Archive for the 'Nora Medical Updates' Category

Scarletina


November 6th, 2007

Well we didn’t make it out of town yesterday. Nora has had a rash for about 8 weeks now that’s come and gone and had originally been diagnosed as eczema and so we had been treating it as such (and then later mis-diagnosed again as yeast). But on Sunday night it flared up very bad and it was obviously very uncomfortable to her so we took her to the doc yesterday and even though the culture results haven’t come back yet she has been diagnosed with Scarletina. Scarletina is a strep bacterial skin infection, a derivative from the word Scarlet Fever. Yes, yikes, sounds very scary but Nora only has the infection on her skin, no strep throat, fever or any other symptoms thankfully. The bacteria is one of those common bugs that floats around in the environment that most of us come in contact with but the immune system usually fights it off unless the immune system is compromised or you’re a little baby with an immune system that is still developing. Nora’s poor skin is a wreck, very red, dry, peeling, bumpy. If you Google Scarletina her rash fits the description to a T. She was prescribed Amoxicillin and the rash responded right away after only the first dose. Even though she is now on the mend, strapping her in a car seat for 3 days with a very uncomfortable rash covering her torso, down her legs and up to her face as well as taking her up north with her immune system already fighting is not what we need to do. So we are rescheduling with Boston and thankfully we weren’t taking her up there for a procedure or Omegaven. Now at least we know what it takes to get Nora’s supplies ready for a long road trip (a lot) and we’ll be better organized when the time comes to go again.

Here are pictures of Nora’s ouchy skin. It is especially worse under her port dressing where the skin never gets to breathe. (Nora’s diaper is brownish color because it is a non-chlorine diaper, it’s not dirty) :)

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Nora’s doctor thinks that the bacteria has been harboring around her g-tube button where the skin stays moist and warm. Now that I think back on how the rash has come and gone it makes total sense. Every time it would clear up, the g-tube area would always be the last to get better. I always contributed it to us keeping gauze around the button to absorb tummy leakage therefore also absorbing the ointments but seems like that wasn’t the case after all.

We hated to cancel our appointment in Boston and for sweet Nora to have this going on but at least it flared up the night before we were supposed to leave instead of while were were on the road. The thought of having to take her to a strange doctor between here and there would have been terrible. Things always happen for a reason.

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Nora’s Big Week


November 4th, 2007

This past week was a very big week with a lot of milestones for Nora. She turned 6 months old last Saturday! She celebrated the day with snuggles from the grandparents and a lot of smiles. We can’t believe she’s already half a year old!

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Nora received the best present of all last week, the gift of a healthy liver. Her Bilirubin total was 1.0 from Monday’s labs!!!!! We’ve been waiting for this moment and are so happy it’s really happening. Thank you Dr. Puder and Omegaven!!!!!!!

Happy Halloween!

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Nora loved playing with her little pumpkins on Halloween morning. Then she transformed into Super Nora for her first Halloween!

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Even super heros get tired sometimes………..

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Nora did not go without a treat for her first Halloween, she discovered that she REALLY likes rice cereal! We have been trying little bits of rice cereal for the past month or so and Nora has not liked it at all. The first bite 4 weeks ago made her gag and spit up then every time after that we tried she would spit it out and make this face like “You guys really expect me to eat that?!?” The docs said to keep trying and she’ll take it when she’s ready. Do you think she looks ready?

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Before she even had the first bite she tried to dive into the bowl. Since it was the first time that she really ate some we only gave her a few bites to make sure she tolerated it ok but she would have been happy to eat more. We’ve been giving her a few more bites each day and she is tolerating the rice cereal very well.

We’re getting ready to hit the road tomorrow to head up to Boston to finally meet the short bowel team and Dr. Puder. We are very excited to meet them and to see what their advice is for Nora’s nutrition and TPN management. It will be a long trip but we decided to drive instead of taking the risk of putting Nora on a plane during cold season. The GI docs in Boston want to see films of Nora’s GI tract so we stopped by Nora’s old stomping grounds at TMH to pick up the films and paid a visit to her buddies in the NICU. It was great to see Nora’s wonderful nurses and we’re sorry to the ones we missed. We can’t thank all of them enough for taking such wonderful care of our baby and showing her so much love.

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Nora’s Bilirubin = 1.3!


October 26th, 2007

Only 0.1 to go for Nora’s bilirubin to be in the normal range! The rest of her labs looked great this week too and she now weighs 13lbs 13 oz. She’s doing so well that there’s not much to report this week except for that life is grand and Nora is the light of our life. :) Tomorrow will be Nora’s 6 month b-day and we are very much looking forward to celebrating!

Nora had a visit with her great grandparents yesterday and even though it was way past her nap time she still managed to be charming and flirt it up with Mama and Daddy Tom.

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This past week we had a quite a few parents contact us from all around the country about Omegaven and general Short Bowel issues. Talking to them takes me back to the place where Nora was just a few months ago when things were so hard. My heart goes out to all of these parents and we wish all of them the best of luck with their little angels. Short Bowel babies are amazing and I’m so glad that these parents can gain hope and strength from Nora’s progress just as we did, and still do, from Ellie’s blog. I was so happy to hear from a mom in Oregon that her insurance is going to cover Omegaven for her little baby boy after her insurance case manager read Ellie and Nora’s blogs. So for any of you out there who are struggling to get Omegaven in your home town please feel free to share Nora’s story in your case. The word about Omegaven is spreading and more and more babies are being saved from this wonderful gift from nature.

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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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