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Sunday, February 9, 2014

Feeding Tube Awareness Week 2014- Day 1: Share your story

Feeding Tube Awareness Week (aka FTAW) is upon us again. It has been a bit of a whirlwind getting ready for it this year as pretty much the whole FTA staff has some kind of upheaval going on right now but we are very excited that it's here. As usual, there are daily topics to help bring light to different aspects of tube feeding. (topics can be found here) The official FTA video was just released last night and I absolutely LOVE it! My friend and colleague Hillary did all the hard work on it and the rest of us helped out where needed. It is a beautiful tribute to the small and simple device that keeps all of our children alive and well. Here it is:


Due to being in the hospital all week with Raya and trying to get ready for a baby that's due on Friday, I'm bummed that I didn't get a video made this year but I thought I'd share the last 2 that I made for previous FTAWs.


Raya FTAW 2013 from Brandis G on Vimeo.

Today's topic is: Why do I/does my child have a feeding tube? What positive benefits have come from tube feeding? 

Once upon a time, I had imagined that by this point in Raya's life, we'd have a quick little one or two word answer to the question of why Raya has a tube. "Oh, she has XYZ syndrome." That would be convenient. Instead, we still stumble through rattling off an abbreviated version of this:
She was born full-term and like her 2 older sisters, started spitting up right away once she started eating. The reflux got worse over the first couple of weeks and she did not like eating. She was a miserable baby and didn't gain much weight at all. By 6 weeks, she was projectile vomiting. At 2 months she was admitted to the hospital for testing and had to be switched to a low allergenic formula, which she refused to drink, which made the first NG tube necessary. The next year was filled with test after test, buckets of vomit, trials of different feed schedules and medications, more buckets of vomit, and a lot of stress trying to figure out what was wrong with her. She got a G tube, then got a GJ tube, then we flew across the country to do motility testing, then we came home and kept plugging away at therapies and fine-tuning feed schedules & formulas. Finally the vomiting slowed to a minimum, and then stopped completely. (and the washing machine rejoiced...)

We thought (and hoped) that once the vomiting stopped, the eating would start. It did, but not like we had hoped. She had SO much lost time to make up for and had problems with textures, temperatures, flavors, and a lack of efficient oral motor skills. She also just plain didn't care if she ate or not and had no comprehension whatsoever of the necessity of eating. As she started to work through those issues, it became apparent that she has multiple food allergies that have since drastically limited her dietary options. So basically now our challenge is finding food that she CAN eat, that she WILL eat, that has at least some nutritional value to it, and convincing her to eat more than just one food on a regular basis. Piece of cake, right? Oh, and I forgot to mention that she has gastroparesis, which means that her stomach doesn't function completely normally and it empties slowly, especially with solid food. So in addition to the above requirements, the food also has to be fairly low in fiber and has to be something that moves through the stomach pretty quickly in a person with a normal digestive tract.

So there you have it. We have a darling 4 year old girl whose body works against her in multiple ways and makes it necessary for her to get about 85% of her nutrition and fluids and 100% of her medications through the beautiful little feeding tube surgically implanted in her stomach. And yes, I really do think the tube is beautiful. Okay, well it can be pretty cruddy looking but figuratively, it's a beautiful thing because it's such a small and simple device that has kept my sweet girl alive, but also given her ample nutrition to help her grow and to help her body AND her brain develop beautifully. She is a smart little girl with a huge personality and we owe both of those things to her feeding tube. 

Happy Feeding Tube Awareness Week! Stay tuned for the rest of the week's posts! (and maybe baby sister will be joining us sometime this week too)


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