When Clara Murphy was born nearly 100 days prematurely in the Newborn Critical Care Center at UNC Children’s, her parents, Courtney and Jason, quickly learned that their journey as a family would be filled with highs and lows. Today, they’re a happy family of four, and not only have they gained Clara, they’ve also developed greater appreciation for what they have.
Two years ago, Courtney Murphy, an elementary school art teacher in Johnston County, and her husband, Jason, a Raleigh firefighter, took their daughter Madeline to her first day of kindergarten, at the school where Courtney teaches. Courtney was 25 weeks pregnant at the time. She hadn’t been feeling well the previous few days and noticed that the baby wasn’t moving as much. The Murphys walked Madeline to her class, then Courtney went to her own classroom, where she called her OBGYN.
“They told me I needed to come in to be seen right away,” Courtney says. “I did, and then they sent me to Chapel Hill.”
Courtney describes the next several hours and days as surreal. Initially, she told her doctors in Raleigh and Chapel Hill that she had to go home—that Madeline didn’t know her mom wouldn’t be there to pick her up from school. Two days later, on September 8, Clara, the Murphy’s second daughter, was born, ahead of her due date by 99 days.
“It changed our life,” says Courtney, who spent a week in the North Carolina Women’s Hospital after labor and surgery. “We went from expecting a normal pregnancy and becoming a healthy family of four to living in the hospital and worrying every day that Clara wouldn’t make it.”
Clara spent five months in the Newborn Critical Care Center (NCCC) at UNC Children’s. She was there so long that she earned the nickname “Grandma,” which still makes Courtney laugh. By the time Clara left, she’d been in the NCCC longer than any other baby who was there with her.
Today, Clara is nineteen months old, and although she brings every bit as much joy to the Murphys as a full-term, healthy baby would have, she’s had serious challenges. Like many babies born so prematurely, Clara has special needs—cerebral palsy, specifically. And her journey, and the journey of the entire Murphy family, has been full of ups and downs. Before receiving her tracheostomy around the time of her original due date, three months into her stay in the NCCC, it was uncertain whether Clara would ever make it out of the hospital.
“Most of her days were hard before the tracheostomy,” says Courtney. “Clara was probably one of the sickest babies in the unit. But all the babies there are like little warriors. They have to go through so much to make it out.”
Courtney calls the hospital stay the first phase of their journey with Clara, with the focus to get home. But what many don’t realize is that while parents of preemies concentrate primarily on the health of their babies, other problems can weigh on them, making their worries even greater. For five months, every single day, the Murphys traveled back and forth between their home in Johnston County and the NCCC at UNC Children’s. They wouldn’t have made it through, Courtney says, without the support of family, friends, church, and work, all of whom helped the family with travel expenses.
“We felt so lucky to have people in our lives who were willing to help us,” Courtney says. “When I wondered whether our situation could be any more difficult, I always reminded myself that there are people in the NCCC who have to move to Chapel Hill while their baby receives care. We were fortunate to be close enough to drive.”
The Murphys also needed a hand with Madeline, who was experiencing kindergarten while trying to comprehend her parents’ daily travels to Chapel Hill and the health struggles of her new baby sister. Every day Courtney would drop Madeline off at school in the morning before making the hour drive to the hospital, spending the day with Clara, and returning to Garner to pick Madeline up from school. Eventually, Clara’s needs became greater, and Courtney and Jason were home less often. They had to rely on their support base for help with Madeline during that time.
“That was hard for me because I’d never done that before—I’d always been there and done everything for Madeline,” Courtney says. “Over time we figured it out so that one of us would always be with Clara and one with Madeline.”
Courtney leaned on another family in the NCCC whose child was facing as tough a fight as Clara, and she and the other mom were able talk to each other during the long days and the emotional roller coasters of their children’s health struggles.
Among the biggest challenges for Courtney was making sense of her role as mom in the early days of Clara’s journey.
“The toughest thing for me, as a mom, was not knowing what I should do.”
“The toughest thing for me, as a mom, was not knowing what I should do,” she says. “When we left the hospital and Clara for the first time, I remember telling Jason, ‘I don’t know what I’m supposed to do.’ He told me, ‘We go and we sit, and when we can do things for her, we’ll do them.’”
Clara was simply too sick for them to be able to help. At times, Courtney says, they just sat, watched, and listened to the doctors. As Clara got a little older, Courtney and Jason were able to do more for her. Courtney credits Clara’s nurses and physicians for providing her with information and helping her understand the difficult path ahead.
“Everyone at the Children’s Hospital was wonderful, but I cannot say enough about the people who work in the NCCC,” she says. “They are so supportive and encouraging.”
Despite all that she experienced, Courtney knew that her family was fortunate in important ways.
“When I saw the challenges that others in the NCCC were going through, I remember thinking how blessed I was to have had Madeline and to have known what it was like to be a mom,” she says. “Other families haven’t been as lucky to have a healthy child before going through the experience of a second child born prematurely and with special needs. But at the same time, as lucky as I felt, it was also incredibly painful because I knew what I was missing out on with Clara and I understood what a different experience it was.”
These days, the Murphys are in phase two of Clara’s journey: having her home. They have assistance from in-home nurses and emphasize all the joy Clara has brought them. Their faith guides them through. Madeline, meanwhile, adores her sister, which brings happiness to Courtney and Jason. As challenging as their journey has been, Courtney believes it has changed her and her family for the better. She has learned never to get too far ahead of herself and instead to experience the present, and enjoy it.
“I was the exact opposite before Clara,” she says. “I worried about everything in the future and didn’t live in the moment. But while you’re in the hospital, as we were, and caring for a special needs child today, you realize that there are things you have no control over. If you look into the future and have expectations based on how you want things to be, then you’ll be overwhelmed. I don’t want to have any regrets with Clara—I want to be present with her as much as I can.”
Courtney remains grateful for the care she received from physicians and nurses in the NCCC and for their role in getting Clara home. When Clara, the patient who had been on the unit the longest, was being prepared to leave the hospital in February 2014, one of the nurse practitioners told Courtney something that sticks with her to this day.
“She came to say goodbye to us and said, ‘The one thing I’ll always remember about Clara is how determined she was here—like she couldn’t wait to do something—and I can’t wait to see what that is,’” Courtney says. “That has really helped me through this.”
If you would like to read more about the Murphys and their experiences, view Courtney’s blog: http://cmjmurphy.blogspot.com.