Davy had just been discharged from his nine day hospital stay. Just the day before, he'd had surgery for a G Tube placement, and I was terrified of that little button in his tummy.
It took me several nervous breakdowns and four training sessions with a G Tube nurse in the hospital before I was even able to hook up the extension tube to Davy's Mini One Button. Thankfully, the nurse provided me with a dvd that she had made for her patients that gave details on what to expect when your child gets a G Tube. She also brought me a stuffed bunny? kangaroo? (we're still not sure what it is...) that had a G Tube that I could practice on without the stress of having to hook up an extension tube to a screaming, flailing two month old baby.
When we left the hospital, I stopped at Target and bought a small cosmetic case similar to this one to keep Davy's tube feeding supplies organized in the diaper bag. I browsed the store for about 20 minutes while Davy slept peacefully in his carseat, thankful to finally be out of the tiny hospital room we'd been stuck in for nine days.
And then I realized that his next feeding was due in about half an hour and I was still 45 minutes from home. There was no way I was ready for a tube feeding in public yet, although it's something that I would become very comfortable with over the next year. It was time to go home and accept our new reality.
My sister came to stay with us for two weeks after Davy came home from the hospital, and it was then that I found out that she actually had experience with G Tubes thanks to a former job working with disabled adults. During the times when I was crying and begging Davy to stop screaming and arching his back long enough for me to hook him up to a feed, she stepped in and calmly took over or coached me through my fear. I wouldn't have survived those first few weeks without her.
My sister knew how to calm Davy down so tube feedings were a lot easier. |
I joined a Facebook group for parents of children with feeding disorders, many of whom had feeding tubes just like Davy. While adapting to Davy's G Tube was a rough transition for my family, I couldn't believe how much worse it was for so many other families. Many of them had been sent home after the G Tube surgery without any direction on how to use it, and many others didn't have family who was supportive like ours.
Davy was able to have his G Tube removed when he was 18 months old, but that part of our lives is still very real and close.
Which is why, when I saw what My Tube Feeding Kid was doing for families who were just starting out with feeding tubes, I was so excited.
In August 2016, Nestle Health launched the My Tube Feeding Kid website which is a comprehensive online resource for tubie families. I checked it out and was thrilled to see that they covered all the necessary information without being overwhelming. The website also has links to other resources that are helpful as well.
The best part though? They have started providing welcome home kits to healthcare practitioners to give to their patients as they leave the hospital after receiving a feeding tube, be it NG or G Tube.
The welcome home kit includes resources for the parents and child. For the caregivers, there's a book with tabs so you can easily find answers to your questions, a large dry-erase magnet that you can use to track feeding schedules, and a card with quick answers to common questions.
For the child, there's a page of temporary tatoos, some stickers, an iron-on patch, and a fun book with a story and some activities.
As I looked through the kit, all I could think was, why wasn't this available when we went home from the hospital?
But now it is and hopefully, more and more healthcare providers will begin carrying it so that it can get in the hands of families who need it. If yours doesn't, there's always the My Tube Feeding Kid website to find information.
Nestle Health was kind enough to provide me with two welcome home kits, one for me to keep and one to give away. However, I'm going to go ahead and give away both since Davy no longer has his feeding tube and I know there are many families out there who would appreciate it.
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My Tube Feeding Kid welcome home kit from @NestleHealthUS is a must for any new #tubie family
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In addition to giving away the two welcome home kits from My Tube Feeding Kid, I'm also giving away one of the most popular designs from my shop in any size from 3-6 months through 6 years.
To enter to win either of the Welcome Home Kits or the tube feeding shirt, just fill out the rafflecopter widget below. Good luck!
a Rafflecopter giveaway
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Wow. I did not know much about tube feeding until I read your post. I'm so glad you had your sister help you. Thank God for amazing nurses. :)
ReplyDeleteI'm not sure how you could get one if your hospital isn't participating in the program! You could try the My Tube Feeding Kid website (https://www.nestlehealthscience.us/mytubefeedingkid) or Facebook page for more information about how to get a Welcome Home Kit.
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