The NICU Journey: One Preemie Parent's Perspective
Nov 17, 2022
Finley is my champion.
When I was 18 weeks pregnant, I was diagnosed with a short cervix—so I knew that I would have a premature birth or a “preemie” baby. I knew that there could be complications, like slow weight gain or difficulty feeding for the baby. I knew that my child might need a longer stay in the hospital after they were born or special medications to help get them on track. What I didn’t know was that Finley would be delivered in a little over a month—only staying inside of me for 22 weeks, nearly half the time that a full-term baby would need. At 22 weeks and 4 days, my little girl Finley decided it was her time to enter the world, and since then, my life has changed irrevocably.
It has been 7 months since I delivered Finley. While we’re home now, weaning her off oxygen and attempting to have her breathe room air, it has been a long journey. We first spent 166 days in the NICU. Finley was born with extreme prematurity, severe bronchopulmonary dysplasia (BPD), osteopenia (bone loss), intraventricular hemorrhage Grade 2 and 4, and necrotizing enterocolitis (medical NEC). She has persisted and defied all odds. Finley is my miracle.
Finley’s care is provided by many different service lines in the hospital. We have worked with neonatologists, neurosurgeons, nephrologists, pulmonologists, and early interventions specialists to increase her chance of survival and her ability to thrive. We just had an amazing check up at the BPD clinic, so I’d say that we’re progressing nicely.
When I think of our early time at the hospital, I think of how scary it was not having all the answers. I remember asking questions, trying to understand Finley’s plan for care or what she was up against. Spending so much time in the NICU was rough for our family and I could feel my mental health declining. My advice to all parents and children going through what Finley and I went through is this:
Ask questions—The care team is there to help you understand what is going on! You will never sound silly or be looked down upon. There is no reason to feel ashamed.
Advocate for you and your baby—Do not let anyone talk you into a plan that you don’t completely understand. This is your baby, and these are your choices. Do what is right for you.
Take time for your mental health— You cannot fill other people’s cups if yours is empty. Take time to go on walks, journal, or talk with a friend. Take some deep breaths and know that you are not alone in this journey.
When people ask me how Finely has changed my life, I smile and think about my little girl. She has impacted me in ways that I could have never predicted. All my decisions are based off her care—down to the smallest of details. I think back to my birthday dinner this year that was small and quiet. In years past, my birthday was celebrated with boisterous music, with all the people I loved by my side, cake, laughter, stories about my past—and that has changed. This year, it was just my mom, sister, and myself. I had to make sure that I was near an outlet for Finley’s pulse oximeter and that the area where we were was safe for her. There are times like these when I am reminded of the things that I took for granted before having Finley and her unique needs.
Since being blessed by Finley’s presence in this world, I have more patience that ever. I have learned that you never know what others are going through, just by looking at them. I have also learned the importance of advocating for myself and my family—even after it’s been a long day, or I feel like I don’t know where to start. There is a long road ahead of us, but along with our team at Nationwide Children’s Hospital, we are prepared to endure this journey.
My daughter has made me a better person even though the NICU journey itself has aged me mentally, emotionally, and physically. She is strong-willed, feisty, and determined; she has beaten the odds stacked against her and she isn’t done yet. Finley is my champion.
Our holiday campaign, “Light Up the Lawn, Light Up A Life,” is helping us find cures and provide the world’s finest care to children like Finley.
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