When Shawn and Kimona Keenen's daughter Savannah was born, people weren't sure what to say.
Congratulations, or I'm so sorry?
Savannah was born 13 weeks prematurely, weighing just 1 pound, 11 ounces. Doctors put her chances of survival at 10 percent.
The shell-shocked Keenens spent the next 91 days in a haze of hope and fear, watching Savannah fight for her life in the neonatal intensive care unit.
But in many ways, the real challenges started when Savannah came home, accompanied by an arsenal of tubes, monitors and medications.
Nearly five years later, Savannah, a lively, outgoing preschooler, still battles health problems stemming from her early arrival.
And the Keenens, of Lancaster Township, still struggle to repay medical bills and related expenses they were forced to put on credit cards.
Those challenges inspired them and other parents to start Tiny Miracles, a program that provides emotional and financial support during the difficult transition from NICU to home.
Kimona Keenen, who has a seemingly unflappable optimism and a full-time job in medical billing, volunteers at least 10 hours a week with Tiny Miracles.
She recently won a local Jefferson Award for public service and will vie for national honors at a June ceremony in Washington, D.C.
Savannah's prematurity and lingering challenges taught Keenen, 35, that life doesn't always go as planned.
Now she's calling on the advocacy skills and sheer persistence she honed on her tiny daughter to face another unexpected battle.
One for her own life.
An early arrival
About six months into a perfectly normal pregnancy, Keenen went to the grocery store.
She returned home exhausted, the veins in her legs bulging.
Savannah was born two days later, on June 14, 2003, via emergency Caesarean section, at Lancaster General Women & Babies Hospital.
The Keenens were too stunned to take photos of their daughter, whose tiny footprints were the size of her mom's thumb. They hadn't bought a crib or even had a baby shower.
"Who has that done when you're not even six months pregnant?" Keenen says.
As the shock faded, they settled into a routine of rushing from work — Shawn at Premier Custom Built Cabinets, New Holland; Kimona at Narvon's Zerbe Sisters Nursing Center — to the NICU.
The Keenens, now married 10 years, taped family photos to Savannah's hospital bed and read Winnie the Pooh stories to her. But they couldn't hold her for six weeks.
Savannah battled numerous infections and episodes where her heart rate dropped so dangerously low that she turned blue.
But she proved early on that she was a fighter, even yanking out her feeding tube.
Savannah's 91 days in the NICU were a physically and emotionally exhausting roller coaster for the Keenens.
Tiny Miracles grew out of impromptu pizza dinners with other NICU parents who were seeking support.
"There was a need," Keenen says. "No one was filling it."
Tiny miracle
Savannah finally came home that September, tethered to an oxygen tank and an alarmed heart monitor and on a regimen of 11 daily medications.
Her immune system was so weak, she rarely left the house.
"A cold to her is like pneumonia," Keenen says. "That's how serious it is."
Expensive specialized equipment — bottles, formula, clothing, car seats — went on the Keenens' credit cards. To help Savannah cope with her chronic lung disease, they installed central air conditioning in their modest bi-level home.
Rather than quit her job to care for Savannah, Keenen's employer allowed her to work from home. Otherwise they could have easily lost their house, Keenen says.
She learned to overcome her initial hesistancy and speak up for whatever her daughter needed, from surgery to therapy.
Savannah, who now attends Calvary Church preschool, is small for her age, with low muscle tone, food allergies and acid reflux.
But more importantly, she's funny, smart and wonderfully quirky.
"We can't complain," Keenen says. "Some people go home without a baby."
A new battle
In December 2006, Keenen found a lump in her left breast.
Two mammograms, two ultrasounds and four biopsies showed nothing suspicious.
But Keenen insisted on more testing, a lesson she learned from her advocacy for Savannah.
"I want to be around for her when she has children," she says.
In six months, Keenen had four surgeries and battled the drug-resistant infection MRSA. She is now undergoing six weeks of daily radiation treatments.
Keenen's illness hasn't impacted her dedication to Tiny Miracles, says S. June Smith Center director of development Shannon Zimmerman, who nominated Keenen for the award.
"She's a very caring, warm-hearted person," Zimmerman says. "She puts so much time and energy and effort into Tiny Miracles, it's incredible."
Treatments have derailed the Keenens' plans to have another child. And Keenen admits she's exhausted from the radiation.
But helping others, whether it's knitting a baby blanket for the NICU or steering parents through the benefits system, somehow makes her own problems seem smaller.
"Don't waste your time," she says. "Do things that are important."
Keenen's prognosis is good. But it's impossible to forget that breast cancer is often more aggressive in younger women.
In the meantime, she's not about to sit around, waiting for another miracle.
HELPING OTHERS
Tiny Miracles eventually moved out of the hospital and under the umbrella of Lancaster's S. June Smith Center.
Program volunteers connect NICU families with community resources, including donated clothing and car seats, and raise money to help pay for hotel rooms, gas cards and other bills.
NICU "graduate" mentors walk parents through medical red tape and brand new realities, like Early Intervention services — or just share support over pizza.
Co-founder Kimona Keenen hopes to eventually start parent resource libraries at local NICUs and offer educational seminars.
The program currently needs volunteers, funding and storage space.
"If you need meaning in life, go out and volunteer with a group," Keenen says. "You'll find it."
Tiny Miracles helped Tia and Shaun Hashinger find a car seat small enough for their daughter, Kiera, who weighed 3 pounds, 11 ounces at birth.
Now Mrs. Hashinger, of Quarryville, volunteers with the program.
"I knew that there was somebody out there who could relate to me," she says. "I wanted to be able to tell my story to other people who feel the same way."
FOR YOUR INFORMATION
Tiny Miracles will host a Scrapbooking Day, 8 a.m. to 4 p.m. Saturday, April 12, at Quality Inn & Suites, 2363 Oregon Pike, Lancaster.
Registration fee of $30 includes table space, a buffet lunch and raffles. Preregistration is required. Proceeds benefit Tiny Miracles.
To register, learn more about Tiny Miracles, or donate time or money, call 299-4829 or e-mail
tinymiracles@sjunesmith.org.
CONTACT US: mschweigert@LNPnews.com or 291-8757 
