The long road home

Jennifer Schwertfeger, a Mankato mother of three daughters, knows the trauma of NICU — and beyond — all too well.

Her second daughter, Grace, was born at 24 weeks, weighing 1 pound, 6.2 ounces. 

Early on in her pregnancy, Schwertfeger faced complications, including a torn placenta in her sixth week and a large blood clot attached to her uterus, which also put her in danger. 

Doctors didn’t expect the baby to make it to 14 weeks in utero.

“They told my husband, Mike, and me to prepare for a miscarriage,” Schwertfeger said.

Their daughter was born a micro preemie — defined as a baby weighing less than 1 pound, 12 ounces (or before 26 weeks gestation) — with a 66 to 80 percent chance of survival. 

Miraculously, Grace survived, despite life-threatening health problems, and the family spent the next nine months at St. Mary’s Hospital in Rochester. 

Grace had seven surgeries to address her many health issues. 

But the ordeal didn’t end when she was finally discharged from the hospital.

“She was still so ill that she had a lot of mechanical ventilation,” Schwertfeger  said. “We had nurses in our home for another nine more months. The first four years of her life were critical, and so much to endure.” 

Schwertfeger, whose daughter is now 11 years old and attending school, tells her family’s incredible story in her book Life With Grace: A Reference Guide for Parents of Premature Babies.

“I wrote the book for many reasons — to share my experiences, because it was a very difficult journey, to help others know that they are not alone, and to give people hope that miracles do exist,” Schwertfeger said. 

Schwertfeger’s dream is for every NICU and PICU department in the country to have a copy of her book to provide solace for parents.

Today Grace, who attends special education and regular classes, faces cognitive, behavioral and health challenges, including respiratory issues that require her to use inhalers and a nebulizer. 

“But she is progressing,” Schwertfeger said. “She’s just like any other kid out there — very sweet and will make you smile. She is known as Amazing Grace, because she made it through some amazing times. She is truly a miracle.”

At 120 pages, Schwertfeger’s compelling yet conversational book isn’t a daunting read, and yet it’s rich with information for preemie parents, including emotional survival strategies, practical resources, preemie medical terminology and personal stories of faith — an important part of the Schwertfeger family’s journey.

“Our story is a difficult one, and by all means it wasn’t easy getting to the point of where we are at today,” Schwertfeger said. “But given what we witnessed and saw, I truly know in my heart that God spared her life.”

Dr. Paolo Pianosi, a consultant in the department of Pediatric & Adolescent Medicine, Division of Pulmonology, Mayo Clinic Rochester, called the book “an essential how-to manual” for parents of preemies.

“There is not likely any ordeal more terrifying to a parent than their child experiencing a life-threatening illness. This can become a daily struggle for the parents of an extremely premature infant,” he said. “With no past experience or road map to guide them, parents repeatedly face detours, catastrophes and other delays on their long road home. Life with Grace is an attempt to provide a map of sorts for parents navigating these stormy seas.”

Learn more about the book, which costs $14.99, at lifewithgracebook.com.