It’s been almost a year since Shawn Donovan decided to devote his life to caring for his infant daughter, Zariah, even when doctors told him the end was near and that there was nothing further they could do to save her after she was born at just 24 weeks.
Shawn put his job as a health club manager in South Jordan, Utah, on hold, packed a suitcase and made Salt Lake City’s Primary Children’s Hospital his second home, giving Zariah skin-to-skin contact for up to 15 hours a day to keep her calm so she wouldn’t fight the oxygen ventilator that was keeping her alive.
Now, with Zariah soon to celebrate her first birthday on Sept. 13, Shawn is still at it – this time at in Columbus, Ohio, where Zariah was transferred last month to receive specialized care for bronchopulmonary dysplasia, a chronic lung condition affecting premature babies with undeveloped lungs.
Because his wife, Vilayvone “V” Thipsouvan, a pharmacist, has a better health insurance plan than he does, Shawn took leave from work to focus on Zariah so that Vilayvone could continue working in Utah and care for the couple’s other daughter, Raven, 2, with help from his mother-in-law.
With Zariah probably a year away from her lungs developing enough that she can leave the hospital, “it’s hard to be so many miles apart,” Shawn, 32, tells PEOPLE, “but seeing how much Zariah has improved keeps me going. She’s fought every inch of the way and has completely changed the value of life for me. Waking up and breathing is something that we all take for granted. I can’t imagine not being by her side.”
Vilayvone was six months into her pregnancy with Zariah when she went into premature labor and was turned away by two hospitals because premature infants born at 24 weeks weren’t considered viable. Finally, she was life-flighted to Primary Children’s Hospital, where Zariah was delivered weighing only 1 pound, six ounces.
It took eight minutes for doctors to revive her and get her breathing, “and everybody told us that she wasn’t going to make it,” Vilayvone, 37, tells PEOPLE. “We were told that if she did live, she’d be blind, she’d have cerebral palsy, she’d be disabled. But we could see that her eyes were perfect – we could see that there was hope.”
For months, their tiny daughter fought to live as she recovered from open-heart surgery, three bouts of pneumonia and a partially-collapsed lung.
“We were told that she had a zero percent of survival,” says Shawn, “but that was a percentage I wasn’t willing to accept.”
Day 11: Zariah opened both eyes today for the 1st time earlier in the day. Today Doctors put in her PICC line. Everything is still going well.
To keep his daughter from fighting her ventilator, he began to sleep next to her incubator in the neonatal intensive care unit to calm her with gentle touches, reading and singing to her when she cried and struggled to breathe.
“I rubbed her head, held her hand and started doing some Reiku massage,” he tells PEOPLE, “and it seemed to help. So I kept it going, eight to 15 hours a day, sometimes.”
After another setback last month, though, when Zariah had to be medically paralyzed to allow her lungs to heal, doctors again told him and Vilayvone that there was little hope.
The couple, not yet married, decided they would like to have a wedding in Zariah’s room in the ICU on July 22, before they moved their daughter to Ohio for further treatment.
With family members – including their young daughter Raven – gathered around, they were married by a hospital chaplain, “thinking that if Zariah wasn’t going to make it, we all wanted to be together,” says Shawn. “There were such mixed emotions – happiness and love with the nightmare of not knowing whether Zariah would be alive the next morning.”
After she was transferred to Nationwide Children’s Hospital, though, Zariah’s survival odds went from zero to 96 percent in just a few weeks. Friends have set up a GoFundMe account to help with her uncovered medical expenses.
“She’s a miracle child,” says Vilayvone, who now sits down with Raven daily to Skype with Shawn, and plans to fly to Columbus next month to celebrate Zariah’s first birthday.
“We’ll have cake and balloons on her birthday, and happy tears that she is still with us,” she tells PEOPLE. “We are very, very thankful and have so much to celebrate.”
As for Shawn, he plans to stay by his daughter’s bedside for as long as it takes.
“She still tolerates my singing,” he says, “so I’ll probably sing her favorite song, ‘Twinkle, Twinkle Little Star,’ then I’ll fall asleep in the room with her. She weighs 20 pounds now, half of it in her cheeks. To see that little smile and know she’s going to make it – there’s just no better feeling.”