My daughter struggled to eat from the moment she was born. Proving that she could eat enough with a regular bottle was the barrier to getting her released from the Neonatal Intensive Care Unit (NICU). Once home, we struggled to get a few ounces in her only to watch her labor to bring them back up. Her weight plateaued, and she was constantly making a purring sound from liquid pooled in the back of her throat. We brought her to the doctor many times, consulted a feeding specialist and a gastroenterologist.
But we soon found ourselves with a three-and-a-half month-old baby who, despite our best efforts, had been aspirating for months. She was slowly drowning as her lungs filled up with breast milk and then formula, finally landing us an Emergency Department visit, cardiac and respiratory arrest, and three rounds of chest compressions. In the Pediatric Intensive Care Unit (PICU) they placed an abdominal feeding tube (G tube) and performed a Nissen fundoplication to protect her from aspirating when she ate by mouth and to avoid aspiration from reflux.
This wasn’t Esmé’s first feeding tube. When she was first born and in the neonatal ICU, Esmé had a feeding tube through her nose (NG tube), but it had felt like such a temporary medical device—and it was something the nurses took care of. The G tube, on the other hand, felt permanent. We would have to manage it on our own…and it would be her only source of nutrition.
We felt so daunted. I was especially concerned with feeding her in public. I felt that I would no longer be able to join in coffee chats with the Mommy and Me yoga crowd. It was tough enough watching them breast feeding and bottle feeding their chubby cherubs with such ease while Ez sputtered and sweat her way through an ounce or two. Whipping out a feeding pump and a handful of syringes at the local coffee shop seemed just too daunting. Would people stare? Or worse, would they be disgusted and turn away?
Planning a Life with a G Tube
So I made plans, which is what I do when I’m petrified. I knew that I couldn’t avoid feeding her in public, since she ate every two to three hours. So, I ordered a cute bag to carry her pump in. I thought of the “Hooter Hider” I purchased when I was pregnant for modestly breast feeding my future child. Since Esmé never even came close to latching, we had bottle fed expressed milk and then hypoallergenic formula, and the Hooter Hider still had its tags on…I figured I would be able to feed Ezzy in public without anyone being the wiser.
I proudly told the resident in the PICU about my plan for feeding Esmé in public under a tent of beautiful fabric. She looked vaguely troubled and said that I, “should be proud of Esmé’s feeding tube.”
And she was right. But the problem was getting from the knowledge that this little piece of medical equipment could keep my child safe and growing, to dealing with it as a reality. The reality in public included odd stares from strangers, stares I could already imagine while safely in the confines of the hospital. I mean, really, I hadn’t known what an abdominal feeding tube was before having Ezzy. Even I might have stared if I saw one, not out of anything other than curiosity. But still, I might have stared at us.
I could already imagine how hot I would get knowing people were looking…how much more likely I would be to squirt formula all over the place or leave her tube open leaking all over her cute outfit.
In the twenty months since we got the feeding tube, I have done all manner of embarrassing things while feeding Ez in public, mostly relating to projectile food/stomach contents.
The story that sticks with me most happened just when I was starting to get a bit more comfortable taking Ezzy out and feeding her in public. I had been taking her out with my husband or my mom for a while. With the extra set of hands it was getting to seem very doable. However, I had not ventured out with Ezzy alone much. In an effort to start conquering that fear, I planned to meet a friend and her daughter for coffee. I had over-packed for the occasion, nervously carting approximately 1 million syringes in various shapes and sizes.
By the time I made my way in with the baby and the 400 bags, I was flustered. But once I settled in I relaxed a bit. Ezzy was doing well, sitting calmly on my lap watching her young friend in perpetual motion. No one other than my friend seemed particularly aware of Ez. Some older ladies commented on her beautiful hair as they headed out the door. But other than that we were almost the only people there. Just one well-dressed man sat in an easy chair near us, and he seemed completely disinterested in either child as he read the New York Times.
I was safely organized in a comfortable chair with her formula heating within reach on the table beside me. Once I relaxed, I got into the rhythm I have at home, where I seem to grow extra (surprisingly graceful) arms that fluidly move through the steps of venting, giving meds, and feeding:
Clamp, pop, burp, clamp, pop, flush, clamp, pop…
Picture me, finally feeling confident, chatting as I vent Ezzy’s tube in preparation to feed her. I kindly aim the vent away from my friend…
Clamp, pop, burp…
Watch with me in horror as a glob of stomach contents launches across the room and lands, splat, on the shoe of the well-dressed man reading the newspaper several feet away. He had no idea—or if he did, he was polite enough to appear not to notice.
It is one thing to mistakenly spray your husband with your child’s stomach contents, or to shoot a syringe of food onto your own ceiling, or drench yourself and a nurse, or, even, to mistakenly ingest some of said stomach contents while venting your child (not that this has ever happened to me). It is quite another thing to hit a stranger in his expensive shoes with what is, essentially, vomit.
I was pretty horrified. And I avoided looking at that man the rest of the time we were there, as I was certain he would eventually notice the splatter on his shoe, trace the path of the projectile with CSI accuracy to my sweet daughter’s feeding tube, stand with finger pointed accusingly, and say, “YOU!”
But, he didn’t. And I survived my embarrassment. Lord knows I’ve embarrassed myself worse for less good reasons in the past. And really, what mother hasn’t found herself doing some disgusting task as though it was the most natural thing in the world—only to discover how bizarre it might be by the mere publicness of it?
Tube Feeding Success
Now, I am not going to claim I have this figured out. I do sometimes forget now that every child doesn’t have a feeding tube. Typically I am reminded in line somewhere with a crying Esmé in one arm, sucking on the end of an open vent trying to tease out the gas that just doesn’t want to be found, saying sweetly to my girl, “it’s ok, give Maman your bubbles,” when I look up to see the confused faces around me.
But many days I am acutely aware of this (one among many) things that sets my child apart from other children.
Those shields that I devised—the cute pump bag, the Hooter Hider, the 2.5 million syringes—helped me feel prepared and in control like a bizarre adult safety blanket. I never use them anymore. I don’t hide my child’s tube or the way I feed her. I know exactly how many syringes to leave the house with.
But it took me awhile…and a lot of practice. And, honestly, I think this is the trick of feeding your child with a feeding tube—which is, strangely one and the same as the trick to parenting: you have to learn how you do it. For us finding ways to feed Esmé our way, rather than the way we were taught in the hospital, gave us the confidence to care for her with ease in private and in public.
We bolus feed her and no longer ever use the pump. We blenderize rather than use commercial formula. We vent with our mouths on an open syringe rather than use a plunger. And we have gotten used to laughing off the stomach contents and food sprays that make their sticky appearance regularly.
This is what works for us.
And when people stare, because they inevitably do, I give myself the leeway to react how I feel. I try to be positive, smile, and educate. But sometimes I don’t feel like it. Sometimes I decide to tuck my peanut deeper in my arms, shield her from the world and look in her beautiful eyes.
And sometimes instead I lift up my head, look right back at the stranger, and try to imagine if Ez and I could launch her stomach contents and reach them with a SPLAT!