Inside the Children's Hospital

This week's guest opens up about the shock of an emergency C-section at 25 weeks and 3 days, the fear of entering the NICU for the first time, and the powerful role Child Life Specialists played in supporting not only Vincent, but their entire family, including his older brother. She reflects on what helped her cope during long NICU days, how she advocated for herself using her healthcare background, and what she wishes she had known about the "medically complex" label sooner.
This episode explores sibling bonding in the NICU, the impact of a truly integrated care team, the importance of addressing social determinants of health, and how resilience can grow in the smallest of patients. Anna's story is a beautiful reminder that families may not remember every name—but they will always remember how they were made to feel.
Today's Episode is sponsored by Moog Medical. Moog Medical is a trusted leader in infusion and enteral feeding technology, designing reliable, easy-to-use pumps that support safe, precise care for patients with complex medical needs—at home and in healthcare settings.
Resources Mentioned Today's Episode:
Hand to Hold
March of Dimes
Ronald McDonald House
Caringbridge
Connect with Anna: Anna is open to connecting with other NICU families—please email us at [email protected] if you would like to connect with her!
Connect & Support from Child Life On Call:
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Medical information provided is not a substitute for professional advice—please consult your care team.
Keywords: micro preemie, NICU journey, 25 week preemie, medically complex child, chronic lung disease in children, antepartum hospitalization, emergency C-section, sibling support in NICU, child life specialist, Ronald McDonald House, Hand to Hold, March of Dimes, NICU discharge, parenting after the NICU, medical motherhood, resilience in children, premature birth support, Midwest NICU mom

When tube feeding enters your life—whether at birth, in childhood, or adulthood—it can feel overwhelming, isolating, and misunderstood. In this special live episode of Inside the Children's Hospital, we center the voices of those with lived experience to explore what tube feeding really looks like beyond the diagnosis and discharge instructions.
Host Katie Taylor is joined by parent advocates, a young adult patient, and a pediatric dietitian to share honest, unfiltered perspectives on NG tubes, G-tubes, GJ tubes, and blended feeds. Together, they discuss early fears and misconceptions, navigating medical systems and insurance, advocating for better options, and how tube feeding can ultimately bring relief, stability, and freedom. This conversation highlights the power of community, the importance of being believed, and what compassionate, family-centered support truly looks like—for patients, parents, and professionals alike.
Today's Episode is sponsored by Moog Medical. Moog Medical is a trusted leader in infusion and enteral feeding technology, designing reliable, easy-to-use pumps that support safe, precise care for patients with complex medical needs—at home and in healthcare settings.
 
Resources from today's episode:
Oley Foundation 
Infusing Hope Conference

Join Oley for Community, Education, and so much more!


Blended Tube Feeding Instagram 

Luma Clean Cares

A SXSW Short Film on the reality of tube-feeding, called 'Unholy'

Connect with Guests from Today's Episode:
Kelsey Ward – Parent advocate and medical parent, Follow Kelsey on TikTok
Brady Crandall – Parent advocate and founder of YouthCrews
Alexa Quintero – Patient advocate and young adult with lived tube feeding experience
Hilarie Geurink, RD – Pediatric dietitian specializing in flexible, real-food tube feeding, Founder of Blended Tube Feeding
Connect & Support from Child Life On Call:
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to search stories and episodes easily



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!

 
Keywords:
Tube feeding awareness, G-tube parenting, NG tube experience, GJ tube support, Medical parent advocacy, Pediatric nutrition support, Blended tube feeding, Real food tube feeding, Feeding tube myths, Medical trauma and advocacy, Young adult chronic illness, Child life support, Family-centered care, Hospital parent support, Living with feeding tubes
Medical information provided is not a substitute for professional advice—please consult your care team.

When your child's life is shaped by medical complexity, childhood can quickly become defined by hospital stays, procedures, and limitations. In today's episode, we explore how medically supported camps transform that narrative—creating space for joy, belonging, and healing for children, families, and even healthcare providers themselves.
Katie Taylor is joined by Dr. Laura Blaisdell, Chief Medical Officer of SeriousFun Children's Network, and Jamie Gentille, Child Life Specialist Leader and former camper, to share the life-changing impact of camp for children with serious illnesses. From zip-lining with oxygen tubing to late-night cabin chats that build confidence and identity, this conversation highlights how thoughtfully designed camp experiences allow kids to be kids—without compromising medical safety.
This episode explores the power of positive childhood experiences, how camps seamlessly integrate complex medical care behind the scenes, the role of child life specialists and medical volunteers in creating safe spaces for play, and why camp is just as healing for providers as it is for children. You'll also hear Jamie's personal journey from camper to child life specialist and why camp will always feel like home.
Explore Child Life On Call's directory of medical and disability-friendly summer camps for kids! This resource helps families find inclusive summer camp options that support children with medical needs and disabilities, making it easier to plan fun, safe, and engaging summer experiences.
Today's Episode is sponsored by Moog Medical. Moog Medical is a trusted leader in infusion and enteral feeding technology, designing reliable, easy-to-use pumps that support safe, precise care for patients with complex medical needs—at home and in healthcare settings.
Resources from today's episode:
Medical & Camp Support:
SeriousFun Children's Network



Hole in the Wall Gang Camp



Painted Turtle Camp



Medical volunteer opportunities through SeriousFun


 Connect & Support from Child Life On Call 
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to search stories and episodes easily



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!


Keywords:
Medically complex children, Pediatric medical camps, SeriousFun Children's Network, Child life specialist, Positive childhood experiences, Pediatric chronic illness support, Medical trauma healing, Camp for children with illness, Family-centered care, Pediatric resilience, Provider burnout prevention, Therapeutic play, Sibling support, Pediatric healthcare community
Medical information provided is not a substitute for professional advice—please consult your care team

When your child survives one medical emergency only to face another, parenting becomes a constant act of advocacy and courage. Today's guest joins us to share her daughter's journey with rare and complex medical conditions, from early respiratory failure and unexplained hospitalizations to epilepsy, lung disease, and life with medical uncertainty. As a military spouse navigating deployments, Brittany shares what it means to walk this path largely alone, trust her instincts as a mother, and fight to be believed by medical professionals.
This episode explores navigating rare disease without clear answers, the life-changing impact of compassionate child life support, supporting siblings through medical trauma, and how rituals, play, and community help families find hope and meaning in the midst of chaos.
Download our free Children's Hospital Passport to help empower your child and family during hospital stays.
Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.
 
Resources from today's episode:
Medical Support:
 Stanford Children's Health
 Undiagnosed Diseases Network
Nonprofit & Community Support:
Live Like JoJo Foundation
The Meg Foundation (Pediatric Pain & Poke Plans)
 Brave Bears Club (Epilepsy Support)
Child Life Mommy
CHYP
 Connect with Brittany
Follow Brittany's journey as she shares life as a medical mom, military spouse, and advocate.
 
 Connect & Support from Child Life On Call 
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to easily search stories and episodes



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!

 
Keywords:
Rare disease parenting, Medical motherhood, Medically complex child, Pediatric lung disease, Pediatric epilepsy, Intractable epilepsy, PICU parent experience, Military family healthcare, Parent advocacy in healthcare, Child life specialist support, Sibling support during hospitalization, Parenting after medical trauma, Coping with chronic illness, Undiagnosed disease journey, Hospital parent support
Medical information provided is not a substitute for professional advice—please consult your care team

When your newborn is healthy one moment and rushed to the PICU the next, life can change in an instant. Today's guest joins us to share her son's journey with severe hemophilia—from unexpected bleeding after a routine circumcision to a spontaneous brain bleed, emergency surgery, and a months-long PICU stay. This episode explores being thrust into medical motherhood, learning to advocate under unimaginable stress, and how community, child life, and modern medicine help families navigate life with a complex diagnosis.
Download our free Children's Hospital Passport to help empower your child and family during hospital stays.
Sponsored in part by HealthWell Foundation—learn how you can help families afford life-saving medications at healthwellfoundation.org.
Resources
Medical Support:
Mayo Clinic Children's Center & Hemophilia Treatment Center, Rochester, MN

Nonprofit & Community Support:
Hemophilia Foundation of Minnesota & the Dakotas



Connect with Sami
Follow Sami and Cooper's journey on Instagram

 Connect & Support from Child Life On Call 
Subscribe: Never miss an episode on Apple Podcasts or Spotify.



Visit insidethechildrenshospital.com to easily search stories and episodes



Follow us on Instagram for updates and opportunities to connect with other parents



Download SupportSpot: receive Child Life tools at your fingertips.



Leave a Review: It helps other families find us and access our resources!



Keywords: Severe hemophilia, Hemophilia in infants, Newborn hemophilia diagnosis, Infant brain bleed, Pediatric hemophilia, Medical motherhood, PICU parent experience, Emergency brain surgery infant, Rare disease parenting, Bleeding disorders in babies, Hemophilia treatment center, Parent advocate in healthcare, Life after a NICU or PICU stay, Medically complex child, Child life specialist support, Coping with a chronic diagnosis, Parenting after medical trauma, Hemophilia A awareness, Infant seizures medical emergency, Hospital parent support
Medical information provided is not a substitute for professional advice—please consult your care team.