My Tubey Books

by Rhiannon Merritt-Rubadue                                     January 2013:

When we were in the thick of GERD and tube feeding and incessant vomit, all I wanted to know, was if there were other children like my daughter, who eventually "grew out of it." Just 6 years ago, finding other people wasn't nearly as easy as it is today. We didn't have Facebook yet! And there were just a few support groups on the web, but it seemed like most of the folks whose kids got better, never really checked in anymore. So, I am here to tell you that we are that family that did get through it, came out the other side "healthy," and everything turned out okay for us.

Our daughter went through an intensive wean when she was 14 months old. It was 3 weeks in length, we did it at home with the help of our feeding therapist, and we had great results initially. But then we had a terrible GERD flare-up that nearly put us back at square one--she couldn't keep anything down, completely lost interest in food, and refused to eat, again. But we persisted, and over the course of the next year and a half, she had fewer and shorter lasting GERD episodes, and showed more interest in eating. When she was a month away from turning 3, we stopped tube feeding her and 3 months later, removed her G-tube. It was almost 3 years exactly from when she had had her first feeding tube placed.

That brings us to today. In January 2013 Ainsley turned 6 years old. She started Kindergarten in the Fall. She loves soccer, gymnastics, and all things princessy. She is quite small for her age and is often mistaken as a 4 year old. She is 35 pounds, wears a 5T comfortably, although lately she can get away with wearing girls' size 4/5 in shirts, not pants. She is still on the 3% growth curve. Yes, she is a picky eater and she doesn't consume large volumes. She is a grazer who prefers to eat a little bit at a time. Sometimes my husband and I still catch ourselves staring at her when she's eating, and feel overwhelming gratitude for the simple act of her filling her little cheeks, and asking for more. But then other days, I find myself annoyed by her constantly asking for food! But then I remind myself of how far we've come, give myself a mental slap on the hand, and hand over the food.

MY ADVICE (keeping in mind I'm not a medical or mental-health professional, please!)

So, my advice to parents of GERD babies is to keep fighting, know that you might just have a chance for your kiddo to eat and be tube free one day, and above all else, make your peace with that feeding tube. Even if you get the chance to remove it someday, it will always be a part of your life. There will always be a scar in your heart and soul from what you went through, a physical scar on your little one's tummy,  and it will always be part of your history.

While you have that feeding tube, help your child feel positive about it by being positive about it yourself. Help your child notice the special things about ALL people, including herself. Having a tube fed child  is a great opportunity to educate siblings about tolerance,  differences and unconditional love. If you treat it as a positive, so will they. And please don't ignore the tube. When you are teaching your child their body parts, include the tube! We would always point out  to Ainsley, "here is your head, here are your eyes, here is your neck, here is your chest, here is your tubey, here is your belly button," and so on. Don't give it special treatment by excluding it, or making  a big deal out of it. Just treat it the same as the nose on their face.

If your child is the profusely vomiting type (like ours was!), don't freak out. The older they get, the more they take their cues from your reactions. When Ainsley would throw up, we would quickly and efficiently clean it up all the while saying, "you got sick, no big deal, it cleans right up and you're okay." When she was really little we just called it her "yuckies." We carried plastic bags with us everywhere, dressed in easy to remove layers (a sweater can quickly be removed in public to throw down on the floor to catch incoming vomit!), and kept changes of clothes for everyone in the family (including older brother) in our car and diaper bag. We rarely let GERD stop us from what we were doing. If we were on our way to the park and she vomited all over the car, oh well! We cleaned it up as best we could, and continued on our way to the park.

My final advice is to keep a sense of humor. It's not easy, but it helps more than anything. And while you're at it, make yourself a bumper sticker that says "GERD happens."

Need a shoulder?

Feel free to contact me if you have questions about life "after" GERD, or questions about anything to do with GERD and our journey.