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.
