What I Learned as a NICU Mom

February 10, 2021
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We’ve spent our fair share of time in a NICU experiencing the highest of highs and the lowest of lows. Below you’ll find the profound lessons that I learned as a NICU mom.

Our Story

Our son Oliver (8) joined our family in 2012 arriving 12 weeks early weighing in at 2 lbs. 1/2 oz. After a 2 1/2 month stay in the NICU we brought him home and began to enjoy life as a family of three. A few years later we became pregnant again and after another complicated pregnancy welcomed our second son, Leo who arrived even earlier at 25 weeks weighing 450 grams just shy of 1 lb. Leo put up a brave fight and lived for one month before passing away due to complications from his prematurity and underdeveloped organs. Our daughters Nora (4) and Penelope (1) miraculously joined our family thanks to gestational surrogacy and two incredible women who helped us grow our family. (My sister-in-law Betsy and a close family friend Megan)

Two Different NICU Stays

Oliver – 28 Weeks

My first son Oliver was born at 28 weeks due to a condition that I developed during pregnancy called HELLP Syndrome. After a textbook pregnancy up until that point this was extremely unexpected and quite traumatic. Ollie’s stay in the NICU was a result of his prematurity and underdeveloped lungs. Ollie was immediately placed on CPAP and given a central line that delivered the nutrients he needed to grow and thrive. His stay was fairly typical for a baby of his gestational age – we were focused on him learning to breathe independently and tolerate enough milk that would allow him to grow. There were daily ups and downs with instances of apnea and bradycardia, but we were very fortunate to graduate from the NICU without ever having to deal with an infection or a more serious issue. At the time, the heartbreak of leaving my baby at the hospital day after day was all-encompassing. Little did I know that in the near future I would consider this NICU experience a “cake walk” compared to what would experience with our second son. 

Leo – 25 Weeks

Leo’s stay in the NICU was more difficult for many reasons. We had purposely aligned ourselves with a doctor who was affiliated with the hospital that housed one of the best NICUs in the country just in case we found ourselves in a similar situation with our second baby. Thanks to HELLP Syndrome once again and a poorly developed placenta, Leo arrived at 25 weeks and weighed half of what Ollie weighed – 15 oz., less than a bottle of water. Leo wasn’t getting what he needed in utero which they call intrauterine growth restricted (IUGR). So he was extra small for his gestational age – many NICUs aren’t able to accept and treat babies less than 500 grams and our Leo only weighed 450 grams. It was miraculous that he survived his birth and even more miraculous that he went on to fight for nearly a month before his tired little body couldn’t keep up anymore. Eventually, it was an infection paired with respiratory distress that took his life.

One of the most challenging aspects of Leo’s stay in the NICU was the fact that I had contracted an infectious disease while in the hospital called C DIFF. It’s extremely contagious and as a result, my hospital room had to be quarantined along with Leo’s isolette. This awful diagnosis meant that my contact with family and friends that I desperately needed at this time had to be kept to a minimum. It also prevented me from touching Leo and required that every time I entered the NICU I had to wear a mask, gloves, and gown. It was awful. As challenging as the C DIFF was physically, it was the mental anguish of limited contact with my loved ones (and Leo!) that were the most difficult to deal with. It also became apparent to me that in a very large NICU with over 100 beds, our baby was the smallest and had one of the most difficult battles ahead of him.

Leo’s ups and downs were a lot more dire than the rollercoaster we experienced with Ollie in the NICU, but it never really occurred to me that Leo might die. I really felt that if he was going to die, it would have happened shortly after his birth – and instead focused on things like how I could best mother a child who would potentially have special needs. Leo was progressing well, then took a very quick downward spiral and eventually passed away in my arms – it would be the first time that I actually got to hold him. It was every bit as awful as a mother might imagine it to be. It’s one thing to leave the NICU knowing that your baby is being cared for by an incredible team of NICU nurses and Neonatologists each night, it’s a whole other thing to leave the NICU for good, with empty arms. 

What I learned as a NICU mom

With all that said, I learned some very valuable life lessons as a NICU mom. The NICU is a challenging place to be, but it’s also an unbelievably sacred place to be. Particularly with my son Oliver, I had the opportunity to hold him for hours on end with zero distractions day after day. I got to witness my tiny baby make unbelievable strides and progress and earned the title of Mama Bear while doing skin-to-skin kangaroo care. I gained unbelievable respect for the medical staff that works in this field. I learned patience and perseverance and what it means to surrender all control. Most importantly, my experience as a NICU mom taught me what empathy really looks like.

Unfortunately, I also learned that occasionally babies don’t come home from the NICU. It’s crushing for me to even type that sentence, but that was our reality. Just because we didn’t get to bring Leo home and raise him, it doesn’t mean that I didn’t learn profound lessons from him and our time spent in the NICU. Leo taught me that I am as strong as I have to be. That even when I think I can’t keep going, I will. I learned that the most difficult thing I’ve experienced in life (Leo’s loss) was essential in paving the way for some of my greatest experiences (the birth of Nora and Penny). My life isn’t meant to be free of heartache, pain, or disappointment. I needed those emotions and deeply rooted feelings to move me in a direction that would help me accomplish things that felt impossible, like growing our family through gestational surrogacy. Learn more about this beautiful story here)

I’m so grateful to have learned this lesson in such a massive way early on in motherhood. I think about it often, and I think our experience in the NICU had a lot to do with it. Trials and tragedy can often lead to massive action…and massive action and persistence was what was required for our miraculous events to play out.

Ultimately, our daughters wouldn’t be here if it weren’t for Leo’s short, yet meaningful life. If he had lived, we wouldn’t have grown our family any more and we certainly wouldn’t have our girls. I believe that both his life and death were essential in helping us build and complete our family.

We partnered with March of Dimes to help spread awareness about prematurity to create a beautiful video of our story. We love March of Dimes and that they advocate for the health of ALL moms and babies. We look forward to many years of work with the organization.