Hand to Hold's Official Blog: Written by Parents for Parents

The Quiet After The Storm Of A Premature Birth

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.

2012-06-01 001 001Among 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.

100_1300The 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.

 

Rebecca Wood About Rebecca Wood

Rebecca Wood (VA) is a micro preemie mom. Her daughter, Charlie, was born at 26 weeks, weighing 1 pound 11 ounces due to severe preeclampsia. She has a few long-term issues due to her premature birth including, motor development delays, vision concerns, feeding difficulties, and speech delays. Since Charlie's birth in May 2012, Rebecca has been learning the ropes of the post-NICU world. In addition to embarking on fun adventures with her daughter, she's an animal lover, a reader, a hiker, and an enthusiastic volunteer. You may connect with her on Facebook, Twitter or her personal blog.

Comments

  1. Absolutely amazing.

  2. What an honest and thoughtful look at the reality of prematurity and how it affects families long after the NICU. It’s so true – leaving the NICU is just the end of the beginning, but not the end of prematurity. Thanks for sharing!

  3. Thank you for sharing your thoughts. Your story is so relatable. It is ok to be strong and vulnerable.

Trackbacks

  1. […] A quick check in since I haven’t posted for quite a while. Charlie’s third birthday in May is slowly approaching. I’m starting to wrap up things up and prepare for Charlie’s transition out of Early Intervention. Additionally, I’ve written my final post for Preemie Babies 101. […]

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