Archive for the 'Nora Medical Updates' Category

Bye Bye Button!


January 30th, 2008

Nora had her g-tube button removed a week ago yesterday. Wow, I never thought we’d be saying that before her first birthday or any birthday for that matter. She is doing great and the hole in her tummy is healing amazingly well. The actual removal of the button wasn’t very fun for sweet Nora (because she had a Bard button that is kind of like an anchor instead of a catheter) but she was sore for only about a day and a half and her tummy is obviously feeling better than ever. She has never slept on her tummy but the past two mornings we’ve awoken to find her snoozing away on her tum-tum. It’s still crazy to me that they just pull the button out and don’t put any stitches or anything to close the hole going from her skin straight into her stomach. Apparently the stomach heals very quickly and only 15% of people have to go back for a procedure to close it if it hasn’t closed by itself after 6-8 weeks. The hole is still leaking a bit but the leakage is minimal and we’ve only had to keep a bandaid on it the past few days instead of gauze.

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Nora had quite a time playing with the table paper and checking out the digestive system charts in Dr. Crooms office while we were waiting for him to come in and take out her button.

We are very excited about Nora’s progress with oral feedings and weight gain! Her little intestine must be growing, adapting, or both because something amazing certainly has happened for her to be able to process so much orally. She’s eating 106ml bottles of her Elecare formula about every 2 hours and eating her solids twice a day, which we will be moving up to 3 times a day starting today. She’s still loving her squash and rice. She’s had butternut and delicata squash, and sweet white rice and short grain brown rice. I’ve been a little hesitant to move on to the next veggie, sweet potato, just because of the gas factor. But we’re going to go for it today!

The solids have definitely made a noticeable difference in her weight, last week she was up to 15lb 7oz (a 8 oz gain from the previous week) and this week she’s an even 16lbs! So now the next step is to start tapering down her TPN. Her doc has given to green light to lower her rate per hour, she’s currently at 20ml/hr and we’ll drop 2ml at a time every few days as long as her blood sugar stays good. And then once she’s down to around 10ml/hr we’ll start dropping hours, yay! Hopefully by her one year b-day she’ll have a good amount of free time during the day off the IV’s.

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Our cute little lioness…..these were taken the day before Nora had her button taken out. As you can see in the second one she had to play with it one last time and give me the look that says “Oh this is what you don’t want me to play with? Are you sure you don’t want me to open it for you?”

:)

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Nora loves her squash!


January 16th, 2008

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Nora ate her first vegetable 10 days ago, butternut squash – yummy!! She has handled it very well and it seems to be doing her system good. We bake it and then blend it with her rice porridge and she loves it. We had been debating what Nora’s next food should be after the rice for a while. We got a lot of different opinions and were crossing our fingers that the new food would agree with her short bowel. By the looks of her poopies she is digesting it wonderfully. The extra solids have been great for Nora’s weight, she’s at an all time high of 14lbs 15oz as of Monday’s weigh in!

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Nora had a great visit with with Dr. Crooms on Tuesday, the surgeon who performed both of Nora’s surgeries and whom we will forever be thankful to for saving our precious little sweetheart. I can’t help but mention what a wonderful man Dr. Crooms is every time I talk about him. His surgical skills are amazing but his heart is even more so. He told us that he keeps a picture of Nora and him that we took on his mantel and looks at it everyday to remind himself that miracles do happen. We met with him to discuss removing Nora’s g-tube button since she has been eating solely by mouth since mid July. We have always been told by every doctor we’ve met with that if she didn’t need to use it by 6 months to 1 year of age than it would be safe to take it out. Nora is 10 days shy of her 9 month birthday and we’re feeling that the pros outweigh the cons of taking it out at this point. Of course there is always that big IF she ever did get very sick and need it again than that would mean another surgery. At this point the button is being used as an exit for her food rather than entry, by accident of course. It opens very easily and Nora’s little fingers are quick to open it and before you know it a bottles worth of formula will leak out. So with Dr. Crooms advice to take it out that made us feel comfortable with making the decision to do so and will take her back next week to have it removed.

On a last note, Nora has learned to wave hi and bye, clap and give high 5’s in the past week. We have been working on waving for a little while and once she got it clapping and high 5ing came soon after. Now she is an expert clapper and claps when she sees or hears about something or someone she likes. Especially when she sees her favorite kitty outside. But not just any kitty, she is very particular and only claps when she sees her favorite one out of the three outside kitties we have. She’s also been saying Dada a lot, sometimes entire conversations of Dada! All of a sudden our little baby is turning into a little girl and picking up new skills by the day.

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Practicing her waving in the carseat mirror on the way home from Dr. Crooms.

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She also loves to tear it up in her walker, or we call it her car and boy is she speedy!

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Happy New Year!


January 5th, 2008

Happy is indeed the word to start off the new year! Nora ended 2007 far above and beyond how she entered it earlier in the year on April 27. We are so happy with how she has progressed and are feeling very hopeful for her continued improvement in the year ahead.

Nora’s first day in 2007

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Nora’s last day in 2007

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Our shining star!

It brings back a lot of emotions looking at Nora’s first days, sad but also happy to see how far she has come. She continues to amaze us everyday with her strength and happy spirit. She can be quite the silly goose and brings us a lot of laughs with her growing personality.

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Nora’s first tooth finally broke through on her 8 month birthday on 12/27. Or at least that’s the first day she let us get a peek at it. I’ve nicknamed her Percy lately because she’s always holding her little mouth tight lipped rubbing her bottom lip on her new tooth. The rest of the time she’s feeling it with her fingers.

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Teething has not been good for Nora’s appetite. She goes through times of not wanting to eat very much when she’s in the midst of a teething spell. We know this is normal for all babies but for Nora it can be a set back when every ounce counts. Her weight has been fluctuating the past few weeks with her teething. She’s yet to make it above 14lb 10oz. She’s gotten there twice but had lost 8oz on last week’s weigh in. Thankfully her appetite seems to be picking back up this week and we’re expecting a gain when she’s weighed again on Monday. Overall Nora’s feedings are going great. She’s eating 106ml (3.5 oz) bottles of 22 calorie Elecare every 2-3 hours and eating her rice 2 times a day (when she’s not teething too bad). We’re wondering if she’s getting tired of the rice and is ready to expand her diet. We talked to her doctor last week about her diet and plan to start introducing new foods very soon. Homemade organic squash is most likely next on the menu.

Nora’s first Christmas was great. She wasn’t quite sure what to think of me showing how to tear into the gifts but she certainly enjoyed playing with the tissue paper. I’m sure by next Christmas she’ll have the gift opening thing down pat.

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It was such a special time of year to have our precious little Nora to celebrate. She was by far the best gift under the tree. :)

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Nora’s Big Girl Highchair


December 13th, 2007

The last two weeks have been great for Nora. Sorry for the lack of posts, we’ve been busy playing and having too much fun! :)

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She’s bounced back from her setback last month and as of Monday’s weigh in she was up to 14lb 4oz. Just 6 more ounces to go to get her back to her pre-anti biotic tummy episode weight. She’s eating great, full of energy and is just about to start crawling. Today she was pulling both of her knees under her tummy and pushing them back like a little inch worm. Her vocabulary is developing daily. It seems like every morning she wakes up saying new sounds and last week she said Mama!! The physical therapist from the Early Steps program came by for a follow up visit from Nora’s initial assessment a few months back and she was very impressed with Nora’s cognitive skills and coordination. No developmental delays here, Nora is right on track for a 7 month old and that was even while she was still half asleep because we had to wake her up from her nap for the appointment.

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Nora is all about eating these days. She’s eating her rice porridge twice a day and if she sees anyone else eating out of a bowl she thinks it’s for her. Montana was eating popcorn the other night and she practically dove into the bowl!

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We were considering expanding her diet beyond Elecare formula and rice porridge soon but since she’s doing so well at the moment we don’t want to rock the boat and will stay on this course for now. Tuesday evening marked a very important milestone for Nora, she got a big girl highchair!!!

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(yep, we joined the short gut rain forest highchair club) :)

“Hey what’s this on my bib?”

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“mmm rice porridge is even yummier straight off the bib!”

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Nora getting a highchair is huge for us. In the weeks and months after she was born we were preparing ourselves for the mindset that she may never be able to eat orally or if she did it wouldn’t be for a long time. Everything is put in perspective when the daily things that we take for granted are suddenly not there. So when we are given these gifts it makes the experience that much more sweeter. So make a mess my darling Nora playing in your rice porridge and have fun with the eating experience because mommy will enjoy cleaning up every bit of it!

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Nora is ready for Christmas!

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We were standing by the tree the other night and she zoned right into her ornament as if she knew it’s just for her. And then of course she wanted to lick it like she wants to do to everything she can get her hands on these days.

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Watch out Rudolph, you have some competition for the cutest reindeer this year.

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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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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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