Today's topic: It Takes a Village
What resources have helped you the most? How did you connect with others? How did it feel to find others who were going through the same thing?
At the time that Raya got her feeding tube, I knew one person with a tube fed child. I felt lucky to even know one. Our husbands had been friends since they were kids and we had been over to their house several months before Raya was born. They explained a little about their son's diagnosis and seemed to be very comfortable with his NG tube. I will be forever grateful for that because it meant that I had already seen the positive effects of a feeding tube on the life of a small child and that made it less scary for me. She was my go-to person for things that I was embarrassed to ask our nurse or GI, like how to bathe Raya in the kitchen sink without the pointy pink thing on the end of the tube poking her in the bum.
In the beginning, I relied heavily on our heaven-sent GI nurse. Raya was so high-maintenance for the first year that we talked on the phone at least a couple times a week. It didn't take long before she could recognize my phone number when it popped up on her caller ID. I know that Raya kept her extremely busy with phone calls to different entities on our behalf, but she also took the time to help me with all of the silly little questions that came up. Eventually we switched to email as our main mode of communication because it was easier and didn't take up as much time for either of us. I was incredibly lucky in that when we had a problem, all I had to do was email her and within hours, she had consulted with the doctor and had an answer for me. Our first year would have been VASTLY different without her and although we were excited for her new adventures in mommyhood, we were very sad to see her go and have never stopped missing her.
Somewhere along the way, the loneliness hit me. I was blessed with kind and compassionate friends and family who did everything they could to support us, but there were times when I desperately craved the firsthand knowledge that only other tube feeding parents can relate to. As AMAZING as our GI nurse was, she had never had to deal with a med port popping open in the middle of the night and feeding the bed. Other moms had. I started seeking out blogs about kids with feeding tubes. Most of the ones I came across were about kids who were born with severe heart defects who needed feeding tubes to help them conserve energy and consume the extra calories they needed to grow enough for their next surgeries. Many of them had developed oral aversions and had been given G tubes at some point along the way. I needed these stories. I needed to know how these people (who were dealing with much more serious issues than the feeding and GI problems we were having) handled life with a feeding tube. After a while, I started to envy the community of support among heart moms. They really seemed to bond and reach out to each other, and without a diagnosis, we had nowhere that we really fit in.
(In the spirit of full disclosure, this is about to get incredibly biased...)
One day, about 16 months into our tube feeding experience, I had typed in a google search for something about GJ tubes and GI problems. I don't remember exactly what my search keywords were, but I wound up on a blog about a darling little girl named Allie, whose story was very similar to Raya's. She was also undiagnosed. My heart started pounding as I read her story and emailed her mother. In the sidebar of the blog, there was a cute little heart with an extension tube around it and the words "Feeding Tube Awareness". Out of curiosity, I clicked on it. That was the beginning of something that has changed our lives.
The Feeding Tube Awareness website (www.feedingtubeawareness.org) was full of information that would have been SO helpful months before I finally stumbled upon it. So much of what we knew at that point about day-to-day life with the feeding tube was learned by trial and error simply because I didn't know where to look to get helpful suggestions. I felt like I had hit some kind of jackpot. From the website, I found my way to the facebook page. (cue heavenly angels singing) I may have shed a tear or two of joy. At that point, I think there were about 2,000 people on the facebook page. 2,000 people who GOT it. 2,000 people who had been vomited on, carried syringes and medical tape in their purses, were used to operating on very little sleep with frequent interruptions, were afraid of what the future held, and really truly knew what all of this was like. THAT was where I finally felt like we fit in.
Several months later, I became a staff member and facebook page co-admin for FTA. This has been an honor and a privilege for me. Our facebook page is quickly closing in on the 9,700 mark. In the past 3 days, we have grown by nearly 500 people. This growth is so exciting to see because it means that thousands of families are finding the support that they are desperately seeking, just as I was.
As wonderful as it has been to connect with other tube feeding families online, it has been especially helpful to connect with others who live near us. I've had a few "tubie in the wild" experiences where I've run into other tube feeders in random place, like church and the park in our neighborhood. At risk of sounding dramatic, those were divine intervention when I really needed it. A little over a year ago, I met two other local moms in person for the first time. They already knew each other, and we all became instant friends after I became acquainted with both of them on Feeding Tube Awareness's facebook page. We all have little girls who are relatively close in age. In March, we got the girls together and did a little photo shoot with them. It was so neat to see the way their faces lit up when they saw each other's feeding tubes. Until then, I hadn't really thought much about about how it would impact Raya to have friends who have feeding tubes. As grateful as I am for my tubie momma friends, I'm even more grateful that Raya has her sweet little friends too.
Sharing our story was something that I felt kind of silly about at first. I had been keeping a family blog already, and it got to the point that Raya's health issues were taking over the family blog. I decided to start one for her and never expected anybody but my mom to read it. Apparently a few people do though. :) Not long after we met Lily and Whitney's families, we also met Jaxson's family. His mom had come across the blog and emailed me, and the rest is history. He's only a few months older than Raya and we often joke that they are twins born to different mothers because they are so alike in so many ways. Jaxson has 2 older siblings, and meeting their family reminded me that having a tube fed child is a family experience. One day, they were visiting and during a lull in our own conversation, my friend and I realized that our daughters (age 9 & 10) were having an in-depth conversation about blood coming out of stomas. We could not stop laughing!
If I had to choose one thing that I think would have made a huge difference to me (and the rest of the family) earlier on in our feeding tube journey, it would be finding support earlier. It had never occurred to me to look online for other parents; not on facebook, babycenter, or anywhere else.
One other resource that I want more people to know about is the Oley Foundation. While attending Clinical Nutrition Week this weekend, I had the opportunity (along with my colleague & friend Traci, the founder of FTA) to get to know the staff of the Oley Foundation. They are wonderful people who work very hard to advocate on behalf of consumers of enteral (feeding tubes) and parenteral (TPN) nutrition and to keep the consumers up to date on things that may have an impact on them, such as the current problems with shortages of TPN supplies. They have a great deal of helpful information on their website that has been a result of 30 years of experience in enteral and parenteral nutrition. I relied heavily on their travel guidelines last summer as we prepared to fly with Raya. Excellent resource!
And last but not least, I have also found support and information from Mommies of Miracles and Feeding Matters (formerly POPSICLE Center). Mommies of Miracles has a HUGE following on facebook and they have built a website with a wealth of information about a wide variety of medical conditions. Feeding Matters is an organization that works tirelessly to facilitate better coordination of care across the board when it comes to the management of problem feeders and tube fed children. They have a great online assessment tool to help determine whether interventions should be taken to help a child who is having difficulty eating, and what those interventions might entail.
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