October 20, 2010 is a day I will never forget. Why? Because it is a day that is supposed to be a milestone but isn’t.
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). If I could have finished out that work week she wouldn’t even be considered a preemie. 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. In the moment, our delayed meeting was devastating. It took me a full year to be able to talk about it without crying. But now I consider myself lucky, as I know a number of moms who didn’t hold their babies until they were much older. 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 5-pound girl home.
Now Syona is a thriving five year old. She has cerebral palsy and uses a wheelchair and a walker. We celebrate her birthday every year. But about a month later, when October 20th rolls around, I always take a moment and reflect with gratitude on how far she’s come and the fact that she’s here. Despite the fact that the date is meaningless, it is one that I will never forget. World Prematurity Day on November 17th allows all of us who are part of the preemie parent club to remember what being the parent of a preemie means.
Anchel Krishna is the Communications Manager at CTN, mom to Syona and writes a weekly Special Needs Parenting blog for Today’s Parent.
Check out CTN's online resource centre for more information about cerebral palsy. If you'd like to meet other parents of kids with special needs be sure to take a look at our event calendar.