WHEELING - Stephanie Cipriani's first glimpse of her twin boys Noah and Luca came from the side of a hospital gurney while she was still half asleep from her emergency C-section, her tiny little miracles hooked up to a dizzying array of tubes and monitors in West Penn Allegheny Hospital's Neonatal Intensive Care Unit.
It's not how anyone envisions their first steps on the journey of parenthood, but it's a situation Cipriani and other parents of babies born prematurely know all too well. The impact that experience had on her - and a cherished friendship that blossomed from that nightmare - led to the creation of Owyn's Butterfly Kisses, through which Cipriani and co-founder Gwen Schoonover hope to provide financial support and comfort to families who begin parenthood at the NICU.
In September 2011, the new mother from Wellsburg went into labor 13 weeks early. Her sons spent the first 54 days of their lives in West Penns NICU and another two weeks at the Mario Lemieux Transitional Infant Care Center before coming home, where both have grown into healthy, active 20-month-olds.
Stephanie Cipriani of Wellsburg spends time with her 20-month-old sons Noah, left, and Luca at Brooke Hills Park. The twins were born 13 weeks premature, and Cipriani's experience led to her to co-found an organization to assist families with newborns in West Penn Allegheny Hospital's Neonatal Intensive Care Unit.
Photo by Ian Hicks
"It's extremely stressful, extremely overwhelming. Very emotional," Cipriani said. "It's just something I don't think anybody should ever have to experience. ... One day could be you're flying high, you think you're about ready to leave, and the next day they slam you with, "Something's not right. Things aren't going as planned." When they say it's a roller coaster, they mean it's a roller coaster."
About two weeks after her sons were born, Cipriani met Gwen Schoonover, another new mother whose son Owyn and daughter Jacey had been there for three months. They struck up a conversation in the hallway and discovered they had much in common - both gave birth to twins, and both left their jobs so they could be with their children in the hospital.
"The people who have been there for a while kind of take the new ones under their wing. They kind of just steer you through the journey. ... You're going to be friends for life, because nobody else truly understands what you've been through and how far you've come," Cipriani said.
At 15 weeks premature, Owyn and Jacey each weighed less than 2 pounds at birth. Jacey spent the first five months of her life in the hospital.
Owyn never got to come home. He was transferred to Children's Hospital in Pittsburgh, where he died Jan. 5, 2012, of lung complications resulting from his premature birth. It is in his memory that Cipriani and Schoonover founded Owyn's Butterfly Kisses.
The financial burden of a long stay in the NICU on a family can be staggering, without even taking into account medical bills. There's food, as well as gasoline if you're traveling back and forth and lodging if you aren't.
Parking alone cost Schoonover more than $500 during her stay, and she said some of the babies in the unit have no visitors because their families can't afford to put work aside to make the trip day after day. Cipriani and Schoonover hope their efforts will change that.
"I lost my son Owyn and I could not imagine not having been with him every single day. It would have been devastating if I couldn't. That's why we want to help those parents spend every possible moment with their babies," said Schoonover, who is originally from the Pittsburgh area but recently moved to Columbus. "It keeps me busy, and it keeps his name alive. It allows his legacy to continue."
Owyn's Butterfly Kisses began as an informal fundraiser, with Cipriani and Schoonover producing a 2013 calendar depicting babies who were patients in the NICU. After expenses, Cipriani and Schoonover were able to give West Penn $6,800 toward its support activities for parents with children in the NICU. The success of that effort gave them the confidence they could do much more.
"It was a great feeling to be able to give back to the people who saved our children," Cipriani said, noting the staff at West Penn's NICU treat their patients like family - often keeping in contact with and even attending birthday parties of those for whom they've cared.
Cipriani and Schoonover officially founded the organization in February, and Cipriani said they are still awaiting approval of 501(c)(3) nonprofit status. They've knitted tiny "preemie hats" to give to each baby in the NICU, given each mother in the unit a bracelet on Mothers' Day and they plan to hand out mugs stuffed with candy to the dads this Fathers' Day. They are also planning to produce a 2014 calendar that will be available for a donation beginning later this summer or early in the fall.
The mothers are gearing up for their first major fundraiser, a steak fry set for 5-11 p.m. June 22 at the Elm Grove Civics on Sycamore Avenue in Wheeling. For tickets, call Cipriani at 304-639-9990 or send an email to firstname.lastname@example.org.
To learn more about Owyn's Butterfly Kisses, visit www.owynsbutterflykisses.org.