Infinite Miracles: Life as a NICU Mom

by Katie Simons McCarty

Katie went into what she thought would be a routine, 20-week prenatal appointment to update her on a healthy pregnancy with a special highlight: the gender reveal. Instead, she received shattering news that her baby had an omphalocele, a condition in which a baby's organs grow outside of its body, covered only by a thin, transparent layer of tissue. An omphalocele can often mean the baby has serious chromosomal or congenital abnormalities.

Katie shares her difficult pregnancy journey, the traumatic time in NICU, and the challenges of life with a medically complex baby in her memoir, Infinite Miracles. This is an excerpt of her memoir about being on the Labor and Delivery floor without her son while the other new moms are with their babies.

Thank you to Katie for sharing this excerpt with us!

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I delivered Tim on Monday, January 12, 2015. I have pictures of me on the NICU floor, visiting Tim sometime during the day of his birth but I can’t remember being there; it was likely all the pain medication that made me forget many hours after Tim’s birth at 8:34 AM. Tim had his “silo” surgery about 3 hours after he was born. I don’t remember being with him before his surgery, but I have pictures of Tim’s tiny fingers and my finger entwined, post-surgery.

Katie and Tim

I was brought to the maternity floor and had a fleet of nurses doting on me. I thought to myself, “This is pretty sweet! Maybe they do this for all high-risk moms who are going through the ringer and have to deal with NICU.” It was nice, but it also felt weird. I am someone who likes attention, but I’m not a high-maintenance diva who needs a fleet of people to take care of me.

So, I asked one of the L&D nurses. “I love all this attention. But I’m starting to get a Beyonce complex. Like, when she delivered Blue Ivy, I heard that she bought out the whole floor at Lennox Hill Hospital so she would have it to herself. Why am I getting so much attention?”

The nurse laughed. “Well, you are the only mom to deliver a baby today. So, you are the only one on the floor.”

I didn’t realize what a gift this was until the following day when the floor was filled to capacity. And it’s not because I missed the attention; it’s that I heard all the babies. I was so naïve - yet prepared, for my own NICU mom journey - that I didn’t realize that the newborn babies stayed in the same rooms as their moms right after birth. I thought it was like the old movies in which the hospitals had nurseries and the babies were lined up, row upon row, and would stay there while the moms rested and then, were discharged. That night, I heard the babies crying in the rooms. It was hard to hear healthy babies and their exuberant parents as they bumbled through their first night together while Chris and I were alone in our tiny maternity room, without Tim. I rarely felt jealousy during my pregnancy journey, but I felt the sharp pains of envy as acutely as the throbs from my c-section.

And it got worse.

The following day, I was encouraged to walk the floor to get my body moving and start my own recovery process. I was slowly doing my first lap around the floor, clinging to my IV pole, when a mom yelled out to me, “Katie, is that you?”

I looked behind me and saw a glowing, new mom pushing a little bassinet without an IV pole. I had no idea who she was.

I replied, “Yes. This is Katie. I’m so sorry – I forget your name.” And I had no idea how this woman knew me. “It’s Jessica, from the Baby 101 class. How are you? How are you feeling?” I still had no idea who this woman was even though we attended the same mandatory class, but I didn’t want to be rude, so I stayed to chat with her. She quickly caught up to me. And that’s when I saw her baby – the baby without wires. Jessica was pushing a bassinet with a perfect baby girl with her little, pink hospital-issued bow. She was sleeping soundly, and you could see her perfect little nose and tiny heart-shaped mouth. It was a peaceful, serene moment. “I’m good. Um, yeah. I had a c-section so it’s slow-going. Wow! She is gorgeous. Congratulations. What is her name?”

Jessica replied, “She’s Vivian and we’re going to call her Vivi. Thank you so much.” I don’t remember the rest of the conversation, but I know that I was fascinated by this perfect creature and that I was gracious in the moment. I also know that Jessica never asked where my baby was. I shuffled back to my room, not completing my loop, and lost it. I sobbed and sobbed and sobbed. THAT was it? That was all? You had a baby after an innocent pregnancy. And you delivered your baby as naturally as you could so that you could easily complete a lap around the maternity floor, pushing a bassinet? And then, your newborn baby lies next to you at night? And you have a baby without any tubes and wires all over her body so that you can actually see her beautiful face? And you don’t have to be wheeled nearly a mile to other side of the hospital just to see your baby in NICU? I was in shock.

The combination of jealousy, naivete, hormones, and pain medication brought me to a crumpled mess on my hospital bed. A nurse came in. She didn’t even ask if I was okay; it was obvious that I wasn’t. “Let it all out. Let it all out. Let it ALL out,” she repeated as she held me. Huge, ugly tears streamed down my face. The tears wouldn’t stop even though the sobbing hurt my weak abdomen that was still throbbing from the c-section. “Keep crying. Get it out.”

I started to talk. “I…just….these babies….they don’t have WIRES….you can see their faces….they don’t have TUBES,” I said as my body heaved in her arms. “Is that all they have to do? Just have a baby and go home?” The nurse responded, “Yes. You are right – they have the baby and go home. It’s not fair. And I’m so sorry that you can’t have that experience.” I was relieved that she wasn’t an optimism bully and didn’t give me some bullshit platitude or silver lining about having a sick baby. No pep talk could make the situation right and she let me express my grief. More importantly, she validated my feelings.

Then, she pivoted to words of authentic encouragement. “You NICU moms are heroes. You have the most difficult recoveries. You can’t be with your babies. You travel across the hospital to visit with your babies. And you all…you…you….YOU NEVER COMPLAIN. You always say thank you and smile. Regular moms demand us to do all their crap and they aren’t happy with anything. ‘The food here sucks.’ ‘I want the lactation consultant NOW because I have to have everything natural and I must breastfeed immediately.’ ‘I stated in my birth plan that I wanted to have Enya playing in the background during my delivery and no one put it on. I need to talk with someone.’ I wish those moms could live a day in your shoes.”

I appreciated her words, but I didn’t want to be consoled like that. I wanted to be the tough, strong workaholic that I was during my pregnancy journey. I didn’t want pity or to be the NICU martyr mom. I wanted to be happy for others. Why was I crying like this? Why was I having these feelings? Jessica didn’t do anything wrong but why did she induce such a reaction in me? I responded, “I don’t want to be this person. I don’t want to be jealous and bitter. I want people to have beautiful babies. I just…..I just….”

And the nurse stopped me. “YOU ARE HUMAN. Please be gentle with yourself right now.” And she stayed in the room with me for over an hour, just holding me until Chris came back from NICU.

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Katie Simons McCarty grew up in North Andover, MA and attended the College of the Holy Cross. She lived in Boston and New York City for 15 years, working as an educator and then, in educational publishing, before moving out west to Denver, Colorado for a change of pace and energy. She met Chris and started a family in the foothills of the Rocky Mountains. Tim was born in 2015 and PJ (Patrick John) was born in 2018. Life brought Katie and the boys to Massachusetts in 2019 and they are happy to be back home near family.