The Incubator: Beyond The Beeps

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 showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

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 showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

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 showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

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 showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

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 showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this episode, Leah Jayanetti speaks with Keira Sorrells, founder of the NICU Parent Network, about her personal journey through the NICU experience with her triplets and the advocacy work she has undertaken to support NICU families. They discuss the importance of family-centered care, the NICU Babies Bill of Rights, and the emotional challenges faced by parents in the NICU. Kira shares her insights on healing through storytelling and the need for self-care among NICU leaders, emphasizing that hope is an expression of love, regardless of the outcomes. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this episode of Beyond the Beeps, Leah interviews Jennifer Bernardo, a passionate advocate and author of 'Week 26', who shares her journey through the NICU with her twins, Luke and Layla. Jennifer discusses the challenges of having premature babies, the healing power of writing, and the importance of community support. She emphasizes the role of presence in NICU care, the significance of involving siblings, and her advocacy efforts to raise awareness about the NICU experience. The conversation highlights the resilience of NICU parents and the hope that guides them through difficult times. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this heartfelt episode of Beyond the Beeps, Leah and Christina discuss the emotional journey of navigating the NICU as a parent. Christina shares her experiences from the moment she went into preterm labor to the discharge day of her son, Caleb. The conversation highlights the importance of building a support system, advocating for your child, and finding resilience during challenging times. Christina emphasizes the need for information and education in the NICU environment, as well as the significance of self-care for parents. The episode concludes with a message of hope and encouragement for families facing similar journeys. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this week’s episode of Beyond the Beeps, Leah and Lina explore the often-overlooked but critical role of communication in neonatal intensive care.The discussion focuses on how clinicians can bridge the gap between technical expertise and human connection. They reflect on practical strategies for listening actively, explaining medical information clearly, and adjusting communication styles to meet the needs of parents and families in high-stress situations. Drawing on real experiences, they highlight the importance of empathy, collaboration, and presence at the bedside, while also addressing the challenges that arise when communication breaks down.The episode also examines the impact of communication on team dynamics within the NICU, from how providers share updates to how they align on care goals. Lina and Leah underscore that effective communication is not just a soft skill—it’s a core component of safe and compassionate care.This conversation offers concrete takeaways for neonatal professionals seeking to strengthen how they connect with both families and colleagues. Whether you are a bedside nurse, physician, or allied health provider, the insights shared here will resonate with your daily practice. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this episode of Beyond the Beeps, siblings of NICU babies share their personal experiences and insights on navigating life with a sibling in the NICU. They discuss the challenges, emotions, and responsibilities they faced, as well as the lessons learned about patience, awareness, and resilience. The conversation emphasizes the importance of support from parents and healthcare providers, and the need for open communication about the realities of having a sibling in the NICU. The siblings also reflect on their hopes for the future and the unique skills they have developed through their experiences. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this episode, Leah and Ashley O'Neil discuss the profound experiences of navigating the NICU as both a parent and a medical professional. Ashley shares her journey with her son Colin, who was born prematurely, and the emotional and practical challenges she faced. The conversation explores themes of grief, the balance between professional knowledge and parental instincts, and the importance of communication with medical teams. Ashley also highlights the need for resources to support NICU families, including her upcoming journal designed to help parents navigate their NICU experience. In this conversation, Ashley O'Neil shares her experiences as a mother navigating the complexities of having a child in the NICU and dealing with the challenges of medical systems. She discusses the importance of advocacy for children's needs, the emotional journey of grief after losing loved ones, and how she finds hope and purpose in her son's resilience. The conversation emphasizes the need for community support and the ongoing battle against systemic failures in healthcare. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this episode of Beyond the Beeps, Leah discusses the journey of NICU families, focusing on gastroschisis, a condition where a baby's intestines are outside the body at birth. Ruby Bacardi shares her personal experience with her son Oliver, who was born with gastroschisis and spent three months in the NICU. The conversation explores the emotional challenges, medical insights, and the importance of support for families navigating this journey. Dr. Daphna Yasova Barbeau provides medical perspectives, while Ruby emphasizes the significance of cherishing small victories and finding hope amidst uncertainty. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

Leah and Shakeema Smiley discuss the challenges and triumphs of navigating life with a child in the NICU, particularly focusing on the experience of having a tracheostomy. Shakeema shares her personal journey with her daughter Lori, who was born prematurely and required extensive medical care. The conversation highlights the emotional and practical aspects of caring for a child with special needs, the importance of advocacy, and the power of hope and community support. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this episode of Beyond the Beeps, Leah discusses the importance of understanding a baby's senses in the NICU with occupational therapists Emily Hills and Lindsay Hardy. They explore the concept of co-occupation and co-regulation, emphasizing the vital role parents play in their baby's development. The conversation delves into the eight senses, the impact of early birth on sensory development, and practical tips for parents to enhance their baby's NICU experience. The episode highlights the significance of parental presence and the right way to interact with babies in a sensitive environment. In this conversation, Lindsay and Emily discuss the vital role of parents in the NICU, emphasizing the importance of breathing, connection, and communication. They explore the concept of touch times, the significance of sensory needs in the NICU environment, and how parents can manage their baby's pain during procedures. The discussion highlights the need for a supportive environment for both parents and healthcare providers, focusing on the shared sensory experiences that can enhance care. Ultimately, they convey a message of hope for families navigating the challenges of the NICU journey. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

Being a NICU parent comes with many challenges, but communicating with your baby’s healthcare team and loved ones doesn’t have to be one of them. In this video, NICU parent Valerie shares her personal journey and offers valuable tips for effective communication with doctors and medical providers. Learn how the right tools and conversations can improve your NICU experience, while also highlighting the importance of self-care, hope, and trust during this difficult time. Whether you’re navigating the NICU or supporting a loved one, this episode provides crucial insights for every NICU family. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this conversation, Leah and Morgan discuss the complexities of being a parent in the NICU, emphasizing the importance of finding one's voice and advocating for their child. Morgan shares her personal journey, highlighting the challenges and triumphs she faced while navigating the NICU environment. The discussion covers themes of power dynamics, the stigma of being labeled a 'difficult parent', the significance of family-centered care, and the necessity of self-care for parents. Ultimately, the conversation aims to empower NICU parents to embrace their role and advocate for their child's well-being. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this conversation, Leah and Parijat Deshpande explore the profound impact of high-risk pregnancies and NICU experiences on parents. Parijat shares her personal journey through a traumatic pregnancy and the lessons learned about intentional living, relationships, and the importance of grieving. They discuss the role of healthcare professionals in supporting NICU families and the need for radical acceptance and mindful presence during such challenging times. The conversation emphasizes the normalization of trauma and the ongoing nature of grief as parents navigate their new realities. In this conversation, Parijat shares her experiences and insights on navigating the emotional landscape of being a parent in the NICU. She emphasizes the importance of understanding and accepting feelings of anxiety and fear as normal reactions to abnormal situations. The discussion highlights the need for empowerment through knowledge, the significance of addressing basic needs during trauma recovery, and the healing potential of trauma informed somatic therapy. Ultimately, the conversation underscores the importance of finding hope amidst uncertainty and the shared journey of NICU families. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this episode of Beyond The Beeps, host Leah Jayanetti speaks with Adriane Rodriguez, a mother whose daughter, Viviana, was born with Congenital Pulmonary Airway Malformation (CPAM), a rare lung condition. Adriane shares the emotional journey of discovering Viviana's condition during pregnancy, navigating complex medical decisions, and spending months in and out of hospitals, including time at the Children’s Hospital of Philadelphia. Adriane recounts the difficult decisions they faced, including the possibility of fetal surgery and the uncertainty about Viviana's ability to survive outside the womb. Viviana's eventual birth was a moment of triumph as she defied expectations, breathing on her own and crying—a miracle after months of anxiety. Adriane discusses the challenges of NICU life, from not being able to hold her daughter to managing Viviana's recovery after surgery. She also reflects on the importance of hope, resilience, and self-care for parents in the NICU, urging them to lean on their support systems. Viviana is now a thriving nine-year-old, embodying the strength and determination she displayed from the moment she was born. This heartfelt episode provides hope and comfort to parents facing similar journeys. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

Annick Duvivier shares her experience in the NICU with her preemie daughter, Thalia, and her journey with pumping and breastfeeding. She discusses the challenges she faced, including the emotional toll of being separated from her baby, the difficulty of pumping and producing milk, and the loneliness she felt. Annick also talks about the importance of kangaroo care and the positive impact it had on both her and her daughter. Despite the hardships, Annick's resilience and determination shine through as she navigates the NICU journey. Annick shares her experience of being in the NICU and the challenges she faced as a parent. She talks about the strict schedule of kangaroo care and feeding, and the difficulties of coordinating pumping and breastfeeding. Annick also discusses the emotional toll of not being able to hold her baby for long periods of time and the isolation she felt without any visitors. She found solace in art and used painting as a form of self-care during her time in the NICU. Annick's painting, which depicts her pumping milk with stickers from the NICU in the background, is a powerful representation of her journey. Despite the initial concerns and risks, Annick's daughter, Thalia, is now a thriving three-year-old with no health issues. Annick encourages other NICU parents to be patient, prioritize breast milk, and seek support from available resources. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this conversation, Pascal van Kipnis shares her experience of having triplets in the NICU. She discusses her struggles with infertility and pregnancy, the challenges of a high-risk pregnancy, and the expectations of having preemie babies. Pascal recounts the birth of her triplets and their admission to the NICU. She talks about the separation and recovery process, as well as the difficulties of breastfeeding and feeding challenges. Pascal also shares the setback her son faced with necrotizing enterocolitis and the emotional challenges of isolation. She highlights the importance of advocacy and support in the NICU and the long-term impact of the NICU experience on her family. This conversation explores the challenges and joys of parenting multiple babies. It provides insights into the unique experiences faced by parents of multiples and offers practical advice on managing sleep, self-care, feeding, and bonding. The conversation emphasizes the importance of support systems and reassures parents that they are not alone in their journey. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this episode of Beyond the Beeps, the conversation explores the experiences of fathers in the NICU and the challenges they face. It highlights the emotional journey of Alex Dominguez, whose daughter Mahalia was born prematurely at 25 weeks and spent six months in the NICU. The conversation touches on the struggles of infertility, the complications during pregnancy, and the difficult decision to deliver the baby early. It also discusses the impact of the COVID-19 pandemic on visitation rights in the NICU. Alex's unwavering dedication to his daughter and his ability to find peace in difficult circumstances are inspiring. Alex Dominguez shares his experience as a father in the NICU and the challenges he faced. He talks about the importance of being physically present and close to his daughter, even if he couldn't be by her side 24/7. Alex also discusses the perception of fathers in the NICU and how he sometimes felt overlooked or disrespected. He emphasizes the need for healthcare professionals to treat both parents equally and provide clear and personalized communication. Alex reflects on the importance of patience and perseverance during the NICU journey. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

Elizabeth Simonton shares her experience of unexpected NICU admission for her full-term baby, Ben. The journey includes pregnancy complications, NICU stay, and the emotional challenges faced by NICU parents. Elizabeth's story highlights the importance of hope, self-care, and community support in the NICU experience. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

In this intimate chat with Leah, Isabella shares her experience of her baby Lily being born prematurely at 27 weeks and being admitted to the NICU. She talks about the initial shock and the unexpected journey of having a baby in the NICU. Isabella shares her daughter Lily's journey in the NICU, from surgery to feeding challenges and extended hospital stays. She emphasizes the importance of trusting your instincts as a parent. Isabella expresses gratitude for the medical staff and the lessons she learned about patience and acceptance. She shares her hope for other NICU families and offers words of wisdom for those currently in the NICU. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!

One NICU mother’s story of resilience in the face of her baby’s multiple medical procedures.In this conversation, Leah interviews Katia Herminio, a mother of a former 24-week preemie who spent almost four months in the NICU. They discuss Katia's unexpected preterm birth experience, the procedures and surgeries her son underwent, the challenges of breastfeeding, and the setbacks they faced. Katia shares her first time holding her baby, the power of hope, and the strength and resilience she found during their NICU journey. She emphasizes the importance of relying on nurses and doctors to help understand the NICU and having faith in the process. Support the showAs always, feel free to send us questions, comments, or suggestions to our email: [email protected]. 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!