
After Omegaven, October-November 2007
……now we’re two pasty pale peas in a pod! 🙂
Before Nora started Omegaven we weren’t really sure what her natural skin color looked like. Her coloring wasn’t good from the start from being so sick and then she quickly became jaundice. Montana has olive tone in his skin so for a while we thought Nora did too. But once the jaundice was gone turns out she’s as fair skinned as me. Not that it matters who’s skin tone she ended up with it was just very nice to see our babies healthy skin color jaundice free!
We were so fortunate to have gotten approval for Omeagven here in Tallahassee. We were all ready to head up to Boston to join the trial study but thankfully we got approval from the FDA and our insurance company agreed to cover it. It was a struggle to get it here but definitely a battle worth fighting for. We feel certain that having the opportunity for Nora to stay at home surrounded by family and those who her love her made a big impact on her success in getting healthy and strong.
Omegaven is a wonderful gift from nature….fish oil. It has saved many babies lives and the numbers are growing thanks to Dr. Puder! It was created by German doctors and used for it’s anti-inflammatory properties in post-op and cancer patients, then Dr. Puder discovered it’s amazing counter effects to liver damage caused by TPN. It’s crazy that such a natural medication is still not approved by the U.S. FDA. Hopefully Omegaven will be easily attainable by anyone needing it one day very soon.
Happy HEALTHY Omegaven Anniversary, Nora!!!
We love you!
Montana, Sarah, and Nora:
Congrats on the one year aniversary! We have been following your blog for several months since our own son was diagnosed with a rare disease that make him TPN dependant.
Sam started Omegaven just a few weeks ago and his progress has been remarkable. THANK YOU for sharing your story with the world and helping to get the word out about Omegaven! We enjoy reading your updates – they have made our picture for the future much brighter!
I can’t believe it’s been a year! And here she is, chasing the ducks, talking, and living a wonderfully full life. I have an idea of what making those things happen has required of both of you, Sarah and Montana. Your devotion and care continues to be life-giving for Nora every day. Here’s to many more healthy, happy – and maybe less exhausting – years ahead 🙂 Love and kisses to all-
Thank you Omegaven for giving all our children another day, another week, another year!!!! CONGRATS SWEET NORA!!!
Wishing Sam our best too!!
HOORAY for Nora, Sam and Omegaven!!! I am so happy for Nora and Sam that they can receive Omegaven. Thank you for sharing Nora’s story so that others can learn from your experiences.
It must have been such a blessing to get Nora on Omegaven! The change in her color is so amazing! I have a 6 month old baby that has the same diagnosis as Sam Oconnor and she is TPN dependent. We are from Tampa, FL and are unable to get to Boston as much as we want to right now. We talked to her Doctor in Miami about trying Omegaven and got shot down. Where in Tallahassee where you able to get it? Thank you so much for your help!
The Carver Family