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Finding Support for a NICU baby – Kaitlyn’s Story

Kaitlyn, Jessica, and their family after Kaitlyn came home from the NICU.

In 2002, Jessica Frider gave birth to her first child, Kaitlyn. Kaitlyn had suffered from a lack of oxygen during birth, which caused global brain damage and led to a variety of health difficulties, including cerebral palsy. Kaitlyn was in the NICU for three weeks before Jessica was able to take her home.

Reaching Out

Jessica first learned about CaringBridge from a brochure in the reading room of the NICU. She immediately knew it was something she wanted to do, and set up a page for Kaitlyn a couple days later. “I always liked writing, and it was nice to have an outlet,” she says. “To get it all out there and connect with my family and friends who couldn’t be with me.”

Jessica continued updating her daughter’s page even after taking Kaitlyn home, keeping track of her surgeries and sicknesses, progress and growth. She says it helped her feel connected even when she felt most alone. “So many times my fiancé at the time would have to leave for work, and I was at the hospital by myself,” she recalls. “Being able to share what I was going through and receive support from others made a huge difference.”

Keeping the Memory Alive

After Kaitlyn passed away, Jessica created a memorial page. She also turned her three years of journal entries and the notes of support she’d received into a book, which she says keeps Kaitlyn’s memory alive for her and her 9-year-old son.

She encourages anyone going through difficult medical situations to use CaringBridge—not just to keep others updated, but also as a form of therapy. “You can feel closed off and alone in those long days and nights at the hospital,” she says. “But having somewhere to express your feelings and then look back on your story reminds you of the journey you undertook and shows you your supporters along the way.”

Interested in reading more about other families and their health journeys? You can read about Caitlin and her father’s battle with Guillain-Barré Syndrome or see how Candice S. gained a positive outlook after her husband’s skydiving accident.

About the Author:

Ellen Burkhardt is a freelance writer and editor living in Minneapolis.

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  • By carolyn

    We began our journey a year ago today. Now we add his dad to our list. The journal has been so wonderful for me because not only did it make it easier to share ups and downs but I had a record to refer back to anytime we needed to know when this or that was done. So nice to include just the ones you want to share with and not have to keep repeating myself. Thank God for this site!!!