It Works!!


September 5th, 2007

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Well we are very happy to share Nora’s bilirubin number for the week…..drum roll please…….6.8 down from 9.0 last week and 10.7 the week before! It hasn’t been that low since the beginning of July!! We were expecting a lower number this week because of the obvious whitening in her eyes and skin but that much of a drop in one week wasn’t expected. Hooray for Omegaven and Dr. Puder for discovering it’s amazing healing power! We hope next week she is even lower.

More good news to share is Nora’s weight gain. She now weighs 12lbs. 7oz. We were starting to worry because she held tight at 11lbs 15ozs for a couple of weeks so we were very pleased to see her new weight. Since she is doing so well we will begin dropping hours on TPN tomorrow!

Our biggest concern for the moment is a fine, red rash that developed last week on Nora’s back and tummy. It kind of looks like heat rash but she hasn’t been outside during the hot hours nor has she gotten overheated recently. It doesn’t seem to bother her at all so that’s good. Our home health care nurse has been keeping an eye on it and we spoke to her pediatrician about it and neither of them think it’s concerning. We asked Dr. Puder if he had seen any Omegaven related rashes and he hasn’t. We’ve been putting fresh aloe on it and it seems to be clearing up. We wanted to try the natural approach first before trying hydrocourtazone cream since it contains steroids, poor baby has enough going into her system already.

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Happy 4 Month Birthday Nora!!!


August 28th, 2007

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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.

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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.

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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! :)

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Let the Good Times Roll!


August 23rd, 2007

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. :)

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

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Quick Update


August 20th, 2007

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

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Our Angel


August 17th, 2007

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First Omegaven Dose Done!


August 16th, 2007

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.

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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. :)

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

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Oh Happy Day!!


August 15th, 2007

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!!!”

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