By Melissa Cassiliano
There is a place where many parents are forced to reside, and even when vacated, you are left with memories and scars that will forever stay with you. It’s a place that changes your perspective and gives you uninvited knowledge of medical terms you never expected to know, and for some, it’s a place where feelings of hope, faith, and real-life miracles are witnessed.
The NICU, a neonatal intensive care unit, also known as an intensive care nursery, is an intensive care unit specializing in the care of ill or premature newborn infants. In this article, I share my journey alongside three extraordinary mothers, Cherylyn Salerno, Erika Volpe, and Elizabeth "Liz" Moore, whose NICU experiences resonate deeply with mine and, perhaps, yours too.
In the United States, the reality of pre-term births is staggering. According to March of Dimes, 373,902 babies were born pre-term, accounting for 10.4% of all live births. For many families, this statistic is not just a number but a profound and life-altering experience. Back in 2008, I was oblivious to this harsh reality. At age 29, I had just begun what I thought would be a seamless journey into motherhood. Newly married, a proud homeowner, and filled with dreams of a vibrant future with my child, I envisioned a girl with a life filled with dancing, cheerleading, and countless adventures. However, my disillusioned fairytale quickly transformed into an unexpected narrative when my pregnancy took a precarious turn, thrusting me into the world of the Neonatal Intensive Care Unit (NICU) at just 29 weeks.
My NICU Journey
Let’s rewind to July 2009, when I discovered I was pregnant. Like many expectant mothers, I envisioned a joyful journey ahead, filled with excitement and anticipation. However, this dream quickly turned into a nightmare at 11 weeks when I learned there was extra fluid around the baby’s neck. I was ordered to undergo a CVS test and was told I had an 80% chance of giving birth. Thankfully, the results came back okay, allowing me to breathe a small sigh of relief.
But my relief was short-lived. At my 20-week scan, the baby’s limbs measured short, and my doctor sent me to a specialized children’s hospital for genetic testing. Once again, the results were reassuring; everything was okay. With this positive news at 22 weeks, I finally felt ready to shop for nursery furniture.
As an elementary teacher, I struggled with severe swelling in my feet, often wearing my husband’s UGG slippers to work. One day, I approached a colleague who was a mother of three and asked her to look at my feet to see if they looked normal. She exclaimed, “Oh no, honey!” After the school nurse took my blood pressure and found it to be high, I went to the restroom and discovered bleeding. I was whisked away in an ambulance, filled with fear and anxiety.
From that moment, I was hospitalized with preeclampsia and H.E.L.P syndrome. Thirty days later, I underwent an emergency delivery at 29 weeks, put under anesthesia due to concerns that my liver had burst. When I woke up, my husband was by my side, asking about our baby’s well-being. Luckily, my organs were intact.
The following 55 days in the NICU were harrowing. Doctors prepared me for the worst, stating my little fighter would require various medications to hold a pulse. I witnessed miracles and faced daunting challenges, including brain bleeds, blood transfusions, feeding issues, surgery for a malrotated bowel, and hemangiomas affecting her vision.
During this time, I forged connections with other mothers. One of the most profound relationships was with Cherylyn, who was there with her daughter, MaKenna. We shared setbacks and updates, and through her advocacy, our daughters became the first in our hospital to receive a medication that could reduce their hemangiomas.
After nearly two months, we finally brought our baby home. Weighing just 4.5 lbs and struggling to maintain her temperature, she was attached to a heart monitor. The beeping of the machines became a source of comfort for me; silence was frightening. My fear of germs led me to limit visitors and outings, anxious that my fragile child might catch something that could threaten her life. This fear isolated me, as few could truly understand what we had endured.
In the years that followed, we faced numerous follow-ups, eye surgeries, and therapies. Our daughter’s early birth resulted in delays affecting her muscle strength and fine motor skills. Today, fifteen years later, we celebrate her progress and adaptability.
Cherylyn’s strength during her subsequent pregnancy gave me the courage to try for a second child, knowing that the NICU experience could happen again. Thankfully, our second pregnancy went full term, with only a brief stay in the NICU, leaving me relieved yet anxious, given our past.
Cherylyn’s Journey
Cherylyn’s journey through motherhood took unexpected turns, starting with her experience in the NICU, an experience no expecting parent anticipates. Despite following all the guidelines and reading numerous books, she confronted the harsh reality of scrubbing in to see her baby. The emotional toll of leaving the hospital each night without her newborn was profound. She felt deep grief and sadness as she returned home to pump milk, filled with anxiety and despair. The night nurses provided comfort, offering gentle reassurances and updates on her baby, Makenna, who was fighting for her life in the NICU. Through the long nights spent in the kitchen, Cherylyn learned that her initial plans for motherhood were irrelevant compared to the fight for her daughter’s survival. After seven weeks by Makenna’s isolette, she gained a new perspective on what truly mattered, appreciating the everyday challenges of parenting that others often take for granted.
Cherylyn’s initial pregnancy experience with Makenna seemed ideal until it abruptly changed. She had a “textbook” pregnancy, but just 24 hours before delivery, she unexpectedly went into labor. In contrast, her pregnancy with Jack started with complications right from the beginning, including bleeding issues and difficulty finding a heartbeat. Makenna was born at just 29 weeks after a harrowing labor experience that necessitated a rushed transfer to a hospital with a level three NICU. Cherylyn vividly recalls the chaotic atmosphere as she delivered Makenna, who was whisked away immediately after birth.
A couple of years later, Cherylyn faced another NICU journey with Jack, who was born at 25 weeks after her water broke unexpectedly. This time, she experienced the heart-wrenching solitude of labor without her husband by her side. The delivery room was filled with familiar faces from her previous NICU stay, which offered momentary comfort, but Jack was taken away immediately after birth, leaving her feeling isolated again.
Cherylyn’s NICU experiences were marked by significant challenges. Makenna faced serious complications, including a brain bleed and heart murmur, requiring multiple blood transfusions. Jack also encountered struggles with apnea episodes, though his challenges extended beyond the NICU. Throughout these experiences, Cherylyn found solace in forming connections with other mothers in the NICU, particularly with me. One day, in the room reserved for parents from the NICU, Cherylyn asked if I was okay. Ironically, my baby, Angelina, had the same strawberry-colored birthmark that Makenna had. Having a few weeks of extra experience with us, she was able to share what she had already learned, and we bonded over this experience. We stayed in touch after Makenna left the NICU, and Cherylyn continued to share everything about her journey and the birthmark so that with my Angelina, we would have the inside scoop. Today, we remain connected; our Christmas cards are ones that we both look forward to most each year.
Once Makenna was discharged from the NICU, Cherylyn felt terrified and unprepared. Having lived in the NICU for seven weeks, she questioned her ability to care for her daughter without the constant support of medical staff. A respiratory therapist encouraged her to leave, signaling it was time to embrace life outside the NICU. Despite this push, Cherylyn continued to reach out to the nurses for reassurance in the following nights. With Jack, the urgency to return home increased due to family circumstances, leading to more medical appointments and emergencies in the months that followed.
Both children underwent extensive follow-ups to monitor their development. Today, Makenna is a thriving 15-year-old who competes in track and field, displaying remarkable kindness and compassion. Jack, now 12, faces challenges related to ADHD but is making strides in education and personal growth. Cherylyn’s journey of resilience highlights how trials in motherhood can lead to profound changes in perspective, teaching her to cherish the ordinary moments that many parents often overlook.
Erika’s NICU Journey
Erika was a colleague and a close friend of someone close to me. I knew that she was on her second pregnancy with twins. I received a phone call from our mutual friend letting me know that Erika had just delivered at 28 weeks. Almost nine years after I was in the NICU, I was more than willing to offer my support and encouragement, knowing that like many before her, Erika and her beautiful girls would conquer this journey. I would often do all I could to find motivational quotes to send to her, giving her the understanding that us NICU moms are there for one another and that I knew what she was going through. I followed her journey closely, waiting for updates and watching her experience the roller coaster of emotions that the NICU brings to many.
Erika’s journey to motherhood was filled with challenges, starting with her decision to have another baby after previously undergoing a surgical procedure for an incompetent cervix. Little did she expect to be blessed with twins. At 14 weeks, her doctor placed a cervical cerclage to help keep her cervix closed throughout the pregnancy. However, at 28 weeks, her water broke in the middle of the night while her 18-month-old daughter slept peacefully in her crib. Erika and her husband rushed to the nearest hospital, where it was confirmed she was in labor, leading to an ambulance transfer to a facility with a level 3 NICU.
Peyton and Olivia were born prematurely at 28 weeks, and their NICU journey began. Both girls faced significant challenges, particularly Peyton, who suffered a collapsed lung within 24 hours and required surfactant treatment. They were both placed on CPAP machines and fed through tubes until they learned to coordinate breathing, sucking, and swallowing. Peyton spent 58 days in the NICU, while Olivia stayed for 65 days. During this trying time, Erika received continuous support from her cousin Michele, also a NICU mom, who provided a notebook to document her daughters’ journey and called daily for updates. As her former colleague, I did my best to reach out with encouraging quotes and words of comfort, helping Erika cope with the emotional turmoil.
The day Erika brought her twins home to meet their big sister was one of the most joyful moments of her life, despite the anxiety of leaving the security of medical professionals behind. Life after the NICU was a whirlwind of juggling schedules and ensuring the twins ate every three hours for proper weight gain and development.
In the months that followed, Erika faced ongoing challenges, as Peyton dealt with acid reflux that required medication and frequent visits to a pediatric gastroenterologist, alongside physical therapy to help her develop motor skills. Olivia struggled with speech, necessitating moderate intervention, and both girls are currently enrolled in IEP programs, with Peyton attending speech therapy twice a week. Erika’s perspective on motherhood deepened through her NICU experience; witnessing her daughters grow and thrive outside her body was an emotional and profound journey.
Although she longed for a fourth child, Erika recognized that she couldn’t endure another surgical procedure or the anxiety of waiting for her water to break again, nor could she face the prospect of another prolonged NICU stay. Her advice to mothers navigating the NICU journey emphasizes resilience, likening it to a series of stepping stones where progress can vary day by day. “It will test your strength and patience,” she reflects, “but there is no greater feeling than walking out with your baby who has been fighting not only for themselves but for you too.”
Liz’s NICU Journey
Shortly after Erika’s stay in the NICU, I was flooded with emotions I hadn’t confronted in nine years. I returned to the very NICU, where I spent 55 days with my baby, now facing the same journey alongside my close family friend Liz, whom I consider my little sister. Liz had given birth to twins at 34 weeks, and as someone who had experienced the NICU, I instinctively began to gauge how long they might stay based on their birth weight and the equipment they needed.
Even though Liz’s time in the NICU would likely be shorter, I understood the fears she would experience as a new mom during those critical days. As I scrubbed my arms in the familiar handwashing station and entered the NICU, seeing her tiny twins in their incubators triggered a rush of memories. The emotions overwhelmed me, and I couldn’t help but cry, realizing I had never truly processed the trauma of my own experience. It became painfully clear how real it was, even after all these years.
Liz’s journey through pregnancy and the NICU was filled with unexpected challenges. Initially, her IVF pregnancy took a surprising turn when it resulted in twins, which brought a host of risks and complications. Early on, she experienced bleeding at around seven weeks, which caused her to fear losing one or both babies. Thankfully, both had strong heartbeats by eight weeks. After transitioning from her fertility clinic to an OB at nine weeks, she was referred to a high-risk doctor at twelve weeks due to a shortened cervix, raising concerns about early labor. Balancing teaching and house hunting, Liz managed bi-weekly appointments and progesterone inserts to help maintain her pregnancy.
As her pregnancy progressed, her 20-week anatomy scan initially showed healthy babies, but her cervix shortened further, leading to weekly appointments. At one appointment, she learned she was dilated 1 cm and faced a critical decision: wait, terminate, or undergo a cerclage. Although cerclages, also known as a cervical stitch, are typically avoided for twins, her doctor agreed to proceed. After the procedure, strict bed rest became her reality, preventing her from working or even showering normally. Despite these challenges, she managed to stay pregnant for an additional twelve weeks, ultimately delivering her twins via C-section at 33 weeks and 1 day after her water broke.
The NICU experience proved both daunting and enlightening. Liz spent 16 days there with her twins, Bryant and Maya. Bryant was in the NICU for ten days, while Maya stayed for the full duration. Both babies were jaundiced, which meant Liz couldn’t hold Maya for the first three days after birth. After a twelve-hour wait following her C-section, Liz finally held Bryant for the first time at 2 a.m. The nurses were an incredible source of support, teaching her and her partner how to care for their newborns and providing reassurance during a stressful time.
In the NICU, Liz found comfort in the connections she made, particularly with the nursing staff. One nurse, Lisa, left encouraging notes and ensured the family could monitor the babies through the cameras. Liz leaned on friends and family, especially me, her close friend who had experienced a similar NICU journey. The emotional support proved invaluable.
Bringing her babies home was bittersweet for Liz, filled with guilt for leaving Maya behind for six days while Bryant came home first. The demands of caring for two pre-term infants were overwhelming, but she cherished those early months.
Fortunately, Liz and her twins faced minimal ongoing challenges after leaving the NICU. They began physical therapy at five months, and by age two, they graduated with clean bills of health, thriving and starting kindergarten. Liz’s experience profoundly changed her perspective on motherhood, teaching her to appreciate health and the importance of community support. After her twins came home, she felt a strong desire to have another child. After some hesitation from her husband, they moved forward with an embryo transfer and welcomed their daughter, Lyla, in September 2023. Liz’s advice for mothers navigating the NICU journey is to hold onto hope, lean on their support systems, and take it one day at a time.
“The NICU may not be a place you ever imagined being. It is likely not a place you ever imagined at all... But once you are there, embrace the experience. There are lessons in it."
- Elizabeth Moore
When offering advice for families entering the NICU, I could not have said this better than Cherylyn:
“The NICU may not be a place you ever imagined being. It is likely not a place you ever imagined at all... But once you are there, embrace the experience. There are lessons in it. There will be lessons after it. It will change you, in some ways for the better. It will give you a perspective that your friends, family, and acquaintances don’t have. It’s not their fault, and don’t blame them for it. Be kind to yourself. Your baby being born early or being in the NICU is not your fault. And you are the best mom for that baby, trust that. Repeat it to yourself. Be gentle with yourself and ask for help. Ask your friends and family for reassurance, a hug, a meal, a cup of coffee, or ask them to sit with you next to the isolette. Share your baby’s story; celebrate them. Celebrate you; you’re an awesome mom.”
In sharing my story and the stories of Cherylyn, Erika, and Liz, I hope to offer a glimmer of hope and a reminder that the strength we gain through our experiences can light the way for those who follow in our footsteps.
Resources for Families and Mothers of the NICU:
March of Dimes - https://www.marchofdimes.org
NICU Helping Hands - https://nicuhelpinghands.org/
Preemie Parent Alliance - https://preemieparentalliance.org/
Hand to Hold - https://handtohold.org/
Family Support Network- https://www.fsncc.org/
Tiny Footprints - https://tinyfootprints.org/
The Preemie Project - http://thepreemieproject.com/
