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I want my children to understand their NICU experience, so I wrote a book to help them

Ryan was born at 24 weeks and 3 days after mum Jennifer spent two weeks on strict bed rest. They had no idea what lay ahead but knew the birth was only just the beginning.

This is Jennifer’s story:

“I was 22 weeks pregnant. It was a normal day at home, playing and running after my daughter 2yr daughter Charlie. I grabbed a minute to take a shower and whilst on the toilet, felt something felt wrong. There was no pain, symptoms or warning, but I knew something wasn’t right. Paralysed with fear, I spent the next 20 minutes coaxing Charlie to find my phone and bring it to me so I could call an ambulance.

After reaching the hospital, I was placed on total bed rest, laying slightly elevated. I would stay this way until our baby was born. Our beautiful family gathered around us but as the days went on, my husband had to return to work and Charlie had to attend daycare for the first time. I felt completely helpless and guilty for not being a good mother for my daughter all along knowing that I was doing the right thing for my son. I longed for the daily visits from my family and would cry as soon as they left.

Before our baby was born, all the complications that could arise from his prematurity were explained to us so we knew his birth was only the beginning. 16 days later, Ryan Patrick was born at 24 weeks and 3 days gestation, weighing 648 grams. It was the scariest day of my life. He was baptised the next day at his bedside.

Being discharged from hospital and leaving behind our son was excruciating, yet I was going home to be with my family which I was happy about. I soon learnt the heart-wrenching reality that, what was good for Ryan (being by his side, helping where I could) was not good for Charlie and what was good Charlie (me being at home and giving her full attention) was not good for Ryan. The guilt was thick and heavy.

Weeks went on and every day felt like Groundhog Day. Charlie and I would get up to the hospital early in the morning, come home at lunch for Charlie to have a sleep, then head back up in the afternoon and wait for Stephen to arrive where we’d spend half an hour together as a family. Stephen would have his time with Ryan (after working all day) and I’d take Charlie home to bed. It was utterly exhausting both physically and mentally. It was as though we were robots, simply just getting by.

On Day 19, I was able to hold my son for the very first time. It was incredible. That day gave me a renewed sense of hope that Ryan could make it through.

There were countless sleepless nights and dashes to the hospital in the middle of the night after the dreaded phone calls informing us “He might not make it through”.

Ryan fought off numerous infections, nearly lost his ear and flatlined more times than I could count. But on day 105, we left the hospital with our little miracle.

Ryan’s lungs were not being fully developed, so we took him home on oxygen that he needed to be on 24 hours a day, which was scary. Being fully responsible for Ryan at home without the machines and beeps to tell us when he wasn’t breathing correctly was terrifying. He was also still very small (but very cute!)

Ryan is now a healthy, happy, stubborn, and gorgeous 8yr old boy and apart from being a little smaller than his mates at school, he has no ongoing health concerns – which is an absolute miracle! He loves cars, is a total animal lover and is currently obsessed with handball. He is shy, loving and cheeky and more than anything, he is a fighter.

I was inspired to write my children’s book My brother lives in a Box for families with siblings of premature babies in mind. It’s a scary time for the whole family and I wanted to create a story for my own children that connected them through that time of their lives in a way that was fun by turning the scary humidicrib and NICU environment into an adventure. The ‘box’ becomes a place for adventure by becoming a rocket, submarine and more!”

Jennifer hopes to launch her book soon and is working with us at Life’s Little Treasures to make that happen. Stay tuned!


Share your story

Have you found comfort in reading other parents’ stories? We get lots of grateful feedback on how reading these personal stories help new parents to cope with their own experience. Every family has a unique and important story to share. Share your journey and celebrate your story below.


Rebecca Strahan

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