Today’s topic is all about tubie resources and support!
I truly love this digital age that we live in! The internet has been extremely helpful in finding all kinds of resources and support throughout this journey. Facebook is increasingly instrumental in connecting everyone as well.
At first, we had one of the nurses in NICU take us in to a conference room and give us a crash course on how to care and use the G-Tube. We had the chance to ask questions and practice with G-Tube Gina haha a doll they have to show parents all about G-Tubes. Upon discharge we had our Home Health Agency to help us with the G-Tube, they taught us how to clean it and use the feeding pump and came once a week to check the site to be sure it wasn’t infected and to answer any questions we had. We also saw the pediatric surgeon a few times for follow-up and he explained to us how to change his button if it ever came out, how to properly clean the site, and signs of infection to look for that would require us to come back in.
After that, it was sink or swim time. We definitely felt alone at the beginning. We timed all our outings around Braxton and stayed home quite a bit because we were unsure of feeding him in public. As we were able to decrease the time he was on his pump, we spent a little more time out and about and were able to feed him discretely using the pump and backpack the Supply company provided us. I remember lots of stares when we were out in public whenever we would set up Braxton’s feeding. It was really uncomfortable for us and we ended up trying to hide it as much as we could.
After much online searching, I finally found the Feeding Tube Awareness Foundation, and that was the first time I really felt like we weren’t alone. Despite the many doctors appointments, I can’t recall ever seeing any other tube fed children (even though I know there are many). I found their website and then their Facebook page, and the reality hit me that there were so many kids who needed tubes. Their facebook page is extremely informative and active. Parents are welcome to post questions and a few of the admins answer questions the best they can and also re-post the questions they may not have a complete answer for to the group for any of the other members to answer. Not all the questions are of a medical nature either. It can be anything from how do YOU include your child at family meal times, are there any products that would make your child more comfortable, to what is the best way to increase speed of feedings. I’ve had several questions answered by other parents, and I’m so thankful for this resource.
The FTAF website has also been extremely helpful. Not only did it help me realize we weren’t alone, I realized how much fun it would be to “dress-up” the tube site and that there was no need to be ashamed. They have a page devoted to helpful products for tube feeding. There are custom backpacks that can be made with any kind of fabric to truly personalize the tube feeding experience, there are special pads that go around the button that are much nicer than using gauze, there are belts that can help protect the button when wearing shirts that don’t button at the bottom, special adaptive clothing, just so many things that are actually made by other parents! Necessity is the mother of invention, and so many amazing moms not only take care of their tube fed child, but take on the task of putting their talent to use to help other tubie families!! So incredible.
These resources and this amazing support group were really instrumental in helping us as questions arose that didn’t require a doctors help. Even ideas on dealing with the stigma of tube feeding in public. We grew thicker skin and acceptance of the situation and took control. Our kid had to eat, so we stopped being so discrete in public. Still very aware of the stares, but realizing that they weren’t all stares of hate or disgust, but possibly people wondering what exactly what we were doing because they’d never seen it before. I wish more people would ask questions instead of just staring. Staring is extremely rude, and it bothers the heck out of me, if you are curious, just ask! I’d much rather educate you than try to discern whether your stare is just plain rude or if you’re actually curious.
And THAT is EXACTLY why Awareness MATTERS!!! This is why this week exists! So many people have no clue about feeding tubes, so I’m incredibly thankful for the efforts of the Feeding Tube Awareness Foundation being put forth to help educate the broader public about each of our situations. The more people know, the less alone people feel and the less stigmatized tube feeding will be for everyone.
Tomorrow’s topic: “Been there, done that.” – Help for new tubie families.
Also, be sure to tune in to Austin’s KXAN at 12:40 pm for our live in-studio interview all about Feeding Tube Awareness Week!
For all Feeding Tube Awareness Week posts, click here!