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Life After NICU With a Medically Complex Child: What is the Reality?

Life After NICU With a Medically Complex Child: What is the Reality?
Dec 18, 2021 · 37m 50s

For NICU Parents, the day they are able to bring their baby home is unforgettable. Many parents have spent weeks and months traveling to the NICU to see their baby...

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For NICU Parents, the day they are able to bring their baby home is unforgettable. Many parents have spent weeks and months traveling to the NICU to see their baby and have endured a large amount of stress, worry, and concern each day as they watched their baby fight against so many obstacles. So when parents hear that they are able to take their baby home, they are so thrilled that many underestimate the challenges they will face at home. For many NICU babies, their complex medical journey does not end once they exit the NICU doors. Sadly, not only do their medical needs continue, but it may actually feel more overwhelming for the parents at home due to new equipment and less resources being available.

Despite all of the coaching and empowerment provided by the NICU, the time at home with a NICU graduate may be more challenging than parents anticipated. And unfortunately, there really is not a proper way to fully prepare NICU parents for the days, months, and sometimes years that follow their discharge, especially for children with complex medical needs. 

For this podcast episode, I sat down with a former NICU Mama, Alissa MacDonald who shares her family’s trials and triumphs as they have navigated through their post NICU days with their son, Tegan, a former 24-weeker. She shares what she has learned along the way and she wants to emphasize to parents that it’s okay to not be okay.

Despite both Alissa and her husband Matt being medically trained and prepared for a foster child with medical needs, they were not aware of the monumental impact Tegan would have on their lives as they previously knew it. Alissa speaks frankly on the challenges they have faced and how important mental health, support from family and friends, and making their marriage a priority has been.

Alissa reflects on how even as a NICU nurse, their days at home with Tegan were very different from what she had envisioned. She now admits that they were not at all prepared for the mental and physical toll it would have on her and their entire family. We discuss how it is not unusual for former NICU parents to feel overwhelmed, unprepared, angry, and alone in their post-NICU journey. Alissa touches on how important it is to find the right community and support system so parents do not feel alone in their journey as well as tangible ways friends and family can help support parents while they are in the NICU, PICU, or at home to ease their journey. 

Stay tuned to hear their remarkable story and one that many NICU parents need to hear so they know that they are not alone in their journey. 

Our NICU Roadmap: https://empoweringnicuparents.com/nicujournal/

For a chance to win a FREE NICU Journal: https://empoweringnicuparents.com/freejournal

Empowering NICU Parents Show Notes: https://empoweringnicuparents.com/episode23

Empowering NICU Parents Instagram: https://www.instagram.com/empoweringnicuparents/

Empowering NICU Parents FB Group: https://www.facebook.com/groups/empoweringnicuparents

iTunes: Empowering NICU Parents Podcast

https://podcasts.apple.com/us/podcast/empowering-nicu-parents-podcast/id1551624574
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Author Nicole Nyberg
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