By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org
“All our girl knew was love.”
For one Indianapolis couple, that simple statement says so much – about a baby’s grieving yet grateful parents, about her extended family, and about the team who walked with them through every joyous day and every fearful night during her time in the NICU at Riley Hospital for Children.
When Matthew and Stephanie Deinlein, schoolteachers in Lawrence Township, walked into a conference room at Riley last week, they were greeted with hugs from some of those team members – nurses who grew close to the family as they cared for preemie Anastasia Rose Deinlein before she passed away due to a rare seizure disorder.
Kacey Mejias-Thompson, Clara Schulz, Crystal Cave and Jordan Schaler, all registered nurses in the neonatal intensive care unit in Riley’s Simon Family Tower, rearranged their schedules to meet with the Deinleins and talk about the tiny girl who stole their heart.
Despite the tears that flowed freely during a lengthy interview, this story is not meant to be sad. It’s a story about loss, yes. But more than that, it’s a story about love. And joy.
That joy radiates from Anastasia’s parents, who are grateful for the love they and their daughter felt during her short time on this Earth. For the doctors who worked tirelessly to save her. And for the nurses who showed the young couple how to care for her every day.
Especially on her last day – a day when Anastasia took her last breath outside the walls of Riley in a quiet, secluded courtyard, feeling a gentle breeze and a snippet of sunlight for the first time while all the people who loved her shared in the moment.
“Being able to take her outside meant all of our siblings and our parents got to be present,” Stephanie said. “She got the sunshine, she got the breeze, she got to have all of the people who mattered most.”
It was, Stephanie and Matthew said, “the perfect day.”
That day came after 20-plus days of testing and treatment and trying to figure out what was causing Anastasia’s severe seizures. But in the end, doctors told the couple that their little girl – born nine weeks early and transferred to Riley shortly after birth – would not recover.
It was devastating for the young parents, who struggled with infertility for six years before having their older daughter Aurora, 19 months. Yet they said they felt the love.
“This team has a culture of excellence and a culture of love and compassion,” Stephanie said. “We’re so thankful for everyone.”
And when they were asked what was most important to them in Anastasia’s final hours, they said they wanted to be able to take her outside in the fresh air surrounded by her family.
Because of the coordination and flexibility of many people, including Riley’s palliative care team, the couple, their family and those closest to them at Riley were able to celebrate Anastasia’s final moments of life outdoors after taking her off life support.
“We were able to have our families present to pray over our daughter as she made her way to heaven,” Stephanie said. “These beautiful moments helped my husband and I to have complete and utter peace.”
Jordan Schaler, who took photos in the courtyard that day for the family, said it meant the world to her to be part of those final moments after caring for Anastasia in the NICU.
“I got to make time stand still for them, to be in the moment with their baby. And when they called time of death, I’ll never forget how the clouds opened up and a ray of sunshine hit right on Anastasia. It took my breath away.”
It was the nurses, the couple said, who were their biggest advocates from the day Anastasia arrived at Riley, the same day Kacey Mejias-Thompson stepped in to become one of her primary nurses.
“Our doctor team was amazing, but it was our NICU nurses that made us feel like part of the Riley family,” Stephanie said, sharing how Mejias-Thompson taught her how to care for Anastasia through the small holes of her isolette, how to help give her a bath and how to ask hard questions. “She taught us how to be a parent in the NICU, and she loved us the whole time.”
“The parents and I hit it off right away,” Mejias-Thompson said, recalling how each handled the stress of being in a new environment in different ways, but “both were so sweet and kind and thankful.”
“If it was a Kacey day, it was a good day,” Stephanie said. “She celebrated with us and helped us walk through the hard days.”
On many nights, NICU nurse Emily Linder took over.
“Every parent can tell you the magic that happens the first time you hold your child. For us, that didn’t happen for the first couple weeks of her life and even then, it was only due to Emily encouraging us that Anastasia was stable enough to hold even on the jet ventilator,” Stephanie said.
“She calmed our uneasy hearts and made such a crazy time feel more normal, easing our fears and helping us love on our daughter better than we ever thought possible.”
They share equal words of praise for the rest of the team. Crystal Cave, a former NICU mom herself who lost her son over two decades ago, was especially attuned to what the couple was going through.
“Matthew and I firmly believe that God places people in your life at the right time. Crystal is one of those people,” Stephanie said.
Although she is a new nurse and was shadowing Schaler at the time, Cave helped the family in other ways, encouraging them to eat, listening to their fears and offering needed hugs.
“We can tell you we will never know why we were chosen to walk this path but that we pray to walk it with as much grace and strength as Crystal, turning what is unimaginable in the worst of ways to an indescribable blessing to others,” Stephanie said.
It was an experience that meant a great deal to Cave, who went back to school to become an RN later in life.
“I never thought I’d be strong enough to do this job, but the minute I met these people, I knew I was in the right spot,” Cave said.
“I can’t say enough wonderful things about the team around me that day,” she added. “Jordan was the best person I could have learned from – calm, cool and collected. Kacey as well. I don’t know how they do it, but I’m happy to learn from these ladies. It means everything to me to be part of that team.”
Also doing her best for the family was Clara Schulz, who helped not only care for Anastasia around the time her severe seizures started, but also cared for the family by creating crafts for both Anastasia and Aurora, memories that decorate the family’s home today.
“This family, even in their hardest days, you were always so positive, so strong,” Schulz told the couple sitting across the table from her. “I know somehow, I’m making a difference on those hard days. That’s why I come to work every day.”
Seeing Anastasia’s nurses again “felt like a family reunion,” Matthew said after the room emptied out on a Monday evening. “We were here for a month, but that month felt like we’ve been here for the 100 years of Riley. (The staff) becomes your family, and you’re talking to them about the hardest experience in your life. It’s so good to just see them and get those hugs,” he said.
“We so desperately wanted Anastasia’s story to end differently, but once we knew it wasn’t going to, we learned to celebrate,” Stephanie said. “We got 28 days to love her while she received the best care possible. When we left after saying goodbye to her, we had peace. We knew they had done everything for our little girl, and they did everything for us, too.
“We will forever be grateful for the incredible team at Riley,” she added. “All our girl knew was love. The team loved us and her through the hardest season of our lives.”
Photos submitted and by Jordan Schaler and Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org