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.
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