Prematurity Awareness Month :: My Journey on the NICU Roller Coaster

When I was approached to write a blog about my NICU and pregnancy experiences, I immediately agreed to do it, and then the fear set in. I knew I had a lot to say, but being in the midst of yet another NICU stay the PTSD was REAL ya’ll. I am not a writer, and I would never claim to be but my hope is that if this little piece of my life can help just one person, then it’s all been worth it.  

Born with an uterine anomaly

I feel as if I have experienced pregnancy and childbirth in every single way possible, well except for the normal way. I was born with an uterine anomaly. At 12 years old I was diagnosed with a Uterine Didelphus paired with one of the uteruses being non-communicating. I was really sick, REALLY sick. I credit Dr. Laura Sporl and Dr. Peter Lu with not only saving my life, but giving me hope for children in the future. My parents signed wavers for everything that day, including a complete hysterectomy. At 12 years old, I had no idea what that meant.  

Years went by, and of course, there wasn’t much focus on child bearing. I finished high school, went on to college, and then got married at just 21. When I married my first husband we didn’t focus much on if we could have a baby. I kind of decided I would leave it up to God and not stress myself over “trying.” Two years later I was pregnant with my first baby. Being that this was my first pregnancy, I had nothing to compare it to. I was seeing a Maternal Fetal Medicine doctor in Baton Rouge and my regular OB in Covington. The MFM doctors kept telling me that Ella Grace was just going to be a tiny baby. I wasn’t gaining much weight, but again they never lead me to believe that anything was wrong with her. I went in for an appointment on Friday and the doctor told me my baby just didn’t have the “Shaq gene,” whatever that meant, and by Tuesday morning I was waiting in a cold, sterile operating room to deliver my dead baby. I still can’t wrap my brain around how they couldn’t see that something was wrong. That she was seriously growth restricted, like below the 2nd percentile growth restricted. As it turns out, Ella’s placenta had attached to the large scar that ran the circumference of my uterus. She was not getting the blood flow or nutrients that she needed and eventually, it abrupted completely. My first beautiful girl was born straight into heaven on November 3, 2009.

31 Weeks

Fast forward a few months and I found myself back in my reproductive endocrinologist’s office. He convinced me to try again. That the placenta could attach anywhere and the chances of another stillborn weren’t very likely. He did inform me that any baby I had would likely have to be delivered prematurely. We started the process of gathering a team of doctors that would follow me throughout my pregnancy. Dr. Lu saw me early on to monitor blood flow, my regular OB saw me every two weeks and on the off weeks I saw my Maternal Fetal Medicine doctor. In October of 2010 my rainbow baby was born at just 31 weeks. Carter William was such a little fighter and really did tremendously well in the NICU. The fear was awful. I didn’t know I had a “healthy” NICU baby, all I knew was that I had a baby that died and with every alarm, every setback, I thought it would happen again. Carter spent a total of 4 weeks in the NICU and this momma spent nearly every second there as well. I think if they would have let me, I would have slept in the chair sitting up. I learned quickly that the doctors, nurse practitioners, and nurses become like family. They are truly angels here on earth! I watched them care for not only my baby, but also micro-preemies not much bigger than the palm of my hand. I was in complete awe of how they handled it all.  

I learned a just a couple years later, that NICU stays weren’t always just learning to grow, eat, and maintain a body temp. In July 2012, my sweet Sawyer Glenn was born, also at 31 weeks. From the beginning of my pregnancy for him, I felt more confident, more prepared and just overall more at peace. God had other plans for his story though. Immediately following his birth he was doing well, and then the bottom fell out. His little lungs were in terrible shape. Four pneumothoraxes later, we were on the Oscillating vent with a chest tube and in critical condition. That first week and a half was a blur. The first time I saw my baby boy, he was zero stimulation. I couldn’t touch him or talk to him and the Oscillator vibrated his little body violently. I remember the doctor and nurse practitioner praying with me and praying for a miracle, because I think even they knew that we needed one.

A week and a half on the Oscillating vent and he was finally able to come off. I remember celebrating with a piece of key lime pie from the cafeteria, because after all it was my second home. This time around was just hard. With one baby critically sick and a 22 month old at home that had been the center of my universe, I felt completely torn at all times. When I was home, I wanted to be at the NICU with Sawyer. When I was at the hospital, I wanted to be home with Carter. My emotions were at war with each other. It’s the hardest thing to explain. And in the middle of all the chaos, my body was physically trying to heal from another c-section. NICU mommas don’t get the luxury of healing at home in their bed or on their couch. We spend our time sitting in uncomfortable chairs, alarms beeping all around us, with those angel nurses asking, “Are you sure you are taking care of yourself too?” You don’t though because I think it’s human nature, or at least a mother’s instinct, to care for your child before yourself. After 8 long weeks, I was able to bring my Sawyer home. 

Here I am, 7 years later doing it again.

I guess I am a little crazy. I married the most amazing man in 2018, he didn’t have any children of his own, and we knew we wanted to give it a shot. Again we kind of left it up to God, and on August 30, 2019 we welcomed our Elsie Gray, another 31 weeker. I wish I could say I was better prepared mentally for this one, but I wasn’t. The smells, the sounds, the familiar faces, all took me back to that terrifying time with Sawyer. If anything I feel like this stay has been harder. Maybe because I am older, maybe because I see so many other parents in the same situation I was in in 2012 with very little hope. Elsie has been a rock star, and still most nights I find myself crying myself to sleep with other families weighing heavy on my heart.

The NICU is not for the faint of heart. Friends have said things that have offended me, like wishing their babies would come early … and I want to shake them and say, “Do you see what we are going through? Do you see me balancing two older children and one in the NICU? Do you even realize what you are wishing for?” Truth is, they don’t. It’s not mean spirited when people just don’t get it, it is just never having experienced the situation. Even now writing this my brain is off somewhere else, that somewhere else being the NICU where my Elsie is being cared for by the most amazing team. I wait. I wait for us to get the good news, that it’s our turn to go home. 

Mandeville Motherhood Photography, Hammond Motherhood Photography, Local Honey Baby, Local Honey Children’s Boutique, New Orleans Motherhood Photography – Kali Norton Photography & Design, LLC

Now, 4 weeks from later, we are home. Elsie is thriving. Life is getting back to normal. I can’t say that my NICU stays only gave me bad memories. I have two amazing, smart, healthy, handsome boys that are now 9 and 7. Currently sitting in her swing, on the floor of my home office is my fourth and final miracle, Elsie Gray. I have met some of the most amazing mothers and lifelong friends from my NICU stays. There are nurses I still get together for margaritas with. I don’t think that my children are better for their NICU stays, but I do feel it sets them apart. They have already overcome so much. They’ve been put through test and come out on the other end of it, stronger and probably a little bit more stubborn than their full term friends. 

If I could say anything to the momma in the thick of her NICU stay, I would say I see you. I sit here with tears in my eyes because I really do see you. I see you skipping meals, living on coffee and granola bars you can keep in your purse. I see your weary, tired eyes as you scrub in. I see you look at other babies with sympathy and guilt because they are in a way worse situation than your baby, all while secretly being thankful that it’s not you. I see your heart hurt as your friends bring home their healthy babies from the hospital a few days after delivery while you are asking a nurse for permission just to hold yours. Mommas, I see you leaving the hospital with empty, aching arms clinging to a tiny box that holds everything you have left of your baby. Every single time I see you, I am brought right back to my own moments. We are warriors. To survive loss, to survive a NICU stay is a miracle in itself. You will survive and when you do, pay it forward anyway you can. You know there is never anything you can say. Just be there.  

About Brittany

Mandeville Motherhood Photography, Hammond Motherhood Photography, Local Honey Baby, Local Honey Children’s Boutique, New Orleans Motherhood Photography – Kali Norton Photography & Design, LLC

Brittany Marino is a 34 year old wife and mother. Born in Gretna, Louisina, she now lives in Ponchatoula with her husband Orrin, three beautiful children, and sweet pup, Teddy. In 2017, as a single mom, she started her own business, Elle Eva Boutique. Located in downtown Ponchatoula, and named after her great grandmother, the boutique specializes in women’s clothing and accessories. In her spare time she volunteers at Restoration House in Hammond, LA, a crisis pregnancy center that provides for the basic needs of women and children in the Tangipahoa Parish area. She enjoys traveling with her husband and children, watching her two older boys play sports, a good glass of wine, and cheering on her Tigers and Saints. On the weekends you can find her exploring her favorite city, NOLA, or worshiping with her family at The Mission Church, Hammond.

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