Ten years ago, having made it through fertility treatments and a threatened miscarriage, I was finally allowing myself to be excited that we were a little over halfway to our anticipated due date. We didn’t want to know if we were having a boy or a girl so, when I went into premature labor at 35 weeks, we were surprised to see our little girl! Quickly after, we were even more surprised that she was struggling to breathe. Our daughter, Rebekah (Bekah), was whisked out of the room and transported to the Akron Children’s Hospital NICU at St. Elizabeth in Boardman. After hours of struggling, even on a vent, Dr. VandeKappelle, a pediatric cardiologist, informed us that our sweet, five-pound girl had two gaping holes in her tiny heart. She would need open heart surgery.
Bekah was transported to Akron Children’s NICU in Akron to help increase her care. She spent 70 days in the NICU. She came home for about 6 weeks to grow as much as possible before her open heart surgery on March 6, 2012. At just 4 months old, she Drs. Smith and Spector repaired her congenital heart defects – ASD, VSD – and performed a PDA ligation.
Today, almost 10 years after her birth, it seems strange to look back and think of all that we “planned” for her before we’d met her. I never would’ve expected her to play hockey, be a catcher on her softball team, love ballet and acro classes, touch the bottom of a 12-foot pool during swim lessons, and be an awesome big sister to Sam and Alma. But, here she is, doing all of that with just a faint zipline scar on her chest.
Bekah was later diagnosed with Duane syndrome (missing a nerve that helps control eye movement) and torticollis (she worked through this one with a LOT of therapy), so we visit Akron Children’s a few times a year for annual checkups with Dr. VandeKappelle for her heart and Dr. Lawhon for her eyes.
In the early days, I used the Mommy Blog to help keep friends and family updated but, more than that, I used it to help myself work through all the emotions that came with having a baby with unexpected health issues. I was also surprised to hear from other parents who read our story and connected in a variety of ways – from gaining support to offering support. The Mommy Blog became a way for me to experience things with the broader Akron Children’s community.
Our experience with Bekah prepared us, in many ways, for her siblings’ health issues – Sam has asthma and food allergies and Alma stopped breathing periodically as an infant. It’s also taught us to trust our doctors, nurses and instincts. It has given us the chance to become involved in some incredible moments, too, like being part of the Mommy Blog, participating as a patient family in the Akron Marathon, making awesome college friends with Youngstown State Dance Marathon, and so many others. Most importantly, Bekah has taught us that every moment, especially the common and otherwise mundane, are moments to be treasured.