Archive for September, 2007

Happy 5 Month Birthday Nora!!


September 28th, 2007

Yesterday Nora turned 5 months old with a lowered Bilirubin of 5.0 to match! Her Bilirubin was 6.2 last week so we were very excited to learn of the drop! Nora celebrated her birthday by taking steps in her big girl shoes while holding on to her daddy’s fingers and visiting with Grammy and Grandpa.

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A Day at the Park with Nora


September 23rd, 2007

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Super Doctor


September 22nd, 2007

I just wanted to take a minute and publicly thank and praise Dr. Mark Puder (“Super Doctor” as Sarah affectionately calls him) for being such a wonderful doctor and human being. Although we have yet to meet Dr. Puder in person he has continued to help us every step of the way with Nora. The first time I tried to reach him was a week or so after Nora was born and I sent him an email with Nora’s information and our phone number expecting to maybe get an email in a few days, if anything. To my surprise I heard back from him within hours and on a Sunday!! He was of course really helpful and got us caught up on what we needed to do to try and get Omegaven. Through the whole process he was extremely helpful and happily assisted us and our local doctors along the way. Now whenever I email him about Nora I usually get a response within 30 minutes!! How many of you can say that about your doctor or even your friends or co-workers for that matter? If we don’t get Nora’s labs online when we usually do he emails and asks about them. This man obviously cares, and cares a lot about these babies he is helping save. Today (Saturday) as we corresponded about Nora’s recent labs via email I mentioned that Sarah called him “Super Doctor” because he always seemed to be there and this was his response….

“I am here working and need to see all the patients. I am not comfortable not seeing everyone every day. I also have to get manuscripts done. Take care. Have a good weekend.” -Mark

I am not comfortable not seeing everyone every day” Are you freaking kidding me!! I always assumed he was always just responding so quick from his blackberry or something, not really at the hospital. AMAZING! This man deserves an award! If only everyone cared this much the world would be a much better place.

THANK YOU THANK YOU, THANK YOU DR. PUDER!!! ROCK ON! :)

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Ups and Downs


September 19th, 2007

This past week has been full of ups and downs……..eating down, bilirubin up, and the one thing we’re happy that went up was her weight thankfully. Nora had a record high amount of calories last week and this week she had a record low amount of calories. Our little monkey starting teething and she has been very fussy and not wanting to eat since last Friday. Finally today she is getting some relief and starting to eat better. Since she’s been eating so little the past few days we went back to 24 hours on TPN. :( With her decrease in eating I was worried that she may have lost some weight but we were very pleased to learn today that she gained 6oz since last week and now weighs 12lbs 14oz. That’s our Super Nora!

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Nora’s bilirubin went up to 6.2 this week from 5.5 last week. It’s never fun to see a bump up but we know fluctuation in her numbers is expected and we are still very pleased with her progress on the Omegaven.

Nora had her first developmental assessment yesterday at Children’s Medical Services. It is a service provided by the state for children who have been in the hospital for long periods of time and/or who have medical issues to make sure they are on the right developmental track. The physical therapists were very impressed with Nora’s development and one made the comment that she would have thought Nora was older according to her behavior and attentiveness. We thought that Nora was on track for her age according to the baby books but it was very nice to get that confirmed by the professionals. The only thing we need to work on with her is tummy time. We’ve been limiting her tummy time because after a few minutes on her tummy her g-tube button seems to bother her and leaks. But we learned that tummy time serves a very important purpose to developing fine motor skills down the road. Since her port and button are an issue to tummy time they suggested mixing it up with time on alternating sides reaching out for objects. If any of you other short bowel parents who’s children have made the transition to crawling with tubes please let us know any tricks you may have, thanks!

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Life is Good :)


September 13th, 2007

Well Nora’s Bilirubin took a good dive again this week! It’s down to 5.5 from 6.8 last week. :) Omegaven rocks!! We are so happy this is working for her, we couldn’t have hoped for a better response.

Yesterday we bumped her TPN break up to 3 hours. It’s so wonderful to be able to play and walk around with Nora without being attached to IV lines for those few hours. At the rate she’s going now we’ll need to get her down to a 12 hour break soon or we’ll be in trouble. Nora has such a strong desire to stand and walk. She’s been practicing for weeks now and yesterday she realized her legs are strong enough to take her all the way from a sitting position to standing up with just a little hand holding from her daddy or myself. Here are a couple links to videos of Nora practicing her big girl standing that were taken yesterday.
http://www.youtube.com/watch?v=-DidQJ5fMJE

http://www.youtube.com/watch?v=3E7SWD0z2zE

On another note, we’ve been meaning to share this link to the Shadow Buddies Foundation.

www.shadowbuddies.org

Montana was searching on the net for dolls with IV ports and G-tubes for Nora and found the Foundation. It was started by a mother of a special needs child back in 1995 and they make dolls with all kinds of medical conditions and “accessories”. The style of the dolls are very basic but serve a very special purpose to these children with special conditions. Even though Nora is too young to understand that she has a IV port and so does her doll (who daddy named Normal Norman) she was instantly drawn to him and he is by far her favorite buddy. She talks it up and snuggles with him all the time. He’s accompanied her to the hospital the last few times she was admitted and wears his face mask, like our fabulous home nurse Virginia, when we change her IV port needle. Here’s Nora taking a nap with Norman and a link to a video of her whispering sweetly to him.

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Another Nora Vid for your Viewing Pleasure :)

http://www.youtube.com/watch?v=s0-Qzq2GpAc

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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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