The Domino Effect


November 15th, 2007

Nora has had a rough week since our last post but she is finally feeling much better now. Even though the oral antibiotics were good for the rash they were not at all kind to her tummy. Late Thursday afternoon Nora started vomiting bile in large quantities. We called her doc and he said to not give her anymore antibiotics until he could see her the next morning. Nora’s rash had improved dramatically and was barely viable by Friday morning so the plan was to see how she did over the weekend and hope that she had gotten enough antibiotics in her system to kill the Scarletina. Her skin did great all weekend until Sunday night the rash started to reappear a bit. Her tummy on the other hand had a very rough weekend. Thankfully the vomiting did not continue after the antibiotics were stopped but then diarrhea set in and Nora was pooping 10-12 times a day on Friday, Saturday and Sunday. Her tummy was very upset and she was obviously very confused on why we weren’t feeding her and was not a bit happy about it. Every time she ate it would go straight through her and her stool was either clear or white. This made for a very worrisome weekend for Montana and I. There were times she was feeling so badly and screaming for so long that we almost took her to the hospital wondering if something more than a very upset tummy was the issue. We kept in touch with her doc over the weekend as well as Dr. Patterson, TMH NICU pediatrician, which gave us confidence to keep treating her at home on limited food and Pedialyte. Her stool is still pretty loose and frequent but is much improved and slowing down from the weekend and beginning of the week. On Monday we took Nora back to the doctor and he added some extra labs for Monday’s weekly blood draw to include a CBC, SED rate, ASO Titer and a blood culture and advised to keep Nora off antibiotics until some of the results came in as long as the rash stayed under control. The first results came in Tuesday morning and were very encouraging. The CBC and SED rate were both in the normal ranges which means that her body wasn’t showing signs of fighting infection. The ASO Titer came back yesterday with encouraging results as well, that is a test specifically for Strep bacteria and it was negative. As of this afternoon the blood culture had not grown anything. The rash flared up a bit on Monday but has pretty much completely faded away. Now we are dealing with Nora’s healing itchy skin which is causing a problem around her port. Where the rash was, which was pretty much all over her body, the skin is very dry and sloughing off so her tape dressing was not wanting to stick to her skin when her port needle was changed Monday afternoon. This stuff is sticky as all heck but the skin in that area was so funky the dressing started to peel around the edges immediately. Since the skin under the port dressing never gets to breath that compounds the uncomfortableness of it all so yesterday Nora started pulling and scratching at her port very aggressively. She is one strong little girl and we were having to pry her little fingers off of her port. Thank God for Fabrifoam, this breathable skin wrap, or Nora could have gotten herself in serious trouble. So now her chest is wrapped up so she can’t get to her port and dressing.

One good thing out of all this is that even though the antibiotics caused a lot of issues for Nora, since her skin responded to them so quickly that shows that her short gut is absorbing. Nora sure is one tough cookie and we are so glad she’s feeling better now. Even though things could have been much, much worse than a rash and diarrhea this last week has reiterated how easily Nora’s fragile system can get thrown off track and cause a series of issues and worries. Nora lost 8oz last week but she’s on the mend now and we’re focusing on keeping her protected and getting back to Super Nora strength. :)

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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 at the Pumpkin Patch


October 26th, 2007

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A little punkin just for our little punkin. :)

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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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