In a few days I will stop feeding my child.
I will do it slowly, dropping meals over a week’s time. I will not give in and feed her the way she wants to be fed. She will be upset. She will cry. I will be upset and cry. Our world will be turned upside-down.
In the end, I hope she eats.
My second daughter was born with a genetic abnormality and has more difficulties and needs than a typical child, one of which is eating. While Gia shows some interest in eating orally, she’s had a feeding tube since birth. I am thankful we live in a world where she survived with the aid of medical interventions. Placing a gastrostomy tube (g-tube) was not an easy decision, but a necessary one and perhaps our only choice at the time.
As a result, I spend countless hours analyzing her diet, weight gains and losses, and blenderizing a special diet just for her. Gia probably has the healthiest, most balanced, diet of any child in Missoula! (Especially when compared to her older sister who eats only carbs, but that’s another story).
She is now 19 months and I believe the time has come. After two previous weaning failures, meeting with many therapists and medical professionals, we are ready for the next attempt. Gia and I will be traveling to Seattle Children’s Hospital for an intensive, two-week g-tube weaning program. She will be closely monitored as we drop the amount of calories we give her via the g-tube. We will be surrounded by food, both healthy and unhealthy, in the hopes that she will eat something, anything.
February 6-12 is National Tube Feeding Awareness week and feeding tubes are not as uncommon as you may think. Ask ten people and I bet at least one person has had experience with them at some point in their lives. In Missoula, I’ve heard estimates that five babies a year leave the NICU with a g-tube and there are many other older children who receive them later. In children, as in adults, sometimes they are temporary, and other times they aren’t. There are many medical reasons while a child might have one ranging from surgery or illness recovery to a physical inability to swallow. Regardless of the situation, g-tube moms have quite a bit to deal with and life with a g-tube kiddo is not easy.
In our case, I cannot leave Gia with just any babysitter or even friends, unless they are trained in g-tube feeding and emergencies. Worries about our kids health are often intensified with by frequent weighing and medical professionals analyzing our children’s nutrition. Feeding a tube kid in public can often illicit unwanted stares. Also, the time it takes to prepare the food, clean the equipment and feed our kids can often be several more hours than a non-tube kid. It can be a stressful situation, putting strain on the family, especially if no outside help is provided.
But in the end, we have the same goal as moms of typical eating kids too. And we have the same worries about our special children growing; the only difference is that our children are fed through a hole in the body, rather than through the mouth. It is every mother’s natural instinct to feed her child, and we are no different.
However, I cannot deny that I absolutely hate the g-tube. I’ve spent many hours wishing it away, cursing it as I deal with the medical aspects of having a hole in her body cavity, swearing as I spend half my day feeding her through a tube only to have her vomit it back up. Recently though, I have made my peace with her g-tube and am thankful to be able to have this option and the tube helped facilitate Gia’s growth into healthy little toddler. In all likelihood, without the aid of a g-tube, she might not be alive today.
And as I embark on this adventure in weaning, I have every possible emotion you might imagine: scared, nervous, excited, sad, and even a little exhausted and overwhelmed. I have been reflective and hopeful; I have to believe she can do it. I have also felt very guilty for putting her through this ordeal.
And what I’ve decided is that I have to torture her so I can give her a gift. The gift of tasting family dinners, of nibbling on fresh veggies from our garden, of sharing freshly baked cookies with her sister, of licking a Big Dipper cone on a hot summer day, the gift of eating her own birthday cake. Eating will not make Gia a typical child and she still has many obstacles in life, but it is a start. A very tasty start.
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