Food and Sebastian

I’ve written a lot about food this month. Beautiful, flavorful, amorous, aroma filled food. I have so many happy memories from different foods in my childhood, adventurous food stories from around the globe and important decisions about what types of food I put into my body. It has been wonderful to spend time with these memories because when my son was born, everything changed.

Suddenly I was faced with worries I had never imagined while I was pregnant. I was now worried about his ability to eat, to take in the nutrients he so desperately needed to grow. Every waking moment became about his survival and whether he had the ability to eat/drink: to suckle, to nurse, or even to drink from a bottle. And in those first days, he didn’t. He had been intubated at birth, a large tube had been forced down his airway through his mouth, to help him breath. This could have caused him to have a higher upper pallet. It could have caused sensory issues which made feeding difficult. We would later find out he has cerebral palsy, which effects the muscles and movement in his body. There are a lot of muscles in your mouth which you use to eat and drink, one of those big ones is the tongue.

In the early days Sebastian had a tube inserted into his nose which led directly to his stomach, called an NG Tube. He vomitted when we tried to feed him my breast milk from a bottle. He writhed in pain when I held him close to me, balanced on one of those U-Shaped pillows, for nursing. He couldn’t do it. Or didn’t want to do it for the pain. I read books and websites when I was pumping at night in between his feeding times. I read about babies with colic who cried all the time and had painful air bubbles. So we bought gripe water and added that to the list of medicines which we inserted through the tube or with a syringe. I so wanted it to be this, just colic like other newborns. Normal newborns. What is it like to hold your newborn to your chest and have them suckle from your breast, full of milk for them? I don’t know. I pumped into delirium after I fed Sebastian and he was back to sleep after a bout of tears caused from air bubbles. There are a lot of muscles in the digestive system too. I guess they weren’t working so well for him then either.

We kept a notebook with scribblings about how much milk he drank and when we fed him. How much he had through the tube and how much he was able to eat through the bottle. I felt like we we forcing him into a schedule we had not created but which had been created by the nursing staff at Homerton Hospital. We were new parents, what did we know? As he continued to vomit up most of his meals, I started to feed him less more often and it seemed to help. Instead of forcing the bottle I let him take what he wanted and stop when he was ready. I had to mix my milk with a thickener called Gaviscon that was supposed to help him with his reflux. It just made it come out thicker. Every once in a while I still tried him on the breast but it always ended with both of us in tears.

We had a health care worker visit us twice a week after he came home from the hospital. She weighed him and checked his tube, looking over our feeding notes before leaving. About two weeks after he came home from the hospital, Sebastian pulled his tube out one morning around 2am. He seemed to have done it deliberately. Instead of putting it back in, I woke my husband and we went into the bathroom with the fan on, this sound soothed him when he was most upset, and we took turns getting him to drink from the bottle. The sucking reflux was there. And so was his will to drink from it. He was still hungry, his belly not yet full. He fell asleep drinking that bottle, for the first time. There was no vomitting afterward, no air bubbles. Just a first in many small victories he would achieve.

That night Sebastian decided he was done with that feeding tube. He wanted the bottle. We had worked together, the there of us, without the help or overbearing supervision of the hospital nurses, to feed Sebastian in the way that his body needed. It was only the beginning.

March 25
Kara Melissa Sharp

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