Headed Home at Last: After Heart Transplant, Infant Daughter of Dallas ISD Trustee Leaves Hospital for First Time
June 20, 2018 - Dallas Morning News
Jacqueline Nortman scrunches down in the cozy swivel rocker in daughter Olivia’s bedroom and takes a deep, soothing breath, her baby cradled in her arms.
“It’s just so sweet to see her smile, when she’s snuggled up next to you, that’s how it should be,” Nortman says.
Born with a critical congenital heart defect, 4-month-old Olivia has been in peril pretty much since birth. But four weeks ago, a donor heart — Olivia’s last hope — became available. The heart transplant, performed at Children’s Medical Center Dallas, was successful.
And now, Olivia is here, swaying in the same chair she was rocked in while still in the womb.
Here, in the freshly painted room that was supposed to be gray but turned out lilac, where her father — Miguel Solis, Dallas ISD trustee and president of the Latino Center for Leadership Development — hung a golden crown over her crib and four cloud-shaped shelves on the wall.
Here, with her mom and dad and grandmothers Lolly and Lita.
On Tuesday, Olivia went home.
"I honestly didn't know if we'd ever get here," Nortman said.
Learning the routine
For first-time parents, bringing a baby home is stressful.
But for Solis and Nortman, it’s even more so.
Leaving the safety net of Children’s with a medically fragile child is tough.
Solis flipped through a three-page document showing all of Olivia’s medicines, which need to be given, on schedule, six times throughout the day. The biggest risk for Olivia moving forward is the chance that her body rejects her new heart. A steady stream of immunosuppressants is vital.
Olivia isn’t eating by mouth yet, so her food and medicine are delivered via a long, narrow NG tube that goes through her nose and down into her stomach.
Nortman had to deliver Olivia's first doses of medicine in the ride home from the hospital.
"This has been our home for four months, and we've had constant support from all the nurses, the doctors and the staff," Nortman said before leaving the hospital. "You sort of get used to that. The thought of going home, and doing it all ourselves, it's just a lot."
To help out, Solis’ mother, Sherrlyn, will spend the next year living with the young family. Nortman’s mom, Aurora, will continue to make the five-hour trips from Beaumont on a regular basis, too.
The only option
There was a point in Olivia’s journey when it looked like the infant might be able to head home without a new heart.
Almost a month after doctors performed a high-risk valve replacement surgery in March, Olivia was a day away from leaving the cardiac ICU and starting a monthlong transition to home when disaster happened.
Solis was holding his daughter when she suddenly burst into tears.
Despite everyone’s best efforts to calm her, Olivia was unconsolable.
Then, Nortman and Solis noticed their daughter was starting to turn blue.
Olivia had gone into a systemic vascular resistance crisis, where her heart couldn’t pump against the clamping down of her blood vessels, perhaps constricted as she tried to make a bowel movement.
“We knew that if she couldn’t do something as simple as have a bowel movement with that heart, there’s no way she was going to be able to live on that heart,” Solis said. “And that’s when the doctors came in, and they were very, very straightforward: Her only chance at life was a heart transplant.”
Full of gratitude
Even though Olivia’s recovery has been steady since the transplant, the crisis still unnerves Nortman, a pediatrician.
When her daughter cries, Nortman starts calculating whether it's normal, for something as simple as a wet diaper, or something else.
Both Solis and Nortman pointed to all the support they’ve received — from the medical providers to family, friends to well-wishers — that helped Olivia pull through.
Solis said that when his "tank is empty," he thinks about Olivia's donor and the gift given to his family.
“When I’m like: ‘I don’t want to get up. Uh, what’s going on?’ I get to get up and and change a diaper," he said. "I get to get up and start her feeds. I get to get up and give her medicine. And then there’s a family out there that doesn’t get to do that, and gave us the gift to be able to do it.”
In an effort to give back, the couple, with the help of graphic designer Skyler Thiot, has written a children’s book telling their story. All the proceeds from Olivia's New Heart — which can be pre-ordered at oliviasbook.com and is expected to be shipped in July — will be donated to the Heart Center at Children’s Medical Center Dallas.
Before she left the hospital Tuesday, Nortman went by the cardiac ICU to deliver red balloons with their family’s phrase — #LivStrong — written on them.
“Our journey has been really rough, and every other room is filled with a family that’s going through ... something similarly hard,” Nortman said. “There are days when it’s hard to even get up and brush your teeth and change your clothes for the day. So, if we can give people a smile, with a little gift or surprise, words of encouragement or just some sign that you’re not alone in this ... it’s worth it.”
Did you enjoy this story?
If you would like to receive an email when new stories like this one are posted to our website, please complete the form below.
We won't share your information, and you can unsubscribe any time.
Other Recommended Stories
Nancy Belt, LCSW, has known she wanted to be a hospital social worker since she was in high school. “My mother is a nurse, and one of her close friends was a social worker at the nearby hospital,” she said. “After hearing about her work, I knew that’s what I wanted to do too, and from then on, that was my goal.” ...
A significant access point for Children’s Health’s CHIP and Medicaid patient population is an emergency room visit, and often for low acuity visits. A low acuity visit is defined as a 3, 4, or 5; common low acuity visits are illness connected to ears, nose, throat, tummy aches, and fevers. High acuity visits are 1 and ...
Children’s HealthSM, the eighth-largest pediatric health care provider in the nation and leading pediatric health care system in North Texas, has begun construction on a $56 million, multi-year renovation to its emergency room at Children’s Medical Center Dallas, its flagship hospital. The renovation will take place in ...