My daughter, Syona, was born in late September, about a month before her due date. She was considered a preemie by just a few days (preemies refers to pre-term babies who are born before 37 weeks gestation). But Syona had other plans. I woke up on a Monday morning, suspected I was in labour and called the hospital. They asked me to come in, so my husband and I grabbed the hospital bag and headed to our local hospital. It was around 7:30 a.m. By mid-afternoon Syona was born. She was immediately taken to the special care nursery because of some concerns with her breathing as well as a number of other issues (you can read more details here and here).
She stayed in the hospital for two weeks. I met her for the first time almost 7 hours after she was born. I didn’t get to hold her until the next day. It took me a full year to be able to talk about it without crying. In the days that followed we had some ups and downs.
I lived on the three-hour cycle that many preemie moms are familiar with. I couldn’t wait for 9 am to roll around – that was when I got to change Syona’s diaper and hold the syringe that dripped formula into a feeding tube. For the first few days this was close as I got to my daughter. As she got stronger I was able to hold her for periods of time. Called kangaroo or skin-to-skin care, those moments were the most special. I used to hold her until the nurse would come over and tell me that it was time to put her back in the isolette. That’s when my countdown to noon would start. I would follow the same process at noon, concluding with a countdown to 3 p.m. And the cycle would go on. Even when I was discharged I rented a room in the hospital so I could be close to Syona. My home felt far too big and far too quiet. I slept better at the hospital than I did at home.
As the days went on she grew stronger, hitting the milestones she needed to reach to come home. Two weeks later I brought my little girl home.
Now Syona is thriving. She has cerebral palsy and uses a wheelchair and a walker. We celebrate her birthday every year. But about a month later, when her original due date rolls around, I always take a moment and reflect with gratitude on how far she’s come and the fact that she’s here. In the last couple of years as she's grown up, we've explained the meaning of the day to her and often celebrate it with cake!
World Prematurity Day on November 17th allows all of us to take a moment to think about premature babies and their families. It's about thinking of the supports premature babies and the families who love them need. It's about raising awareness about these needs. It's about celebrating our children and ourselves and ensuring those who follow in the same path are surrounded by a community to help them navigate their journey.
Anchel Krishna is the Director Strategy, Communication and Engagement at CTN, mom to Syona and Nalina.
Check out CTN's online resource centre for more information about cerebral palsy. Visit the Canadian Premature Babies Foundation to learn more about support for preemies and their families. If you'd like to meet other parents of kids with disabilities be sure to take a look at our event calendar.
Catulpa - (FFS) Mindfulness Resources for Families, Caregivers, Teens & Children - Online
The purpose of this session is for information sharing and to inform caregivers where to look to find resources for themselves and their family to start using Mindfulness as a daily practice.
Kinark - Transition to Adulthood - Online
Kinark’s free Transition to Adulthood sessions help to educate parents and caregivers on the services and supports available once their child turns 18.
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