Brenda's Corner: World Prematurity Day 2021

Premature baby in the NICU hooked up to a CPAP machine

My first child was born right on time on a Sunday night weighing, 10lbs 3oz. By Tuesday evening, my husband and I were back home with him, staring at each other, wondering what the heck we do now. It was scary, and we had no clue what we were doing, and we felt overwhelmed and underprepared.

My preemie journey

However, that fear was nothing compared to what we experienced when our second son was placed in the NICU after being born prematurely at 29 weeks and five days because of a twin-to-twin transfusion. We had no idea what to expect when we entered the unit, and the first thing that hit me was the constant sounds of alarms and bells and the muffled cries of babies in their isolettes. They tell you not to look around and keep your eyes away from the other babies, but that is nearly impossible to do when you are like a deer in the headlights. I mean tiny babies, some weighing as little as 550 grams, hooked up to machines and IVs with nurses everywhere.

My NICU journey

Having a premature baby was something I had never thought would happen, and I didn’t even read those chapters of the parenting book, and honestly, even if I had, it still would not have prepared me for what that experience truly looks and feels like. The utter feeling of helplessness because your child is so fragile and small, or very ill but unable to comfort them—the worries of the “what ifs” sink in almost immediately. Pre-term infants are at risk of brain bleeds, GI issues, infections, disabilities, and much more, all of which are often explained to you as part of the “onboarding” that takes place as you arrive at the NICU, and then subsequently each time something happens. It can also be a lonely place, where you spend 8, 10, 12 hours or more each day, not wanting to leave for fear of missing something, and then sleeping with one ear open in case the phone rings.

My PTSD journey

The journey is a series of one step forward and two steps back and can take place over weeks and months until one day you get the great news that it is time to take your baby home, and then a new wave of panic sets in. The transition is tough, and while you should be so excited to be able to leave the NICU and begin life at home, you worry about not having the safety net you have come to rely on and the place you called home for so long. It comes with elements of PTSD for parents who, long after discharge, can be triggered by the smell of a particular soap or the sound of a monitor. I will never forget these things and still get hit with any time I am in a hospital setting. And, of course, discharge also comes with a new set of worries. How will your preemie handle life in the real world as they catch up on milestones? How to protect their immature immune systems? Perhaps in some cases, they need many follow-up appointments to deal with premature issues that may be present.

My advocacy journey

I tend to talk more often about Maclain’s disability diagnosis and our experiences with accessibility and social justice and Cerebral Palsy, and not so much about his preemie journey, as it seems so long ago. Yet, so much of that experience shaped the way I parent and advocate and provides a real reminder of how fragile life is and how having a healthy full-term baby is a miracle.

World prematurity day 2021

On World Prematurity Day, I send my gratitude to the staff who keep our preemies alive and care for them so expertly. I send love to all parents who have spent time in the NICU and have shared the journey of having a premature infant. And I send high fives to the preemies who are thriving and kicking butt and making huge strides after such a rough start! Thank you for joining us for this edition of Brenda’s Corner. Please continue to follow her family journey for advice, insights and education related to parenting and empowering children of all abilities. Any questions? Contact Brenda directly at Read more of Brenda’s Corner: Brenda’s Corner: World Cerebral Palsy Day



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