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 famili...

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,...

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 reflect...

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....

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 sign...

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 insi...

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...

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...

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...

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 deve...

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,...

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 import...

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...

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...

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 m...

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. Ch...

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...

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...

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...

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. K...

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 tr...

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 show As always, feel free to send us questions, comments, or sugg...

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...

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...