Eating with 4.5cm

This time last year Nora’s g-tube button had just been removed. She was just starting to eat other foods besides Elecare formula and rice porridge, she was on TPN 24hrs a day and she was getting more calories from TPN than from food. Now Nora is eating a variety of different foods, she is on TPN only 12hrs a day and she is getting more calories from food and formula than from TPN. Nora still has a very restricted diet compared to the average 21 month old without SBS. But for having all but 4.5cm of her small intestine removed at birth she has come a very long way and we are very happy with her progress.

A little flash back to how we got from there to here…….When we first brought Nora home from the NICU at seven weeks of age we were trained on how to feed her through a feeding tube and told not to expect for her to eat by mouth for a long time if not ever. She was on slow drip feedings via g-tube day and night. Then we slowly started supplementing a 3 hr tube feeding with a bottle by mouth of the same volume. Since her output did not increase we continued to do this until she was taking all of her total daily volume by mouth. She was still on a slow drip by pump at night but she often she would dump it in the morning or throw up. So then we slowly increased her bottles during the day to make up for the amount she had been getting at night until she was completely off pump feeds. Nora had her last g-tube feeding when she was a little more than four months old and she has been taking all of her food by mouth since then. As backwards to short bowel workings as it sounds, Nora’s poops actually improved with the transition from the feeding tube to oral eating. We kept her g-tube button in until she was nine months old to make sure she stayed strong and that she wouldn’t start dumping and then it was removed.

Weaning Nora off the feeding tube with so little bowel was definitely a debatable issue. We spoke to many doctors and gathered a lot of information before making the decision to do so. Even though she proved that she could tolerate receiving all of her calories by mouth some doctors told us flat out that we were not doing the right thing by discontinuing Nora’s continuous feeding at night time.  Then one doctor told us “if it were my kid, I’d be doing what you’re doing, but as a GI doc I’d say to keep the tube”. (huh?) But if Nora was born in Europe she would have never been given a feeding tube and would have been fed by mouth from the start. So who’s right and who’s wrong? The answer is that there is no right or wrong answer for SBS because every situation is so different and each child’s system works so differently.

The general short bowel theory is that the gut will adapt and grow more if it is constantly stimulated and working. This has been proven to be the right thing for many children with SBS and many children’s systems will not allow the intake of food any other way. But in Nora’s situation, it just seemed like we were forcing her body to do what it did not want to do. We couldn’t help but take into consideration how the digestive system slows down to almost a halt at nighttime (everything needs to rest) as well as knowing how the natural workings of digestion starts with saliva from the mouth. We have learned many lessons since Nora has been born and one of the biggest lessons learned is to not take what a doctor says as written law and to not be afraid to think for ourselves. Most GI doctors instantly make assumptions about children with SBS and many don’t even want to think outside the tiny box that children with SBS have been put into. If we had taken everything that we have been told by doctors as unquestionable then Nora would have even more limitations than she already has. Don’t get me wrong, there are many wonderful and very knowledgeble doctors out there, but they are only human as well. Nothing can replace the daily monitoring of your own child and paying close attention to how they respond.

So what does Nora eat? On average she drinks 800 calories of Elecare per day and around 150 calories of solid foods. Nora’s solid foods consist mostly of gluten free carbs, protein and vegetables. She can tolerate small amounts of certain fruits and minimal fat. She eats three small meals a day, 2-4oz at a time and she drinks 150ml bottles of 24cal/oz of Elecare all through out the day. (and even a couple bottles during the night, Nora never stopped the midnight feeding schedule of a smaller baby)

We continue to try new foods with Nora all the time. With most foods that her system doesn’t agree with it is obvious right away but other foods take a little longer to realize that her short bowel doesn’t like them. Here are the foods that Nora’s system seems to process the best these days.

rice and rice flour products;
rice noodles, rice puffs, rice waffles
goat milk
goat yogurt
quinoa noodles
arrowroot cookies
chicken broth
winter squash (fresh cooked)
carrots (jarred)
red lentils (fresh cooked)
potato (fresh cooked)
peas (jarred) – in very small amounts
chicken w/ veg. combinations (jarred)
turkey w/ veg. combinations (jarred)
bananas (jarred) – in small amounts
apples (jarred and fresh baked) – in very small amounts
pears (jarred and fresh baked) – in very small amounts

The way the food is processed and prepared seems to play a big part with how Nora digests it. But the preparation method her system likes the best varies from food to food. For instance, she can eat a good amount of jarred baby food carrots and tolerate them well but if she eats even a small amount of fresh cooked carrots it comes right back out soon afterwards, even though I cook them to mush and blend them. But with winter squash, she processes the fresh prepared much better than jarred, the same with lentils.

Even though Nora can tolerate a good variety of foods, her diet is a constant challenge and there are many foods that do not agree with her system at all. Digesting and absorbing fat is Nora’s biggest food challenge. Even though her poops have greatly improved in consistency and lessened in frequency since the last time we did a fecal fat test 8 months ago, the recent stool test showed that she is loosing just as much fat in her stool as before. The higher the fat content in the stool, the less fat that is being absorbed in the intestine. If a person is absorbing adequate fat their fecal fat number should be between 0 – 1.9. Nora’s was 5. We need to discuss these results with her GI doctors along with compare her fat intake during the days the samples were taken to get a better understanding of exactly what it means.

Thankfully Nora gets a healthy source of absorbable fat from her Omegaven. She certainly will face many more eating and nutritional challenges in the years to come. But with the intestinal adaption and growth that has obviously taken place in the last year we cannot help but have a positive outlook for her future. Just imagine what she could be eating in another year! Go Super Nora Go!