Navigating PVS

In this episode, Jen Joly is joined by Jessica Sawyer, mother of 11-year-old PVS survivor Jaylie and one of the founding voices behind the PVS Families Facebook community. Jessica shares a story shaped by both heartbreak and hope, beginning with the loss of her son Jude and continuing through Jaylie's remarkable journey as one of the earliest long-term survivors of aggressive pulmonary vein stenosis.Together, Jen and Jessica reflect on what it meant to navigate PVS when there was no roadmap, few treatment options, and little reason for optimism. They discuss advocacy, parental intuition, early intervention, experimental therapies, and the relentless commitment required to stay one step ahead of a devastating disease.Now 11 years old, Jaylie is doing something many families once thought impossible: growing up. From hiking in Glacier National Park to starting sixth grade and learning to advocate for herself in medical settings, her story offers hope and perspective to families still in the thick of their own journeys.At its heart, this episode is a tribute to the pioneering PVS families who went first, the parents who pushed for answers, embraced uncertainty, and helped create a path forward for the generations of children and caregivers that followed.

In this episode, Jen Joly is joined by fellow PVS mom Crystal Costante for a powerful conversation about one of the most difficult topics in the PVS community: lung transplant. Crystal shares the extraordinary story of her son Nathan, who was diagnosed with complex congenital heart disease at birth, later developed Pulmonary Vein Stenosis, and became the first infant with PVS at his Canadian hospital to receive a double lung transplant. Together, Jen and Crystal discuss the moment transplant first entered the conversation, the emotional weight of making that decision, and the whirlwind journey that led to Nathan receiving donor lungs just days after being listed. They also talk about the realities that come after transplant: recovery, rejection concerns, developmental challenges, and learning to build a full life around ongoing medical complexity. At the heart of this episode is a story of resilience, advocacy, and hope. Crystal offers an honest look at the realities of transplant while sharing what seven years later has taught her about survival, motherhood, and celebrating every victory along the way.

💗 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.

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.

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.

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.

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.

In this episode, Jen Joly speaks with Liz Poe, co-founder of The Lady Josephine Foundation, as they explore the layered and deeply human experience of raising a child with Pulmonary Vein Stenosis (PVS). Jen and Liz discuss the emotional and logistical upheavals of traveling for care, the heartbreak of missing life milestones, navigating developmental therapies, and much more.As a mother of four, Liz reflects on the everyday tension of being present for all her children — and the intentional ways she and her husband, Ben, kept their family connected, building meaningful bonds for both their PVS warrior and her siblings.Together, Jen and Liz talk about embracing their own version of “normal” and how building community remains central to Liz and Ben’s mission with The PVS Warriors Foundation, formerly The Lady Josephine Foundation.

In this episode, host Jen Joly talks with fellow working mom Lindsay Hughes about the extraordinary journey of raising a child with Pulmonary Vein Stenosis. The conversation traces Lindsay’s path from her daughter's premature birth at just 24 weeks (and her own traumatic preeclampsia experience) through life in the NICU, ongoing medical crises, and the realities of long-term caregiving.Together, Jen and Lindsay explore the emotional highs and lows of parenting a medically complex child—while also managing demanding careers. They discuss the importance of flexible employers, the role of state insurance, and the quiet strength it takes to juggle it all. With personal insights from both women, this episode is a powerful testament to resilience, advocacy, and the support that comes from shared experience.

In this episode, host Jen Joly is joined by U.K.-based PVS Mom, Mischa Hand. Jen and Mischa share their heartfelt journeys as mothers navigating the complexities of their daughters' pulmonary vein stenosis (PVS). Despite living in different countries, their experiences highlight the universal challenges of advocating for their children's care, from securing access to specialized treatment to balancing the emotional and logistical hurdles along the way.Through candid conversations about the U.S. and U.K. healthcare systems, they explore how advocacy transcends borders, connecting families in a shared mission to provide the best possible outcomes for their children. This episode offers insights, hope, and solidarity to parents facing similar paths.