If it weren’t for the monitors and tubes around her, 5-month-old Baylee Roles wouldn’t look sick. Her big blue eyes, broad smile and laughter doesn’t betray her serious heart condition.
“Besides her heart, she’s a happy little girl,” said Baylee’s 22-year-old mother, Ricki Roles of Roseburg, from the Seattle hospital where Baylee is being treated.
Baylee was born with pediatric cardiomyopathy, a condition that describes her enlarged heart, which is too lazy to support her body.
A heart transplant is inevitable; it’s just a matter of when.
Ricki Roles and her mother, Ellen Smith, 46, of Roseburg are in Washington this week caring for the 11-pound, 8-ounce baby while they wait to see if she qualifies for a heart transplant.
Roles would prefer to hold off on the operation as long as she can.
“The stronger she is, the better chance she has to make it,” Roles said.
In order for Baylee to be released from the hospital, she must be weaned off her medication, milrinone.
“It’s basically the drug that’s letting her live right now,” Smith said. “It excites your heart and lets it beat strong.”
This is the second time she’s been on this medication, which is dispensed to her through an IV.
In Seattle they are staying at the Ronald McDonald House, which provides low-cost housing to families with seriously ill children.
The Roles-Smith family has been in Seattle since Thursday.
Before that they were in Portland, where Doernbecher Children’s Hospital staff referred them to Seattle for more extensive care.
If Baylee cannot be weaned off her medication, she will have to stay in Washington.
If she is put on the list for a heart, the transplant will take place in Seattle. Roles and Smith would have to move to Seattle for at least two years.
“I’m not leaving this baby,” Smith said.
Roles’ older sister, Brianna Stocks, is in Roseburg spearheading a campaign to raise money to pay expenses.
“I’m trying my best down here to stay strong for everyone,” Stocks said.
Stocks has organized a car wash from 9 a.m. to 3 p.m. Sunday at the Dutch Bros. on Stewart Parkway in Roseburg. Toby, Roseburg’s popular sign holder, will be there waving signs.
Last Sunday, she held a car wash in Winston and raised $1,000.
Loggers Tap House in Roseburg will donate 15 percent of its proceeds to customers who specify Aug. 11 that they are there to help Baylee.
People have donated nearly $6,000 through gofundme.com.
“It’s amazing to watch the community come together for my daughter,” Roles said.
• Reporter Megan Campbell can be reached at 541-957-4221 or firstname.lastname@example.org.