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Born a helpless 10-inch micro-preemie, Nola clung precariously to life — enduring medical episodes, week after week — while intubated in a neonatal intensive care unit in Orlando.
Six months later, Nola finally weighed as much as a typical newborn weighing 8 pounds, 6 ounces. She was still struggling with a chronic lung disease of prematurity. But thanks to daily exercises with her mother, she became good at grabbing toys.
Holding her little hands together.
And she reached for her little ear, often wearing a colorful bow on her head.
But Nola’s short trip ended on April 5. She died at AdventHealth for Children in Orlando — the only home she’s ever known — sparking messages of grief and sorrow from around the world by followers of the “Baby Nola’s NICU Journey” Facebook group.
“She just got tired. She used all the energy she could muster to breathe,” said her mother, Melbourne resident Cathy Soteropoulos.
“She was such a sweet girl. I think that’s why she impressed so many people. She was angelic. She was very, very sweet – and I wish people could see it for themselves, except through a screen,” Cathy said. as tears streamed down her cheeks.
“I’m in pain. I’m in a lot of pain. I don’t know who I am, or where to go. But I do know that somehow I will keep the memory of Nola alive. That’s what will help me get through this grieving process and turn it into something positive,” she said.
“It couldn’t have been in vain,” she said.
Born at 1 pound, 6 ounces
Nola was born on September 27 via emergency cesarean section after only 27 weeks in the womb. She weighed just under 1 pound, 6 ounces and was only 10 inches tall.
She made only two little whimpers before being intubated—and Cathy would never hear her daughter’s voice again. Nola remained intubated for the rest of her fleeting life.
Nola’s death came as a shock to many of the more than 11,800 members of Cathy’s private Facebook group. Cathy captured her baby’s short life—and her personal trials and heartbreaks—through detailed posts and lengthy, emotional first-person videos, prompting thousands of responses offering comfort and inspiration.
“That was my outlet. That got me through it,” Cathy said.
“When I was in the Ronald McDonald House or in the NICU, and I needed to talk to someone, it was as easy as going live. And having that support and being able to talk about my feelings and my thoughts,” she said.
“And in the meantime, I was able to educate people and show people what goes on behind the scenes,” she said.
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Celebration of life planned
Cathy said “Baby Nola’s NICU Journey” attracted followers from 100 countries, ranging from Nigeria and Slovenia to Sri Lanka and China. Some shared personal experiences of the loss of loved ones, or the strain of caring for newborns in the NICU.
There are plans for Nola’s celebration of life, which Cathy said will be a public event. Details are not forthcoming.
Nola was a micro-preemie, according to the Texas-based Cook Children’s Health Care System. That’s a baby born before the 26th week of pregnancy or weighing less than 1 pound, 12 ounces.
She suffered from bronchopulmonary dysplasia, or chronic lung disease from infancy. Since February, Cathy said she planned to transfer Nola from Orlando to a specialized NICU lung disease program at Children’s Hospital in Philadelphia. But Nola never got enough strength to make the journey.
Cathy spent six months and ten days almost every night in the NICU or the Ronald McDonald House on the AdventHealth for Children campus. She described her plight as “fight or flight mode” as her child slipped in and out of critical condition.
“I lived in that hospital. The same chair I held her in to say goodbye is the same chair I slept in for many nights,” Cathy recalled, crying.
Keeping Nola’s Mind Alive
Cathy said she is determined to keep Nola’s legacy alive. Among her ideas:
• Act as an advocate for mothers with babies in the NICU.
• Write a book: “Right now I have a notebook full of different ideas.”
• Tell others about preeclampsia, the high-risk pregnancy complication she had during Nola’s pregnancy.
Characterized by high blood pressure and possible kidney damage in mothers, preeclampsia can cause fetal growth restriction and preterm birth, the Mayo Clinic reports. Cathy was hospitalized for 18 days with severe preeclampsia before doctors removed Nola from her uterus via emergency surgery.
These goals could include launching a nonprofit foundation in Nola’s name, Cathy said.
“I’m grieving right now. But I feel so motivated and compelled to do something that I need to find out,” Cathy said.
“I’ve talked to the Ronald McDonald House company (officials) and I’m going to work with them. They want me to tell my story, and the different departments in Florida want to share it on social media,” she says. said.
Generosity of strangers
Cathy and her husband, Kevin, celebrated their first wedding anniversary in March. He works as an assistant kitchen manager at Squid Lips Overwater Grill near Cocoa Beach, and she remains on extended leave as a customer service representative at SeaDek Marine Products in Rockledge.
A GoFundMe campaign has raised just under $30,000 since September to help cover the couple’s expenses.
Members of the Facebook group Amber Oliveras-Adams and her husband, Sebastian, have Espresso Yourself Mobile Coffee in Melbourne. After Nola’s death, they surprised Cathy and Kevin with a laundry basket filled with donated household items — along with a check to cover their one-month rent.
“When Nola passed away, I felt moved to do something,” said Amber Oliveras-Adams.
“Towards the end, when she died, it was a little difficult – because I’m pregnant. Seeing a baby not make it made me a little worried, so sometimes I struggled to read the updates,” Oliveras -Adams said.
“I felt led to follow her story, and I’m a praying person. So I always pray for her family and for guidance and peace,” she said.
Preeclampsia Awareness
Amanda Petrosky, a Melbourne resident, battled preeclampsia during her 2014-15 pregnancy with her son Gabriel. She served as “mission mother” during the Space Coast Promise Walk for Preeclampsia on April 30 at Riverfront Park in Cocoa, and she publicly honored “Sweet Angel Nola.”
“Nola was born in early September after Cathy was diagnosed with preeclampsia. Nola was a fighter. She was strong and we will not forget her,” Petrosky told the crowd.
“Please join me in a moment of silence to honor Baby Nola and the other lives lost to preeclampsia and HELPP syndrome,” she said.
On Monday, Cathy said she had spoken with Eleni Tsigas, CEO of the Preeclampsia Foundation, about advocating for the nonprofit. Preeclampsia is responsible for up to 20% of the 13 million premature births worldwide each year, the foundation reports.
“Even with grief, you know, how do you pick up the pieces? I’m not quite sure what I’m going to do just yet, but I’m determined to carry on — because this couldn’t have been in vain,” Cathy said.
“And I’m sure Nola’s journey doesn’t end here. That is not possible.’
Expressing grief through social media
On April 26, Cathy Soteropoulos wrote a post in her Facebook group “Baby Nola’s NICU Journey” describing life after the loss:
“I fought so hard for Baby Nola. I really did. I was with her every day. I advocated for her every day. Life in the NICU became my life. The NICU became my home. The Ronald McDonald House became my home Their staff and the nurses in the NICU became my family It was my life for 6 months and 10 days I was used to being separated from my husband I was used to waking up and there for my baby Spend time with her Take care of her I love her Play with her Sing to her Read to her She fought so hard she really did And I feel like I fought too I was ready to do whatever I had to do to be around her mama and give her the best life I was ready Her father was ready It was our life as we knew it she wrote.
“But now it’s over. It’s all over.’
Rick Neale is the South Brevard Watchdog Reporter at FLORIDA TODAY (Click here for more of his stories.) Contact Neale at 321-242-3638 or [email protected]† Twitter: @RickNeale1
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This article originally appeared on Florida Today: Baby Nola the Micro-Preemie Dies at AdventHealth for Children Orlando
