A Love Letter to My Son’s G-tube

I’d convinced myself that you were completely unnecessary, meant only for those who weren’t able to fight as hard as we were. I saw you as an excuse to give up, a thing that I’d never imagine doing. I put you at the top of my enemy list and made myself busy with anything I thought would make sure we’d never meet. I threw money at special spoons, expensive bottles, organic fruits and any tool that I thought would make eating and drinking easier. The very thought of you was absurd. His gut was never the victim of his extreme prematurity, our battle was his lungs. He tolerated increases in his feeds fine, he routinely drank 80% of his needed daily volume. He was discharged with an NG tube which he happily ripped out every chance he got. The reflux and vomiting improved once the NG came out. We were doing just fine without you. At least that’s what I told myself. I convinced myself it was normal to keep detailed logs of exactly how many milliliters he drank and when. I knew by noon if he would hit his calorie goals. He had good days 3 times a week, then gradually it became twice or once a week. Then there was the vomit. This wasn’t normal baby spit up, this was projectile and terrifying. I actually poured out different volumes of milk on a plate and took pictures so I could estimate how much he lost by the size of the puddle on my floor. It was hell. I spent every waking minute embattled in a never ending game of catch up. This whole situation was my fault anyway. My body betrayed him, after 25 weeks and 1 day my womb was no longer a safe place for him. So all the pain and suffering that came after was the direct consequence of my imagined failure. The guilt and depression weighed heavily on me. I wondered what we did to deserve this. As the struggle to gain weight intensified, you were brought into the conversation. The pediatrician, GI doctor and surgeon all saw you as an answer to my prayers. Late one night after struggling for an hour to keep him minimally hydrated I finally wished I had you. My husband called one of the attending doctors from the NICU, a fantastically brilliant and brutally honest woman whom we admired. We tearfully explained the situation to her and she told us the hard truth. Without you, we were risking his healthy brain development. In the time of his life when he should be growing the fastest his curve was far below the first percentile, and the time window to intervene was getting narrower by the day. I knew then that you would be a part of our lives. I stopped fighting and started learning about you. I learned that you wouldn’t keep him from crawling, swimming or being tickled on the belly. I read how you saved children’s lives and parents sanity. On the morning of the surgery I felt the same agonizing helplessness I’d lived with months before while he was in the NICU. Then his nurse walked in smiling and said “We’re gonna fatten you up now aren’t we?” I managed to laugh and handed her my happy baby. He smiled and babbled at every doctor and nurse he passed as she carried him down the hallway to the operating room. I laughed again. Maybe this wouldn’t be so bad. A few hours later I saw you for the first time, not nearly the monster I imagined, but a small secure little button. I learned what you were made of and how to care for you. I felt relieved that my son recovered in one day and was still interested in drinking his bottles like before. We came home and I saw firsthand how much we needed you. His skin was more pink, his hair finally grew in. His cheeks filled out and we could see his knees and thighs getting more plump. He started sitting up on his own and taking more interest in his toys. I knew that on a day where he barely drank I could run the pump overnight to make up for lost calories. I stopped trying to estimate the exact volume of his spit ups. Then when he started teething and could barely open his mouth I relied completely on you. When he got colds and fevers you were there keeping him hydrated and keeping all of us out of the emergency room. You became his lifeline, I came to see you almost as a second umbilical cord. A direct route for me to give my baby nutrition. As he outgrew the tolerance for formula I learned I could use you to give him any food I wanted as long as it was blended well enough. You’ve provided me an opportunity to give him nutrient dense foods that he’d never eat by mouth. Kale, spinach, prunes, quinoa and so many other powerful foods that give him energy and heal him. You allow me to let his food be his medicine and he is growing so beautifully because of you. I never wanted you but now I thank God for you. Your contribution to my baby’s health is immeasurable. I love you, G-tube, for all you have done for us.