Archive for the 'Nora Tidbits' Category

Nora had a great week!


October 19th, 2007

In the words of Aunt Jenn, “Nora + Omegaven = Awesome!” Nora’s Bilirubin is down to 1.7 and she is doing great! Her liver enzymes are down as well and her AST number is even in the normal range. We could not be happier! Nora’s liver has not been this healthy since she was born and first put on TPN.

Here’s a little recap of Nora’s week………….

Nora practicing creeping on her tummy and push ups…….and feeling very proud about it. :)
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Happy and cute after an afternoon visit with Grammy and Grandpa on Sunday.

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Nora sporting her baby robe awaiting for her numbing cream to take effect on needle changing day.

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I’d seen these cute little baby robes for years and always thought how cute but what does an infant need a robe for? But it is the perfect solution for needle changing day! Every Monday Nora gets her port needle changed…the routine is disconnect from TPN, flush the port, take out the needle, douse the skin covering the port in alcohol and give the skin around it a good cleaning as it only gets a break from the tape dressing once a week, give Nora a good scrub down (the bath once a week where we don’t have to worry about not getting the dressing wet) and then put numbing cream over the port where the new needle will go in and cover it up with some gauze so the cream wont get all over her chin, which somehow it still does anyways. The numbing cream takes 30-45 minutes to take effect (which works wonderfully by the way, Nora never feels a thing) so in the mean time I used to wrap Nora up in a blanket instead of dressing her because the numbing cream tends to slide down around the port instead of stay on top of it because it’s raised and we’re just going to undress her anyways when her fabulous nurse Virgina puts the new needle in. But it was a challenge to keep a wriggly little muchkin wrapped up but now the robe takes care of that! (and she looks darn cute too) :)

Nora and super nurse Virginia after putting in her new needle.

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Snuggling it up with Normal Norman, her Shadow Buddy, after some serious play time and running around in her walker.

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Oh so sleepy………..

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The Best Anniversary Gift Ever


October 11th, 2007

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Hello Everyone! Nora is still on the path to a healthy liver thanks to Omegaven! Her Bilirubin is down to 2.5 this week from 3.4 last week. Anything below 1.2 is considered a normal level so we’re only 1.3 points away!! Her AST and ALT numbers are dropping as well which are also a big indicator of liver inflammation. They had been in the 300-500 range and they are now in the 150-280 range.

More good news is that she gained 7 ounces from last week. Our plump little Nora now weighs 13lbs 7oz. Her eating has picked back up and more some since her eating dipped a few weeks ago when she started teething. She’s still on 22 calorie Elecare. We tried mixing in some 24 calorie bottles a few weeks back but it made her stool very loose so we didn’t push it. She seems to be able to tolerate a higher volume of lower calories better than less volume of more concentrated calories. She’s taking 80ml bottles every hour and a half to two hours and her poops are great!

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Nora had her 3 month follow up appointment today for her IV port and g-tube site with the magnificant surgeon Dr. Crooms. He was very happy to see how well she’s growing and is amazed at how well her small intestine is working. It’s always a such a pleasure to see Dr. Crooms. We could never thank him enough for saving our precious little Nora.

Today is our 9th wedding anniversary and we couldn’t have wished for a better gift than for our sweet little Nora. She’s such a happy little girl with so much character who brings so much joy to our lives. Even though she was born with some very unexpected complications she’s still as wonderful as we could have ever imagined. Watching her grow healthier everyday makes our hearts sing!

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Hooray for the Fish!


October 2nd, 2007

We have some great news to share! Nora’s Bilirubin is down to 3.4! It hasn’t been that low since she was three weeks old.

Tomorrow will be seven weeks since Nora started Omegaven with a Bilirubin of 10.7. We are so happy to have found Dr. Puder and Omegaven. Hooray for the fish!

Nora is obviously feeling so much better now that her liver is clearing up. Her appetite has returned with a vengeance and she is as spunky as ever. She’s now waking up in the middle of the night to eat where she used to always sleep all night long. Now that her jaundice is clearing up she has much more energy and is ready to take on the world. :)
On Monday’s weekly visit from Nora’s fabulous nurse Virgina, Nora weighed in at an even 13 pounds. Virginia noticed a big difference in Nora’s color from last week and called it right that her blood work would come back great.

Nora tried some rice cereal mixed with her formula over the weekend and unfortunately it wasn’t very successful. We tried once on Friday and again on Sunday and both times Nora spit it up after just a very small bit. Hopefully it’s just a fluke and we’ll try again later. Rice cereal seems to work well for short gut babies and has been recomended as the best first solid food.

We’re headed up to Boston next month for Nora’s first meeting with Dr. Puder and his team of nutritionists. We are very much looking forward to meeting the doctor that has helped so many short bowel children including our wonderful Nora.

Thanks to all of you for your suggestions on getting more tummy time for Nora! We’ve been alternating between all of the positions and props and Nora is getting more comfortable on her tummy every day. In addition to tummy time, Nora’s favorite hobbies these days are grabbing her toes and trying her best to get them into her mouth, standing…she LOVES standing, taking practice steps while holding on to fingers and she especially loves to read.

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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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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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