Archive for the 'Nora Medical Updates' Category

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.)


Nora’s First Birthday

April 27th, 2008


Today is Nora’s first birthday! The day was absolutely perfect, rain and all. We celebrated Nora’s big day at the Lichgate Cottage which is a beautiful piece of preserved land that was saved by a wonderful group of local people. It was the perfect place to celebrate since both Lichgate and Nora were both given second chances. We could never have hoped for a more joyous day. This time last year it was a distant dream to be in such a happy place on Nora’s first birthday, especially TPN free. Nora has been off TPN for seven days and is doing great and she is more active than ever.

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Lichgate Cottage


Nora napping with Grammy inside the cottage before the party.


Nora rested up and changed into her party dress is ready for her grand entrance! Thankfully she was not apprehensive at all about going back into the cottage full of people after having gotten quite upset when she awoke from her nap in a room with lots of people.

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Nora walked around happily greeting her guests before heading outside during a short break in the rain for cake and presents under the oak tree. (Thankfully Nora didn’t know the difference between birthday cake and rice and squash.) :)

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Nora was surrounded by many friends and family on her big day. The day was extra special with Dr. Crooms there to celebrate. We can never thank him enough for giving Nora the chance to show us that her life force is stronger than medical logic. We are so fortunate to be surrounded by so much love and support from near and far. The love surrounding Nora has allowed her to stay strong and beat the odds. Thank you to everyone who has shown our famiy so much love and support during Nora’s first year.

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Party Time!

April 26th, 2008

Tomorrow is Nora’s first birthday! We are super excited about the big celebration. Nora had her first retail experience this week when she went along to the party store to stock up on birthday supplies. I was a little nervous she’d have sensory overload with never being in a big store before, especially a store with all kinds of flashy stuff but she did great even with being tired and in need of a nap. She took it all in and pointed out lots of neat stuff and was very excited to see another little baby whom she waved at until he walked out the door. Here are some pictures of Nora’s first big shopping adventure.

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TPN free for 36 hours!

April 22nd, 2008

Just wanted to make a quick post to let everyone know the WONDERFUL news, Nora has been line free since 8:30 yesterday morning!! She has been doing great and her blood sugar is staying stable. And she had a 9oz gain from last week, woo hoo! She hasn’t had that big of a weight jump in a while but I’m sure she’s just making up for lost time as she has been shoveling down the food since she’s been getting less TPN. Her labs came back from yesterday looking good and we’re hoping they’ll look just as good next Monday after being off TPN for a week. We’re checking her glucose every 2-3 hours and setting the alarm checking it through the night. She’s such a good girl, she has never resisted or fussed about getting her finger pricked to check her blood sugar but we’ve been checking it so often lately that when I tell her it’s time to check her “finger number” she holds up her pointer finger and gives me her hand. Thank you Nora. :)

Montana and I have been floating on cloud 9 and worrying that she’ll be ok without TPN all at the same time. We keep thinking that we need to lay out her TPN to mix. Waking up this morning I had to double check that she really didn’t have a line connected to her. Nora is obviously enjoying the freedom to romp around without constantly getting tangled up her line. Hopefully this freedom will last. My gut (no pun intended) tells me it will even though it’s hard to believe. We’ll post more throughout the week with Nora’s progress during this monumental birthday week. :)


3 more days of TPN?!?

April 19th, 2008

Nora has been doing great with weaning off the TPN. She went down to 5ml/hr on Monday after having good labs and a weight gain from the week before. 5ml/hr is a very low dose of TPN and she is still thriving and keeping her weight. Virginia brought the scale by yesterday and she’s holding tight at 17lbs 2oz after being on the lowest rate for five days. Nora’s blood sugar has been very stable so unless this coming Monday’s labs show a surprise Nora will be off TPN completely next week. What a great 1st birthday present that would be with Nora’s big day coming up next Sunday!

It is so very exciting to be a week away from her birthday. I’ve been thinking back on her birth a lot recently and what a world away we are from where we were then. Going up to the NICU at TMH last week to deliver Nora’s b-day invitations brought back many memories of Nora’s beginning. Montana and I knew this day would come even when we were told her chance was less than 1% but we never dreamed our little Super Nora would possibly be off TPN before turning one! Either way, with or without TPN we are certainly looking forward to celebrating the big day. :)

On Thursday Nora had a follow up appointment from the removal of her g-tube button with the wonderful surgeon Dr. Crooms. For those of you not familiar with his name he is the man who saved our little Nora on the day she was born. He has a very special connection to Nora and we will forever hold him close in our hearts. We discussed the plan from Shands to get Nora off TPN by reducing the rate instead of dropping hours. He thought that she was ready to come off it and said that he didn’t think that one way was better over the other when tapering off TPN. We also discussed the amount of small bowel she had left after he removed 95% of it when she was just a few hours old. We knew that he was able to piece together very small amounts of each the absorption parts with a combined total of 4.5cm but we didn’t ever know which parts she had the most of. So now we know that the majority of small bowel she has is the duodenum, she only has a “sliver” of jejunum and a very small amount of ileum. Her small intestine must have grown immensely in the past year or adapted extremely well or both for her to be able to process so much orally. There is no way to know how much her intestine has grown with out opening her up and hopefully that wont ever need to happen again. So we’ll just know that somehow, someway what she has is working and we’ll be very thankful for it.

On the non-medical front Nora is chugging along at great speed. She’s certainly not a little baby anymore and is quickly turning into a big girl. Her personality is blooming by the day and she doesn’t miss a thing. She loves to be outside and especially loves her ducks up at Lake Ella, feeding them bread is extra fun. In the past few days she’s replaced all of the words she knows with “duck”. I thought a visit with them would solve it but she’s still stuck on duck repeat for the moment. :)


Here they come!

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Hello big soft shell turtle!


Relaxing on the blanket…….

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Weaning off TPN

April 13th, 2008

For the last week Nora has been on the lowest TPN rate since she was born. Her rate was dropped to 10ml/hr last Monday (4/7) for 23 hours a day. Nora has been loving her daily hour break and usually uses it to run laps in her play pin like a track star and lunging herself from one end to another hands free. Of course she does this when she’s connected to the TPN as well but is constantly having to stop to get untangled from her line. We’re putting her pump backpack on her when the TPN bag is almost empty and at it’s lightest but that’s only for a short bit everyday. It will be so nice when she can wear her backpack all the time or even better when she wont need to be connected at all!

This next week will be a big one in determining if we can stay on the plan from the Shands Pediatric GI docs to have her off TPN completely in just one more week. As long as she hasn’t lost a significant amount of weight at her weigh in tomorrow, which we aren’t expecting, then her rate will be dropped to 5ml/hr and if she does well at that rate for the next week then she will be taken off TPN completely for a week and then we’ll go from there. Even if she has to go back on it we will make the most of her week break and love every line free minute of it!

Her blood sugar has been doing great at the lower rate and her appetite is definitely increasing so she’s showing some very promising signs. We’ve been working on weaning her off TPN since the beginning of the year but at a much slower pace and with the hope of her being off in months instead of weeks. But when the GI docs saw how great she’s doing with their own eyes and saw her daily intake logs they felt very optimistic about Nora being able to maintain her weight and nutrition by oral feedings. She has been eating so well by mouth that they think she’s getting enough calories from food as long as she’s absorbing them. They gave us a target amount of formula for her to get everyday along with her 3 solid meals a day. They want her to get in 20oz (600ml) of 22 calorie Elecare formula a day which hasn’t been a problem. Some days she eats as much as 30oz a day of her formula.

Which leads us to the subject of foods. Nora is now eating rice porridge, squash, avocado (her new favorite) and organic chicken broth which we mix with her rice, just like a good ol’ southern dish of chicken-n-rice. :) She started on the chicken broth 3 weeks ago and has tolerated it very well. Her local dietitian, Min Tian, recommended we start her on broth before the actual meat to get her system used to the animal protein without the harshness of digesting meat. She was eating oatmeal and Cheerios which she did very well with at first but then her poops started getting very loose. Min thought it was because of the gluten in the oats so we have stopped giving it to her for now and her poops showed an improvement.

We met with the nutritionist at Shands and they were very adamant in wanting her to try meat instead of just the broth so we gave it a try………..very bad idea. But like with all foods and short bowel you never know what will work and wont work until you try. Nora loved the taste of the chicken meat but it gave her very loose stools and then ended up bloating and constipating her very badly. She only had 1 tablespoon of chicken for two days in a row, last Wednesday and Thursday, which both nights she went to bed very fussy and with a gurgly tummy. When she awoke on Friday morning her diaper was bone dry, not even a drop of urine after 12-13 hours. Obviously we were very concerned and our first thought was dehydration from the decrease in TPN. So we called her nurse and requested a blood draw to check her sodium level and gave her some Pedialyte. Thankfully she pee’d after an hour or so after waking up but we were still pretty concerned. I had thought it was strange that she hadn’t pooped since the afternoon before especially after her chicken dinner, eating more formula than usual that night and having a loud tummy. She had a small BM around 11am Friday morning but I knew there was a lot more in there and her tummy was bloating by the hour. Nora usually has 3-5 big poops a day. By 2pm her little tummy was so distended it looked like she had a cantelope under her shirt and she would have little moaning spells from tummy pains (to our best assumption) and she was very tired. Thankfully we already had an appointment set up with her local doctor for Friday afternoon at 4:00 to go over changes and recommendations from Shands. While we were waiting for that appointment I took her to Min, her dietitian and acupuncturist to see if she had any insight as to what could be going on. Min has been keeping track of Nora since she was born but she just had her first acupressure treatment a few weeks ago. Min doesn’t use needles on babies but uses gentle touch and stimulation on pressure points of the body. Babies are Min’s specialty, she describes them as like a “clean slate” who are much easier to start off in the right direction unlike adults who have a lifetime of bad eating habits and toxins built up in their system (me being a guilty party myself). Nora responded very positively to her first treatment when Min put pressure on the points to aid in digestion and stimulate intestinal growth. But when Min touched those same points on Friday they were sore and Nora cried out. Min’s assessment was that the chicken was too hard on her digestion and had backed her up so she gave her a very gentle treatment to get things moving again. She thought that the reason Nora wasn’t peeing was because the bloating from her stomach was putting pressure on her kidneys. While we were in her office we got a call with the results to the mornings blood draw and Nora’s hydration was fine.

So we leave Min’s office and off to Dr. Ness we go. We discussed numerous things with him and he thought overall Nora is doing very well besides the little blip she was having that day. He was in agreeance that the chicken meat was the cause of Nora’s bloating. We went over that mornings labs and the red flag he saw was that her BUN level (blood urea nitrogen) was 30 when the normal range is 5-26 and just earlier that week her BUN was only 9. Urea is the waste product produced from the digestion of protein. He explained how he thought this was from the overload of protein in her system from the chicken, but in more descriptive medical terms which I can’t explain as well as he did.

Not 10 minutes after we got home from being in doctor’s offices for 4 hours Nora’s digestive stimulation treatment must have kicked in and she had a very huge, very loose stool and you could tell that she immediately felt much better. (Thank you Nora for letting us get home first!) She continued to have diarrhea like poops through Saturday and thankfully today her poopies are back to normal and much thicker. We gave Nora’s a system a rest from the chicken broth over the weekend and will start it back tomorrow.

Sorry for the long post and no new pictures but we’ll post some of cutie pie soon. :)


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