Emma Nickole Harper, 3 1/2, spent the first four months of her life at an Albany hospital after being born at 26 weeks. Nicki, as she is known, will be the poster child for a new Ronald McDonald House that will be situated on the campus of Georgia Regents University. (July 14, 2013)
LEESBURG, Ga. -- Over the last few years, circumstances have resulted in Stephanie Oxley, as well as a few of her family members, making good use of the Ronald McDonald House in Augusta.
The Ronald McDonald House Charities of Augusta will soon be getting a new facility on the campus of Georgia Regents University, and the hospital's poster child will be a little girl from Leesburg.
Emma Nickole Harper, known to her family members as "Nicki," was delivered on Dec. 1, 2009, at 26 weeks of gestation via Caesarean section after Oxley's 20-week ultrasound revealed that Nicki's kidneys were dilated because she was not releasing amniotic fluid as she was supposed to.
Oxley said that it was Christmas Day before she got a chance to hold Nicki.
The diagnosis was hydronephrosis. At the time of her birth, Nicki weighed in at 1 pound, 8 ounces and was 12 inches long. She spent the first four months of her life in the neonatal intensive care unit at Phoebe Putney Memorial Hospital.
Following that, she went to Children's Hospital of Georgia in Augusta, where she received a feeding tube. She was diagnosed with seizures and had kidney surgery in July 2010. She still has the feeding tube, as well as the occasional seizure, and lacks fine motor skills as a result of a stroke she had shortly after birth.
"It (the hydronephrosis) could not be fixed," Oxley said. "She could still lose her left kidney. She has some mild developmental delays, but otherwise she is doing great."
To this day, the Ronald McDonald House in Augusta continues to be used every one to three months by Nicki's family while she goes to Children's Hospital of Georgia to undergo neurology and kidney checkups, as well as feeding tube checkups and eye exams.
Oxley's first experience there was in March 2010, a stay that lasted for six weeks.
"They made us feel at home," she said. "... If it wasn't for the Ronald McDonald House, we would not have been up there for her appointments. It would have been outrageous to have a hotel room for $60 a night for six weeks.
"There is one hotel that is prorated, but it still gets expensive, and I didn't have a job then."
Nicki's family will usually arrive at the house the night before every appointment and then leave immediately after. Consequently, the staff has gotten to know them pretty well.
"Nicki and her mom and grandmother are like family to us," said Betts Murdison, president and CEO of the Ronald McDonald House Charities of Augusta. "They have been coming here for three years, and we love them. They are huge supporters of our house -- both when they are here and when they are back at home. We have watched Nicki grow up and have celebrated in her triumphs and shared in her setbacks with her mom.
"Her story is like so many other of our families' stories. ... We are here to take care of the everyday concerns so that families can focus on the important stuff -- the health of their child. Nicki represents the 631 families we served last year, from counties across Georgia and beyond."
Oxley said the importance of having a resource like that nearby stems from the need for the children at the hospital to have their families by their side when they are needed most.
In many cases, since a lot families would have to travel long distances to be with their loved ones, there are no other means for the parents to be with their children.
"A baby needs their family," she said. "That's what makes them strong. That's what makes them strive. I've seen many families not be there, with the babies only having the medical staff by their side."
Nicki's being declared the poster child for the new facility, which breaks ground on Tuesday, was a complete surprise to Oxley.
"It's an honor. I cried when I saw the poster with her face on it," she said. "They didn't tell me or ask me. When they told me, I busted out crying.
"They said they could not see any other little girl (as the poster child). If you hear her story and everything she has gone through ... the doctors told us after the stroke to pull the plug, and that if she lived, she would be a vegetable."
Oxley said she is currently trying to get her daughter off the feeding tube, and the seizures are controlled with medications. Nicki also wears glasses, and is unable to feed herself with a fork and spoon due to the damage caused by the stroke.
"She's doing good. We just have to keep working with her," Oxley said. "... I hope the NICUs in hospitals in small towns see her (face) and see that they need (a Ronald McDonald House)."