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Kicking off Feeding Tube Awareness Week 2015!


I feel like I say this every year but Feeding Tube Awareness Week really caught me off guard this year. It has a way of sneaking up on me! Last year we had just gotten out of the hospital with Raya and were getting ready to have a baby during FTAW, and this year I'm getting ready to go to another conference to represent the Feeding Tube Awareness Foundation and my baby is turning 1 this week. {why does babyhood have to go by so stinking fast?!?!}

You know what else caught me off guard? Having a baby that needed a feeding tube! That came out of nowhere, or at least I felt like it came out of nowhere. Raya was born full-term at a weight and length similar to her 3 older siblings. Things weren't perfect with her from the beginning, but nothing seemed to be terribly wrong either. She started out similar to her older sisters with the spitting up, lack of enthusiasm about nursing, and fussiness. Then she was vomiting. Not just spitting up, but full on, gagging, retching, heaving, VOMITING. The day I took her to her 2 month well-check was the last day of "normal" for me as a mother. {wow, I have never thought about it like that until just now!}

The last day of "normal"
The next day, we were sucked into a vortex that was unlike anything we had ever experienced, and from which we could not escape. (That sounds so dramatic but it FELT dramatic too.) That was when we went from the "we just had a baby and we have 3 other kids" kind of busy to "holy crap, what is happening here?!?" WHIRLWIND kind of busy. One day, I was taking my baby to the pediatrician to talk about trying a different reflux med and the next day, I was sitting in a GI doctor's office hearing that we were dealing with more than just reflux. It was the first time I had ever heard the word "hospital" in the same sentence with any of my children's names. I suppose we were lucky that way with our other kids being healthy aside from the usual childhood stuff.

Today's #feedingtubeawarenessweek topic is:
Talk about the reasons you, your child, or your loved one is tube fed. Raise awareness of the medical conditions that made tube feeding necessary.

The original reason Raya got a feeding tube was because she stopped eating. She did not stop eating to be ornery. She did not stop eating because she was being difficult. She did not stop eating because she was rebelling against our parental authority. She stopped eating because eating made her miserable. Breast milk made her hurt. Formula made her hurt. Vomiting made her hurt. Reflux made her hurt. EATING made her hurt, so her instincts told her to stop doing it. If you reach out and touch an electric fence and it zaps you, you learn not to touch it again. That is an inborn survival mechanism that warns us of danger and keeps us safe. It was not her fault she stopped eating, and that was a warning sign to us of just how awful she was feeling. The fighter in me wanted to resist the feeding tube so that I could prove that I was a good mother, as if having my baby need a feeding tube somehow meant that I was not a good enough mother. Not good enough to do the most basic and most vital job that a mother does for her newborn baby: feed her.

But you know what? Having my baby need a feeding tube had NOTHING to do with my abilities as a mother. I was a good mother to her and Donny was a good father to her and we worked hard to take good care of her, just like we had done with all 3 of her older siblings as newborns. It wasn't that I didn't know what I was doing. It wasn't that I hadn't tried hard enough {because the good Lord knows that I had tried EVERYTHING!}. It had NOTHING to do with me. There were things going on inside her body that we did not understand, and even if she had not gotten the tube at 2 months, it would have still happened at some point because it was inevitable with her medical conditions. The difference is that because we intervened early on, we were able to optimize the nutrition she received and prevent her from being further delayed in her brain development by using a feeding tube to supplement what she was able to take by mouth.

Early on, we didn't think she would need the tube for very long. Maybe her doctors knew she would, but I didn't understand that at first. The question I am asked most often about Raya is, "Will she always need the feeding tube or is this something she will grow out of?" We have struggled for 5 years now to figure out what "this" was. As it turns out, "this" is a combination of many factors that will make getting to a point of removing the feeding tube a difficult and long process. I do believe that Raya will be able to be tube-free someday, but that day is not going to come in the foreseeable future. If I had to guess, I would say that there's a good chance that she could learn to manage her conditions by the time she is a teenager and no longer need the support of the feeding tube but it could be sooner and it could be later. It has taken me a long time to be able to say this and not feel like it's a dagger in my heart, but we are not worried about it because the feeding tube is not the worst thing to happen to her. It is the BEST thing that has ever happened to her! NOT having a feeding tube when she was in dire need of its support as an infant would have been the worst thing to happen to her. We have adapted, and although she struggles with certain physical and emotional aspects of her life, she has never known any different and she is happy with her life just the way it is.

There are literally hundreds of conditions that can result in the need for tube feeding. Some are temporary and some are not. What parents of children who are tube fed want people to know (and also those individuals who use feeding tubes themselves) is that feeding tubes are not the enemy. Feeding tubes are not a sign of bad or lazy parenting. Feeding tubes keep people alive who would otherwise not be able to survive, and they improve quality of life for those who are in need of a boost. The way Raya's older siblings explained it to their friends at school is this: Some people need a wheelchair to help them get around. Some need hearing aids to help them hear. Some need glasses to help them see, and some people need feeding tubes to help them get proper nutrition. It's as simple as that. {not to be confused with LIFE with a feeding tube being that simple, because it most definitely is not!}

Even though I had no idea 5 years ago that we would still be using a feeding tube, we are happy to be celebrating another Feeding Tube Awareness Week and sharing our story with anyone who will listen.



For more about Feeding Tube Awareness Week, visit www.feedingtubeawarenessweek.org

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