Experiencing Infant Loss

In honor of Prematurity Month and March of Dimes, we're bringing you a series of posts on prematurity and the NICU from mamas who've experienced it firsthand. All proceeds from the first 1000 All Over Ointments sold go directly to March of Dimes.


Tell us a little bit about you, Kelsey. 
My name is Kelsey Nixon - I host of Kelsey’s Essentials and Kelsey’s Homemade on Cooking Channel and I’m the author of Kitchen Confidence. I also have an exclusive line of kitchen products designed for the home cook that is sold through HSN. More importantly, I’m a wife and mom to a family that I love dearly. 
We love your show and we love following you on Instagram. Can you tell us a little more about your family?
My husband Robby and I met in college. As newlyweds we moved to NYC to purse our dream careers and eventually grow our family. Our son Ollie (5) joined our family in 2012 arriving 12 weeks early weighing in at 2 lbs. 1/2 oz. After a two 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 weighing 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 daughter Nora (1) miraculously joined our family in November 2016 after my angelic sister-in-law offered to be a gestational carrier for our family. 

Wow. Thank you so much for sharing Ollie, Leo, and Nora with us. Could you tell us about your stay in the NICU?
I had two different stays in the NICU with each of my sons. My first son Ollie 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’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. 
With all that said, I learned some very valuable life lessons as a NICU mom. The NICU is a challenging place to be, but an unbelievably sacred place to be as well. Particularly with my son Ollie, 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. 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. My experience as a NICU mom taught me what empathy really looks like.
If you could share one thing with other women who have experienced infant loss, what would it be? This could be information you wish someone had shared with you, or something helpful for someone to say.
My message to fellow women who have experienced infant loss is one of sorrow. Oh how I ache for any mother who has lost their baby. It’s an awful club to join and it’s something you will carry with you forever. Nothing about losing a child will be easier than expected. But you will witness so much good in the process. You will be reminded of how much you are loved by your family and friends. You will be the recipient of beautiful acts of service and as a result make a commitment to be there for the next person in line. Grief will become a constant companion and it will look differently for you than it does for others. It may initially flood you with sadness and then turn to anger. It may linger, or you may learn how to compartmentalize and stick it on a shelf for a while. It will be frustrating and exhausting, but it will be important that you prioritize your grief. It’s okay to be sad, angry, and even happy at times. I think the most valuable piece of advice I could offer to a mother mourning the loss of her baby is to be gentle with herself. Be patient and don’t forget to prioritize your emotions and needs. 
Kelsey, thank you so so much for sharing with us about your beautiful family, and sweet Leo. You can read more NICU posts by searching "NICU" in the search bar in the top right.
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