Introduction
Welcome to the Empowering NICU Parents’ Podcast!
Our podcast is dedicated to supporting, educating, and empowering parents navigating the challenges of having a baby in the NICU.
In honor of HIE Awareness Month, today’s episode highlights the profound and lasting impact Hypoxic-Ischemic Encephalopathy (HIE) has on so many families — an impact that extends far beyond the NICU walls.
I was honored to be joined by my friend, former colleague, and fellow Neonatal Nurse Practitioner, Jessica Fulton. In this incredibly powerful conversation, Jessica bravely walks us through the unexpected complications surrounding the birth of her son, Bo, and the emotional rollercoaster that followed when he was admitted to the very NICU she had worked in for years.
Jessica opens up with raw honesty about what it was like when her personal and professional worlds collided — when she was no longer the provider at the bedside, but the terrified mother watching her coworkers fight to save her child. She bravely shares the hidden challenges that many families experience but may not speak openly about: the deep isolation, the parental role alteration, the lifelong uncertainty following a diagnosis of HIE and cerebral palsy, and the emotional toll that does not simply end when families leave the hospital.
Jessica’s story is a powerful reminder that HIE forever changes the lives of many of the infants and families it touches. Her voice reminds us why awareness, understanding, and continued support for HIE families is not just important — it’s essential.
Whether you are a NICU clinician, provider, parent, or a loved one walking alongside a family with a child diagnosed with HIE — this is a conversation you simply must hear.
I am deeply grateful to Jessica for trusting us with her story and for helping us honor the strength, resilience, and reality of all families impacted by HIE.
Let’s listen, learn, and stand beside these families — this month and every month.
The Why Behind Empowering NICU Parents – Empowering NICU Parents' Podcast
- The Why Behind Empowering NICU Parents
- From NICU Experience to Nonprofit Mission: A Family’s Journey to Today Is a Good Day
- The Lifelong Journey and Impact of Premature Birth: What Families Should Know
- Wave of Light: Finding Light After Loss
- Culture, Belief, and a Committed Team: The University of Iowa NICU Redefines What’s Possible
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Episode 68
Our Guest
Jessical Fulton
Jessica Fulton is a NNP at a level 4 NICU in Grand Rapids, MI and also works at a level I nursery outside of Grand Rapids. She is a Nursing Professor at the Doctoral level and in undergrad nursing. Her education background includes a bachelor’s in nursing, a master’s as a Neonatal Nurse Practitioner, post-master’s in nursing education, and a doctorate in nursing leadership.
Jessica’s husband, Derek is a Project manager for Belcan engineering. He has a bachelor’s in electronic engineering technology.
Derek and Jessica began dating in high school and have been married for over 14 years. They currently live outside of Grand Rapids, MI, with their 2 boys and French bulldog. They enjoy spending time on their lake, going to sporting events such as Michigan football and hockey games, and traveling.
Their son, Brady is 11 years old and is in 5th grade. He loves learning about social studies and math. He has had the opportunity to participate in advanced writing, math, science, and social studies programs. He plays football, flag football, hockey, and baseball.
Bo is 9 years old and is in 3rd grade. He loves going to school to see his friends. He is a very hard worker at school and continues to make progress with his academics. He plays soccer, baseball, and hopefully hockey next winter. He also participates in research studies through the PT department at Grand Valley State University. He completed his second 5K on April 12 with the students at GVSU.
From Provider to Parent: A Life-Altering Shift
Jessica begins by reflecting on her first pregnancy with Brady, a healthy baby boy, and their decision to try for a second child so the two could grow up close in age. Her second pregnancy with Bo was uncomplicated. They were very relaxed and calm with the pregnancy. So much so that she unexpectedly went into labor with nothing packed and minimal preparations in place.
Unfortunately, in the delivery room, Jessica knew something was wrong the moment Bo was born: silent, gray, floppy, and not breathing. As a seasoned NICU provider, she recognized the signs. But this time, she wasn’t the one at the warmer — she was the mother watching helplessly as her colleagues resuscitated her newborn.
Jessica also shares a deeply painful truth:
“Looking back on his birthdate, that was the worst day of my life. Which, you know, it’s always a struggle thinking about how the birth of your child is the worst day of your life.”
💔 A NICU Parent in Her Own Unit
Jessica describes the surreal experience of seeing her coworkers perform life-saving care on her son — in the same unit where she had spent years working. She didn’t even know Bo’s gender until someone casually said, “Hey there, buddy.”
Bo was quickly transferred to the NICU for therapeutic cooling. Derek, her husband, followed while Jessica remained alone in the delivery room. She recalls asking for Bo to be baptized and being grateful that someone thought to take photos of the moment she was unable to witness.
She reflects on the overwhelming emotional dissonance of becoming a NICU parent in her own workplace:
“My work life and personal life were no longer separated. Everything was just… it was together. It was one.”
The emotional toll was immediate. Jessica recounts the pain of being wheeled into the NICU — her NICU — and feeling the discomfort of returning not as a colleague, but as a parent. She described it as “the walk of shame.” Friends and colleagues avoided eye contact. Staff entered her room while she was pumping. She constantly questioned whether she was being treated like a professional or a grieving parent — and whether people were softening the truth because this was her professional family.
The Cooling Process, Seizures, and a New Kind of Helplessness
During Bo’s therapeutic hypothermia, he was briefly extubated — but began seizing and was reintubated due to the heavy anti-seizure medications that affected his respiratory drive. Jessica shares how it felt to receive calls in the middle of the night while trying to regain a shred of normalcy. She describes struggling to get dressed, unable to bend down after her C-section, and crying in frustration that she couldn’t get back to her son fast enough.
She also opens up about the deep emotional detachment and the parental role alteration she endured during those early NICU days, telling Derek:
“I don’t even feel like I’m his mom. You just stand there, looking at your cold child who’s not doing anything. You can’t protect him. You can’t love him. You can’t hold him. You’re just a visitor.”
Despite her training, Jessica felt powerless — like an outsider in her own child’s care. Her voice, her presence, and her instincts as a mother felt muted by the wires, machines, and unfamiliar role.
In a breakthrough moment, Jessica became the first parent in her NICU to hold a cooled baby — thanks to a courageous colleague who advocated for her. She held Bo on a pillow to protect his core temperature. It wasn’t conventional, but it was transformative — the first time she truly got to be his mother.
Later, a neurologist came in and delivered the news of how bad Bo’s EEG was — confirming the extent of the brain injury they had feared. The results suggested significant neurological insult and carried with it the heavy implication of long-term challenges ahead, including the likelihood of cerebral palsy and developmental delays. Jessica, already emotionally raw, found herself breaking down as the reality of what this meant for Bo’s future began to sink in. Despite all her clinical knowledge, nothing could prepare her for hearing that her newborn’s brain activity was severely compromised — and knowing there was nothing she could do to change it.
The Pain of Leaving the Hospital Without Bo
As Bo remained in the NICU, Jessica and Derek eventually faced one of the most difficult moments of their journey — leaving the hospital without their newborn. Jessica had already been discharged from her postpartum room and spent one final night sleeping upright in a call room chair, determined to stay as close to Bo as possible until he was rewarmed.
Even with her clinical background and trust in the staff, the act of physically walking out of the hospital without Bo was devastating.
To soften the pain of returning home empty-handed, they bought a giant stuffed Dalmatian from the hospital gift shop — something to bring home to their older son, Brady, who was waiting to meet his new sibling. It became a symbol of everything they had hoped to return home with. That stuffed dog still lives in Bo’s closet today, having traveled with them through multiple homes and phases of healing.
🏡 Bo’s Discharge: A Short Stay Doesn’t Mean a Small Impact
After two weeks in the NICU, Bo was discharged. While two weeks may seem brief to those familiar with longer NICU journeys, Jessica emphasizes that the amount of trauma parents endure is not defined by the length of stay. It is all relative and every NICU parent experiences unexpected fear, helplessness, and emotional upheaval throughout their journey despite the length of time.
Every hour of uncertainty, every difficult conversation, and every moment spent watching her son fight to survive had left a deep mark. Bo’s NICU stay — though short on the calendar — was long in emotional weight. From his extensive resuscitation, to cooling, his seizures to waiting for MRI and EEG results, every day felt like a lifetime, and an uphill battle for Jessica and Derek.
By the time discharge came, Jessica and Derek were emotionally exhausted.
“We were done. I was ready to go. We didn’t even hesitate — as soon as we got the green light, we just wanted out.”
Bringing Bo home wasn’t a triumphant milestone — it was a long-awaited exhale after two of the most intense and traumatic weeks of their lives. But the journey was far from over.
Home: A New Battle With Feeding and Guilt
Coming home with Bo didn’t bring the sense of relief Jessica had hoped for — instead, it marked the beginning of an entirely new kind of battle. Bo struggled to feed. He wouldn’t take a bottle, and while he could breastfeed, Jessica suspected he was still aspirating. Still recovering from surgery herself and juggling the demands of a toddler, Jessica felt like she was unraveling.
Despite her years of clinical experience, she was thrust into the all-too-familiar space that many NICU parents know too well: feeling powerless, afraid, and desperate.
“I was ready to bring home an OG and place it myself,” she said — a moment of raw frustration and helplessness that captures how serious the feeding challenges at home had become.
Working 12-hour shifts, she often rushed home to feed Bo, or had him brought to her at work just so he could eat. His weight was dropping, she was concerned he was hypoglycemic, and the exhaustion — emotional, physical, and psychological — was building. He also wouldn’t reliably take his seizure medications, which only added to the anxiety and fear.
Eventually, with a second opinion from a neurologist, Bo was weaned off his seizure medications. And while Jessica felt some relief, the feeding challenges persisted.
Finally, after months of struggling, a developmental pediatrician gave her the validation she needed to move forward with a G-tube.
“I just needed someone to say, ‘Yes, you’re right. This is what you need to do.”
Bo received his G-tube at nine months of age — a decision that brought both relief and a lingering sense of guilt.
Jessica still reflects on how long they waited, how hard they fought, and how heavy the emotional burden was during those first months at home.
“We were just in survival mode… and honestly, sometimes we still are.”
Early Intervention and Bo’s Cerebral Palsy Diagnosis
The journey into early intervention brought a different kind of exhaustion. Jessica speaks candidly about the emotional toll of seeking support services for Bo — the relentless paperwork, repeated trauma narratives, and the constant feeling of being stuck in limbo. She found herself having to explain Bo’s birth story over and over again to different professionals — each time reopening emotional wounds.
And still, they waited. For evaluations. For therapy authorizations. For phone calls that never came. There were delays, doctors suddenly out, and limited availability, even for services Bo clearly qualified for. Jessica, a highly capable medical professional, felt completely overwhelmed — and she knew that if she was struggling to navigate the system, many families without her background were likely falling through the cracks entirely.
As Bo grew, it became clear he wasn’t meeting milestones. Rolling, sitting, eating — everything came with difficulty, or didn’t come at all. Therapists would set developmental goals like “sit independently by 12 months,” and Jessica admits she resented them at first.
“It felt cruel… like, why are we setting this bar when I know it’s not realistic?”
Still, she kept pushing — advocating for earlier PT and insisting on more frequent visits. When their first developmental pediatrician went out on leave and they were told to wait months for a rescheduled appointment, Jessica broke down. Fortunately, through a personal connection, she was able to get Bo into the NICU follow-up clinic, where they finally received more consistent and tailored support.
At two years old, Bo was officially diagnosed with cerebral palsy. Jessica had known it was coming — his muscle tone, developmental delays, and feeding issues had all pointed in that direction. And while the diagnosis itself didn’t come as a surprise, it was moments earlier in their journey that hit her hardest.
“I remember when he first got hand splints because of his thumbs — crying at work over hand splints. But I think that was just like the reality of, like, we need more things for him.”
It wasn’t the label that brought her to tears — it was the accumulating weight of what that diagnosis would mean for his life and their lives. Every device, every appointment, every new need reinforced the fact that life wasn’t going to return to the vision she had once held. Instead, Jessica began the painful but powerful work of grieving and redefining — while continuing to fiercely advocate for her son every step of the way.
Therapies, IEPs, and School
Jessica describes the next phase of their journey: a demanding schedule of weekly physical therapy, occupational therapy, feeding therapy, and speech therapy, which eventually transitioned into school-based services. For years, they juggled multiple therapy appointments each week — and even now, life remains busy with appointments on top of school, work, sports, and the everyday responsibilities of raising two young children.
“We’ve lessened the number of appointments and just do the ones through school now just because there’s not enough time to get him into private. Because it has to be after school. I can’t take him out of school to take him to more appointments.”
She also reflects on the emotional strain of IEP meetings — moments that often leave her heartbroken.
“It’s just that heartbreak every time. And I still… you just feel defeated. You feel defeated when you go to their IEPs.”
Bo continues to make progress in his own time, and Jessica holds onto those moments of progress with appreciation and hope.
“He’s making progress there. And some stuff I’m like, wow, you can do that. And other stuff is just like you’re in third grade, like you should be able to do some of these things.”
Her words reveal the complicated blend of pride, grief, and perseverance that comes with raising a child who works harder than most — and who still brings so much joy.
Bo works harder than many kids ever have to, just to participate in basic activities. He gives it everything — and while his strength and perseverance are remarkable, it’s a constant reminder of how much effort he must give for what others take for granted.
Big Brother Brady: Love, Sacrifice, and a Bond Like No Other
Jessica highlights the quiet, often unspoken impact that Bo’s journey has had on his older brother, Brady. From a young age, Brady was thrust into a role most kids his age aren’t asked to carry — one of protector, encourager, and quiet helper.
“You just think about the things that he hasn’t been able to do just because Bo can’t do it or, you know, the difficulty with things or if we have appointments or things like that. I mean, you can see it on his face sometimes where he’s just missing out on things.”
Jessica acknowledges how much Brady has sacrificed along the way — missing events, adapting to changes in family routines, and learning early how to be patient and empathetic in ways most children aren’t expected to be. Whether it was skipping activities because Bo couldn’t participate or stepping back while medical needs took center stage, Brady felt the weight of it.
Still, what’s grown between them is something remarkable. Their bond is strong and full of moments that bring levity and laughter — like when Bo proudly bosses Brady around or cheers him on at his hockey games. Bo looks up to his big brother, and Brady fiercely protects and advocates for Bo in school and social settings.
“Brady’s very protective of him. And he just wants to make sure that Bo is always included, gets to do everything. He wants him to be able to do everything and he wants to try and figure out how — how can we make sure Bo can do this.”
It’s a relationship rooted in deep love, shared experience, and a maturity far beyond their years — one that continues to evolve as they grow up side by side.
“They just love each other so much.”
Their relationship is full of both care and humor.
“Bo already helps him get things. And sometimes Bo can just boss him around too, which is just so funny.”
Their bond reflects not just brotherhood, but a deep understanding and connection forged through shared challenges and everyday moments of love.
Final Reflections: Final Reflections: Surviving, Acknowledging Real Feelings, and Finding Your Village
As Jessica closes the episode, she leaves listeners with heartfelt and honest advice — not just for parents navigating HIE or cerebral palsy, but for anyone supporting a family living with complex medical needs.
“I think it’s just — it’s okay just to keep your head above water. I feel like most days I’m still just keeping my head above.”
She emphasizes that there’s often pressure for parents to look like they’re thriving, but for many, survival is the goal, and that’s more than enough. She encourages parents to stop hiding their feelings and stop pretending to be okay for the sake of others.
“Feel your emotions. There are just things that surprise me that I get upset about.”
She shares a moment many parents can relate to — breaking down over something as seemingly small as driving a minivan.
“I have to drive a minivan now… you’re forced to drive a certain type of vehicle because you have to take all this equipment with you. You’re forced to live in a certain type of house. You’re forced to have maybe certain types of work schedules… It’s just so much.”
Jessica also speaks to the importance of finding your people — even if they’re not family. She shares how her son’s para-professional and their family have become like extended family, underscoring the value of building a village, even when it doesn’t look the way you imagined.
Perhaps most powerfully, she cautions others to be mindful of the weight behind seemingly well-intended comments like “He’s so lucky to have you” or “You’ve got this because you’re a neonatal nurse practitioner,” reminding us that even kind words can carry pressure and raise unrealistic expectations for parents already carrying so much.
“Now you make me feel like if I do miss something as a mom, or if I don’t advocate for him correctly… like, I should know because I’m a medical professional. But you’re raising the bar on me. I didn’t ask for it to be raised.”
“What do you even say back to that? ‘Thanks’? It just doesn’t feel good.”
These words aren’t just about semantics — they’re about honoring the full humanity of parents. Parents like Jessica shouldn’t have to perform strength to be worthy of support. They shouldn’t have to be exceptional to be believed or validated. Sometimes, they just need someone to sit beside them, without fixing, without judging, without raising the bar even higher.
“It’s okay not to be okay. And we need to let parents sometimes just not be okay.”
It’s a powerful reminder to meet families where they are — not where we think they should be — and to walk with them in their truth, not our assumptions.
Jessica’s story is a powerful reminder that behind every diagnosis is a parent fighting silently, grieving deeply, loving fiercely, and doing their best — even when the world only sees strength. Sometimes the greatest gift you can offer is to quietly listen, hold space without fixing, and find small, meaningful ways to show up for families walking this lifelong road.
Closing
We want to extend our deepest gratitude to Jessica — not only for her vulnerability and honesty, but for her willingness to share personal insight into her family’s life and the emotional reality of parenting a child with HIE and cerebral palsy.
Her story is a powerful reminder that behind every diagnosis is a family navigating it all — full of uncertainty, grief, hope, fear, and resilience — often all at once, all while fiercely advocating for their child.
To every parent walking this path, to the providers offering care, and to the loved ones showing up in quiet ways through the unknown — thank you. You are seen. You are valued. And you are never alone.
It’s important to remember that sometimes the greatest gift we can offer a family on this journey is simply a listening ear or a safe place for them to verbalize their true feelings — without judgment, without expectation.
Jessica’s story stays with us as a call to listen more deeply, advocate more intentionally, and create space where families can be real, raw, and fully heard.
Thank you for being here with us today. Let’s continue to honor, uplift, and walk alongside NICU and HIE families — not just during HIE Awareness Month, but every day.
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