It's often difficult to imagine what life looks like once you settle into caring for a tube-fed child at home. Here are encouraging words from parents about their children and experiences with tube-feeding:
"When we first found out that our son needed to be tube-fed, we were mostly just scared and wondering if he would still be able to eat by mouth. If he would ever be [able to] transition off the tube. Would we ever be able to leave the house? … At first, we were not at all comfortable with administering our son's tube-feedings. We only had two days of watching at the hospital, and we didn't have anything to practice with. We had no idea what we were doing. But now, I am able to train my extended circle of care … The support we've received from other parents and organizations has been so helpful. I joined all kinds of forums to get as many ideas as I could. Sometimes you are just interested in support; sometimes you are really looking for information."
—Jacquelyn F., mom of Rafael, age 6
"Tube-feeding has been a huge learning experience! I constantly think about the nutritional aspect of my daughter's diet, and wonder if she's getting enough or not. Our pediatric nutritionist has been one of my greatest resources … There are a lot of questions when your child is being tube-fed. I am in regular contact with her feeding 'team,' and I don't hesitate to pick up the phone and call when I have a question."
—Cathy R., mom of Breeauna, age 6
"When we first found out that our daughter would be tube-fed, my first thought was dread, horror, fear and anger all rolled into one. I knew our life would never be the same … I think about my child's nutrition constantly. It's a daily fear that I won't get enough in her or whether she is on the best formula for her needs … In the process of learning how to manage our daughter's tube-feeding, our healthcare team has been beyond helpful. These ladies have answered questions I had about the tube itself, suggestions for feeding routines, problem solving for vomiting, tube blockages, etc. And it is just a stress relief as well … Our healthcare team has been very helpful, but I have really found that experience is the best teacher — it's the only way to learn! I did like being talked through it, but the only way I finally understood was just do it over and over and over."
—Joanne C., mom of Evelyn, age 5