44 | Learning to Be a Medical Family and Life After the NICU with Dr. Jessica Allen
EPISODE 44
In this episode of the NICU Alumni Podcast, Andrea is joined by Dr. Jessica Allen, a gerontologist, and proud adoptive mama. Jessica shares her family’s NICU experience after her daughter was born prematurely with short bowel syndrome. She speaks about advocating for her daughter’s care, navigating life as a working parent, and learning to manage complex medical needs. This conversation is filled with empathy, encouragement, and practical tips for all families preparing for life after the NICU.
Jessica talks about the emotional weight of discharge, what it means to become a medical family after the NICU, and the importance of support systems and collaborative care. She also shares insights from her research on pediatric quality of life and her work as co-founder of The Gutsy Perspective, an initiative dedicated to uplifting patient and family voices in Short Bowel Syndrome (SBS) and rare disease research. The goal of this initiative is to help reshape the narrative around what quality of life can look like for children with SBS and their families. Thanks for listening!
Quick Notes from the Episode:
Palliative care is not just about end-of-life; it's about quality of life.
Advocating for quality of life is crucial in pediatric care.
Community support in the NICU can provide lasting connections.
The transition home from the NICU can be complex and emotional. Hyper-vigilance is a common experience for families of NICU graduates.
Every NICU journey is unique, and support is vital. Adjusting to being medical caregivers without support is challenging.
Navigating insurance can be another stressor - if you are advocating for care, ask for a caseworker that has a medical background. (Example: Can I speak with someone who has a clinical background?)
It's important to prioritize personal health appointments as a caregiver.
NICU Alumni Grad Guide - Resources Jessica loves
Family Voices - a national non-profit organization that aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
Project Sweet Peas - a national non-profit organization providing support to families and caregivers of premature or sick infants and families impacted by pregnancy and infant loss.
The NEC Society - The world’s leading nonprofit dedicated to understanding and preventing necrotizing enterocolitis (NEC).
Kinder Musik - Music Therapy
Tubie Friends - Stuffed animal friends with tubies (free)
Medicaid Adoption Policies (this is specific to Alabama but can serve as an example)
Gus Gear - Central Line Vest and more
Other fun stuff:
Pop tubes (noise tubes)
Favorite for blowouts (we had to be careful about stool because it can cause central line infection)
Adaptive clothing
*(We at NICU Alumni are not compensated in any way by sharing these resources.)
SPECIAL THANKS:
A special thanks to the Prolacta Bioscience Foundation for supporting the NICU Alumni podcast!
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The purpose of this podcast is for entertainment only and should not be viewed as medical advice.