William's Journey: Strength, Hope, and Purpose in Empowering NICU Parents
From a young age, I knew I wanted to care for babies. I dreamed of becoming a nurse and working in neonatology, where I could make a difference in the lives of the tiniest and most vulnerable patients. After 12 years as a NICU nurse, I became a Neonatal Nurse Practitioner (NNP). Little did I know that shortly after that, my life would take a path that would challenge me both professionally and personally in ways I had never imagined.
Soon after becoming an NNP, my husband and I were excited to start our family. My first trimester went smoothly, but at 15 weeks, I started experiencing complications. I was admitted for preterm labor and contractions, and despite all the interventions, my condition worsened. At just 23 4/7 weeks, I underwent an emergency cesarean section due to fetal heart rate decelerations and a suspected placental abruption. It was under these terrifying circumstances that our son, William Russell Nyberg, was born—at just 1 lb 6 oz.
The NICU journey, which I once knew from the perspective of a healthcare provider, became a deeply personal nightmare. I was unexpectedly submerged into a world I never wanted to be a part of, one filled with fear and helplessness. Every day, I feared for my son’s life, watching him fight through each setback and celebrate each tiny victory. To see the world I knew so well through a mother’s eyes opened me up to the true emotional toll that NICU families endure.
As a NICU nurse and NNP, I had spent years comforting and guiding families through the NICU journey, familiar with the procedures, risks, and complications that came with extreme prematurity. Understanding the medical procedures and knowing the right questions to ask did little to ease the acute awareness of the risks William faced each day and the overwhelming dangers that lay ahead. I knew how to follow his progress, but now every medical update felt like a double-edged sword, and every decision weighed heavily on my heart.
Nicole doing kangaroo care with William in the NICU.
Being on the other side of the NICU doors as a parent taught me things that no medical training ever could. But nothing could have prepared me for what it would be like watching my own son endure those struggles. Seeing my son in pain, knowing there was nothing I could do to take it away, was unbearable. I wanted so desperately to absorb all of his suffering, to fight his battles for him, but all I could do was watch, hope, and pray. Watching William fight for survival filled me with fear and hope in equal measure.
Though I used my professional experience to care for him and did everything I was allowed to, it never felt like enough. Knowing what to do but being unable to fully help him left me feeling helpless and overwhelmed. As his mother, I felt torn between the instinct to protect him and the harsh reality that essentially everything was out of my control. The roles I had once kept separate—professional and personal—had now collided, and I was navigating an entirely new, heart-wrenching reality.
Each tiny victory temporarily lifted our spirits, but the setbacks were crushing. Living through the NICU as a parent opened my eyes in ways that only personal experience could, revealing insights that can only be fully understood after enduring it firsthand. It was a raw, emotional battle—one that revealed the true depths of the pain, fear, and hope that NICU families carry with them every single day. I was no longer just a clinician; I was a mother.
William’s NICU journey was marked by triumphs and trials navigating countless procedures, an infection, respiratory challenges, and emotional upheaval. Yet through it all, William showed remarkable strength, and eventually after he spent 91 days in the NICU, we were able to bring him home on oxygen. I was profoundly grateful, but the transition home was not easy. Those early days and years if I’m honest, were a blur of exhaustion, worry, and relief. Despite William’s miraculous progress, I struggled with postpartum emotions and the trauma of his NICU stay. The experience of having an infant in the NICU does not simply end when your baby goes home—it follows you, in the form of ongoing care, worries about development, and the lingering emotional toll of the journey.
He has since defied so many of the odds placed against him and is now a thriving, strong-willed, funny, and healthy 10-year old. Despite William now being healthy, he also continues to face challenges stemming from his profound prematurity. His journey, marked by resilience and strength, is a reminder that while the immediate health concerns may have improved, the long-term effects of being born at the edge of viability persist. These struggles, both visible and invisible, have shaped him and our family in ways that still influence our daily lives. The challenges for both the infant and the family often persist, as the effects of prematurity and the NICU experience can leave lasting physical and emotional impacts.
His story is a testament to the complexities of prematurity, and it continually informs my perspective as both a mother and a healthcare provider. I learned the power of prayer, the importance of support, and the necessity of advocacy for NICU families. My personal experience made me painfully aware that NICU parents often feel lost, overwhelmed, guilty, disconnected, and utterly traumatized. If I felt this way after all of my professional training, other parents must feel even more isolated and afraid.
Empowering NICU Parents was born out of my desire to fill the gaps I saw during my own NICU experience. The emotional toll of having a baby in the NICU is immense, and too often, parents are terrified and unsure how to be parents to their own baby. My goal was to create a platform that provided education, emotional support, and empowerment for parents, helping them not only understand their baby’s medical care but also feel confident in their own ability to participate in that care.
“Once Empowered With Knowledge, You Have the Ability to Change the Course.”
One of the most profound lessons I learned during William’s NICU stay was the critical importance of parental involvement. I genuinely believe that our active engagement in his care was a pivotal factor and it made a lasting impact on his remarkable progress and overall outcomes. Without that involvement, his journey could have looked much different. When parents are empowered to be an active member of their baby’s care team—whether it’s through skin-to-skin contact, participating in rounds, or confidently asking questions—they can have a direct impact on their baby’s outcomes. Research consistently demonstrates that parental involvement plays a key role in improving long-term developmental outcomes for preterm infants. I want to ensure that every NICU parent is not only aware of this but also equipped with the knowledge and tools to actively engage in their baby’s care.
This inspired the creation of Our NICU Roadmap, a comprehensive NICU journal designed to help parents document their baby’s progress, stay organized, and gain the knowledge needed to stay actively engaged and ask informed questions. During William’s NICU stay, I realized that, although I had the medical knowledge to track his progress, I lacked a dedicated tool or space to document everything I wanted to remember. The journal includes spaces for birth stats, daily weights, respiratory settings, lab results, and more. It prompts parents with questions to ask the care team and encourages them to record the little victories and milestones, no matter how small. The act of journaling not only helps parents stay organized but also serves as a therapeutic outlet during an emotionally overwhelming time.
But Empowering NICU Parents is more than just educational tools—it’s about fostering a sense of community. The NICU journey can be incredibly isolating, and I wanted to create a space where parents could connect with others who understand what they are going through. No one knows the NICU experience like those who have walked that path, and through our podcast and social media, we share stories of hope, resilience, and triumph from other NICU families. We want parents to know they are not alone in this journey, and that the feelings of fear, anger, jealousy, and uncertainty are all normal.
Recently, I took on a new role as a Clinical Specialist at AngelEye Health, a company that uses innovative solutions to help families stay connected and engaged with their babies in the NICU, even when they can’t be physically present. This role allows me to expand both my personal and professional mission to empower and educate families while supporting NICU care teams. I’m proud to be part of a team making such a meaningful impact, and I’m excited about the future as we continue to provide vital support during one of the most challenging times in a family’s life.
There is incredible strength in the smallest fighters, and a community that understands and stands with you. Every NICU journey is unique, but one thing remains constant: parents need support and empowerment. Through education, community, and advocacy, we aim to equip NICU families with the tools they need to feel confident and supported throughout their baby’s journey.
The NICU experience changes you in ways you never expect. My son William’s time in the NICU was one of the most difficult and life-altering experiences I’ve ever faced, but it gave me an incredible gift—the gift of perspective. His strength and courage, from those early days and even now, continue to shape who I am. William’s resilience, along with the many families I’ve had the privilege to know, inspires me to continue this work and drives my purpose as a Neonatal Nurse Practitioner and founder of Empowering NICU Parents. His impact is endless, and my mission is to honor him by helping other families navigate this challenging journey with the support they deserve.
