Home   May/June 2011   Our Tube Feeding Journey

Our Tube Feeding Journey

My baby won’t eat
My daughter, Ainsley, was born full-term and seemingly healthy in January 2007. But she stopped eating at three days old and vomited violently and profusely whenever I did manage to get something in her mouth. She cried constantly and arched her back in pain like I had never seen before. She was my second child, and I knew right away that something was wrong. We began our long journey of doctor’s appointments and testing at one week old. We learned over the course of the next several weeks that Ainsley suffered from severe pediatric GERD (Gastroesophogeal Reflux Disease) and she couldn’t keep any food down, nor did she care to eat because of the pain it caused her when she would throw it back up. We tried everything to get her to eat, from medicine droppers, to sleep-feeds, soft music, rocking chairs, breast feeding, different bottle nipples, different formulas … but nothing worked. She was starving before our eyes. When she was eight weeks old, my husband and I made the difficult decision to have a feeding tube put down our infant daughter’s nose and into her tiny tummy. I was simultaneously relieved and crippled with sadness and disbelief. I could feed her, finally… but she had a feeding tube. It was taped across her cheek and into her nose, and everybody stared at us. My daughter was beautiful, but people only saw the tube. Thankfully, after staying the same weight for two months and seven pounds, she began to gain weight.

Life with the tube
With the feeding tube in place, we began to settle into our “new normal.” Because of her constant vomiting, I had to keep constant track of what she ate, what she vomited and when she dirtied her diaper. And her weight. And I was pumping breast milk for her, being told that it was the most quickly-digested food for babies, and she needed quick digestion. Anything sitting in her stomach for too long was in danger of coming back up.
In between the feedings, we had to keep her upright, even when changing her diaper. We could not tickle her, bounce her, let her cry or laugh, or she would vomit. Every ounce of food was precious. Every ounce she would vomit was like a small death in my heart. Every cell in my body yearned to feed her, to help her grow. It became my single purpose in life. My little boy, Blake, was only 17 months old when she was born, and by 20 months old, I had to place him in daycare because I could not take care of him – feeding Ainsley had become a full-time, all-consuming job.

The guilt was overwhelming. I cried every day for the first few weeks after I dropped Blake off at the daycare. But I knew at least there he was spared from the constant screaming of his little sister, as she suffered terribly from her GERD. Another kind of tube We struggled with that NG-tube for six months. It was a lifesaver, but it was so hard. She was an active baby now, rolling around, exploring the world, and that tube in her nose was just in the way. It clearly bothered her, from the rashes on her cheeks where we had to tape it down, to the wet-noodle feeling in the back of her throat that kept her constantly gagging. She was always trying to swipe at it and pull it from her nose. Finally, one day when she was six months old, and she had pulled out her tube six different times in one day, and I had to put it back in each time, holding her down by sitting on her and pinning her arms and head between my knees and watching her choke and gag as I forced it through her nose and down her esophagus. I had had enough. I called her Gastroenterologist and scheduled surgery for a gastronomy – a feeding tube surgically placed directly into the stomach (G-tube). I had been trying to avoid that surgery at all costs because having a more “permanent” tube placed in my baby somehow felt like failure, like something extreme. But now I was ready, and it couldn’t get here soon enough.

The G-tube was placed with success when she was eight months old. It was traumatic for my husband and I, but she came through it with ease and even began crawling just two days after her surgery like it was no big deal to her! Deciding to have the G-tube placed was a turning point for us. I finally accepted that my daughter was tube fed and probably would be for years. I finally accepted the feeding pump that the doctors had recommended to us early on. To me, a feeding pump was just one more medical intervention that
added up to my child being really sick. In the beginning, I just couldn’t accept that. Now, I was eagerly learning how to program and use the pump, change out her G-tubes every three months all by myself, and I was remembering how to smile. Life was improving because I didn’t have to spend all my time feeding Ainsley. I had a feeding pump do it for me! At first it was still a little crazy, because she had just started crawling, but she was too little to wear her pump in a backpack that she could carry around. So we had to follow her around everywhere she crawled off to, holding her pump and keeping the feeding hose/tubing from getting wrapped around furniture! It was quite a sight – a crawling baby going as fast as she could while mom chased after her holding a pump and hosing, like she was on a leash. But after five months, she finally began walking and we transitioned her to wearing the backpack
with the pump in it. Now I was totally “hands-free” for the first time in … 13 months. We affectionately called this transition “have tubey, will travel!”
Questions and awareness
Right about the time she turned one, Ainsley noticed that no one else she knew had a “tubey,” as she called it. She kept lifting up our shirts and asking “tubey?” I was also beginning to make it a routine to read to her every night before bedtime, so I thought I should find a book to show her about kids with tubes. I got on the Internet and began my search. What I found was that there were no books like that anywhere! I found an e-book for much older kids about a boy with a feeding tube due to his Mitochondrial disease. It wasn’t age appropriate; it was too condition-specific, and it wasn’t in print so that I could hold it in our laps to read together. That’s when my idea was born. But as much as I wanted to start “My Tubey Books” right then and there, I was still too entrenched in the care of my tube-fed child. It would have to wait.

Gradual improvements
As the months passed, Ainsley’s GERD began to diminish little by little. When she was 14-months-old, I called her feeding therapist and told her it was time to teach Ainsley how to eat with her mouth. She was holding enough food in her stomach and was less gaggy, and she wasn’t quite into the “terrible twos” when I knew she would be harder to train. So with her doctor’s and nutritionist’s support, we drew up a protocol for an “intensive tube wean” where we had to slash her calories enough to bring on hunger. We also began her on a medication to stimulate appetite. The feeding therapist was at our house every day for a week, walking us through teaching Ainsley how to eat. It was intense. She gagged when food got passed her lips and into her mouth. She retched. She vomited. But we persisted. By the end of the first day, we were able to get a spoon of yogurt in her mouth. By the end of the first week, she could eat an entire container of yogurt without retching. She went from being around 90 percent tube fed, down to just 20 percent! The other 80 percent she was eating on her own. We did have many setbacks. Whenever her GERD flared up, she would stop eating, and back to the feeding pump we went. But when she felt good, she ate. We gradually progressed from pureed foods to textured foods. And finally, at the age of three, we felt she was stable enough to take her off tube feedings entirely.
Goodbye feeding tube
Her medical team had us maintain a tube-free existence for a period of
three months before we were cleared to remove her feeding tube. The time
passed with no problems, and in March of 2010, almost exactly three years
to the day she received her first feeding tube as a baby, the doctor removed
her G-tube. I had prepared her ahead of time by writing and illustrating an
educational story showing a little girl getting her tube taken out. We read it
several days leading up to the appointment and also in the waiting room as we
waited for her name to be called. Yet another reminder of my dream of writing
“My Tubey Books” for other kids!
Today
Today Ainsley is four years old. She is a slightly picky eater, but no more
so than my five-year-old son! She is small for her age, as she has always been,
but she is developmentally and physically normal in every way. She is healthy.
She still has infrequent GERD flare-ups, and there are times when I miss her
“tubey” because it was SO easy to hydrate her when she was sick or to administer
yucky tasting medicine. But, overall, life is good. Just before she turned
four in January, my husband and I realized that we were finally ready to make
“My Tubey Books” a reality. And so just a little over a year since she had her
feeding tube removed, I launched MyTubeyBooks.com. The first two books
came out this past spring, with two more to follow this summer.
Ainsley has a scar on her tummy where her G-tube used to be. She still
calls it “my tubey.” Perhaps when she’s a teenager and becoming body-conscious,
it will bother her. But right now, she is proud. She says, “Momma, this
is where my tubey used to be when I couldn’t eat with my mouth.” And she
likes to sit at our table with her markers and paper, drawing her own version
of “My Tubey Books.” She says, “I’m drawing books to help the children with
“tubeys,” just like you, Momma!”

Rhiannon Rubadue is the author of My Tubey: A Day in the Life of a Tube Fed
Girl and more books to come in the My Tubey series. Learn more at
MyTubeyBooks.com.



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