The sound of a baby crying came from the other room.
“Excuse me,” Nicole Draper said as she wearily rose
up from the couch to check on her twin boys.
She returned and sat down with her son Nate in her arms.
“Nathaniel, Nathaniel,” she sang while gently
rocking Nate in her lap, and he began to fall asleep.
It was Thursday, a week to the day after Nate Draper was
released from UCLA’s Mattel Children’s Hospital to be
reunited with his identical twin brother Nick, who received a heart
transplant earlier this year; his six-year-old sister Carrie;
five-year-old twins Brendan and Emma; and his parents Nicole and
Michael.
On the day of Nate’s return home, the Drapers had all of
their children at home together for the first time since Nick and
Nate were born on July 11, 2005.
Nicole Draper said it was nice having the entire family under
one roof, adding that Nick and Nate “have been doing really
well.”
Though both twins are now home, they are both on medication and
it is still necessary for them to eat through feeding tubes.
Nick has 15 medications that he takes two to three times a day,
and Nate takes eight medications a few times a day, she said.
She added that with medication and feeding schedules, on top of
the normal needs of a five-child family, their life is very
busy.
“I will not lie, it is crazy ““ and that’s with
my mom here helping,” she said.
Throughout the ordeal, Nicole has occasionally had the help of
her mother and sister, but said a lot of the time she has taken
care of all the children by herself.
The Draper family has received some help from UCLA students and
UCLA Medical Center volunteers.
“The doctors and the UCLA community have been great ever
since we got here,” Nicole said.
Amanda Jan, who graduated from UCLA last year with a degree in
psychobiology, said she met Nick and Nate this year while
volunteering at the hospital.
She e-mailed Nicole Draper to ask if she needed any help, and
said she has since baby-sat the Drapers’ older children three
or four times.
With Nate’s release from the hospital, the Draper family
saw light at the end of the tunnel in what has been a difficult,
roller-coaster ordeal, stretching out over 11 months.
Nick and Nate suffered from dilated cardiomyopathy, a rare
disease in which the heart muscle is weak, swells up and cannot
pump blood fast enough to keep up with the body.
Immediately after the twins’ birth, doctors in Phoenix
determined Nick and Nate would need heart transplants. The twins
were then transferred to UCLA Medical Center, where their condition
could be stabilized and they could await heart transplants.
Doctors at UCLA said Nick and Nate were in bad shape when they
arrived at UCLA’s Mattel Children’s Hospital.
“They were very, very sick at that time,” said Dr.
Juan Alejos, Nick and Nate’s cardiologist at UCLA and medical
director of the UCLA Pediatric Heart Transplant Program. “We
weren’t sure what would happen.”
Through those 11 months, the ups and downs have been
drastic.
“That first weekend was really scary. They were talking
about (Nick and Nate) not making it through the weekend,”
Nicole Draper said.
But there have been many breaks for the Drapers along the
way.
In January, Jonathan Faulkner, the general manager for
UCLA’s Tiverton House, a hotel for UCLA patients and their
families, read about the Draper’s story in a Los Angeles
Times article.
“I felt that they should be (at the Tiverton House) and
that we could better meet their needs,” Faulkner said.
Nicole Draper said at first they didn’t think they could
afford to stay at the hotel, which typically charges $105 a
night.
But with the help of funds from the Tiverton Housing Assistance
Program, the Drapers were able to move into two rooms at the
Tiverton House for the same price as the Ronald McDonald House,
where they were previously staying.
Though staying at the Ronald McDonald house was cheap ““
$15 a day ““ it was 20 miles away, and Nicole Draper said the
move made their day-to-day life much more convenient.
Nicole and Michael Draper called the recovery of their two sons
amazing, but they are still cautious about their condition.
“You hardly dare to hope,” Nicole Draper said,
because of the many ups and downs they have undergone.
In recent months, Nate’s condition has improved and he was
released from the hospital May 25 with his doctors announcing he
was no longer actively awaiting a heart transplant.
Alejos said that in 15 years of practice, neither he nor the
twins’ heart surgeon, Dr. Mark Plunkett, had seen such an
improvement.
Even with the twins at home, Alejos said he will still worry
about them and will follow their condition.
“I’m going to be a little bit on pins and
needles,” he said.
But Alejos said Nick and Nate’s conditions keep improving,
and he added that after a final checkup in two or three weeks they
could return to Phoenix.
“I think they’re stable enough to go home
now,” he said.