Skip to main content

Feeding Tube Awareness Week: Day 1

This week is the 2nd annual Feeding Tube Awareness Week. The purpose of this event is to promote greater understanding of tube feeding, from the underlying causes to the day-to-day life of someone with a feeding tube. Over the next few days, I will be doing daily blog posts following the topics on the Feeding Tube Awareness Foundation's website.

Today's topic is:
Why awareness is important to my family? What would be the difference for me/my child if tube feeding was better understood?

For the most part, I really didn't (and don't) mind when people would ask questions about Raya's feeding tube. Before I had a child with a feeding tube, I really didn't know much about them either. I had heard of words like "nasogastric" and "gastrostomy" and we had one friend whose son had an NG tube, but that was all I knew. When Raya got her feeding tube, our family and close friends were as supportive as we could have hoped for. Even though they may not have understood the whole situation, they knew that if she had a feeding tube, there must have been a good reason for it.

The point where I realized that there is a need for greater awareness and understanding of tube feeding was when acquaintances and strangers (and even a few good friends) tried to offer advice and questioned the course of action we were taking with Raya. We heard things like: "When my baby had reflux we switched to soy formula and that fixed the problem." "Are you sure you're burping her enough?" "You should try giving her apple cider vinegar every day for her reflux." and "Does she really need that just because of reflux?" Sometimes it felt like people assumed that by going with a feeding tube, we were giving up and taking the easy way out. Even worse was the feeling that people thought Raya's need for a tube equated to our failure as her parents. I know it's not supposed to matter what other people think, but when it comes to people looking at you like your child's medical condition is somehow your fault, it hurts no matter how hard you try to ignore it. This "tubie life" has been anything BUT the easy way out. For us, awareness means that when people see someone with a feeding tube, they understand that feeding tubes are a life-saving medical intervention.
When Raya was 4 months old, she got a helmet to correct her congenital plagiocephaly (misshapen head). She also had an NG tube then, and even though our other 3 kids were young, THEY were even aware of the way people stared at Raya. Little kids would point at her and ask their parents, "What's wrong with that baby?" in a tone louder than the parents were comfortable with. Instead of answering their questions or asking me to answer their questions, they got embarrassed and usually tried to shush their kids and get away from us as quickly as possible. I understood why they reacted the way they did, but with that understanding came the realization that someday in the not-so-far-off future, Raya would be old enough to understand that people were reacting to HER with fear, shame, and sometimes even disgust. THAT made me sad. No parent wants their child to go through life feeling like they are different from everyone else or be ashamed of who they are.

There are hundreds of reasons why a person may need to be tube fed. One thing that makes tube feeding harder for people to accept or understand when they see it is that often, tube fed children look completely healthy. People don't realize that even though a child can look perfectly normal on the outside, there could be any number of things wrong on the inside that make it unsafe or impossible for them to eat. Going through life without eating ANYTHING is a difficult concept to grasp for those of us who don't know what that's like. The other thing that we have run into is that people will see Raya taking bites out of a chip or french fry and ask us, "If she's eating now, then why does she still have a feeding tube?" What they don't notice is that she may be biting and chewing, but she's not swallowing. :) Not only that, but a lot of kids who take nibbles of a few different foods still don't have the skills, ability, and/or desire to eat enough food or drink enough liquid to sustain their lives. Having a feeding tube doesn't mean that there is anything "wrong" with a child, it just means he or she needs help. Some people need glasses to help them see, some need wheelchairs to help them get around, some need hearing aids to help them hear, and some people need feeding tubes to help them eat.

In honor of FTA Week, the founder of the Feeding Tube Awareness Foundation compiled pictures of 222 "tubie" families and put them in a video. We pop up around 36 seconds. :) Here it is:

Comments

Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …