Hellobee

Just like in many aspects of his life, D has come a long way in eating! Let’s start back in the beginning… but first please note that I do not have a medical background and none of this should be taken as medical advice!

A few weeks old / 13+ months old

To recap, due to his brain injury, D couldn’t safely swallow – not even his own spit – which is why we chose to get a feeding tube surgically placed when he was 6 weeks old. Shortly before the feeding tube decision, D did two “swallow studies,” and has had three afterwards to measure his progress. A swallow study (aka modified barium swallow study) is when they give the patient some barium mixed in either liquid or food, and then watch under x-ray video where it goes in their mouth/throat. The barium makes the food show up bright white, and (at least for us) there is a radiologist, tech, and a speech therapist there watching what happens. They take account of:

• How easily they can manipulate the food around their mouth
• When or if the swallow reflex is triggered to close off the airway and let the food go down into the tummy – could be when the fluid hits the back of the tongue, seconds after, or never
• If they let anything go into their lungs (“aspirate”), or go up their nasal cavity
• If they let the fluid hang around dangerously in the back of the throat

I never appreciated what a blessing it is to be able to swallow “automatically” – it requires a lot of muscles all working together seamlessly! If you can tell from my description above, timing is a big part of the issue. The brain has to trigger the swallow reflex at the right time, before the liquid/food gets into the lungs. This is why thicker things are often easier to swallow – they move around much more slowly in your mouth/throat, which gives you more time to react. The test will either run by first giving whatever thickness is currently tolerated (if any) and then working on getting thinner or runnier liquids until the patient fails (aspirates), or starting with the thinnest liquid (basically water consistency) and then working up until a point where the patients passes (swallows correctly repeatedly).

D around the time of his first and third swallow studies

F I R S T  &  S E C O N D  S T U D I E S

D failed his first two swallow studies definitively. For the first (at about 4 weeks old or 36 weeks gestational age), he just let the barium slide down into his lungs. He did attempt to swallow too late, but then didn’t cough or show other signs of trying to protect his airway. The next one two weeks later, he did the same thing except he didn’t even try to swallow at all. This meant he was absolutely not ready for eating by mouth, since he was in danger of letting food pile up in his lungs and get a wicked case of pneumonia. We proceeded with the feeding tube, with plans to retest in 3-6 months.

T H I R D  S T U D Y  –  5  M O N T H S

When D was preparing to get discharged from his 2nd NICU stay at 5 months old, I convinced the docs to give him another swallow study. He had come so far, I thought! He would surely be ready to eat now — they just had to give him the chance! Alas, he utterly failed that one as well. I know that he tried his best and I wasn’t upset with him, I was just sad that he would obviously rely on the feeding tube for a long time. Again, the doctors recommended we retest in 3-6 months. I re-calibrated my expectations of getting the tube out to years, not months.

F O U R T H  S T U D Y  –  8  M O N T H S

The fourth swallow study happened the day after Mother’s Day when he was 8 months old. We had been working on oral skills through EI. I was a nervous wreck, even though I had no control at all over the situation. I tried not to psych myself out either hoping for a good or disappointing outcome. By that time I knew the routine, knew the tech (Brad from Rad!) and how to strap D in the big x-ray chair. This time, since he was over 6 months, he was allowed to have the barium mixed in rice cereal given from a spoon, instead of formula in a bottle. D passed the test on stage 1-2 purees! That meant that although he still failed all thicknesses of liquids, he was now allowed to start eating baby food. It was the best Mother’s Day present ever!

He had his first real food later that day (oatmeal cereal) – he was a fan. However, it was obvious to me that his oral skills were way behind; the food easily fell out of his mouth and he would keep his mouth and cheeks full like a chipmunk. This is still a work in progress; it’s an area that EI and I plan to work on with him in the next several months. I started giving D a small variety of typical starter baby food, like bananas and sweet potatoes. My hopes were temporarily crushed when we went in to see the GI clinic, and they said that he should only be getting vegetables with 3g or less of sugar – no fruits, no grain, no meat, no sweet potatoes, etc. At the time they made it sound like D would be on that sort of a diet for his entire life. They’ve opened it up some now — he is officially sanctioned to have meat, rice and other grains. I have recently started giving him fruits and other things with small quantities of sugar. My decision to start tweaking the recommended diet is a carefully considered one.

S H O R T   G U T  S Y N D R O M E  D I E T

D’s short gut syndrome isn’t a one-size-fits-all sort of diagnosis, as I’m coming to learn. I think that D is also either growing out of the short gut limitations, or at least growing into a less severe case. For one, he’s able to digest all of the food and nutrients that he needs to survive, and isn’t on IV nutrition at all. I recently discovered (by talking with other moms at the GI clinic) that the “no sugar at all, not even fruit” rule applies equally to short gut kids who are entirely dependent on IV nutrition. I now take this guideline with a grain of salt – I think it’s something they say across the board to all of the patients, not necessarily looking at the individual kids and their abilities. I’ve discussed this with D’s regular pediatrician who is supportive of me listening to the GI guidelines for a while and then carefully varying from them to see how he does. We follow up with the clinic in a few more weeks, and I’m a little anxious about getting yelled at by Dr. T (who I mentioned before is not the warmest, fuzziest doctor) for not listening to their recommendations, but I am confident that I am seeking the best life for my son.

F I F T H  S T U D Y  –  1 3  M O N T H S

D just had his fifth swallow study at 13 months. Again the cycle repeated, with me being nervous and D being oblivious. This time they were testing him on liquids — “thin” liquids (formula, water) without any thickener, nectar thick, and then honey thick (just a little thinner than a puree). They tested thin first, and on the third spoon D aspirated some. I tried to take it in stride (again, D was a trooper and didn’t sweat it!) and we moved to try nectar thick. He did great with five spoonfuls, and then they had me give him several sips out of a tiny medicine cup. He did great, and so it was over — he passed on nectar thick liquids!

W H E R E  W E  A R E  N O W

The speech therapist gave us a sheet explaining how to make things nectar thick without using commercial thickeners – basically 1 part yogurt to 1 part milk, or 1 part applesauce to 1 part water, etc. The therapist recommend we skip bottles since it’s a more unique skill, and to just move to sippy or straw cups. D was intrigued initially but doesn’t get the whole fuss about liquids yet. I just recently successfully taught him to drink out of a straw, so we’ll be working on that now!

Now the goal is to get his stamina up, and his oral muscles stronger, so that he can one day drink a ton of (thickened) formula, and eat a bunch of food, so that we can slowly wean down the amount of formula he gets in his tube overnight. Right now he gets about 36oz overnight – it’s a large amount to ensure he gets enough even if he “wastes” some due to his short gut.

Whew that was a novel! Feeding has been one of the biggest parts of D’s journey, and likely the skill he will continue to need help developing for a long time. I am no longer particularly anxious for him to get off the feeding tube, since it’s such a safeguard to ensure that he’ll get enough calories to keep growing and thriving. When the time comes that he isn’t using the feeding tube anymore, we’ll keep it in him for several months before removing it for good. It doesn’t harm him staying in unused, but he’d need another surgery to replace it if his hole closes up. I fully expect him to still be using it a year from now, but we’ll see!

Has your LO struggled with eating? For those of you with tubie kids, what has your journey been?