My first son, Isen, was unexpectedly born at 24 weeks gestation, weighing 1 lb 5 oz. In part one of my story, I shared about his shocking, early arrival and his lengthy stay in the hospital.
Isen finally came home to sleep in his own crib after 5 1/2 months in the hospital. He came attached to a cord and an oxygen tank, but we really didn’t care about that. We were so happy, grateful, and relieved. Many nights on our drives home from the hospital, we had pondered if we would bring him home, if he’d ever sleep in the crib we’d purchased, if he’d ever see sunlight streaming through a car window.
We drove home from the hospital with our little survivor and we were so, so happy.
He came home with a lot of uncertainty. Isen had experienced periods of oxygen deprivation due to his fragile, weak lungs. He had severe brain bleeds at birth. His doctors explained that some babies with Isen’s medical history go on to live a relatively normal life. Others have severe disabilities and everything in-between. We would have to wait and see as he hit (or did not hit) his milestones. While that waiting may sound terribly stressful, it really wasn’t.
We were busy, raising a baby that we loved, and there was so much joy.
We cheered at those first wobbly steps. We laughed at those adorable first words. We celebrated milestones we hoped and prayed we’d get to see. I quite literally jumped up and down with joy the day (almost a full year after he came home from the hospital) the giant oxygen tank was removed from our house.
The most difficult part of our post-hospital life was protecting Isen from illness. Isen’s lungs were incredibly fragile. The doctors warned us time and time again that a simple cold could be disastrous, even life-threatening, in these first years. We were terrified.
While pregnant, I had always pictured myself strolling around a nearby park with a sleeping baby in a stroller or meeting a friend at the zoo with my new bundle of joy. But the harsh reality was that I could not do any of those things.
We could not risk exposing Isen to all the viruses out in the world. During his first winter, I never left the house with Isen except for doctor’s appointments. We cancelled holiday plans. We declined virtually all invitations.
Despite our best efforts, not all illnesses could be avoided. Over the past six years, I’ve watched Isen’s heaving chest when he cannot breathe because of a cold. I’ve taken a late-night ambulance ride to the hospital when a seemingly mild virus took a bad turn. I’ve laid sleeplessly on the small cot next to his hospital bed and watched him sleep, re-attached to his oxygen, during the four hospitalizations we have endured due to lung complications. We altered our lives in massive ways to keep Isen as healthy as possible. It was absolutely the right decision.
Less than two years after Isen’s birth, we welcomed his younger brother, Bowen (thankfully at term, not premature!). At ages six and four, our boys are starting to understand that Isen has some differences from most other kids.
We describe Isen’s differences as his “battle scars” from his fight for his life.
Isen’s lungs remain battle scarred. The ventilator which saved Isen’s life also scarred his lungs with each puff of air. Isen has reached an age where he needs to be out in the world. His breathing problems are improving with age, but we still face the winter months with trepidation.
Another “battle scar” Isen bears is mild cerebral palsy. Isen is independently mobile and gets around quite well. His gait is unique due to spastic (tight) muscles. He lacks balance and doesn’t have the physical skills of a typical six year old. When his younger brother wonders why Isen still trips and falls or why he can’t ride a bike without training wheels, we explain that Isen has some scars from his brave fight to survive.
I’m sure there will be times in Isen’s life when he’ll struggle with feeling different. Well, he is different! When others were peacefully sleeping and growing in their mama’s bellies, Isen was fighting for his life with his paper-thin lungs and his bleeding brain. My Isen is tough as nails and he’s got scars to prove it.
Scars are a physical reminder that we endured something painful, but we survived. Scars are a reminder of resilience and healing.
Have you ever noticed how people show off their scars with pride? We are quite proud of Isen and his battle scars. We hope that someday he will be too.
Isen’s birth was traumatic and terrifying, but it gave us the child God intended for us to have. A child who, unable to ride his new bike due to cerebral palsy, watched his younger brother peddling around the cul-de-sac and shouted with complete, unadulterated joy, “Wow, Bowen! You are going SO fast!”
So three cheers for Isen, my one pound Iron Man. I am so lucky to have him. I am ever so proud.
November is Prematurity Awareness Month. For more information on prematurity prevention or March of Dimes’ Prematurity Campaign, click here.
Originally published November 2018.
The opinions expressed in this post are those of the author. They do not necessarily reflect the official policy or position of ABQ Mom, its executive team, other contributors to the site, its sponsors or partners, or any organizations the aforementioned might be affiliated with.
Wow, Paige, this is such a beautiful story, and so wonderfully written. Thank you for what you shared!
Thank you! I’m so glad you liked it. I’m so proud of him.
Thank you for sharing your beautiful story. I know how hard it is to relive NICU stories, and this is beautifully written!
Thank you! It was very hard to write. There were many tears, but it felt good to write about it!
This was amazing! And you’re an amazing mom Paige! I loved your story. Thank you for sharing.
I knew I would pull on the heartstrings of my fellow NICU mamas, haha! Thank you so much.
I am in awe of how strong you are Paige! It was so brave of you to write such an insightful article about such a challenging time in your life. Thank you God for the real-life amazing Ironman, Isen!
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