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Feeding Tube Awareness Week 2018: Day 3

Benefits: Fired Up About NutritionWednesday, February 7th
What has tube feeding meant for you or your child? What benefits have you seen from tube feeding? How has tube feeding improved your child’s life? Dispel myths that people have about tube feeding.  

I've been racking my brain since last night about what I could say today. I've typed and deleted, typed and deleted, and typed and deleted. I could go on for days about all of the questions in today's topic but I won't. I just want to touch on a few things that are on my mind.

What has tube feeding meant for my child? 
She. Is. Alive. SHE'S ALIVE. And not JUST alive, but she is thriving! She is winning at life! She is one of the happiest people I have ever met. To know her is to love her, and she is the way she is today because of the nutrition the tube has allowed her to get when she has not been able to take in enough by mouth.

What benefits have you seen from tube feeding?
Again, SHE'S ALIVE. I look back at her early infancy and shudder to think what would have happened to her had there been no such thing as a feeding tube. Beyond the obvious, she has had the nutrition her body needed so that she could have the energy to grow, participate in therapies to help with her development, and support a healthy immune system, which is important since getting sick can cause flare-ups of some of her digestive issues. 

How has tube feeding improved your child's life?
These questions might seem a little redundant, but there are subtle differences too. To answer this question, I have to think about the quality of Raya's life prior to being able to receive complete nutrition, and then imagine what her life would have been like if her doctors had not put her on the feeding tube. It's not a happy thought. I remember my sweet little newborn losing her voice because of reflux at 4 days old. I took her for a check-up with the pediatrician and her little voice was hoarse and dusky. Her doctors intervened early, and her feeding tube went in at around 10 weeks old. I know how much she struggled even with all of the supports we had in place, including nutrition through the feeding tube. I cannot imagine how horrible it would have been without that lifeline. Before the tube went in, we fought for every drop that went into her, and then we fought to keep as much of it in as we could. After the tube went in, there was a little bit less of a fight. With that, there was a little bit less stress and worry. At least I knew that when she clamped her little mouth shut and refused to take another drop of formula after the first ounce, I could still get the rest in. At least I knew that the medicine that was supposed to be alleviating the miserable pain of reflux was going in, even when she refused to swallow it. I just can't imagine how we would have functioned if things had remained the way they were the first months of her life. It wasn't a magic fix, nor did anyone expect it to be, but the tube supported her while her doctors, therapists, and parents worked hard to figure her out. Answers did not come the way we hoped they would, but over time, we watched her continue to feel better and better. The better she feels, the more able she is to engage in the world around her. She is able to be a part of things and experience life in a richer, fuller way because of what tube feeding has done for her.

Dispel myths that people have about tube feeding.
Oh, the myths. There have been so many over the years. Myths and misconceptions. One of the myths or misconceptions that comes up often on the Feeding Tube Awareness facebook page and seems to be one of the most hurtful for many parents is that tube feeding is taking the easy way out. I've never had anyone come right out and say it to me but at times, it has been implied that we opted for tube feeding because it was easier. I wish that anyone who believes that about us or about any other family with a child who is tube fed could see what families go through leading up to a doctor placing a feeding tube. I wish that anyone who believes that about us could have felt all the things Raya felt as a newborn with food allergies, chronic gut pain, acid reflux bad enough to make her fuss and cry for hours. Do not judge what you do not understand. If your throat was raw from stomach acid burning it, you wouldn't want to swallow either. None of that was easy. Continuing to try and force her to keep eating despite how painful it was for her would have been cruel. When the doctor at the hospital ordered an NG tube to be placed, there was nothing easy about it, and nothing about tube feeding has been easy since that day 8 years and 3 weeks ago.

Nothing.

One of the hardest things about tube feeding, especially in children, is that doctors rarely ever have an exit strategy when the tube first goes in. Some children need feeding tubes for a short time and others need it for life, and many fall somewhere in between. Children are so dynamic and unpredictable that it is nearly impossible to predict when they will no longer need tube feeding. Often, a tube goes in during the time when a child is struggling and the reasons are still not fully known, or the child's body is in crisis and needs the intervention of tube feeding. Such was the case with Raya. She was in crisis and needed the intervention. We hoped the intervention of tube feeding would only be needed for a matter of weeks or months, but over time and with the help of our wonderful, kind, compassionate GI doctor, we came to understand that there were long-term medical needs that would make the need for tube feeding a longer-term intervention for Raya. At no point did anyone, including Donny and me, feel that she would need it for life. There have been many discussions over the years with members of her medical team about the things that will need to happen in order for her to no longer need the tube, and about the likelihood that she will be off of it before she reaches adulthood. However, that is a big mountain for her to climb, and it is one that SHE has to climb! Supporting her in that climb on a daily, hourly, minute-to-minute basis every single day of her life is not "the easy way out". Nothing about tube feeding is easy. If you ever meet someone who is tube fed or whose child or loved one is tube fed, please do not assume or comment that tube feeding is the easy way out. It is anything but easy. No one in their right mind would choose this if it was not absolutely necessary.

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