Experiencing Love and Loss with PVS

Experiencing Love and Loss with PVS

💗 This is a very emotional conversation discussing child loss. Consider having tissues handy and taking breaks as needed while listening. 💗 In this episode, Jen Joly is joined by fellow PVS mom Brenna Smith for a deeply personal and courageous conversation about losing a PVS warrior – her son, Knoxley. Brenna shares Knoxley’s story, from a high-risk pregnancy and extreme prematurity to life in the NICU, a PVS diagnosis, and the complex medical journey that followed. Together, Jen and Brenna talk about what it means to fight for your child through unimaginable highs and lows, while also holding the reality that time may be limited. At the heart of this episode is the experience of loss: what it looks like to say goodbye, to process grief, and to carry forward the love and legacy of a child who changed everything. Because even in the deepest heartbreak, there is meaning, connection, and the enduring impact of a life so fiercely loved.

Finding Comfort in the Cold Realities of PVS

In this episode, Jen Joly is joined by fellow PVS mom Haley Jezewski for an honest conversation about their daughters’ shared love of the cold — and how both moms have learned to keep breathing through it all.  Haley shares the story of her daughter Emma’s birth, NICU stay, and Pulmonary Vein Stenosis diagnosis, while also navigating her own health challenges and the demands of military family life. Together, Jen and Haley talk about what comes after the diagnosis: the endless waiting, the quiet fear, and the small victories that make each day worth living. Because life with PVS doesn’t come with a roadmap, this episode explores what it means to find comfort, and even a little light, in the coldest seasons of parenting.

PVS Life: The Fridge Is Broken and the Phone Won’t Stop Ringing

In this episode, Jen Joly is joined by fellow PVS mom Lauren Bizarro, a former bench scientist who now works in cancer pharmaceuticals, to share the story of her son Myles and their family’s journey with pulmonary vein stenosis. From the shock of a “quiet baby” leading to an emergency admission, to life on an eight-week catheter schedule, Lauren talks openly about the relentlessness of PVS — how it acts like cancer, but isn’t cancer, and the impossible tasks families face along the way. Together, Jen and Lauren dive into what life really looks like when the refrigerator breaks and the phone won’t stop ringing. They also challenge assumptions that caths are “easy,” while finding ways to keep perspective, grieve the life you thought you’d have, and the confidence needed to navigate it all.

Defying Odds and Thriving with PVS

In this special "mini-episode", host Jen Joly sheds light on her own family’s deeply personal journey with Pulmonary Vein Stenosis (PVS) — a story many listeners have asked to hear. Since Summer’s diagnosis at 11 weeks old in July 2022, their path has been marked by uncertainty, fierce advocacy, and the quiet strength of one extraordinary child. From critical care decisions to navigating palliative and transplant conversations, Jen reflects on the resilience it takes to face the unimaginable. And the moments of kindness, clarity, and courage that helped them keep going. This story is about more than survival. It’s about thriving, even when the odds say otherwise.

The PVS Lessons That Change You

In this episode, Jen Joly is joined by Jori Monich—fellow PVS mom, two-time twin mom, and long-time member of the PVS Families group on Facebook. Jen and Jori reflect on their often parallel journeys through the world of pediatric pulmonary vein stenosis as Jori shares her daughter Avery’s story with raw honesty—including that unforgettable moment when someone finally said, “I think we can save her.” Together, they unpack everything from diagnosis trauma and feeding tubes to sibling dynamics, impossible decisions, and the strange blessing of a routine broken arm. They talk openly about guilt, comparison, medical PTSD, traveling for care during a pandemic, and the emotional toll of having to console others while barely holding it together themselves. Jori also shares how she’s helping Avery begin to advocate for herself—speaking up in appointments, recognizing her limits, and finding her own voice in the medical world.