Three-month-old Sofia Raffaelli comes home for the first time after 94 days at Riley.
By Maureen Gilmer, IU Health senior journalist, mgilmer1@iuhealth.org
Sofia Ann Raffaelli is the best gift her parents could ask for this Christmas.
Sofia is 3 months old, but she went home for the first time Monday, following a 94-day stay at Riley Hospital for Children.
Dressed in her holiday finest, the 9-pound baby girl is the perfect package to put under the family Christmas tree. Not even Santa Claus could do better.
Kaitlin Moore and Dante Raffaelli have longed for this day ever since Sofia was born via emergency C-section in mid-September, six weeks before her due date.
Although, to be fair, Moore didn’t even know she had delivered a baby girl until three weeks after the birth. That’s because Moore had been hospitalized with a severe case of COVID-19.
She had been LifeLined from a Hancock County hospital to IU Health Methodist Hospital, where she had been unconscious since Sept. 17, the day she gave birth.
COVID CHANGED EVERYTHING
An emergency C-section was definitely not in her plans. But COVID changed everything for the unvaccinated mother of two older kids, ages 2 and 7.
“They told me I was going to have general anesthesia and took me immediately to the operating room,” Moore said. “I remember counting backward, and that was it, until 19 days later.”
Both of her lungs collapsed during surgery, she said. Raffaelli, who also had COVID, could not be with her during the birth and could not see their daughter until a week later.
When she was extubated, nurses asked her what month it was, and she replied September. Actually, it was well into October by then. Those days were lost. She remembers nothing from the time she was on a ventilator, other than some “weird dreams,” she said.
What she does remember is finding out from her mom that she had delivered a beautiful 4-pound girl 19 days earlier and the baby was in the NICU at Riley.
“At first, I didn’t even know if she was alive,” said Moore, who had been transferred from the labor and delivery unit at Methodist to the ICU, then the pulmonary floor. “I was looking around the room, and there was no baby.”
Moore’s mother was able to fill in the blanks, showing her a picture of her baby girl.
“I obsessed over her for six days and kept showing everyone who came in my room the pictures of her,” Moore said.
MOM MEETS DAUGHTER
On the 25th day, she was finally strong enough to be taken over to Riley, where she got to meet and hold Sofia Ann for the first time.
“She was so tiny, but I was so happy to see her. I don’t think there was a dry eye around me, including the nurses.”
The two hours she got to spend with her daughter went by in a flash, Moore said, but she would return again and again, first in a wheelchair, then a walker, then on her own two feet, until she could be with Sofia at Riley for the long haul.
Raffaelli had named their baby while Moore was on a ventilator. It was one of several names the couple had discussed, but he was nervous about how she would react.
To look at the family now, it’s clear he needn’t have worried. Sofia’s name fits her perfectly, Moore says as she snuggles with her daughter and watches her fiancé prepare Sofia’s feed.
“He did good,” she says about Raffaelli’s decision. “He and my mom took turns doing hospital rotations and watching our two boys. They are the rock stars of the story, really.”
She also gives a shout out to Dr. Anna Thomas, a neonatologist who was on hand for Sofia’s delivery at Methodist and cared for her in the NICU at Riley, where she spent 81 days before “graduating” to the pulmonary floor.
NURSES ARE CLOSE TO HER HEART
Moving out of the NICU was a positive step, but it was bittersweet for Moore, who had grown attached to the team who cared for her daughter daily.
“We have had the absolute best care for not only our child, but for ourselves as well,” she said in a Facebook post the day Sofia was moved out of the NICU. “We have had some of the most amazing nurses I’ve ever met in my life. They have truly become some of the closest people to my heart.”
Her love extends beyond the nurses, too.
“The NPs, doctors, speech therapists, respiratory therapists have all been so wonderful. The staff at the front desk, child life and NICU Nest are all amazing too. I am just completely humbled and grateful for all of the extra services they provide to parents in a time that is far from easy.”
During their two-week stay on 8 West, the couple tag-teamed their daughter’s care while they inched closer to discharge day. Each had participated in 24-hour care shifts, along with Moore’s mother, so they could feel confident taking care of Sofia at home.
There, she will receive supplemental nutrition via a central line and a feeding tube, but she won’t require extra oxygen. Sofia was diagnosed with cystic fibrosis after birth, so it’s important that she continues to gain a healthy amount of weight to improve her lung function down the road, Moore said.
Sofia will continue to be under the care of Riley pulmonologist Dr. Don Sanders.
SWEET AND SOCIAL
A few days before she was discharged, Sofia and her dad were bonding over a tiny bottle that he was coaxing her to drink. While she continues to take more nutrition by mouth, she rarely finishes a bottle, so she gets the rest of it through her feeding tube.
“She likes to eat for a minute, and then she gets tuckered out,” her dad said.
Moore describes her daughter as “a precious little thing, super sweet and social,” who likes nothing more than to sit in her infant seat and watch people walk by her room at Riley.
“She smiled at me today intentionally, and it melted my heart.”
Now that she’s home, she has two big brothers to keep an eye on. The older one dotes on her, while the 2-year-old is still getting used to the idea that he is no longer the baby of the house.
Christmas will be a joyful day for the young family, thanks to support from a host of people. There will be gifts under the tree, but the best present has already arrived, complete with a Christmas bow in her hair.
Photos submitted and by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org
