#024 - What Does It Mean to Truly Support a Family Through HIE?

#024 - What Does It Mean to Truly Support a Family Through HIE?

This week, Leah sits down with Betsy Pilon, Executive Director of Hope for HIE, the global nonprofit dedicated to supporting families impacted by hypoxic ischemic encephalopathy. Betsy shares her personal journey as a NICU parent, from the frightening moments before Max's birth to navigating cooling, an uncertain MRI, and a discharge with almost no guidance. Together, they explore what families need most during each phase of the HIE experience, the groundbreaking Polar Bear Care initiative that allows holding during therapeutic hypothermia, and why naming a diagnosis matters. A powerful conversation for NICU families and care providers alike. Support the show [https://www.buzzsprout.com/1739595/support] As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below. Enjoy!

#023 - How Did Faith and Advocacy Carry the Vassells Through the NICU Twice?

Amber and Andrew Vassell navigated two NICU stays with faith, advocacy, and what they call bubbling. From Austin, born at 25 weeks and one pound one ounce, to Aaliyah at 26 weeks, the Vassells built relationships with care teams, requested meetings, asked hard questions, and chose joy in the most uncertain moments. Now they are channeling that experience into Neo Haven and the NICU Journey Guide, designed to help every NICU family navigate with clarity, confidence, and support. Support the show [https://www.buzzsprout.com/1739595/support] As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below. Enjoy!

#022 - What Happens When Nobody Tells You What to Expect in the NICU?

Victoria Varela-Hefty, director of programs at ICU Baby and mother of James, a 28-weeker born in 2024, shares her NICU journey with honesty and grace. From a high-risk pregnancy complicated by Sjögren's syndrome and preeclampsia to an emergency classical C-section, inadequate postoperative pain management, and a cardiac complication that kept her hospitalized for eight days — Victoria reflects on what it felt like to navigate her own medical crisis while her son was down the hall in the NICU. She speaks powerfully about what was missing: not heroic interventions, but simple things — someone acknowledging her feelings, preparing her for what was coming, and reminding her that asking for help was allowed. She also shares how James is thriving today, and what she would want every NICU family to know about the power of pausing. Support the show [https://www.buzzsprout.com/1739595/support] As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below. Enjoy!

#021 - Fighting for Sight: ROP Awareness Week Special

In this special double episode of Beyond the Beeps, we're marking ROP Awareness Week with a full look at Retinopathy of Prematurity — from the medical side to the deeply human side. First, Dr. Faizah Bhatti walks us through what ROP is, its causes, risk factors, stages, and treatment options, while emphasizing why parental advocacy and regular follow-ups are so critical for premature infants. Then, Leah MG Jayanetti sits down with Tyronza Williams, who shares her emotional journey through the NICU with her daughter Alicia, born at just 23 weeks. Tyronza opens up about Alicia's ROP diagnosis, the treatments she underwent, and what it truly means to advocate for your child when everything feels uncertain. Together, these conversations capture both the science and the resilience behind one of the most common challenges facing premature babies. Support the show [https://www.buzzsprout.com/1739595/support] As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below. Enjoy!

#020 - Belonging in the NICU during the Holidays

In this episode of Beyond the Beeps, Leah MG Jayanetti discusses the unique challenges faced by families in the NICU during the holiday season. Joined by Alena Costume, a two-time NICU mother, they explore the emotional rollercoaster of having a baby in the NICU, the importance of community support, and strategies for coping with stress. Alena shares her personal experiences, highlighting the significance of parental presence and the impact of healthcare staff on the NICU journey. The conversation emphasizes resilience, hope, and the need for better support systems for NICU families. In this conversation, Leah MG Jayanetti and Alena discuss the profound experiences of families in the NICU, emphasizing the importance of nourishment, community support, and the unexpected connections that can arise during challenging times. They share personal stories about creating the Touching Tiny Hands organization, the emotional toll of having a child in the NICU, and the significance of hope and belonging in the journey of parenthood, especially during the COVID-19 pandemic. Support the show [https://www.buzzsprout.com/1739595/support] As always, feel free to send us questions, comments, or suggestions to our email: nicupodcast@gmail.com. You can also contact the show through Instagram or Twitter, @nicupodcast. Or contact Ben and Daphna directly via their Twitter profiles: @drnicu and @doctordaphnamd. The papers discussed in today's episode are listed and timestamped on the webpage linked below. Enjoy!