It's Feeding Tube Awareness Week again! I was excited for this last year, but this year has been a whole new level of excitement. The growth that has take place on the FTA facebook page in the last year is incredible! At risk of sounding cheesy, it warms my heart to know that so many people are finding support and connecting with other families who are fighting the same battles. When I first came across FTA's website and facebook page, I felt like I had won the lottery. (A very strange lottery where the prize is a ridiculous supply of syringes and medical tape.) At that point, I had no idea that in the not so far off future, I would be joining the staff of FTA and working on projects like this:
I am SO grateful to be a part of FTA.
Here is today's FTA Week topic:
Tell your story. Educate others about what life is like with a feeding tube and with your child’s/family member’s/your medical condition. Why does your child/Why do you have a tube?
I think the best way to preface this topic is by sharing the video I made last year for FTA Week:
Untitled from Brandis G on Vimeo.
Raya was born full-term and seemed perfectly normal at birth. We had already had 2 other very spitty-uppy baby girls so we fully expected Raya to follow suit. What we did not expect was a baby who was miserable no matter what I eliminated from my diet, how we fed her, how we held her, or what we did for her. We did not expect the projectile vomiting that could hit the opposite end of the couch. We did not expect hours upon hours of crying every evening, hospitalization at 2 months old, 130 medical appointments in her first year, or immeasurably enormous amounts of vomit that went on for months. Most of all, we did not expect for our perfect-on-the-outside baby girl to end up with a feeding tube.
The first year was rough. We had roughly 130 medical appointments, incurred a lot of out-of-pocket medical expenses, logged 1500 miles on the car driving to appointments, flew across the country for motility testing, learned a lot of acronyms (GERD, FTT, NPO, EGD, MBS, NMGES, SPD, etc.), became experts on the subject of medical tape, pushed the limits of the human body to function on very little sleep, spent too many nights on uncomfortable plastic pull-out couches, tried not to stress out while waiting for dozens of test results that were ultimately disappointingly normal, tried not to get frustrated with the lack of diagnosis, put the NG tube back in 62-ish times, made difficult decisions, learned to draw up an exact amount of each med without even looking at the numbers, had a lot of "what NOT to do" moments, held a poor sweet baby down for WAY too many pokes & unpleasant medical things, and tried not to completely neglect the other 3 kids who call me Mom. It was exhausting and difficult.
I'm happy to report that years 2 and 3 have been much less stressful because we are no longer in an acute phase. We've had hiccups and bumps in the road here and there, but it's been over 2 years now since our last hospitalization. We have learned so much in the past 3 years of tube feeding that we are much more comfortable with it now. Although we have had some setbacks in the past 4 months, we are medically in a very good place with Raya right now.
There are 2 questions that I get asked almost every time I have a conversation about Raya's feeding tube. The first one is "Why does she have a feeding tube?" and the second is "How long will she have it?" Those questions seem simple and innocent enough, but they are often frustrating because I don't have good, short answers for either one. In her 3 years, she has accumulated a lengthy list of diagnoses, some related to tube feeding and some not. (like torticollis and plagiocephaly) She has the tube because she had severe GERD as an infant, which turned into projectile vomiting, food refusal, delayed gastric emptying, visceral hyperalgesia (gut hypersensitivity) and severe oral aversions. Simply put, who wants to drink hypoallergenic formula when you've only ever tasted it on its way back out? To compound the problem, Raya was exclusively tube fed during the phase of infancy when eating is instinctive, which makes learning to eat exponentially more difficult. To even further compound the problem, when she finally did start to eat, we discovered that she does have food allergies and protein intolerances, as we had suspected early on in her life. So basically at this point, she is tube fed because she doesn't understand that eating is essential to sustain life, she is afraid of new foods, and she is currently on a strict diet of only hypoallergenic formula so there are no foods that she is currently allowed to eat.
The answer to the "How long will she have the tube?" question is a little shorter, but no more satisfying. The answer I usually give is, "We don't know." That's the short version. The long version is this. In order to not need the tube anymore, she has to take any and all medications by mouth, drink sufficient fluids, eat a variety of foods that she is not allergic/intolerant to and which meet her nutritional needs, eat a sufficient number of calories consistenly, and go for approximately 6 months without using the tube. I will likely not feel comfortable removing the tube until I have seen her go through a viral illness without needing the tube as well before I'll feel comfortable removing the tube. The other short answer to this question is that we don't know, we think she'll eventually be off of the tube, but we also know that it will probably be well into elementary school at this point. That answer is hard to swallow for those close to us, and even harder for us as her parents to swallow. It's hard to even find words to describe how it feels to know that you and a team of experienced medical professionals are all busting your butts to do EVERYTHING you can do for your child and having it not be enough. The fact that you even NEED a team of experienced medical professionals to help raise your child is humbling.
Our story will not include the "Tubie Graduate" chapter anytime in the near future, but someday when Raya is ready, both physically and emotionally, I have no doubt that she will be able to have her tube removed. Until then, we have learned to fully embrace that little tube, love it for all the good it does her, and not resent it as much as we used to.
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