Monday, February 13th 2023, 10:33 pm
A little girl who weighed less than two pounds when she was born, is now getting ready to celebrate her 7th birthday.
Every year, the Children's Hospital at Saint Francis chooses a Children's Miracle Network Hospitals Champion and Ella was chosen this year.
Every part of Ella's story involves a mini miracle and her mom said that's exactly what she is; a miracle.
"We think you have Help Syndrome. We found protein in your urine. My husband was on his way to come pick me up and they were admitting me at the same time," said Amanda Gruenberg, Ella's Mom. "With Hellp Syndrome your body is at risk of stroking out. Your organs are starting to shut down."
Ella was born at just 24 weeks, she was 470 grams at birth, and her birth weight was 1 pound, .6 ounces.
"That was really like scary for mommy and scary for daddy," said Ella.
She was smaller than a ruler.
"She is very feisty. She came out crying and kicking and she weighed only 400 grams when she was born. Despite being active and vigorous at birth, every part of her was immature. Every organ system needed our support," said Dr. Margaret Donahue, Saint Francis Neonatologist.
Her lungs were like chicken wire with tissue paper, thin and fragile. Her ribs were like toothpicks.
"Basically, her lungs were just stuck together. She also had a hole in her heart that was just pouring blood, so lungs are already collapsed, blood is pouring into her chest cavity. She was in need of transfusions. She required a high frequency jet ventilator that gave her 300 breaths every minute. That's not something every NICU across the country has," said Amanda.
Ella was discharged after 98 days.
"We go to carry her in, and we go walk through our garage door and her alarms all start going off... You're connected to an oxygen tank, so we had her in a bassinet to roll her around the house," said Amanda. "There is no developmental chart that matches where she's at. There's just not enough information even now with how long micro preemies have been able to be saved."
On her first birthday, to give back, Ella's parents collected and donated books to the NICU, and a year later the NICU Preemie Pajama Project was born.
"Every year we've been getting babies pajamas and books," said Ella.
She'll be seven on March 25, 2023.
"When I started as a Neonatologist 30 years ago, a baby like this would've been held by her mother and we wouldn't even have tried to resuscitate this child. Only in the last 7 years would we even try to save a baby as tiny as Ella was," said Dr. Donahue. "Can't stress enough to moms out there that are expecting to get prenatal care. Because if Ella's Mom hadn't gotten good prenatal care and if Ella had not been delivered when she was, with the complications mom was having, and had not delivered here at this hospital with the resources we had, Ella wouldn't be alive today."
"The things that she's been through, the amount of blood draws and pokes and sticks and surgeries that she has had even before us leaving the NICU, you know, she has more doctors' appointments than most kids her age that she doesn't always understand why. The therapies. Just not always being able to live life like her friends do, that part is hard, but she's amazing. She brings joy into every room she enters, her smile, she just has that magnetic personality," said Amanda.
Ella's mom said Ella is extremely empathetic.
"Babies are tiny and you want to care for them," said Ella.
"She just has that caregivers spirit," said Amanda.
Which will come in handy one day, when Ella becomes a vet. "It's okay, I know it hurts," Ella said to her stuffed animal.
Ella is collecting preemie and newborn pajamas again this year for her birthday.
She helps shop, fold clothes, keeps count, and writes thank you letters, as well as sends thank you videos.
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