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Thursday, February 12, 2015

FTA Week 2015: Celebrate Success!

success: (noun) suc cess: the correct or desired result of an attempt

Measurement of success is subjective. One person's idea of success may be completely different than another's. In regards to feeding Raya, my idea of success has changed over time. Early on in our journey, I thought that success meant getting Raya off of the feeding tube. There are people and organizations that operate under this sweeping generalization, but there is so much more to "success" than just getting off of the tube as quickly as possible.

When you are on the outside looking in, it can be very difficult to understand what the journey is like. While I was training to run a marathon a few years ago, I had conversations with several people who had run marathons before. They told me stories about their experiences in training and running the actual race and I had an image in my mind of what those things may have looked like. In a small way, I could relate to their experiences because I was running a lot and dealt with similar things on a smaller scale, but I had no frame of reference for what it was like to run for 26.2 whole miles in a row because I had never done that.

In marathon running, of course the ultimate goal is to cross the finish line, but actually getting to that point involves a long series of small victories along the way. For me, it was things like making it up a 3/4 mile hill without walking, staying with my running partner as long as I could, eating small snacks & taking drinks without overdoing it and getting sick, and most importantly, hitting the times I needed to at each mile marker in order to finish in the time I wanted to. It's not JUST about getting to the finish line! Getting there is the ultimate goal, but HOW you get there is just as important.

Thinking about feeding Raya in similar terms has helped me to have perspective. When all you think about is the ultimate goal of not needing a feeding tube anymore, life gets very depressing. The reality is that even "temporary" tube feeding can last years, and when you're looking at a finish line of tube removal that seems light years away without seeing the small victories right in front of you, it is hard to see the progress you're actually making. I thought it might be nice to share some of the successes we have seen over the last 5 years of tube feeding. My hope in doing this is that other people will be able to recognize their small victories as well, and realize that even when the ultimate goal of 100% oral eating feels like it is unattainable, the small victories mean inching closer to that goal.




Success #1: being allowed to leave the hospital with her! I passed my NG tube 101 training and convinced the staff that I was capable of handling a tube fed baby at home, even if I didn't really feel all that capable at the time.

See that awful tape job? That was the first time she pulled the tube out at home and I had to put it back in. It wasn't pretty but we got it done and I got pretty dang good at dropping that NG, and I got really comfortable handling a baby with an NG tube. (and yes, so far these successes are more about me than her, but me being successful = her getting fed, so same thing)



At 3 months old, Raya had adjusted to the second formula we tried her on and started gaining weight again, despite still vomiting and spitting up a lot. Success then meant getting her back into the 5th percentile on the weight chart!


At 7 months, she was at a healthy weight and had made some progress on the skills that she had been delayed in. Even though she was still throwing up a LOT, she was much healthier than the weak, pale, sickly little baby she had been before the tube.


She got to where she could handle having non-food objects in her mouth, like the handle of a battery-powered toothbrush, and we were able to do a little bit of practice tasting food. She wouldn't swallow it, but if I only did a tiny bit at a time and didn't push her too hard, she also didn't gag and vomit. At the time, I was thrilled to see her get to that point but I was also sad to see how hard it was for her to deal with, and it broke my heart. It didn't FEEL like a success, but getting her to tolerate those small and simple things was another very important milestone in the process and it was most definitely a success.


We made it through a rather rough start to having a G tube. Our G tube surgery experience was not typical and we were really just happy to get past it. And past the 3 months after that, really. It wasn't pretty, and getting through that rough patch without losing our minds was a success.


Our first accidental G tube pull-out happened 2 1/2 months after her surgery, and even though the adrenaline was pumping, I got it back in without a problem. That was success.


We survived our first airplane trip and our first out-of-state medical testing trip.


One of the most exciting moments in her first couple of years of life was right around her 1st birthday when she decided she liked bacon. She put bacon in her mouth willingly, and actually enjoyed it. That was the first food she ever liked, even if she wasn't able to actually eat it at the time.


That one speaks for itself. After having been NPO (nil per os, Latin for nothing by mouth) for most of her first year and wanting nothing to do with liquids in her mouth, failing and then passing a swallow study, I was thrilled beyond words to see her want a drink of water and then actually swallow some without choking on it. I may have even shed a tear or two and taken a video and about a dozen pictures. That was a HUGE milestone in our journey towards the ultimate goal of not needing the feeding tube. It was the result of another HUGE milestone, which was the point where she stopped vomiting several times a day.


She ate beans. Then she ate pureed oatmeal. Then she ate a Dum-Dum. And drank more water. The amounts were small but still significant and still very much a success, and a big step towards the goals of increasing her caloric intake and the variety of food she liked.


Her first ice cream cone. (before we knew she was allergic to dairy) It was the first time we had ever taken the kids out somewhere and bought food for Raya too.


We survived a 4 month sabbatical from eating food and reacted very positively to being able to eat again. Success and success!


In spite of setbacks that took us back to 100% tube feeds and almost nothing by mouth, we have made big steps forward again in the past month or two. She is back to asking for food 3-4 times a day and is almost eating enough to start counting the calories again. (I don't count them if it's less than 100) She is also back to 3 bolus feeds a day with the rest fed continuously, and that is a HUGE step forward from where we've been. Each time we have added a bolus feed and she's tolerated it, it has been another success to celebrate.



We have so much to celebrate. Life is not what I pictured 5 years ago when my tiny 3 month old was struggling, but life is good. She lives life fully, and she does not let a feeding tube slow her down.


Someday, Raya will probably be a "tubie graduate". She probably won't need her tube anymore and we will start a new chapter. Until then, we will continue to set smaller goals that will take us closer to that ultimate goal. We will keep celebrating the successes, learning from the setbacks, and working together to balance pushing her toward her goals with preserving her happiness and quality of life. (piece 'o' cake, right?)
Success does not equal getting a child off of a feeding tube, as I had thought in the beginning. Success means a healthy, well-nourished child, and while we do hope and believe that Raya will someday be able to leave tube feeding behind her, that is not the only definition of success.

2 comments:

  1. The word success really has taken on a new meaning in our home since having our kiddos. When my son allowed food in his mouth, even though he spit it in the trash can afterwards, it was success. When he put his first food in and didn't spit it out, instead deciding he wanted it, success. We have had these milestones, and huge set backs (just had one last week - sigh), and it has given us such a glimpse of how "simple" the word success can seem to the outside world, but to us... it was never more complicated or harder to attain.

    So glad Raya is having awesome successes. Praying they continue each week, month, and year. I hope our story will end with a tube free kiddo, though I don't know what the future holds for him. But, even if it doesn't we will be counting all the successes along the way.

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  2. She's beautiful, I especially love the last picture, she looks so grown up :)

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