In this episode host Katie Taylor sits down with Ashley O’Neil, a family nurse practitioner and a NICU mom. Ashley shares her journey when her son, Colin, was born at 25 weeks gestation and the following 183 day NICU stay.  Listen to hear how she balanced work, advocating for her son’s needs, coping with personal loss, as well as providing invaluable support and resources to other families in similar situations.

 

"The hardest part isn't being in the NICU; it's the real advocating that starts after discharge." - Ashley O'Neil

 

Key Insights:

Early Challenges: Ashley shares the difficulties of having a baby born at 25 weeks and the emotional turmoil of seeing healthy babies at work while her own child struggled in the NICU.

 

Advocacy: Emphasizing the importance of advocating for her child, Ashley highlights how she meticulously kept records, attended rounds, and communicated her son's needs to the medical staff.

 

Support Systems: The significance of community support and online groups played a crucial role in her journey.

 

Resilience: Despite being told what her son might not achieve, Ashley remained steadfast in her belief in his potential, advocating for her son, and celebrating every milestone and victory.

 

Navigating Systems: The real battle often begins after leaving the NICU, dealing with insurance, medical equipment, and ensuring her child receives the necessary care and resources.

Resources and Tips

Ronald McDonald House: Provides essential housing and support for families with hospitalized children. 

Insurance Navigation: Practical advice on dealing with insurance companies and securing 

 

Kids Grief Support:  Find information and resources to support grieving children.

 

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Links and Resources:

• SupportSpot Website
• Download SupportSpot iOS or Android

• 85% of users report high satisfaction, appreciating the SupportSpot App’s comprehensive resources and user-friendly interface.
• 92%  of parent users say the SupportSpotApp helped them understand medical procedures and treatment better.
• 80% of parents believe the SupportSpot App has contributed to better health outcomes for their child.
• 73%  of parent users believe the SupportSpotApp has made them feel more empowered to advocate for their child in healthcare

Learn more here.

Meet the host: 

Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.

Instagram.com/childlifeoncall

Facebook.com/childlifeoncall

linkedin.com/in/kfdonovan