Las Vegas’ baby Ellie gets new heart

Harney Middle School teacher Melissa Lim and her husband spent Thanksgiving the same way they've spent nearly all of their time off: stationed at the bedside of their 8-month-old baby girl at Mattel Children's Hospital UCLA.

The family received word the following day that it was going to happen over the weekend — after months of waiting, little Eliot Lim would be getting a heart transplant.

"We had just completed an interview with a local news channel on the awareness of organ donation and were talking to each other in the back of her room and her cardiology doctor came to the door," Lim told the Review-Journal. "We spoke to her in the hallway and she let us know there was an offer and that the surgery would occur the next day in the afternoon.

"After that both of us weren't really paying attention. We were so overjoyed and a bit torn — we know that a child received their wings to help our little girl."

Ellie was diagnosed with dilated cardiomyopathy of the left ventricle during a routine checkup on Aug. 6. The disease affected the way her heart pumped blood and is life-threatening. She was hospitalized right away and transferred to UCLA, where she was 36th in line for a new heart in September.

Her parents have been staggering their time off work, and traveling back and forth to Los Angeles to be with Ellie. The previous three months have been stressful, Lim said, and receiving a heart transplant doesn't mean Ellie's out of the woods yet.

"She has a pretty long journey to go, although she is making leaps and bounds."

Ellie is currently undergoing "sprint trials," which entail gradually taking her off a ventilator for brief periods of time to see how well she breathes on her own. They are also weaning Ellie off of the sedatives she has been on for months.

"She's been on the meds for over four months, so it will take a long time to wean — weeks," Lim said.

After that Ellie will be moved out of the pediatric intensive care unit and the hospital will order a biopsy to check her new heart isn't being rejected. Then she will have to get weekly checkups for months.

"She is recovering. She has the strongest grip again," Lim said. "I can actually touch her without sending my daughter into tachycardia (an abnormally rapid heart rate). We aren't clustering times to touch her. We can hold her hand and stroke her head.

"Now we get to enjoy being parents again."

And the Lims are very grateful parents. Ellie's story has touched people, and multiple communities have rallied behind the family.

Since September, an OfficerDown.US crowdfunding campaign raised $48,051 with the help of Lim's colleagues and students. Coworkers of Ellie's father, Las Vegas police officer Lee Lim, helped renovate the family's home to accommodate the baby's post-transplant needs. The family received further financial help from TV star and comedian Brad Garrett, whose foundation paid the Lims' mortgage multiple times, and the Yellow Checker Star taxi company in Las Vegas. Costs associated with the transplant are estimated at more than $250,000.

The family created a Facebook group to chronicle Ellie's journey, described by Melissa Lim as a mix of hope, fear, sadness and happiness. The brief periods where Ellie was not on paralytics, when there were finger squeezes and poopie diapers, became causes for celebration. "Big Heart Ellie" has more than 200 followers, including the families of other patients at the childrens' hospital and other people waiting for life-saving transplants.

"Your community becomes the eclectic assortment of people who are coming for one cause, your child," Melissa Lim said. "That's a huge responsibility.

"The UCLA campus really rallied around her, and with a little help from Instagram ... we brought some local attention to what UCLA students were doing for her. Things come around full circle and my little girl helped spark that."

The Lims know very little about the donor because of federal medical privacy laws, but they heard the family donated multiple organs and that it was a relatively short amount of travel time from donor to recipient.

"This little person is our hero," Melissa Lim said. "We are writing a letter to the family now. But it will be up to them if they want to communicate back. This all goes through the transplant coordinators with no names, no locations.

"Some recipients never get a response, and that's OK. We will always be thinking of them."

Lim said it's entirely up to Ellie when the family comes home, and that's OK, too.

"I think if you ask any parent in our position, waiting for a donor, they will agree it can't happen fast enough," she said. "In Ellie's case she was in desperate need of it. The surgeon told us it's really a miracle that she was alive after seeing her heart.

"We looked at each other and shed a few tears. And then we prayed, for this blessing and also that the family of the donor find peace in knowing that their child will live on."

Contact Wesley Juhl at wjuhl@reviewjournal.com and 702-383-0391. Find him on Twitter: @WesJuhl