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Wednesday, February 8, 2012

Feeding Tube Awareness Week- Day 4

Today's topic is: How has your attitude/family/friends' attitudes changed towards tube feeding? What has awareness of the positive benefits done to change perceptions?

Eek. I hope I don't offend anybody. If you are my friend or family member, don't take anything I'm about to say personally because I'm probably not talking specifically about you. :)
Honestly I feel like we have been extremely blessed to have friends & family who have understood and been kind & compassionate towards us during the times when Raya's health was a really big challenge for us. I know that's not always the case for other people and so I know that we are very blessed in that way.

I've been reminded over and over in the last 2 years that God puts people into your life when you need them and when they need you. The first exposure I had to feeding tubes was when we went to visit with some friends that were in town for the weekend. The friends whose house we were at had a little boy who is the same age as our 3rd child (like, 2 days apart) and he had an NG tube because of Eosinophilic Esophagitis (EE or EoE). I had heard of feeding tubes before and even knew the word "nasogastric" but that was about it. I'm really good at remembering medical terminology even if I don't really know what the words mean. :) I had never heard of EE though, so she explained to us what EE was and why it required her son to have a feeding tube. She told us how he had been born weighing 9 pounds but a few months later, his weight plummeted and he was a sick little boy, and that thanks to the feeding tube and elemental formula, he was doing much better.

Their story stuck with me because she and I had been pregnant with our 3rd children at the same time and when they were born 2 days apart, her son outweighed Kaida by 3 pounds. At the time of this visit, they weighed about the same. I knew that any child who had started out at 9 pounds and ended up as skinny and small as Kaida (who we were desperately struggling to put weight onto) MUST have had a real need for this little feeding tube that was taped to his cheek.

I will ALWAYS be grateful for that experience. I was very curious as I have always been interested in things of a medical nature, and I had a lot of questions about his medical condition. My friend answered them all patiently and presented tube feeding to me in a very positive way. She didn't have to even say it, I could SEE that tube feeding had saved her son's life. The way it came across was that although his medical condition was scary, tube feeding was not.
Fast forward about a year and I found myself standing in my kitchen in desperate need of moral support. I had gotten a crash course in NG Tube 101 before we left the hospital, but they could only give me the technical aspects of tube feeding. They didn't tell you things like how to tape your baby's NG tube to their cheek, what to do with all that extra tubing to keep it from getting ripped off their cheek, how to bathe them without the tube getting in the way, etc. because they didn't KNOW any of that. I remember calling my friend and asking her so many silly questions about how to handle life in general with a feeding tube. I'm sure it seemed like no big deal for her to share her suggestions with me, but it was HUGE to me because I had no idea what I was doing. Simple things like taping the end of the NG tube to the kitchen faucet when I gave Raya a bath to keep the pointy pink thing from stabbing her in the bum were VERY helpful!

It is human nature to be curious about things that we don't understand. Curiosity may kill the cat, but it also inspires learning, which leads to greater understanding and acceptance. In the beginning, I know that a lot of people close to us really wanted Raya to get better and be able to get rid of the tube. This is not to say that I didn't want to get rid of it, but because other people weren't around her all the time and taking care of her like we were, it was hard for them to understand why I NEEDED her to have the tube. To be perfectly honest, I pretty much hated the NG tube. It was a pain in the rear to take care of. In spite of that though, we LOVED it because it meant that no matter how bad of a day Raya was having, we could still keep her hydrated, fed, and medicated without having to make frequent trips to the hospital. (as a side note, I had more negative experiences with people criticizing the medication choices we made than I had with the actual feeding tube.)

Feeding tubes can be intimidating. Even I was afraid to touch her after she had her G tube surgery. I had to learn how to hold her without getting tangled up in the NG tube. It is very difficult to find people who are comfortable enough taking care of a tube-fed child to be able to leave her for very long at a time, especially during the phases when she had a more demanding feeding & medication schedule. In addition, it was difficult for ME to feel comfortable leaving her. It wasn't that I didn't trust the people I left her with, it's just that I knew what a big job it was taking care of Raya and I didn't want to burden people with that, especially in the event that something should go wrong. In the first year, I can count on one hand the number of times that I left her with anybody outside of our immediate families. I can count that on one hand too. I always appreciated the offers, but I just felt like caring for her was Donny's and my responsibility and too much of a burden to place on anybody else. That's one that I still struggle with.

The only time I remember really feeling frustrated with the lack of understanding is when it came time to decide whether or not to get a G tube. Again, I know that nobody meant to add to my frustration. I was struggling myself with whether or not surgery and a G tube were the right choice for her, and it was hard to explain to other people why it needed to happen. Anytime someone asked me if she really needed surgery or if we could just keep doing the NG tube, I felt really defensive. I knew they were probably thinking that having to go through surgery would be worse for Raya than having what seemed like a simple & less invasive intervention of the NG tube, but that was only because they didn't understand how demanding life with an NG tube could be. I didn't want her to have surgery either but I knew that the NG tube was doing more damage than good, and that was hard to explain. Maybe I should have just shown them the videos of me putting Raya's NG tube back in. :)
Really though, it had gotten to the point where Donny and I and Raya's doctors knew that since none of the things we tried to stop her vomiting were working, there was no chance of her eating anytime soon and it was time for something more long-term than the NG tube, which is really only meant for SHORT-TERM feeding problems.
I know that one of the hang-ups that some of our family members had with the G tube was that it was "permanent".  On the contrary, G tubes can be removed when they are no longer needed. Like I told my daughter's 3rd grade class last week, once Raya doesn't need the tube anymore, we'll take it out and the hole will close and it will just look like she has 2 belly buttons. They all thought that sounded pretty cool. :)

I know that our family's experience with Raya's medical needs has been frustrating for some of our family members. It's hard to remember who you've explained things to and who you haven't and so I know that there was a lot of miscommunication and lack of understanding simply due to the lack of information. I've wondered at times if people felt like we were overdramatizing the situation too. Sometimes I think people probably get sick of hearing about all of it. We've had to ask people to watch the other kids WAAAAYYYY too many times and I know there were times when people felt like we were taking advantage of them, which was the last thing we wanted. Sometimes you just don't have a choice though. We've always appreciated the outpouring of love and support from everyone even if we haven't been the best at expressing that.

Really, I can't speak for anybody but myself as far as the attitude towards tube feeding. I have perceptions of what the attitudes of family & friends has been towards it but honestly I'd be curious to know what other people have thought about this along the way. I think that once we all saw the difference it was making for Raya, all of our family (including Donny and myself) understood that it was necessary and good. We've had some really positive teaching moments with the feeding tube too. This past summer, we went to visit my family for a couple of weeks. It was really fun to see all the kids get together and play. When they went swimming in the little wading pools one day, Raya didn't have a shirt on and none of her cousins had ever seen a feeding tube before. One of her little cousins was afraid to get in the pool with her and just stood there and stared at the tube. Her older cousins were curious too, but once we had explained to them that it's just a way to get food into her body since she's not able to eat it with her mouth, they went on playing and that was the end of it.

As a parent of a tube-fed child, there is a responsibility to learn how to embrace tube feeding in a positive light so that we can present it that way to those around us. Tube feeding your child and being tube-fed definitely is no picnic and it can and does have negative effects on the child as well. But really, is there anything more positive than being able to use a simple medical intervention nourish a child who would otherwise be dangerously underweight, dehydrated, or even dead? I don't think there is.

The best thing I've done for myself (and probably for Raya) is to learn to LOVE that little tube for all of the good it does for her. There are plenty of times when the tube makes me angry, frustrates me, makes me sad, and generates a ridiculous amount of extra laundry, but there has never been a time when I have regretted getting Raya a feeding tube or getting her a G tube instead of the NG tube. Because of the example my friend set for me by explaining tube feeding in a positive light, I have always understood the importance of presenting it that way myself. I'm sure that hasn't always happened because there are definitely times when I hate that my child needs to be fed through a hole in her stomach, but I want people to understand that feeding tubes are a GOOD thing and that life with a feeding tube can be good too.

When I look back over the past 2 years, I can see that my view of feeding tubes has become SO much more positive and instead of looking at the tube as a burden or a problem that we need to hurry up and get rid of, I have learned to see it as a tool in Raya's health & development. When the kids did their presentations about feeding tubes for their classes at school last week, one of the things they said was, "Some people need glasses to help them see, some need wheelchairs to help them get around, and some people need feeding tubes to help them eat." I think that reflects how my attitude has changed over the past 2 years. I used to feel a lot of pressure to get Raya to drink formula & eat food so she can get rid of the tube, but seeing the tube as more of a positive tool has allowed me to let go of that pressure and relax knowing that when she's ready, we will be able to get her off of the tube. Until then, we're just embracing life with the tube and moving ahead at Raya's pace.

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