Archive for the 'Nora Medical Updates' Category

The Return of Super Nora!


July 2nd, 2008

What a difference a week makes! Nora has responded extremely well to being back on TPN, she is obviously feeling much better and like herself again. In just one week she has made a tremendous turn around with her weight and energy on only 10ml/hr (she was on 20ml/hr before weaning off TPN) and her labs this week showed a big improvement. For the first two days Nora was back on TPN she slept a LOT more than usual. We felt (as well has her doctor did) that her body was just finally catching up on much needed rest now that it wasn’t having to fight for nutrition. But we were starting to get quite concerned on the second evening when she fell asleep at 6pm after taking three naps during the day. We kept thinking isn’t TPN supposed to have the opposite effect? Thankfully she awoke bright eyed and bushy tailed last Wednesday morning and hasn’t slowed down since. She is certainly keeping us on our toes chasing after her with the portable IV pump and bag. She still has a while to go before she can carry the pump in her backpack so hopefully the coiled IV tubing will be in soon. Thanks to some other SBS parents we learned of an IV line extension which expands like a telephone cord. This should give her a lot more wiggle room from having to stay so close to the pump and allow for the line to give if it is pulled.

Nora has adjusted to being back on IV’s better than expected. With having two months of freedom under her belt from tape dressings and lines we weren’t sure what to expect. She has grown up so much in these past two months. She is no longer a baby but a little girl who makes her baby dolls dance, has meow talks with the kitty cats and has pretend tea parties. Besides protesting to being tied to the IV pole in the mornings while waiting for her Omegaven to finish she has been a very good girl about not messing with her lines and port.

Here are some long overdue pictures from the past few weeks.

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june-19-2008-001.jpg Nora loves her books.

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She knows a good thing when she sees it!

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Why did that cat run away? I only pulled his tail…. :)

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She’s ready for her piano lessons Pappy! (a.k.a. Grandaddy-o)

If some of you are wondering why Nora’s neck vein is so pronounced in the last picture, that is where her IV port catheter is implanted.

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TPN and Omegaven Again


June 23rd, 2008

Well we made it eight weeks to the day TPN and Omegaven free but we lost the battle with SBS…..this time.

Nora has been up and down so much the past 3 weeks and we think it finally caught up to her at the end of last week. On Thursday she became extremely lethargic and it got a bit scary. She seemed very, very sick so we requested for labs to be drawn and her lab numbers had went to crap showing that she was deficient in some nutrients and a low blood carbon dioxide level. So we made plans to hook her up to TPN the next day but as she usually does she made a night and day turn around Friday morning as soon as she heard the word TPN. After talking with her doctors we decided to wait it out over the weekend to give her one last chance to pull through on her own. Today she seems to be feeling much better (still waiting on today’s labs) but she lost all of the weight she had gained back from the past few weeks so we felt at this point we had no choice to but put her back on TPN to get her weight back up and give her some reserves. We are hoping this will be very short term and we can have her back off and line free in a month or less. We have learned a lot about how Nora processes food since she’s been off TPN and feel better prepared to take on the challenge of her nutrition the next time around.

So far today though Nora has done great with her IV’s and is being a very good girl (as usual) so we are hoping this will just be a smooth process and Nora will grow quickly. We have had a lot of IV anxiety because Nora is now a walking toddler whereas when she came off TPN two months ago she wasn’t yet walking. She had just gotten an IV backpack before we discontinued TPN last time so hopefully she will build her strength quickly and be able to wear it during the day. The backpack will be a lot safer and give her the independence to walk around without one of us having to follow her around with the pump.

As much as we hate that Nora has to rely on IV’s for her nutrition we are very thankful to have an alternative way to keep her healthy. We have a love/hate relationship with TPN, even with all of it’s horrible side effects it is what kept her alive at the beginning. And we are so thankful to have found Omegaven so we don’t have to worry about liver damage from the TPN. So for now we are watering our little Nora flower and will watch her grow.

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Happy Homecoming Anniversary!


June 12th, 2008

Today is the anniversary of Nora’s first homecoming from the hospital when she was 7 weeks old. We know that we were very fortunate for her being able to come home so young for a baby with her issues but seven weeks was long enough for us and we were so happy to finally have her home. Our first night home with Nora was full of IV anxiety, alarming pumps with air in the TPN line and a defective feeding pump. Thankfully Nora is doing much better now and we can celebrate this day TPN free.

Nora has made a huge turn around since we stopped giving her oils and the digestive enzymes. Her weight is staying up and her stools have decreased quite a bit. Her poops are a littler looser than we’d like but 3-4 a day is much better than 8-10. At the end of last week it was looking certain that Nora would need to go back on TPN. Thankfully waiting out the weekend paid off and gave her the time she needed. Her weight is up almost a pound and Monday’s labs came back looking good. Her little chubby chin is back and she’s looking like the little Nora we know. She was looking way too skinny there for a few days last week. We know that she will probably always be on the slim side without TPN but as long as we can keep her from developing any deficiencies then we are going to take our best shot at focusing all of our energy to keeping her in balance and keeping her off TPN.

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Hanging In There


June 7th, 2008

Nora’s weight has been on quite the roller coaster ride the past couple of weeks. She’s come very close to going back on TPN but then improves at the last minute giving us hope that she’ll keep going up on her own. Her loose stools have continued to be a problem off and on ever since she had a tummy bug a few weeks ago. They were really loose and frequent this week and she dropped down below 15lbs for a couple of days. Not good. :( Thankfully she’s been hanging around 15 and 1/2 pounds for the past few days since her poopies have miraculously gotten better than they’ve been in a long time. Her progress this weekend and Monday’s labs will determine if she’ll go back on TPN this coming week. We are very hopeful that she can pull it off now that she’s not pooping everything out and we are taking a new approach to her diet.

We’ve been looking back at her daily logs and realized that we started adding oil to her diet shortly after her stomach episode and then added digestive enzymes to her diet soon after that. Her stools thickened at first but only for a few days. So on Thursday we cut everything out of her diet again and had her on Elecare and Pedialyte only. Her poops calmed down and now we’re starting back with the basics. She’s eating her rice again and had some avocado today and didn’t poop it out like she had been last week so that’s a very good sign that her system is back on track, now if we can just keep it that way. We wont be adding the oil or enzymes back into her diet but instead are going to try a fat free diet of mostly vegetables. Thanks to a new short bowel parent we have recently been talking to we are feeling hopeful that a fat free diet will help with her stools. And better stools will hopefully lead to better weight gain. This child is now almost 3 years old and he was in the same spot where Nora is at the age of 1. He wasn’t absorbing fats so they were trying the same as we’ve been doing, adding easily digestible oils and fats with the same results, more loose stools and losing weight. So their doctor suggested to go with what can be absorbed instead of fighting against what his body doesn’t want to do. This was very successful for him so we are hoping that Nora will have the same response.

On the non-medical front Nora’s grandmother NeeNee, my mom (Sarah), got married last weekend. CONGRATULATIONS NeeNee and Papaw Don!! My sister and her family came down from Kentucky for the wedding and Nora finally got to meet her only first cousin Marin. We had been very anxious to get them together and of course they were as cute as we could have ever imagined. :) Nora also got to meet her cousin Sophia who we were super excited to meet. Nora and Marin were both flower girls in NeeNee’s wedding. I don’t have any wedding pictures yet, since I was in the wedding myself I didn’t have the camera to paparazzi the girls with but here are some of them playing very sweetly together.

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Marin was a very good teacher at showing Nora how to be a good mommy to her baby doll. :)

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What sweet sharing artists!

WE LOVE YOU COUSIN MARIN AND CAN’T WAIT TO SEE YOU AGAIN!

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Go Nora Go!


May 22nd, 2008

Nora’s appointment at Shands went very well on Tuesday. The GI doctor, Dr. Andres, was very pleased with her condition considering all that’s happened since stopping TPN….. teething, getting a stomach bug and starting to walk which is burning off a lot of calories. He thinks Nora has a good chance of gaining her weight back but if she looses any more weight than he would want to try another g-tube before going back on TPN. We were extremely happy to hear this as we were expecting that they would suggest TPN right away. Even though Nora has lost a good bit of her fat she hasn’t lost an unhealthy amount by any means and the fact that she’s still developing mentally at an impressive rate is a very good sign that she’s absorbing nutrients. Her labs are still looking good and aren’t showing any signs of deficiencies.

We started Nora on coconut oil today in hopes that it will help her gain weight. Coconut oil is a natural source of MCT oil (medium chain triglyceride) which is an easily digestible fat for people with malabsorption issues, it is the same type of fat that is in Elecare formula. She seemed to tolerate it well and her stools were thicker today than they have been in weeks. We are focusing on getting Nora on a more varied solid food diet and less Elecare. Her system seems to do better with new foods and variety. We’re taking Nora to a new nutritionist tomorrow to get yet one more opinion on what she should eat. With so many different doctors and specialists having such different suggestions on what foods to try with Nora it makes us realize the best thing we can do is gather as much information as we can and then try to make the best decision based on all the options.

Nora continues to amaze us everyday with her sweetness and growing personality. She loves to snuggle and show her affection. She is quite the silly goose and already has a big sense of humor. She brings so much happiness that it makes all the challenges worth while. Here is the silly sweetie playing with her tiara in her one red shoe.

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Is TPN to be or not to be?


May 19th, 2008

We’re taking Nora to Shands Pediatric GI specialists in Gainesville tomorrow for them to assess her weight loss since coming off TPN four weeks ago. Thankfully her system seems to have gotten back on track after what seems to have been a stomach bug last weekend and she hasn’t lost anymore weight. We are anxious to hear what they think the next step should be. We want to give Nora every chance to maintain on her own but we don’t want to put her at any nutritional risk. We don’t feel that she’s in a deficit yet and think that she has a good chance to gain her weight back. Especially now that she’s eating solids again and her poops have continued to improve even with bumping her Elecare calories up to 24cal from 22. Both Nora’s local pediatrician and her nurse think she has room to try to make up the weight on her own but if she doesn’t start bulking up soon she’ll need to go back on TPN. We hope her episode didn’t set her back too far but if it did and she has to go back on TPN, as much as we don’t want it for her it will be ok and at least she had a chance to enjoy lots of splish splash baths and a little pool time.

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Here is Nora earlier today enjoying her first pool experience in the back yard, she had a blast!

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Bouncing Back


May 12th, 2008

Thankfully Nora is recovering very well from her weekend tummy episode. She’s back to eating her formula after a 12 hour break with Pedialyte only, her poopies have slowed down and have more consistency than they have in the past couple of weeks. We already got the results of this mornings blood draw and were very happy to see that her electrolytes are in balance after having so much diarrhea and vomiting. We were also very encouraged with her weight this morning. Nora’s nurse Virginia was very pleased to see how good she looked this morning after hearing how sick she was over the weekend. We’re going to go another day of just giving her Elecare and will reintroduce solids on Wednesday as long as she continues to do well. Her follow up appointment with Shands Peds GI has been moved up to next week to address the weight she’s lost since going off TPN. Now that her system seems to be getting back on track hopefully she’ll gain back some of  the weight she lost and more some.

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