The memories of our time in the NICU flood back to me unexpectedly. I remember one particular moment when I was watching a scene from a show called This is Us, where the characters were navigating their early days with their newborn son who was born prematurely and in the NICU. It hit me hard, and I found myself sobbing uncontrollably. Other moments arise when I see images of newborns—so vulnerable and serene, surrounded by tubes and monitors. Just today, I stumbled upon a photo among a collection of family snapshots: the very first time I held my daughter, Lily.
Most days, I convince myself that I’m managing well enough to discuss our NICU experience without succumbing to tears. Yet, I often realize that moment of complete acceptance may never arrive. Being a NICU parent is often a solitary, bewildering, and frightening experience, and it’s crucial that we share our stories. To all NICU families out there, remember that you are not alone.
Our Early Days as a Family of Four
I want to take a moment to recount our early days as a family of four. The first time I laid eyes on Lily, I was permitted to gently hold her tiny hands and touch her delicate feet. My older daughter, then two and a half, was allowed to grasp Lily’s finger—such a stark contrast to the joyful sibling moments I had envisioned. I could do no more; any significant movement risked disrupting the delicate care required to protect her brain health.
Following a traumatic delivery where the umbilical cord was wrapped around Lily, I was whisked away for emergency surgery. When I regained consciousness, she was absent. Piece by piece, I learned that she had been born unresponsive, revived by a dedicated team of nurses, and immediately taken to the NICU. All I could do was wait.
During my recovery from major surgery, my husband and daughter, often joined by my mom and brother, would visit Lily. We tried to maintain a sense of normalcy as we admired her sweet, albeit swollen, face from the morphine. My mom took a week off work to support us, yet I felt guilty that visitors came to see me rather than meet Lily. It was hard to grasp that their presence was to comfort me, not just to see our baby. I apologized continuously, believing I was handling everything just fine. But I wasn’t.
As soon as my husband and daughter left, I would often collapse in tears on the floor. The loneliness was overwhelming, and I longed to nurse Lily, to be close to her. I would sit beside her until fatigue overtook me, sometimes dozing off in the chair next to her crib. I would return to my hospital room just to catch a few moments of sleep before heading back to nurse and pump. I felt physically and emotionally drained, yet I kept convincing myself I was managing. I was not.
I vividly recall telling a story in my hospital bed, convinced it was humorous—only to burst into tears at the end. My closest friend sneaked into the hospital to sit with me, bringing ice cream and letting me cry without judgment. The nurses would sit with me, offering comfort and ensuring I wasn’t alone during the late hours with Lily. I hope they knew how thankful I was, even if I never expressed it.
Facing Setbacks and Finding Support
We faced various setbacks that left me feeling defeated. Once home, I dreaded the long nights filled with anxiety, frequently checking on Lily to ensure she was breathing. A nurse had warned me that I might experience post-traumatic symptoms, but I didn’t fully understand what that meant. It took me a year and a half to recognize that my feelings were normal and that I needed help.
Today, I am finally sharing the thoughts I’ve wanted to express since Lily was born. To all NICU parents: it’s perfectly okay to not be okay. You are not alone. Reach out to one another, lean on each other for support, ask questions, cry, express anger, and write about your experiences. You are resilient, and you are doing an incredible job.
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Summary
This heartfelt account reflects on the emotional journey of navigating life as a NICU parent, emphasizing the importance of sharing experiences and seeking support. It acknowledges the challenges faced and reassures other parents that they are not alone in their struggles.