When Johanna Morton watched her 5-month-old baby girl see snow for the first time, “it was like time stood still,” she tells PEOPLE.
“For that moment, she wasn’t sick, she was just thrilled. My husband and I looked at each other and knew that whatever comes next, we’ll have this memory,” Johanna says.
For Johanna, 22, and her husband Craig Morton, 25, every first they’re able to share with their daughter Clara Ray feels like a miracle. That’s because 12 weeks into the couple’s pregnancy, doctors discovered a problem with Clara Ray’s heart.
“They told me I was going to go home and miscarry,” the Cornwallville, New York, mom says. “They said our baby wasn’t going to live.”
Clara Ray was a fighter from the beginning, but the couple returned to the doctor to receive a new crushing diagnosis.
“Next we were told she was going to be stillborn,” Morton says. It was a prognosis she and her husband simply couldn’t accept.
“From the beginning, I said we were going to see this thing through and we continued to celebrate her,” she continues. “We had a reveal party and a baby shower and we set up her nursery even though we didn’t know if she’d be coming home or not.”
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Clara Ray was delivered via C-section on June 14 – her heart was too weak to handle a natural birth.
“I asked the doctors if my baby was going to be born alive and they couldn’t tell me,” Morton recalls. “The room got really silent when she was born and then she let out this amazing cry.”
“I looked at my husband and he looked at me and we started crying, it was the most amazing moment ever,” she continues. “Then fear struck.”
Clara Ray was rushed to Boston Children’s Hospital where she underwent open-heart surgery to treat her multiple congenital heart defects, heart block and Heterotaxy syndrome. Then, on July 21, the newborn was finally cleared to come home.
“We walked into the nursery with her on that first day home and we were in awe,” says Morton. “We’re still in awe that she’s here today. Every single day that she’s here is a miracle.”
Doctors have informed the couple that Clara Ray’s heart may not keep up with the pace of her growth.
“We just take it minute by minute because anything with her can change,” Morton says.
Clara Ray has already been hospitalized five times in her five months of life – she was undergoing surgery in Boston when it first snowed at her New York home. So, when Morton woke up on November 20 to a fresh blanket of snow outside her window, she couldn’t wait to show Clara Ray.
“She was mesmerized,” Morton, who shared a photo of the special moment on the Love What Matters Facebook page, says.
“It’s amazing that we’re able to spread CHD awareness through her story because there is no cure,” Morton says.
Despite this fact, the Mortons are holding onto hope that they’ll get to share more firsts with their little girl.
“She’s an energetic smiley little thing who just lights up a room,” Morton says. “No matter what negative things we’re told we still believe we’ll see her first birthday.”