Navigating PVS
Pediatric Pulmonary Vein Stenosis (PVS) is rare and life-changing—but you don’t have to face it alone. Join creator and host Jen Joly, a PVS mom and advocate, as she shares real stories of resilience, hope, and community from families navigating this devastating diagnosis.
Episodes
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 cance...
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 conversat...
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...
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...
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 emot...
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 logi...
In this trailer for Navigating PVS, host Jen Joly introduces the mission behind the podcast and what listeners can expect. Jen shares a brief look at her family's journey and explains her commitment to creating a helpful, welcoming space for families impacted by PVS (Pulmonary Vein Stenosis) to come together and share their stories.
Through heartfelt conversations, this podcast aims to shed light on the challenges, triumphs, and...
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