This year’s Mother’s Day celebration is especially meaningful to Jennifer Schwertfeger and her family, as they mark the 10th year since the birth of their middle daughter, Grace. Born prematurely and nicknamed “Amazing Grace” by healthcare workers and family members, Grace spent the first year of her life as a resident of Mayo Clinic’s Pediatric Intensive Care Unit at Saint Marys Hospital.
In her recent autobiographical book, “Life with Grace: A Reference Guide to Premature Babies,” Schwertfeger details the trials of her high-risk pregnancy and the subsequent birth and medical needs of Grace. Born at only 24 weeks and weighing just 1 pound, 6.2 ounces, Grace was considered a micro-preemie. She was roughly the size of a 20-ounce bottle of soda and had approximately a 50 percent chance of survival.
In “Life with Grace,” Schwertfeger describes the first year of their unusual family life and the constant travel between Rochester and Mankato, making even the potty training of their older daughter, Autumn, a challenge. Home was no longer just Mankato; it was Mankato, local hotels and the Rochester Ronald McDonald House. Thankfully, random acts of kindness were extended to the family in a variety of ways.
“Sometimes in our lives, we get to witness so many things, and I think for [some], they feel that [need] to help others,” Schwertfeger said. On one occasion, the family received an anonymous gift of a gas card to help defray some of the cost of traveling between Rochester and Mankato.
Each New Day A Gift
Struggling with many of the common complications of a premature birth, including Respiratory Distress Syndrome, Respiratory Syncytial Virus, reflux and the eventual need for a tracheotomy tube, each new day of that first year with Grace was a gift. Though the years have passed and Grace has grown stronger, the sights and sounds of those stressful first years continue to replay in the family members’ minds.
“Our life was crazy — it was traumatic,” Shwertfeger explains. “It [was] like going to war…you try to relax as the years progress, but it’s still a part of you. You still remember. You envision. You hear the sounds.”
Advocating For Your Child
Realizing their story might help others, Schwertfeger began detailing Grace’s fight in a forthright and honest manner, providing both information and support to other families facing similar experiences. “I had to do something with this information because it was so difficult,” she explained. Schwertfeger wanted to help others who might be going through the same thing by providing an informational resource.
Schwertfeger stresses the importance of being an advocate for your child. “If you feel in your gut that something is wrong, [the doctors] may give you advice, but you still have to make that primary decision [for your child].” She explains that she and her husband didn’t initially realize all the rights they had as parents, and that all parents need to understand what rights they have.
Grace is now 10 and in the fourth grade, and although she has some minor developmental delays, overall she’s a happy, well-adjusted child. For more information about Grace’s story, you can visit Schwertfeger’s website at lifewithgracebook.com or email firstname.lastname@example.org.
Catherine H. Armstrong is a full-time community volunteer and stay-at-home mom. She holds a bachelor’s degree in journalism from the University of Oklahoma and has recently begun writing novels.