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