Just before midnight on May 22nd, I walked into the David Schiff NICU to visit my daughter for the very first time. I gingerly perched on the edge of the chair next to her bassinet and took in a grave scene. Just 18 hours earlier, I had cuddled and kissed my plump, pink and screaming newborn daughter. Now I barely recognized this dusky and sedated baby in front of me. She had numerous lines going into her little body, and a tiny nasal cannula sat just under her nose providing her oxygen. Three little stickers were placed on her chest and attached to a monitor above her. I would come to realize that the beeps and alarms from all these machines would literally rule my world. And this strange, sterile new place would begin to feel like home.
Four months earlier, we had arrived at our 20-week ultrasound eager to see pictures of our third child. Just a week and a half later, our life was turned upside down when our daughter was given the diagnosis of a critical and rare heart defect called Truncus Arteriosus. Her two main arteries had failed to form, and once she entered this world, her little heart would be unable to provided oxygenated blood to her body. Without open heart surgery, her prognosis was only weeks to live. We were devastated and spent many days mourning the life we had envisioned and fearfully anticipating our new future.
After recovering from the shock of her diagnosis, we spent those months before her arrival devouring anything we could find online: studies, blogs, social media accounts. We searched for any reassurance that she would be okay. We also prepared our family and household for the storm ahead: lining up childcare for our two boys, meals, dog walking, even grass cutting. By chance, we were fortunate to meet another family that had been in our exact situation nine years before. This Heart Mom provided me a wealth of information about the battles ahead. As her son stood before me, healthy and smiling, I turned a corner. We now felt a great deal of hope for our future.
In the grand scheme of things, our NICU stay was brief, spending six days prior to Isabella’s surgery and then another five days after recovering in the PCICU. But our return to the NICU felt very much like a homecoming. Isabella was so well cared for, as was our entire family. Our boys felt so special at visits as the nurses included them in her care. I was cheered on when I struggled with pumping and given hugs when I felt completely overwhelmed. Each nurse is remembered for a small moment that changed our day and our perspective.
Our NICU experience was challenging, emotional and raw. We absorbed many heartbreaking moments and felt overwhelmed for other families as we watched their struggles. But from the moment we received our daughter’s diagnosis, we chose positivity. With each setback we encountered, we searched for something to be grateful for. The best piece of advice we received was from a fellow NICU Mom: “This is a marathon, not a sprint.” We made time for self-care, even if self-care was having a shower or sitting down to eat. We spent time with our boys. They were our relief from the sadness and fear we felt on the bad days. We celebrated the wins, the milestones, and the steps forward.
Today, Isabella is a giggly, animated and strong-willed 3-year-old. At times, it’s hard for me to connect that image of my NICU baby and the busy little toddler that stands in front of me today. We continue to visit the Stollery for check-ups, procedures, tests and open-heart surgeries. But we have gained an appreciation for the normal life we experience in between and how far Isabella has come. Her first few months of life would not predict her future.
Kristi – Isabella’s Biggest Cheerleader, NICU & Heart Mom
