Lori Istok, a Cranston resident and owner of Lori’s Music Together, knows that “miracles do happen” – and she wants other families going through trying times to know it, too.
Fifteen years ago, her son, William, was born prematurely. He arrived at 23½ weeks, weighing just 1 pound, 7 ounces.
Lori had been admitted to Women & Infants Hospital with contractions two days prior to the birth, and the prognosis was initially ominous. Doctors told her and her husband, KJ, that 24 weeks is considered the typical point of viability – and that in cases where babies are born before that mark is reached, “the outcome is not likely to be good.”
“We were fully prepared that he wouldn’t even survive the delivery,” she said.
But William, in Lori’s words, “proved to be a fighter and a little miracle.”
In the hospital’s NICU, or neonatal intensive care unit, he was able to breathe on his own for 24 hours thanks to steroids that helped strengthen his lungs, although he did later require a breathing tube at later points.
The family avoided many of the complications that typically accompany a premature birth. William did not require any surgeries and he experienced no brain bleeding, vision loss or hearing issues. Learning to breathe, and putting on weight, became the most serious challenges.
After four months in the hospital, William was able to come home. Today, he is a healthy – a “wonderful teenager,” Lori says, “who loves music, especially drumming, runs cross country and track and field and swims, and is now taller than his older sister, his father, and me.”
Since William’s experience, Lori and her family have found ways to give back. For the past 15 years, they have taken part in the March of Dimes’ March for Babies, raising tens of thousands of dollars to help fund support programs and research related to premature birth, birth defects and infant mortality.
They have also not forgotten the support and care they received during William’s time in the Women & Infants NICU.
Lori recalls how challenging that time was for her daughter, Anika, who at 2½ years old was too young to understand why her parents were suddenly so often away from home. The doctors and nurses at the NICU stepped in to help, giving the family tiny bottles and diapers for Anika to use while playing with her dolls.
The family visited the NICU on William’s 10th birthday and hoped to do so this year, but the pandemic made a regular visit impossible. That did not stop the family from finding a way to celebrate the occasion, however.
Last week, Lori stopped by Women & Infants for a socially distant outdoor visit with Nancy Braga and Jill Dolce, who served as William’s primary nurses during his NICU stay. The family has remained in contact with the nurses, particularly Braga, over the years.
“It was great,” Lori said. “Of course, it would have been better if we could have given each other a hug and go up to the NICU instead of standing outside six feet apart with masks on … [Nancy] is always so excited to see William and how tall he’s gotten, and it’s really special.”
She also brought a special gift. The company for which she works, Music Together Worldwide, agreed to donate digital download codes for a collection of lullabies – a resource that can be especially valuable for premature babies and their families.
In a letter to NICU families, Lori writes: “Studies suggest that music/singing can have many positive effects for premature babies, such as stabilizing their heart rate and breathing, improving sleep and appetite, and lowering the stress levels of both the babies and their parents. With that in mind, the company I work for, Music Together Worldwide, kindly agreed to donate digital download codes which will give you access to an entire collection of beautiful lullabies. I hope you will play these lullabies for your child, maybe sing along, and that the music will soothe both your baby and you.”
Lori said William also included a note to NICU families with the donation. She thanked her company for helping provide the gift, calling its contribution “really generous.”
The current public health crisis, Lori said, made it especially important for her family to find some way to support NICU families.
“I had been trying to figure out what we could do for the families who are there in the NICU, and because I’m a singer and a music teacher, I was thinking that there must be some musical thing that I could do,” she said.
She added: “We always want to thank the doctors and nurses and staff … but then there was this other piece of, it’s hard to be a family in the NICU in normal times, and it must be especially hard now.”
The pandemic has also disrupted the March for Babies, which had been scheduled for March 30 at Roger Williams Park. The event will go on virtually, Lori said, and her team – now named “Will Power,” at William’s suggestion – continues to raise money.
Typically, between five and 10 people raise money for the team, although to keep it simple in light of this year’s circumstances Lori is fundraising on her own and scaled back her goal a bit from its usual level. As of Monday, the team had raised $2,424, well exceeding her target of $2,000. This year’s total brings Team Will Power’s 15-year total to more than $50,000.
“Because we felt so fortunate [after William’s NICU stay], we’ve been raising money for the March of Dimes ever since then,” Lori said. “We do the March for Babies every year as a way to sort of give back and raise awareness about prematurity, because many people don’t have the positive outcome that we have.”
To learn more or to donate to Team Will Power, visit marchforbabies.org/lnistok. To learn more about Lori and Lori’s Music Together, visit lorismusictogether.com.