The Family that Plays Together…Eats Together!
Incorporating Siblings into Tube Feeding

by Vanessa Hernandez

It may seem so silly, but what used to bother me the most about Isabel’s feeding tube was her inability to enjoy meals with us. With all of us having our busy schedules dinnertime is family time. When I was pregnant with Isabel I used to imagine her sitting at the breakfast table on Sunday mornings saying, “Can I have more pancakes, Mommy?” Suddenly I felt like those dreams were ending. I wanted her to enjoy milk and cookies with the kids for snack or sneak downstairs for more candy. Well, if I only knew!!

vanessa3Isabel has had her G tube for almost two years now and she definitely is part of our family dinners. We have learned how to incorporate her feedings into our lives and make the children a part of it. Sometimes as parents we fail to remember that children have hopes and dreams, too. They expect to be able to play and eat with their siblings, and we need to make this possible for them.

Helping Siblings Adapt to the G Tube

When Isabel first had her G tube placed, the hospital gave us this great book to bring home and read to the kids. I definitely think that preparing them before she came home helped to lessen the shock. The first few months were rough; the kids had a lot of questions and really didn’t understand. The biggest question was, “Why does Isabel eat through her belly?” That was a good question; unfortunately, I didn’t have a good answer. How do you explain that she just can’t eat enough to keep her healthy? Well, my husband and I explained that Isabel wasn’t as strong as they were, and eating was very hard for her, so we were going to help her eat. Instead of the food going in her mouth, we were going to put it directly in her belly. They just thought it was cool! Isabel can eat through her stomach!

As time went on it just became part of her. No longer did the kids ask or wonder. They just accepted and knew. Every time someone would ask them how their little sister was, they would say, “She’s good, did you know she eats through her belly?” Amazing how resilient and adaptive children are.

Allowing Siblings to Help Tube Feed

The more they understand and participate, the less they fear. It is completely true that people fear what they don’t understand. We do have some rules and guidelines we follow—of course we don’t let the kids go shooting Tylenol or meds down the G tube because that would be just a tad irresponsible—but we let our other kids tube feed Isabel.

vanessa2I try to incorporate the children as much and as safely as possible. Her medications are a little tricky. You don’t want to let kids give them, but you don’t want to say NO and make them afraid. My train of thought on this is that the little ones can give the water flush, which is usually about 10 or 20ml. I allow the older ones to push meds that I have drawn up only under my supervision. Each child is different in maturity and responsibility, so this is really done on a per child basis. Only you know what you feel comfortable with and what your child can handle. Just allowing them to be with you and hand you things is enough to make them feel as though they are a part of it. Sometimes it is more about the child being included, since sometimes siblings of children with special needs feel left out.

vanessa1We use the blenderized diet for Isabel, so I try to let the children participate based on their age. My five-year-old and seven-year-old are allowed to pull the ingredients from the fridge and help me place them in the blender. If your child is on formula, just allowing them to get the can and help you open it will make them feel needed. My eight-year-old and 10-year-old are in charge of getting the extensions and syringes, and they are allowed to help me secure the extension. Of course I double-check it because food all over Isabel’s stomach makes her quite unhappy. They are also allowed to push small water boluses. My 12-year-old is able to feed Isabel by herself, and she is a PRO!! All I have to do is ask and she is feeding Isabel before I finish my sentence. I allow her to blend the food under supervision, but she can administer the feed all by herself.

Of course there will be that one moment when you walk in the living room and find your child shooting soda down Isabel’s G tube. And when you ask the explanation is, the child states Isabel was looking at mine like she wanted some. Makes perfect sense if you ask me. At that point you will take a deep breathe, sigh, and quickly go back over the rules of what to do and not to do. All the while your little one is looking at you, her eyes saying, “Really, Mom, I was enjoying the soda.”

Family Time

Meal times are still family time. We roll Isabel’s wheelchair into the kitchen and she hangs out with us while we eat. Occasionally, someone will sneak her a little piece of food and she plays with it and tastes it, and then politely spits it on the floor. Isabel will only eat orally what she likes, which basically translates to ice cream and cookies, but who I am to judge! Just the fact that she is enjoying time with us at the table is a blessing.

Author: Vanessa Hernandez • Date: 1/16/2013

About the Author

Vanessa Hernandez lives in New York with her husband and six kids, and her youngest, Isabel, was born in December 2010 with Trisomy 13. She is also the Executive Director of Living with Trisomy 13, an outreach for Trisomy and other rare diagnoses. She is the Regional MOM (Mommies of Miracles) admin for New York.

Articles in This Edition

Facebook Comments