Archive for the 'Nora Tidbits' Category

2 Hours Closer to Freedom!


September 10th, 2007

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We started tapering Nora off of her hours on TPN on Friday. So today will be the 4th day that she gets a 2 hour break from being hooked up to IV’s – yay! We are monitoring her blood sugar before and after the 2 hour break to make sure it’s not dropping dramatically while she’s off and so far she’s doing great. We’ll increase her TPN break to 3 hours soon.

Another bit of good news to share is that yesterday Nora had a record breaking amount of caloric intake from formula. She ate 498ml of 22calorie Elecare which is a total of 365 calories. She needs to eat between 550-600 calories a day to completely get off TPN so we’re over half way there! Today we will begin introducing 24 calorie Elecare with one of her bottles. As long as she tolorates it well we’ll graduatley give her more 24 calorie bottles until she’s completely on 24 calories.

Lastly, Nora’s rash is almost completely gone. We took her to her pediatrician on Friday and he thought it was Eczema related. We used some 1/2% hydrocortisone cream and it seems to be doing the trick.

Here’s a picture of Nora enjoying her 2 hour TPN break at NeeNee’s house for Grandparents Day. :)

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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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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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Home Again!


August 4th, 2007

Well Nora once again blew off the fever and recovered like a champ! :)

This time it looks like it was viral and not an infection which is good news. It has been 48 hours and still nothing has grown in the cultures and she has not had a fever for well over 24 hours now so we got the quickest exit ever from the PICU ever and are back home.

During the hospital stay though her button she got in replacement of her G-tube a couple weeks ago seems to have been defective and started leaking very bad. We spoke with Dr. Crooms and decided to remove it and replace it with a G-tube again until we could get a new button. In hindsight though I dont think we should of done it as it was very painful for her to have it removed and her stomach now thinks the G-tube is food and was sucking the tube into her small intestine which was causing her to either throw up everything she ate or have it shoot out from around the tube on her belly. For those of you parents our there upset about your baby throwing up or pooping on you try having their food erupt out of a hole in their stomach with some extra bile and stomach acid added in just for fun. Funny thinking back to before Nora was born and how the only thing I was dreading was the poopy diapers and throwing up that was coming my way and how now a thing like a mix of bile and formula exploding from Nora’s stomach doesn’t even faze me. Anyways the good thing about this is it shows how well her stomach is working. We had to try several things to get the tube to stop being sucked into her stomach further and down into her intestine. We ended up cutting a baby bottle nipple and inserting the tube into it and using the nipple as an anchor on her skin to keep the tube from being sucked in. Pretty amazing considering it has not been very long since she had the g-tube all the time. Hopefully the replacement button will be here Monday so we can switch things out.

All in all though Nora is doing great and back to her normal sweet an happy self, just a little tired from the long couple days. Its nice to be home :)

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