Premature Awareness Month And My Daily Reminder

It’s November. I don’t need to be reminded of Prematurity Awareness Month because, to me, every day is a reminder of prematurity.

For so many of you, your times of prematurity ended the day your baby came home from the NICU, but you remember those days like they were yesterday. They might as well have been, because the smell of Purell, the beeping of the monitors, the swing of a rocking chair, it all brings you right back.

It was the club we didn’t want to join, but we all instantly became professionals. We knew terms like ROP, IVH, sats and NEC. We couldn’t wait to kangaroo care with our infants because that was the only time we actually got to touch and stare at them without a plastic Isolette coming between us.

The nurses—you nurses, you all became our friends. Our confidantes. Our lifelines. I called you every few hours (the hours when it was not possible to be standing vigil beside the Isolette). I called to check on his oxygen, his blood gases, his weight. You never yelled or sounded annoyed. You were always caring.

The time my son pulled out his tube from the ventilator and you called a code. “Here we go again,” you said trying to remind me that he would be fine. But you see, I was never there to witness the code. I had only heard about it. I was shoved out the door and thought my son was dying, until you came out to ask me to come back in. I cried on your shoulder as you reminded me of the NICU mantra: One step forward; two steps back.

So yes, I remember those days all too well because my son was there for six months, 180 days. Wires and tubes and ventilators became a part of our everyday life. And then he came home.

He came home, but the NICU came with him. He had a tracheostomy, O₂ tanks, sat machines and a ventilator. He had a feeding tube and a feeding pump. The blue stretchy tape that held his monitors on in the NICU, those too came home with us. The smell of Purell didn’t leave our brains, and the beeping of the monitors became background noise at home.

Prematurity didn’t stay in the NICU because until he was 3, we were in early intervention. Nurses and therapists were in and out of our house working on strengthening and feeding and speech. I never thought he would clap or walk—until he did.

Late.

I never thought he would breathe without the oxygen or a trach.

Until he did. Two years later.

I never thought he would talk or eat.

Our lives have been full of therapists and specialists and doctors for 12 years. There are times I want to cry. There are times I do cry. This wasn’t supposed to be my life. No, my son was supposed to be healthy and developing typically. He was supposed to have a twin brother by his side. That his brother was too sick to survive is a reminder of prematurity to me every day.

I do not need November to remind me because I have the living proof right next to me of what prematurity can do to a child. My son, my miracle child will always have the label of prematurity tied to him, but it does not define him. It’s what made him who he is today. It’s what made me the mother I am today.

It made him strong, and it made me brave.