Reading to my micropreemie son was one of the things that I could do that helped me feel like a normal Mom. It also afforded me one of very few, “first” experiences with my son. Very early on in his life, our family had no idea how we could form a “bond” with our son. One of our NICU nurses suggested reading to our son as a way for him to hear and learn our voices. Reading forged a special bond between us, especially on days we were unable to kangaroo together. Little did I know that this simple, yet powerful experience would inspire me to write a children’s book just for preemie families.
One day while bedside with my son in the NICU, and surfing, “Doctor Google” on my phone, I found an interesting article about the benefits of reading to babies. The article also stated that reading to preemie babies stimulated healthy brain growth and development. This bit of information inspired me so much that I asked family members and friends if they had books in their children’s home libraries that I could borrow and read to my son. After all, we had lots of free time together. I also started reading some of the NICU literature aloud next to my son’s incubator just so he’d hear my voice and to help me share his growth along our journey.
At first, my son’s library started out small with a few borrowed books from family and friends. Then, we purchased children’s books online, many of which were lullabies. After some time, we needed extra space, just for his growing library! From the very first set of books that I read to my son, he gave me a glimpse of his personality. There were books I read that made him gaze into my eyes with pure love and admiration. While other books made him wiggle and squirm with agitation as if to say, “enough already Mommy, I don’t like this book!” There were some books that gave him a little smile, and others made me wonder what he was thinking, feeling, and processing. We even encouraged his visitors to read him a book on days he was inside or out of his incubator. Our visitors felt they were being quite supportive and were very happy to engage in these special moments.
On occasion, I recall feeling a sense of sadness while reading some lullabies because those books were all very specific to full term babies. These books also usually ended with the parents tucking their newborn baby into a crib before falling asleep at night. Unfortunately, this wasn’t our reality for a few months, so I would improvise reading the end of those stories! When I started to search for books unique to our premature experience with a new born preemie baby, I struggled to find any. While there were several books that explained his prematurity from a clinical or parent lens, and there were lots of journal style books for preemie parents to help document his journey, I struggled to find what I was seeking, a children’s book that accounted for the reality of my son living in the NICU before coming home.
Two years after my son’s discharge from the NICU, I wrote and published exactly what I felt the NICU and preemie community was missing! Once Upon A Preemie. A children’s book, written for the parents of preemies who have a NICU stay before going home. It’s written by a preemie family for preemie families. It offers messages of hope, love, and faith, which are the essential ingredients for preemies to grow and thrive in the NICU. Once Upon A Preemie has touched the hearts and minds of preemie and non-preemie families because of the profound nature of describing a NICU journey from the family lens in a soft and poetic way.
Nearly six years later, my son still loves our special reading time before going off to bed at night. We cuddle up and read anywhere from three to five books of his choosing. His home library is just as full today as it was during our time in the NICU. I was shocked at how quickly he memorized his favorite books word for word, and page by page a few years ago, and now he enjoys reading his favorite books to me! I absolutely love this special time together because it reminds me of how far we’ve come on our preemie journey, and just like a charm, reading still helps my son fall asleep quickly and easily. I’d like to credit this to our special bonding time reading together in the NICU.
Here are a few parent tips to start and continue reading to your Preemie during and after the NICU:
For more information about Once Upon A Preemie, please visit www.onceuponapreemie.com
If you need help getting started with finding amazing books to read your preemie, visit the download center and click the section titled, “Preemie Books” for books written by preemie parents for preemie parents:
Download Center- Preemie Books Section
Jenné Johns, MPH is the mother of a micropreemie, author, speaker, and award-winning health equity leader. Her son was born 26 weeks prematurely and spent nearly three months in the NICU before coming home. As an advocate for reducing healthcare disparities, Jenné found herself advocating for the needs of her son, as his survival depended on it. She also learned the power of reading to her son daily. Jenné wrote, “Once Upon a Preemie” one month after her son’s discharge from the NICU as a reflection on their journey home.
Currently, Jenné is a member of the Preemie Parent Alliance, and a board member with Pebbles of Hope. Jenné was featured in Preemie World, Heart and Soul Magazine, Tom Joyner Morning Show, CBS Philly News Radio, Disruptive Women in Healthcare Blog, and Women of a New Sisterhood.
In her professional capacity, Jenné holds a Masters Degree in Public Health from Temple University, and a Bachelors Degree from The University of Maryland Eastern Shore. Jenné currently leads health equity initiatives for one of the largest health insurance organizations in the US and serves on health equity advisory committees. She was recognized as a 40 Under 40 By The Network Journal, Top Diverse Leader Under 50 by Diversity MBA Magazine, and Leader on the Move by the Philadelphia Business Journal.
About Once Upon A Preemie: Once Upon a Preemie is the only children’s book written for the parents of preemies while they are in the NICU. This bedside companion motivates, encourages and inspires preemie babies and families until they go home. For more information visit: www.onceuponapreemie.com