All in Lessons I've Learned

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 five other times, 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. 

My All Done Broken Heart

I knew as I walked out of the Pediatric Intensive Care Unit in November that Nathaniel would recover from the acute illness requiring swift intervention. His body was already responding to the IV fluids. However, I also knew that my heart will never recover. There is no ointment or medicine or surgery that can fix how it breaks when I have to pin Nathaniel’s little body to an emergency room gurney and hear him plead with his voiceless screams and beg with his searching eyes for the procedures to stop.

What Nathaniel's Grandfathers Taught Me About G-Tube Feeding

Rich's father lived with us when Nathaniel came home in August, 2013. He was ninety-two years old at the time and required assistance with meals. My days were punctuated by preparing, serving, and keeping Grandpa company while he ate breakfast, lunch, dinner. Our family talked at length about how a new baby with intense medical needs would intersect with the responsibilities we were carrying at the time for Grandpa. Grandpa participated in some of those discussions. He firmly encouraged us to move forward with fostering and eventually adopting Nathaniel. He expressed a trust not in our ability to manage the additional demands, but in God's ability to help all of us adapt and make room for a little one who needed a family. "I can make myself a peanut butter and jelly sandwich when I need to," I remembering Grandpa offering.

Nathaniel qualified for private duty nursing support, and I was immediately faced with the question of how to use that help. Do I leave Nathaniel in his bedroom with the nurse for the hours I spend in the kitchen and with Grandpa? Or do I include Nathaniel in those times and try to merge his medical care and staff intimately into family life? His brief stay at the pediatric rehabilitation hospital influenced the decision strongly. The morning of Nathaniel's discharged, I met a Craigslist seller on my way to the hospital and bought a used high chair. Three hours later, Nathaniel was within cane's reach of Grandpa at the table. Grandpa and Nathaniel spent mealtime side by side for close to year. Our day nurse at the time, Danielle, attended to Nathaniel while I prepared Grandpa's meal. Danielle and I slowing altered Nathaniel's g-tube schedule to match Grandpa's meal schedule. Daily at breakfast and lunch, she would warm her packed food and the four of us, plus any older boys who where home at the time, would gather around the table.

The Water Bottle and The Loneliness

Nathaniel climbed through the van door and scooted past his car seat to grab his water bottle. We had stopped at park near home after therapy; we were leaving for home. "Thirsty Buddy?" I asked. He nodded, opened the folded yellow straw top, and tipped the bottle up. A drop of water dripped down his chin. We have been working on drinking since February. I have bought countless cups and water bottles. Some with lids leak on the cup side. Some with no lids leak on the Nathaniel side. Some seem to fill his mouth quicker than he can swallow and the leaking comes from his lips. I had high hopes this new one would work. Nathaniel handed me his cup and crawled in his car seat. I wiped his chin, buckled him, handed back the cup, and prepared to leave. I had high hopes the first drip was an opps. Before the van was to the park entrance, I had to pull over. As he continued to drink, water continued to drip down his chin and into his stoma causing him to cough and needing suctioning.