Jacqueline “Jacky” and Jordan Bender were furniture shopping for their new home in Ahwatukee when their typically happy 3-month-old daughter started vomiting, followed by seizures.
It was July 11, the day after the young family had moved to Ahwatukee from Chandler with their children, Juliet, 21 months, and baby Catalina, born April 19.
Since that fateful Saturday, life has been a maelstrom of medical tests and treatments, diagnoses and misses for the infant, who spent days in the Pediatric Intensive Care Unit at Cardon Children’s Medical Center before being transferred Friday to Phoenix Children’s Hospital in hopes answers can be found for her seizures, despite medications.
Her parents, married less than three years ago, shuffle shifts of 12 and even 24 hours at the bedside of their previously smiling and contented infant daughter, who now lies with a bandaged-swaddled head and tubes twined across her tiny body, a small pink teddy bear resting beside her.
“Before Catalina got sick, she was such a happy baby. She’d just started cooing and smiling a little bit ago. She would wake up with the biggest smile that would brighten anyone’s day,” Jacky explained. “She has the biggest eyes. They’d get all wide when she gets excited. She loved being hugged and cuddled, and she isn’t a fussy baby or much of a crier.”
While at Cardon’s and now at Phoenix Children’s, baby Catalina has continued to have seizures as doctors race to determine the cause.
“We did an EEG (electroencephalogram) to look at her brain activity and she’s having subclinical seizures – meaning she is seizing even when she’s not showing it physically,” her mother wrote in an online post. “We still don’t have answers to why this is happening.”
And not knowing is the hardest thing to handle, said Jacky, 26, a stay-at-home mother who grew up in Chandler and graduated from Hamilton High School in 2012. Her parents, Gerry and Patty Torres, still live there.
The baby’s illness is the most serious of innumerable hardships that have beset her and Jordan, 28, who has a new business, Benten Construction, that launched last August with partner Brandon Edmisten of Mesa.
One concern is the mountain of costs that accrue daily. They are without health insurance.
“Each night we spend here costs roughly $20,000, without insurance,” said Jacky. “I’m a proud person, and so is my husband, and I don’t want to ask for help but I don’t know what else to do since we don’t have insurance and this hospital stay is going to be horrible.”
A tax-deductible donation account has been set up by Ahwatukee-based Armer Foundation for Kids to help defray some of the enormous costs of Catalina’s care.
Jacky said not knowing the root cause of the on-and-off seizures continues to escalate her anxiety.
“Honestly, I don’t really care about the donations, though I thank everyone for their help and overwhelming support throughout this ordeal,” she said. “I just want an answer.”
The stress has already taken its toll on the young mother. In the days following Catalina’s hospital admission, she found herself sick and thus unable to visit her daughter.
Her husband turned over his restoration/remodeling business operations to his partner so he could fully focus on his daughter. His mother, Jessica Bender, arrived from Ventura, California, to help care for their toddler.
“The first few days were super tough. I was crying pretty much for the first day, and then I got sick and couldn’t go see her. I’m eating better now, and I want to be healthy for her,” she said. “It’s all very overwhelming.”
It has become a day-by-day waiting game for the Bender family.
On July 14, Jacky reported on what was happening as the fourth day brought no answers.
“No seizures since 10:30 last night. Fever sometimes, temperature drops. Still all tests coming back as negative, meaning we have no clue what’s causing them,” she wrote in a post. “More tests for rare infections are being done.
“Emotions are high, but things seem to be looking up. The next steps are to slowly start lowering the sedatives and seizure suppressing medications. EEG is still running. If they are able to get her off those meds without having any more seizures, we will be able to take out the breathing tube again.”
In the days following, the infant’s seizures continued.
“Catalina was still having seizures multiple times a day after being in the PICU for a week,” reported her mother Saturday. “Phoenix Children’s is the best in neurology and has a level 4 center in epilepsy. We were told an extreme case like ours would have usually been sent to their experts after a day.
“We still don’t have a diagnosis. Her seizures can be the result of various conditions but we are hopeful we can get closer to getting an answer with these experts.”
They learned earlier last week that results from the genetic epilepsy test could take as long as eight weeks.
She acknowledged her older brother had a “one-time” issue with a seizure as an infant, but “it didn’t progress.”
Life before July 11 was going well. They had found their new home; their daughters were the lights of their days.
A photograph taken the day they moved into their new apartment shows Catalina as a happy, smiling infant.
And now, even sister Juliet is feeling the pain.
“They’re only 18 months apart. When I was pregnant, I would point to my belly and say ‘baby.’ ‘Baby’ ended up being Juliet’s first word,” smiled her mother.
“After Catalina was born, they became the best of friends. As soon as Juliet would wake up in the morning she’d run straight to the crib and say ‘hola, baby.’ When Catalina would cry, Juliet would kiss her on the head and say ‘shh, shh, baby’. She was always trying to kiss and hold her.”
“I know Juliet is still too young to understand what is going on with her sister but I can tell that she misses her. I’ve noticed she’s been very possessive of the baby’s things lately and always trying to get into her room,” she said. “We all miss her and seeing that room without her is heartbreaking.
And so the seizure medications, ventilators, medicines to bring down recurring fevers all continue day-by-day in a seemingly endless loop.
Through it all, she said she and her husband are grateful to a caring community who have helped them financially and emotionally as they pass through paths that they’d never imagined confronting.
“I want to thank everyone for their help and overwhelming support throughout this ordeal. Thank you all for the prayers, messages, and positive thoughts sent our way! I can’t respond to everything right now, but know that we really appreciate it,” she said. “We’re very overwhelmed by the love everyone has shown us in these hard times.”
To make a tax-deductible donation to help the family, visit ArmerFoundation.org.