Session 3
We brought our Mayah home from the NICU at the beginning of Spring, just two days after Easter. It was still cold and viral season was still in full swing. We were terrified of exposing our daughter to germs, so much so, that we pulled our oldest daughter out of preschool so she wouldn’t bring an illness home.
That fear kept our little Mayah home and isolated for too long. Other than doctor appointments, we kept our medically fragile baby at home. If we needed to attend something, either my husband or I would go alone so the other could stay home with Mayah.
When we left the NICU, we believed that her doctors felt there was nothing more they could do for her that we couldn’t do from home, so they allowed her to be discharged to live out the remainder of her presumably short life surrounded by her family. There was still so much uncertainty, and it clouded our decisions for a long time. We were terrified—and rightly so. Our daughter had coded in the hospital a month after bringing her home when a bacterial infection sent her into respiratory distress. The staff had to perform chest compressions to bring her back. How could we not live in fear?
A few months later, on a pleasant June afternoon, we drove our girl (with all of her medical equipment) to a local park to walk the paved paths with her stroller. I can’t put into words the joy it brought us to finally put some of that fear away and let our daughter feel the fresh air on her face. She had been medically stable for a couple of months, and we mustered up the courage to live life that day.
It was just a momentary breakthrough and the following month, our girl was admitted to the hospital three more times. The fear returned to my heart. We did venture outside many times that summer to escape her home hospital room but traveling with our trachie was still an obstacle we weren’t ready to tackle. At least, not until her brothers’ football season started.
It was the first weekend in September and the weather was particularly pleasant, so we decided to load up all of Mayah’s supplies (the vent, feeding pump, suction machine, emergency supplies, formula. . .) and allow our daughter to make her first real public debut at a football stadium. We steered clear of the bleachers and the crowds and made ourselves a little nest near one of the endzones to watch our oldest son play. It was a success and we left feeling confident that we would find a way to live out our new normal.
You know, I couldn't tell if you if my son's team won the game that evening, I truly don't recall, but I know our family declared the night a victory!
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