I remember the first time I met Charlie.
The NICU was dark with only the glow of computer monitors and bili lights to illuminate the way. There were nurses, doctors, respiratory therapists, and x ray techs weaving between rows of isolettes and scurrying in every direction. No one noticed my arrival by wheelchair. The air was filled with the sound of loud alarms from monitors, the hum of respirators, and the chirping of isolettes that warned of cold babies.
Among the clamor and the chaos, my twenty six weeker born weighing 790 g rested peacefully in her glowing isolette.
My husband wheeled my wheelchair up to the side of her isolette. I gingerly rose out of my wheel chair, gently placed my hands on the plastic walls that serparated us, and peered in. It was only seconds before my hands covered my face and I collapsed into the wheelchair sobbing.
This was how I met my baby… two days after her birth. It was as if a raging storm had rolled in and ruined what were supposed to be the sunniest days in my life. My world had been shaken to its core.
For two weeks, I bawled beside her isolette. I was heart broken. I was angry. I was sad. I was scared. I was a lot of things.
But, it did get better.
Slowly, she grew. Eventually, she was transferred to a private room NICU. Finally, after three months, she came home.
I was foolish enough to believe that her homecoming was the end. I had no reason not to. However, it was merely the end of the beginning.
There were readmissions and missed milestones. Then, came the diagnoses: CP, a feeding disorder, sensory processing disorder, failure to thrive, and a speech delay.
I felt like we had never left the NICU. We were stuck on the proverbial roller coaster.
Despite everything, she thrived. She’s bright. She’s joyful. She amazes everyone.
In the beginning, I started writing because the loneliness was unbearable, the silence was deafening, and the hurt was crushing. I wrote to connect, to vent, and to feel better.
I continued to write to celebrate the victories and deal with setbacks. I needed to tell our story to all the other families who struggle after a NICU discharge. Up until our post NICU lives, I had only heard the stories of the babies who didn’t make it and the ones who caught up quickly and easily by two.
While there are still challenges in our future, I’m ready to move on. The storm that rocked our world with such ferocity is now passing. I no longer wish to write about preemie life. I want having a preemie to be something that happened to me, not my identity. There is so much more to me than being a preemie mom.
The feelings of loss are still tangible. I continue to have good days and bad. However, I’ve settled into what has become my life.
I’ve found my people and my place. I’ve discovered what I need. I’ve learned to navigate the system and how to fight for services. My world is different than what I had planned but I love it nonetheless.
For those of you who struggle as I did, know that, for me, the storm subsided as quickly as it began. Now, I can finally (32 months later) see what comes next and it is incredible.