Looking at him today, you would never believe his story. The only physical evidence of his time in the NICU are littles scars, one on each side of his chest, where the chest tubes once were. I love those tiny scars on his soft skin. They remind me of where we once were and the people who got him – and got us- through it. It reminds me of how hard he fought and how hard we prayed.
September is NICU Awareness Month. Last September, this had no meaning in my life. I was eight months pregnant and counting down the hours until the end of October. I was trying to decide which of the three Halloween costumes my baby boy would wear first. I was spending my spare time building his big sisters’ Halloween costumes to coordinate with how I would decorate his stroller for my favorite holiday. We were over the moon that a little boy would be joining our family. I knew he would change our lives, but I never could have predicted the way he would change my perspective. He opened my eyes to a world I knew nothing about. This September, being a NICU mom has immeasurable meaning in my life. While this is the month that acknowledges the place I love so deeply, every day of my life over the past ten months has been my “NICU Awareness.”
This was my third pregnancy. When my daughters were born, I had the luxury of taking them home the day after they were born. I was spoiled in spending my time snuggling them in adorable onesies and feeling exhausted during late night feedings. As excited as we were, I couldn’t shake the feeling that this time was going to be different.
I entered the delivery room on a Tuesday morning. It was the week of the World Series. My husband had played college baseball and I remember telling him that night he would be holding his newborn son watching the game. (This was just another example of what I had taken for granted in the past – holding my babies as soon as they arrived.) Before I entered the NICU on that October day, I took so much for granted, as much as I hate to admit it.
As soon as our sweet baby boy was born, he struggled to breathe. He was perfect in every way, full-term and a healthy eight pounds, but he just couldn’t breathe. A NICU team was paged into the delivery room and they wheeled him away to the NICU. My husband followed them as I had to stay behind, a new fear I had never felt before was taking over. This was not the way it was supposed to go.
I was wheeled into the hospital’s Level III NICU. I was confused and overwhelmed, and I didn’t understand what people were saying, but I specifically remember a feeling of calmness the moment I met his NICU nurses. My baby couldn’t breathe, the most basic thing a mom could hope for her child to do, but they were making sure he had a way. At the first shift change, his next nurse told me our daughters were in the same class. I remember that moment being the first time I heard and understood words that were being said to me. She asked me if it would be okay to give him a pacifier. She said she knew I was a speech-pathologist and that I might have a strong opinion about them. I remember crying and nodding yes, I would love for him to have a pacifier. It meant he could do at least one thing like all the other babies. It meant she was asking for my opinion since I was the mom, even though she was the one helping to save his life. It meant she was thinking about a long-term habit, while I couldn’t think past the next minute. Somehow these NICU nurses knew just what to say and how to say it.
During his first 24-hours, my sweet boy’s condition went from bad to worse. He was intubated, had one collapsed lung followed by the other, which resulted in his heart moving to the wrong side of his chest due to air filling spaces it shouldn’t. I remember sitting in my hospital room, staring at his brand-new diaper bag. Everything inside it was new and fresh and ready for our baby boy. He had a beautiful nursery at home with everything I thought he would need. Instead, what he really needed, was a vent to breathe and tubes in his chest and tubes to be fed. He needed the physicians and nurses who knew exactly how to fix him. I needed them, too. During every moment of his care, I knew he was exactly where he needed to be.
I spent 16 days praying as I had never prayed. I watched other babies being wheeled into the NICU and I prayed for them, too. One thing is for sure – there is no fairness in the NICU. I watched the physicians work around the clock. I watched nurses give each and every baby the most diligent and compassionate care I had ever seen. They gave everything they had to the tiniest, most fragile humans who couldn’t convey what hurt or where. I sat next to his warmer, in awe of everything happening around me. This windowless room gave me a front row seat to witness miracles collaborating with science. I never wanted to be there, but once I was, I couldn’t imagine going back to the life before I knew all of this. During those 16 days, our baby was their baby, too. His story is not just our story, it is their story, too.
The moment we received the news we would be taking our baby boy home, I let out a sob. I had waited 16 days to see him without tubes and cords and machines. I had waited for the moment I could load him in his car seat. I had waited his entire life to take him home, but now everything would be forever different. He had two big sisters who could not wait to have their baby brother home. My mind could never go back to the pre-NICU days, and honestly, I wouldn’t want to. This perspective is deeper. When we carried our baby out those NICU doors, I promised myself I would never forget what the men and women behind those double doors did for us. When you leave the NICU, it doesn’t leave you.
It has been ten months since we left the NICU. I think of the NICU staff literally every day of his life. I sometimes hear the beeping of the machines in my dreams or I wake up in the night just to look at him to remind myself he is here, not there. I think of the babies I saw, wondering where they are now and how they are now. I think of one baby girl in particular, every time I see an elephant, as I know that was the theme of her nursery – the nursery she never got to spend a night in. I think of her when I take milestone pictures. I will think of her at his birthday parties, my heart wishing there was a place setting for her there, too. At her funeral, I watched the way the NICU staff filled the pews, having given her extraordinary care for months and a profound love I only wish every baby could have. The NICU made my heart feel deeper. Within the NICU, you will find the greatest happiness and the ultimate heartbreak.
It’s unrealistic to think anyone could understand such an experience and such a place unless they lived it. NICU Awareness Month will likely only hit home to those who have known it. My friends who were moms of NICU babies, they supported us and loved us and showed us day in and day out. The NICU mom tribe is a tribe I never wanted to be a part of, but the camaraderie is inexplainable.
I have a deeper sense of gratitude for healthy children. I am a better pediatric therapist now, as I now know the feeling of worrying about developmental milestones. I am a better friend now, as I now have an empathy I couldn’t have had before.
I hope NICU Awareness Month can result in actual awareness. I hope when we hear a friend’s child is in the hospital, we drop off a gift card or make a meal for their return home. I hope when a friend must drive home with an empty car seat, we let them know we can help drive them home or come over to talk. I hope we can donate more to help our communities have the equipment that is needed for NICU and pediatric floors across the country. There is so much to be aware of in a world I previously knew nothing about. To those who have dedicated their lives to helping the most delicate patients, NICU parents are forever grateful for you