All tagged G-Tube Feeding

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. 

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.

A Day Without G-Tube Feeds

My granddaughter can roll over. She did it the first time when her Nana, my son-in-law's mother, was taking care of her. My daughter called me to share the information excitedly later that day, "Blaise can roll over! Well... nobody actually saw her do it, but Jan laid her down on her back and went to heat her bottle, and Blaise was on her stomach when Jan came back."

I am jealous. Not because the other grandmother witnessed this milestone. Rather, my emotion stems from the contrast I sense in adults' reactions to Blaise and Nathaniel learning new skills.  It only took one time of rolling over for all the adults in Blaise's life, me included, to consider the skill achieved. Blaise CAN roll over. There is an unspoken assumption there - she did it once and we fully expect she will keep doing it. She CAN roll over. It means thinking twice about leaving her on the couch or bed. It means keep dangerous things further away. Once was all it took. 

Hello from Cincinnati... Let's Have Cake

had a heavy heart Monday evening when I merged from Interstate 74 south to 275 east. I do not need a map to get to our Cincinnati hotel anymore. I know this city well. We walked into the lobby, and Nathaniel started to cry. He was inconsolable through the check in process and worse when we got to the room. He stood frozen halfway between the bed and the door, held his trach and cried. I had to wipe tears too. Everything about arriving in southern Ohio for another group of appointments felt hard and heavy and sad to both of us. We've done this a lot in the last year. Many of the visits produced physical pain and difficult news. Neither of us wanted to be here.

In the process of settling into the room, Nathaniel's g-button was pulled out. My twelve-year-old niece was in St. Louis last week for her annual "Camp Rankin" visit, and I asked her parents for a second week so she could be my travel companion. She is brave beyond her years. She responded quickly and confidently to instructions and helped to reinsert the button. Nathaniel laying on the floor without his shirt led to tickling and giggles. Ellie is old enough to be a fantastic mother's helper and young enough to be a buddy to Nathaniel.