Making a Difference: From Patient to Advocate - Rita Mirabelli

In this conversation, Andrea and Rita discuss their experiences with the NICU and the challenges they faced. They talk about the emotional impact of the NICU stay, the difficulties of bonding and providing care in the NICU, and the feeding challenges they encountered. They also discuss the importance of celebrating milestones and how their children have connected with their NICU experiences as they've grown older. Rita shares her involvement in supporting NICU families through the NICU Family Advisory Council and the March of Dimes. She discusses building relationships to support NICU organizations and her experience working within hospital systems.

Quick Takeaways from the Episode:

• The NICU experience can be emotionally traumatic and challenging for parents, regardless of the length of stay or the severity of the baby's condition.
• Bonding and providing care in the NICU can be difficult, and parents may feel anxious and unsure about their role in their baby's care.
• Feeding challenges are common in the NICU, and parents may need support and guidance from lactation consultants and healthcare professionals.
• Celebrating milestones, no matter how small, is important for parents and can help them recognize their child's progress and growth. Rita shared: “Looking back, I think that's a huge part of getting through the journey intact is to celebrate those wins.” 
• Children who have experienced the NICU may have a unique connection to their journey and may embrace their story as part of their identity as they grow older.
• Involvement in supporting NICU families, such as through family advisory councils and organizations like the March of Dimes, can provide a sense of purpose and help parents give back to the NICU community. Building relationships with others who have can through the same experience can be a positive experience as you process your own journey.
• Working within the hospital system can be challenging, but it can also be a catalyst for pursuing policy change and advocating for improvements.
• Conversations with extended family may be awkward but the underlying message is that while you may need to be more cautious with your NICU Grad you still want to include your family… it may just look a little different at first.

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The purpose of this podcast is for entertainment only and should not be viewed as medical advice.