NICU Reality Check
| June 22, 2021“You’ll see,” she said in a soft, melodic voice. “This will be motherhood, just a different kind"
My time in the NICU with my premature son much followed the same routine during the 14+ weeks of our stay. Arrive in the morning with my gray hospital tote, head into my son’s room, give him a quick good morning, look over his charts, and head off to pump. Finish pumping, head back to his room, apply Purell, put on a disposable hospital gown if the nurse insisted, and take him out of his bassinet, trying to stay clear of his tubes, be they a respirator tube, IV, feeding tube, oxygen cannula, or whatever he was decked out with depending on the medical crisis of the day.
I would hold him for a while, our tiny boy who arrived two months early, schmooze with the other mothers, check if the vending machine was stocked with cinnamon Danishes, pump again, and then it was time to head home to face the rest of the gang.
The baby had suffered brain damage in utero, and combined with his prematurity, his medical and developmental progress didn’t pose a pretty picture. He suffered from seizures which eventually got under control even after stopping medication, but he displayed no ability to eat, needed suctioning for excess oral secretions, had very high muscle tone, and often appeared sluggish or was sleeping.
While we initially hoped his issues wouldn’t be too severe, as time passed and his medical precariousness and developmental limitations became more and more apparent, I became more and more discouraged. Sitting in the NICU watching the other babies get stronger, move into the intermediate section, and transition from nasogastric feeding tubes to bottles, led to a certain feeling of isolation. I was the mother of the baby who returned to Intensive Care twice after leaving (and indeed was discharged from there!), who needed a G-tube put in to enable long-term tube feeding.
There were a few other weather-beaten mothers with whom I felt a strong sense of solidarity, but with many of the others, I felt a distance because of our disparate experiences.
Tears were a regular part of the hospital experience as well. There’s something about a hospital that’s very un-empowering. All it took was one doctor to say he wasn’t available to talk for me to dissolve into waterworks. But there were many staff members, particularly nurses, who went out of their way to be compassionate and helpful, and I recall them gratefully.
One particular conversation stands out vividly in my mind; it left me with a goal, a destination I knew I wanted to reach.
I was sitting one Friday morning near my baby. I must have appeared despondent when a nurse approached me.
“You’ll see,” she said in a soft, melodic voice. “This will be motherhood, just a different kind. I’ve worked in institutions where there were children who couldn’t talk, who couldn’t even smile, who communicated just with the wink of an eye, but the children whose parents loved and accepted them, they blossomed. Their souls sensed it somehow.”
After that I started crying again, this time for another reason. Her words resonated deeply with me because I sensed they were so true, and yet I cried because I was holding so far from there. I didn’t love and accept my son as he was. I didn’t want him to be this way, and I didn’t feel that I loved him.
But like I said, what she did give me was a destination. I had a place I was striving to reach.
Months later, I was at a support group where the mother of a severely disabled child was relating how for the first six months, she took care of her child like a robot. She did everything she had to do but without emotion.
I understood. I knew firsthand that you could bring a child home from the hospital and get up for him numerous times at night, suction him, hook him up to his feeding tube, take him to doctors and appointments, and even hold him, caress him, and hug him… and feel nothing more than a hired nurse would.
Eventually that would change, and I would come to love this little boy very much, but it was a long process.
A watershed moment for me was one night when he had trouble breathing. As I fiddled with his oxygen, I thought, I don’t want to have to go to the ER now. That was par for the course.
What surprised me was my next thought, I don’t want anything to happen to you, little guy. With that, I knew I’d crossed at least some stretch of this journey of learning to love, not the child I would have wanted to have, but the one Hashem gave me.
(Originally featured in Family First, Issue 748)
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