Archive for November, 2007

Lucky Number Seven!


November 28th, 2007

Yesterday was Nora’s seven month birthday, Happy Birthday Nora!! There are many good things to report from the past few days. On Mondays weigh in Nora had gained back 8oz of the 1lb 4oz she had lost over the past couple of weeks! Monday’s lab results are just as exciting, her Bilirubin is 0.5!!! It was the same last week and 0.8 the week before that and I can’t believe I forgot to post those wonderful numbers. Thanks to Omegaven Nora’s Bilirubin was the one thing we haven’t been having to worry about these past few weeks. Then this morning Nora awoke us with a beautiful thick poop! I had never been so happy to wake up to poop, yes, I’m really this excited about poop! :) Her BM’s have been very loose for quite sometime now with little consistency. Even before the two and a half weeks of liquid diarrhea her poops had been pretty loose (which was a symptom of Scarletina that we weren’t aware of at the time). When you’re a parent to a short bowel baby thick poops are always something to celebrate. :)

We usually don’t get our Christmas tree this early but with Nora’s first Christmas approaching we wanted to start the celebration right away. We got our tree Sunday and decorated it Monday evening. Nora thinks the lights are pretty neat. Christmas has always been my favorite holiday but I know that this year will be the best one by far!

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Little Miss Independent…………….Nora has been eating her rice porridge for two weeks now but after the first few days of eating it with a spoon and a bowl we were having to blend it up and put it in her bottle or she wouldn’t eat it. We were confused by her disinterest in eating with a spoon because she had always enjoyed it that way with the dried rice cereal. We would let her play in it a bit and hold the spoon but since Nora hadn’t been feeling well I guess my over-nurturing hormone kicked in and I was just trying to hold everything for her and put it in her mouth. Well thanks to Grammy’s visit yesterday we figured out that me holding the spoon for her was the entire problem! As soon as she gave Nora the spoon she was right back into being excited about eating it that way again! Duhh me! So she ate her rice porridge lunch out of a spoon again today like a big girl. She made quite a mess and I’m not sure how much really made it into her mouth but it was all good. :)

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Nora The Ham


November 24th, 2007

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Happy Thanksgiving!


November 24th, 2007

We certainly have a lot to be thankful for. Nora has truly taught us how to be thankful and appreciative for all of the wonderful things in life, like life itself!

Nora sitting at the dinner table awaiting her first Thanksgiving! “Hey where’s the turkey?”

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Mmm Elecare…..she pretended it was turkey flavored. :)

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The past few weeks have been very hard on Nora but on Thanksgiving day she finally turned a corner and really started feeling better. Since the rash and all of the troubles that followed started almost three weeks ago, Nora had not been her usual chatty self. She had been very quiet and low energy. But on Thanksgiving day she started talking and hamming it up to show us that she’s back on track. We’re so happy to have our beaming Nora girl back!

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With all of the diarrhea Nora was having she developed Colitis and begin having bloody stools last Friday (11/16). I guess this is the pattern we should expect every time she has to have antibiotics, orally or intravenous. It was nerve wracking to see but this happened the last two times she had antibiotics so at least this was something we had dealt with before. She had 7 days of bloody stools and hopefully it has subsided for good now. Her poops have been blood free since Thursday afternoon (11/22). With all of the pooping and decreased feedings Nora has lost 1lb 4oz in the past two weeks. :( She had been on 22 calorie Elecare for months now but she had to go back to 20 calorie Elecare. Now that her system is getting back on track and the bloody poops are gone we’ll begin tapering her back up to 22 calorie in the next few days. There has been one change in her diet in the right direction though. We started feeding Nora fresh rice porridge instead of powdered rice cereal last week following the recommendation of the Chinese acupuncturist and nutritionist Dr. Min Tian. Dr. Tian has been a great asset to many members of our family for years now. She is truly amazing, western medicine may not understand how she does what she does but it works. She said that dried boxed cereals tend to grow mold very easily and also there’s nothing better than the real thing. We started Nora on sweet Sushi rice and she seems to really like it. We slow boil it for 1-2 hours, or however long it takes to get it nice and mushy, using one part rice to ten parts water and then mix it with her formula. She’s been eating fresh rice porridge for almost two weeks now. Once her tummy is settled for a bit we are looking forward to begin introducing more new things to Nora’s diet.

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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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