Yesterday was Nora’s 4 month birthday. She enjoyed the day by taking lots of naps and a little b-day celebration with mommy, daddy and our good ol’ dog Bubba.

Yesterday was also Nora’s weekly day for blood work and to our very pleasant surprise her Bilirubin is already going back down. It was 8.9 compared to being 10.7 last week. We knew to expect a spike in her numbers when first starting Omegaven so hopefully 10.7 will be the highest it will go. Tomorrow will be a full 2 weeks on Omegaven for Nora. Only time will tell how well it will work for her but it definitely seems to be leading her in the right direction. She continues to pinken up by the day and the whites of her eyes are looking less and less yellow.

She continues to amaze us everyday with her strength and ability to overcome every obstacle that comes her way. She’s such a delight and fills our hearts with so much love and happiness. I know I said this on her 3 month birthday but to think back where we were 4 months ago seems like a whole world away. We are truly blessed to have such a special little darling. That’s our Super Nora!

Lots of good news to report! The Omegaven therapy is going very good, even though Nora’s Bilirubin went up to 10.7 this week from 8.9 last week (which is expected while her body is flushing out the jaundice) her color is continuing to pinken up and get less yellow by the day. The whites of her eyes had been very yellow, especially in the corners, and they are also whitening up. Now her beautiful blue eyes are looking even more spectacular!

We had a very positive and encouraging conversation with Dr. Puder a few nights ago about decreasing Nora’s TPN and her overall progress. Since she’s taking a good amount of calories orally from the Elecare we should be able to start decreasing the amount of hours she’s hooked up one hour at a time. The ultimate goal is to get her down from 24 hours a day on TPN to only 12 hours at night. Since the Omegaven is only for 12 hours at night that means that we could have a IV line free girl for 12 hours during the day!!! We had our monthly Shands visit yesterday and discussed this with them too and they agreed that we can start tapering off TPN hours soon. They thought that overall Nora is doing very well and were impressed with the amount of formula that she is able to handle.

With both the Shands doctors and Dr. Puder we also discussed introducing some breast milk soon and they both think it’s a good idea. I stopped pumping a while back but we have a pretty good stock pile of mommy’s milk in the deep freeze waiting for her.

Lastly, a report from the poop inspector! Nora’s poop had still been pretty loose ever since the last round of anti-biotics from her hospital stay at the beginning of the month. It had slowly been getting thicker and then yesterday she had a picture perfect BM, just as thick as any other baby on formula! For those of you who are new to reading about Nora, her stool is a very important factor in determining how well her bowels are working and absorbing nutrients. The looser the poop, the less she is absorbing. So you can see why we do a happy dance when we see good thick stool.

Here’s our little sweetie chillin on the couch and sitting up like a big girl.

I just wanted to let everyone know Nora is doing GREAT on the Omegaven.  She had no side effects as expected and it seems to be working already We dont have lipids anymore so just 1 pump during the day. Yay!

More details on Super Nora and the Wonder Fish tomorrow. For now Dad needs some sleep……zzzzzzzzzzzzzzzzz

Well Nora handled her first dose of Omegaven just like we expected, with no side effects or reactions! She awoke bright and spunky this morning and we swear she’s already looking less yellow. At first Montana and I thought we were hopefully hallucinating but then the nurse said she noticed a difference too! Whether it’s working that fast or just a coincidence we’re still glad to see it.

Since Nora handled the first dose fine we were moved into a regular pediatric room instead of the ICU for tonight. Less wires and much more comfy for everyone. As you can see Nora and dad are resting peacefully.

We are looking forward to getting back home tomorrow and watching our little sweetheart whiten up – yay for the fish!

Nora started on Omegaven today, YAY, YAY, YAY!!!! It’s been a long time coming and the culmination of work and persistence from a lot of people so today is a very happy day. Many thanks to Dr. Patterson, TMH Board of Directors, CHP, American Home Patient, and of course Dr. Puder and the Boston Childrens team!

Nora will be in the hospital for the first 48 hours to make sure that she doesn’t have any adverse reactions to the Omegaven. In our previous trips to the hospital it’s been worrisome, stressful and exhausting, but this time it’s exciting, happy and celebratory! We are very hopeful that Nora will have the same great results that many other children on TPN have had after starting Omegaven. Connor, one of the other short gut kids, who recently started Omegaven has seen amazing results. His Bilirubin is now at 0.6!! Way to go Connor!!

More great news to report is that Nora is in her 3rd week of all bottle feeding and now she is up to 22 calorie formula full time. She’s eating about 50 ml every 2-3 hours. Even though that’s not enough to meet her nutritional needs it’s still far more than anyone ever expected for her to be able to handle. She’s one tough cookie! She’s continuing to gain weight and is now up to 11 lbs 14 oz.

Here are some pictures of Nora beside her first bottle of Omegaven clinging to her IV pole as if to say…….

“I can’t believe its really finally here and I’m not letting go!!!”

Well we really should be getting Omegaven by next week. (how many times have we said that?!) But this time it has to be true, we can’t imagine any other possible obstacle. After finally getting everything straightened out with the FDA our home health care is now in the process of ordering Omegaven. They and we thought that we would have it in 24-48 hours until this morning it was realized that our home health care company doesn’t have an account with the courier company that has to be used to deliver the Omegaven in order for it not to get held up in customs for 1-2 weeks. It takes 3-4 business days to set up an account with this company (why would it take that long to set up an account, I don’t know…..) and then it should be here soon after wards. We are very anxious to get Nora on the Omegaven as her Bilirubin is now up to 9.3.

Nora got her new button put in yesterday so no more nipple tummy, yay! In order for her small intestine not to suck down the g-tube catheter balloon we had to anchor the g-tube to her tummy with a bottle nipple. This made dressing her quite a dilemma, we had to sacrifice a few onesies by cutting holes in them so they could fit over the nipple. Nora’s poor tummy went through a lot these past few days. In addition to her stomach lining being irritated by the g-tube issues, the heavy duty anti-biotics they had her on in the hospital made her have bloody poop again. She hasn’t had a bloody stool since this morning so hopefully it is clearing up and she’ll be back to having thick, healthy poops in no time!

Nora went to her local pediatrician today for a follow up from the hospital stay. While she was there they took her weight and measurements and Dr. Dalrymple was very pleased with her growth! She’s right on track for her age with her weight at a nice and plump 11 lbs. 5 oz. and above average length at 23 1/2 inches long. She’s grown 5 inches since she was born! Since the doctors expected for Nora to have nutritional issues her growth is quite impressive, that’s our Super Nora!

We still can’t post new pics in the photo gallery so here are a few recent ones for your enjoyment.