Well folks we have some GREAT news. We have finally gone through all the red tape and have approval for the Omegaven here in Tallahassee, plus it will be covered by insurance which solves all the cost issues of the drug. All that is left to do is order it which should be done today so we hope to have it very soon. I am not 100% sure the process but I think we will admit Nora to the hospital for 48 hours during her first couple doses of the Omegaven so we can make sure she doesn’t have any side effects. I talked with Dr. Puder yesterday though and he said he has not seen any serious side effects from all 55 patients he has given it too so we expect Nora to do just fine.
A BIG thanks to all the great staff at TMH, CHP, Boston Children’s and American Home Patient (especially Dr. Patterson, Dr. Puder and Bobby Jean at CHP) for pushing the Omegaven through, we could not of done it without you! We hope now Nora will be able to grow up and thank you herself, once she learns to say thank you of course! 🙂
More good news (man I like sharing good news instead of bad) Nora has also continued to do great on the bottle feeds. Today marks 1 full week of total bottle feeds without using the feeding tube at all! This is huge for all of us as it makes our lives easier not to deal with the pump and it is SOOOOO wonderful to see our little girl eating like she should be 🙂
Tomorrow we got to Shands for our monthly visit and I expect nothing more than good news from them as well. We will post another update once we know when the Omegaven will start and more details on the process.
I love the good news! Keep up the great work!
It only took 13 weeks to come true but, hey, we’ll take it! 🙂 Can you believe Nora is already 3 months old??
xoxo
I know, I know, the system needs to get better for sure!
Not 3 months till tomorrow….dont be rushing my little girl to grow up too fast 🙂
I know Nora’s still a day shy of the official 3 month/13 week mark but I figured it was close enough…especially since you guys will be on the road tomorrow! Why are you bustin’ my chops man?!? 😉 hee hee!
Regardless of how much we want our little sweeties to stay small and snuggable forever, the pace at which they grow is absolutely astonishing! It is amazing watching them grow and learn new and exciting things each day but it’s also bittersweet because she will be a big girl with her own agenda before you know it! Cherish every infant moment! 🙂
“she will be a big girl with her own agenda before you know it! Cherish every infant moment!”
No kidding, she is already growing so fast!
I knew you knew her real Birthday, wonderful Aunt Jen, just giving you a hard time 🙂
Love ya!
Lots of Love to you guys too!
Extra smooches to Nora of course! 🙂
Have a safe trip to Shands tomorrow
“Hi Cutie Cutie!”
Love, Cousin Marin
Congrats on getting the fish! We are amazed at how well she is eating and tolerating the food! Short gut families unite!
i’ve been reading lately a lot of stuff about how omega-3 seems to be really really heatlhy in a lot of ways.
and my girlfriend keeps remarking how incredibly cute nora is.
Hi there! So glad to read all these wonderful updates and see the beautiful pictures of my growing sunshine, sunflower!! Wow, you all have come a long way and I can not wait to see how she responds to the Omegaven at the pace she going now. I will be looking for that update. Hope you both (Sara and Montana) are well and making some time just for yourselves too! Give the little one my love.
Wonderful!
I am so glad that you have received the omegaven. I was doing some research and I would really like more information on the omegaven. I have a 24 weeker twin that is in the nicu and has SBS due to nec at only 7 days old and weighing less then one pound at that time. We are at Winnie Palmer Nicu and would love to to hear from you. Congrates on your many successes in the fight to keep your daughter healthy and alive.
Congrates on the omegaven. Can you please contact me I have a few questions? I have a 24 weeker twin that really needs omegaven. We are at the Winnie Palmer Nicu. Thanks