Archive for May, 2008

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!


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.


Bump In The Road

May 10th, 2008

Nora has been off of TPN for almost three weeks and her poops have been getting increasingly loose, more frequent and she’s loosing more weight than we are comfortable with. She’s lost a solid pound and depending on when we weigh her, some weigh ins show and additional half to 3/4 pound loss. Obviously without TPN her appetite has increased and she’s been eating more but unfortunately her system doesn’t seem to be agreeing with the increased volume going in. With her stools getting so loose we were starting to wonder if one of her solid foods could be contributing to the problem so we decided to give her only rice and Elecare formula since Thursday. We discussed this with her pediatrician and the pediatric nutritionist at TMH and they both agreed it was a good idea in hopes that the limited diet would thicken and decrease her poops after a day or so and then we would slowly start adding foods back. She seemed to do a little better on Thursday but then yesterday her system really got out of whack from what our best guess would be from too much formula too fast. Around 6pm last night she was extremely tired after a big day at the park and was on the verge of falling asleep when she threw up all of her bottle and more some. Afterwards she was very lethargic and obviously not feeling well. After about 30 minutes she seemed to feel better and was ready to try to go back to sleep when she threw up again. This time she didn’t have any formula left to throw up so it was mostly bile and mucus. Nora has never been much of a puker, even as an infant she spit up less than average, so needless to say we were concerned. All of her vitals were fine and thankfully she fell asleep for the night around 8pm with a very noisy tummy. She awoke at 5:30am this morning with watery diarrhea which continued through the day. Her last poop was at 7:30 this evening and it was her 14th for the day. We talked to her doctor earlier and he advised to just give her Pedialyte for the next 12 hours and see how she does. Thankfully the last few were a little thicker and smaller in volume.

With her poops starting to show a dumping trend something has to improve very soon or our only option will be to put Nora back on TPN. Could we have messed her up by taking away most of her solids or was she headed in this direction anyways? could she have a little tummy bug? could it be her top two teeth coming in giving her diarrhea? The short bowel puzzle is so frustrating with no clear answers and so many variables. It seems that each short bowel has it’s own food tolerance and right food combination and there’s no one thing that works for every person with SBS, not that we’ve heard of anyways. I know Nora can do it, we just have to find what works for her.

Thankfully with all of this going on Nora is still happy and extremely energetic, besides last nights episode. With all this pooping you’d think she wouldn’t have any energy to spare but she’s finding it from somewhere. Her walking is getting better every day. She’s been running around all day long between her pooping spells. Here are some pictures from yesterday’s visit with surprise……….the ducks! :)

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If Montana hadn’t been holding onto her dress she would have taken off after those duckies!

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Another challenge for Nora is her fat absorption. We figured she wasn’t absorbing much fat from her diet with the weight loss and oily residue in her diapers over the last few weeks. Our concern was confirmed when we got the results of her fecal fat test this week. The normal range of fat waste is 0 – 1.9 and Nora’s was 4.8. With so much fat in her poop this tells us that she’s absorbing very little if any fat at all. We’ve been doing a lot of research on ways to add fat to her diet. There are many possibilities out there but the challenge is to find a fat that her system can absorb. We had been planning to add fish oil to her diet but decided not to after her dietitian thought it would be too strong for her system to handle and she recommended Black Current oil instead. After talking to the TMH pediatric nutritionist we’re finally feeling that the right fat supplement for Nora is MCT oils which is the same oil in Elecare. MCT oil can be added to the diet as an additional supplement but we aren’t wanting to add anything new to her diet while she’s having these output issues.

On another note, Nora is still as amazing as ever. Her personality is blossoming daily. She has started blowing kisses and has turned into a little mocking bird. If I hum a tun, clap, stomp my feet, etc. she’ll copy me and is surprisingly good at mocking a tune or a beat. She has added “hat”, “yes”, “kids”, “bath” and her own version of baby “ba” to her vocabulary.

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We added a new section on the top left blog menu of Nora videos. We also added a new SBS blog about a little girl named Hope who is absolutely amazing. She had all but 12 cm of her small intestine removed at birth and wasn’t expected to survive without TPN. Her parents made the decision to treat her at home with natural remedies and herbs and not use TPN even though the doctors only gave her two weeks. Hope is now six months old and thriving. I think this is a very promising and inspirational story and we wish Hope and her parents all the best.


TPN Update

May 2nd, 2008

Twelve days without TPN and Nora is doing great! We were very anxious to see this weeks labs and were then very relieved when they came back looking just as good, if not a little better than her labs from her last week on TPN. She is staying well hydrated and there has only been one day that her blood sugar was hanging out in the low range. The day her blood sugar was concerning was after three days of non-stop action of birthday fun so we chalked it up to Nora being more active and eating and sleeping less than usual from all the excitement because it has since returned to it’s usual 70-80’s range. Nora’s weight has dropped a little bit but that is expected while her body adjusts being off TPN. We will be getting her on an oral fish oil supplement soon to make sure she’s getting enough fat in her diet now that she’s off Omegaven. We’ve been collecting her stools for the past 48 hours for a fecal fat test. Let me tell you there’s nothing much more fun than scrapping poop into a gallon paint can and keeping it in the fridge, I’ll be happy to turn it into the lab today. :)

(Sorry for taking so long to post birthday stuff, I started writing a few posts but never got them up with all that’s been going on but now there are a few back dated posts to get us up to date.)


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