Archive for May, 2007

Nora Update Email #5


May 15th, 2007

Hello Everyone,
Well Nora didn’t get to come home last week :(

She’s still very stable and doing well but they had to adjust her feedings. She was doing great with the breast milk until the doctors increased her feedings allowing her to eat on demand and then it was just too much on her little system. They suspended her feedings for a couple of days to give her system time to clean itself out and put her back on the TPN (the medicine that substitutes for food but not good for her). They resumed her feedings yesterday through her feeding tube instead of orally with a pre-digested formula. She’s still receiving TPN but the plan is to decrease the TPN again and slowly increase the formula. She is happy and content now that she’s getting food in her tummy again.

Our doctors here are consulting with Shands Childrens Hospital on her treatment. They were going to send Nora down there for an evaluation today but that has been postponed for a couple of days in hopes that the smoke from the wild fires that is closing portions of the highway will clear up. In addition to Shands, we are communicating with a doctor in Boston who specializes in short bowel syndrome and a new treatment that combats the bad side effects of TPN. We are very hopeful for our little daughters recovery and feel that there are other options to be explored besides a transplant that will result in a better quality of life for our little sweetie.
We appreciate all of your support and love. Please keep up your prayers and positive thoughts for Nora.

Thanks!
Montana, Sarah and Nora

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May 14, 2007


May 14th, 2007

Feedings increased to 3 ml of Pregestimil per hour through G-tube. Nora’s direct Bilirubin is 2.7. She is started on 50mg of Actigall twice a day to try to combat the liver damage done by the TPN.

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May 13, 2007


May 13th, 2007

Nora is fed 2 ml/hr of Pregestimil formula, a formula specially designed for babies with absorption problems, through her G-tube (feeding tube/gastrostomy). G-tube feedings allow for food to be administered at a controlled rate instead of all at once which will give the small intestine a better chance for absorption. Nora had a G-tube inserted in her stomach during her initial surgery when the damaged small intestines were removed. We were hoping it wouldn’t have to be used and she could eat orally instead.

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Happy Mother’s Day!


May 13th, 2007

Nora’s sweet nurses Jill and Patrea had a picture party at 2 a.m. with Nora for Mother’s Day. See the photo gallery for the full photo shoot.

CLICK HERE TO SEE NORA DRESSED FOR MOTHERS DAY!

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May 12, 2007


May 12th, 2007

The lack of feedings has caused Nora to become very uncomfortable and upset. The TPN gives her the nutrients she needs intraveinously but nothing is going through her stomach and she feels hungry and agitated. She is kept sedated to keep her comfortable. Today is a very sad day. :(

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May 11, 2007


May 11th, 2007

Nora is taken off oral feedings completely and put back on TPN.

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May 10, 2007


May 10th, 2007

Continued nursing with on demand feedings. Today was a bad day for Nora. She had a lot of tummy aches and began “dumping”. Dumping is when the feedings go straight through your system without any absorption and stool is very watery.

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