Theories I Have Learned: Our Journey In Tube and Oral Feeding
"Do you hold him every time he receives a g-tube feed like breastfeeding an infant?" asked my friend, Kelly three months after we brought Nathaniel home.
Her question awakened a maternal instinct I had known with other children, but had not applied to Nathaniel. No, I thought to myself, but was hesitant to admit. Feeding Nathaniel involved a plastic button inserted through a hole into his stomach, a whirling pump hung on an IV pole, and a short tube connecting the two which delivered warmed formula at regular intervals. Feeding Nathaniel was dictated by a doctor; it was supervised and charted by a home health nurse. Feeding Nathaniel was a medical treatment.
At the time, Nathaniel was eleven months old. We had made the decision to feed Nathaniel in a high chair at a family meal as often as his feeding schedule allowed. Other feeds were usually given in his crib. Hours after Kelly's question, I settled into a rocking chair in his room and held him for the duration of his hour and a half g-tube feed; a mother's nurture and intuition was added to Nathaniel's feeding plan. Virginia Sole-Smith writes of similar moments most babies experience early in life in her New York Times article, "When Your Baby Won't Eat,"
"Because babies begin nursing in the first hours of life, because the cry of hunger is one of our first communications with the world, it’s easy to assume that eating is our most primitive instinct. Yet it’s an instinct that must be reinforced constantly. A baby cries, a breast or bottle is offered; the baby sucks until she feels better. Most newborns do little else in their first few months, until their ability to eat is finely honed and the feeding relationship between parent and child is thoroughly established. In this way, the instinct to eat isn’t just a need for physical nourishment — it also ensures that babies form secure attachments. It’s how they fall in love."
We missed this newborn phase of Nathaniel's life. But even worse, he missed it too. His airway abnormalities swept him immediately from his birth mother's womb into medical evaluations and treatments. When most newborns are being surrounded by parents, grandparents, and friends, Nathaniel was encircled by medical professionals in an operating room rushing to save his life. Four days after birth he was considered stable enough to be offered something to eat. He struggled. At four weeks, he underwent surgery to insert a feeding tube into his stomach.
Kelly's comment altered Nathaniel's feeding regiment, and the rocking chair time became a pattern we continued for years. We still offer him a lap a couple times a week. Holding him while a teal and gray pump fills his belly provides significance beyond calories. As we try to teach a four year old the oral skills he should have developed at four, fourteen, and twenty four months, the foundation of trust gained and the falling in love experience of the rocking chair matters.
When we discontinued oral feeding in the fall of 2014 we did not know if Nathaniel would ever eat again. Eighteen months later we made a heart breaking decision to disconnect Nathaniel's upper and lower airway, glue and double stitch his vocal cords closed, and give him a permanent breathing stoma in his neck. He underwent Laryngotracheal Separation Surgery due to stage three laryngeal web, subglottic stenosis, and intractable aspiration. The surgery cut away our hopes that Nathaniel's airway could be reconstructed or that he would speak. But it offered the possibility that he would some day eat again. When given permission to begin oral feeding, I wanted a gentle approach that mimicked the relationship centered feeding experiences we had established with tube feeding.
I postponed a full feeding evaluation or seeking feeding help from the therapists already working with Nathaniel.
Instead I relied heavily on my experience of transitioning our older children from breastfeeding to solids. I navigated carefully between Nathaniel's immaturity in oral skills and sensory intolerance with his cognitive age and desire to be a big boy. For example, I quickly realized that while he needed purées, Nathaniel was more willing to eat his banana if it was offered whole with a knife and fork so he could cut and mash it for himself.
In time, I felt we could both benefit from him receiving a feeding evaluation. He walked into the session able to suck through a straw and self feed with his hands. He had emerging skills drinking from an open glass, chain swallowing, and using utensils. He enjoyed soft fruits, peanut butter sandwiches, and easily dissolved crackers and foods. I walked into the feeding team evaluation prepared to argue against weekly therapy focused on feeding. I wanted to continue our family centered approach.
Surprisingly, no one pushed for intense feeding therapy. After two hours with an occupational therapist, speech therapist, dietitian, and psychologist, I left with a couple pages of recommendations. Most started with the word, "Continue...." We maintain contact through visits and email, consulting with the team as needed. When healthy, Nathaniel consumes fifty percent of his daily calories orally and receives fifty percent by g-tube. He is working on feeding confidence, increasing the variation of foods he enjoys, and continuing to develop skills.
Nathaniel could easily consume all his daily calories orally if he were only expected to eat his favorite easily tolerated foods. Our goal is not isolated to a fast transition from tube to oral feeding. It is for Nathaniel to experience healing. It is tempting to consider only where the child currently stands in skill or development and lose sight of the twisted and difficult path he has endured. My son's feeding journey could be described as horrendous at best.
Nathaniel experienced emergency resuscitative measures within seconds of being born, much of it around and through his mouth. Repeatedly through his early weeks in NICU, therapists and nurses encouraged bottle feeding. These repeated experiences centered on food, but they occurred in absence of a growing relationship with one caregiver. Food was then delivered through a tube inserted through his nose and to his stomach. The surgery to insert a g-tube was followed by complications. G-tube feeding and weight gain were critical criteria for his initial hospital discharge. Under the direction of well meaning professionals, attempts at feeding Nathaniel persisted for almost two years despite the significant choking and breathing difficulties of aspiration. After this extended focus on developing feeding skills, and just when Nathaniel began to enjoy eating, all orally administered food and drink were suddenly withheld.
But damaging experiences continued. Three separate times Nathaniel was strapped in a feeding chair next to a large, loud x-ray machine and force fed barium laced foods. An equal number of times, he had a camera inserted up his nose and down his throat so doctors could observe his swallow internally while he was fed dyed liquids and foods. He spent hours in restraints during prolonged testing on his GI system. During the most barbaric experience, a tech restrained his body and I held his head firmly to the right and then the left while a monstrous x-ray machine was lowered within an inch of his ear and a nurse forced barium into his mouth from a syringe. I squeezed my face as close I could get to his and begged him to swallow so a doctor could gather the necessary information.
Meanwhile, for more than four years we have decided when he is hungry, how much he should eat, and pushed food into his stomach at a rate we deemed best. Likely it was sometimes too cold, sometimes too fast, sometimes the wrong formula. Many, many, many times our best attempts at tube feeding caused him to vomit.
A two word summary, 'oral aversion' or 'food aversion' in a professional report does not adequately depict the trauma Nathaniel has experienced in the name of intervention, diagnostic testing, and treatment. I would not fault him if he kept his lips tightly closed and refused all food and drink forever. Our patience is a warranted response to his suffering. We have been the recipients of a comparable patience from God through our own difficulties. God's steadfast love amidst our troubles increases our trust in Him. We hope for the same for Nathaniel - that seeds of patience and love will grow into trust. Trust that food will not be forced into his mouth and his lips manually held closed until he swallows. Trust that water will not be withheld when a parched mouth needs quenched. Trust that the foreign medical equipment, utensils, or the nightly toothbrush will not bring pain. Trust that his words no, all done, and stop actually have meaning, value, and power. When experiences with food and surrounding the ability to eat wound not only the body, but the soul, trust is earned slowly and healing takes time.
Nathaniel had a GI appointment last week for a weight, height, and feeding check. We go every eight weeks. He has always been at the very bottom of growth charts and there he remains. But he has his own upward trending curve that satisfies his doctor and us. That growth curve has continued in the right direction despite a gradual reduction in calories by tube feeding and experiencing two recent back to back respiratory illnesses. Both the November and December hospitalizations required eliminating all food and relying on IV's for hydration. As Nathaniel's health improved, we first restored full g-tube feeds and then reintroduced oral feeds. I have no idea how many more times Nathaniel's respiratory health will force an increased dependency on tube feeding. Tube feeding is not a problem he has to overcome, but it is a tool that allows Nathaniel to overcome problems.
I recently took Nathaniel to a restaurant and left the medical formula, tube extension, pump, syringes for a flush, special soft foods, and occupational therapist suggested utensils behind. He had been eating well recently. He was rested and in a cheerful mood. I ordered a meal off the children's menu, fed my son, and enjoyed my own lunch and conversation with my companion. Fellow restaurant patrons could not have discerned Nathaniel's complicated eating history from watching us that day. It was a good day. Not because of how or what Nathaniel ate, but because we laughed and smiled and fell a little bit more in love.
Written in celebration of #feedingtubeawarenessweek 2017