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Wraparound care makes all the difference to the Mendoza family

Baby AlexaThree-year-old Alexa will start preschool this fall, a significant milestone for a girl who came into the world with severe and life-threatening medical issues. “Nineteen weeks into my pregnancy our lives were turned upside down when we learned that our baby daughter had a rare tumor growing from her tailbone,” said Christie Mendoza. “My husband and I were in total shock. We left that appointment feeling overwhelmed and scared for our little girl.”

The aggressive, fast-growing tumor put a strain on the baby’s heart, ultimately requiring fetal surgery to remove most of the tumor. “During this month of chaos, everything else was put on hold,” said Christie. “We canceled our family vacation, my husband had to drop out of a leadership training program at work, and our family members took care of our son Jackson while we went to appointments and prepared for the upcoming surgery.” Unsure how to talk to Jackson about his unborn sibling’s condition, they sat down with a Child Life specialist to ask for advice about an age-appropriate discussion with a 5-year-old. “We were shown so much care and compassion in that conversation,” said Christie. “From that point on I knew we were going to get the support we needed to navigate and manage this new path we were on.”

Their baby girl survived the surgery and was placed back into her mother’s uterus to continue growing. Five weeks later she entered the world for a second time, delivered via cesarean section because of early contractions. Alexa was in the neonatal intensive care unit (NICU) for the next 83 days.

Alexa at 3 years old“Day after day I drove back and forth from home to the hospital and home again, juggling the stress and chaos of NICU life along with my regular responsibilities at home. It was exhausting,” said Christie. “I could not have done it without the support and comfort provided by Children’s Minnesota. I would stop by the Family Resource Center on my way to the NICU to grab a quick snack and coffee, where I was always greeted by a smiling face at the front desk. Whenever possible I would take a break to eat lunch at the Ronald McDonald House down the hall, somewhere peaceful to escape the stress and constant beeping of machines in the NICU. Those simple things became critical to my mental health.”

Christie explains that she was so focused on Alexa’s medical care that the typical mother-child bonding process was more difficult in the hospital. Child Life specialists brought new books to Alexa’s room each week so she could read to her baby daughter. A music therapist with a guitar came to visit and sang to Alexa, “and to this day the songs she sang are the songs I sing to my daughter every night.”

A veteran of eight surgeries, Alexa still has frequent appointments with doctors and other specialists. But when she headed off to her first day of preschool, she entered a room of her peers. “It’s finally becoming a reality that after all she has been through, we are seeing the very real possibility of a happy and normal life for her,” said Christie.

 

By: Faith Adams, donor relations officer in the Children’s Minnesota Foundation.

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