A tiny miracle

Cynthia T. Pegram
Sunday, August 28, 2005

On Monday, 5-year-old Tori Raulerson will take the next big step in her little-girl world.

She’s entering kindergarten.

It’s just another miracle in a life that’s been filled with the unexpected for this slender child who weighed only 1 pound, 4 ounces when she was born in April 2000.

Her mom’s pregnancy had lasted barely over 22 weeks, and doctors did not hold out much hope for Tori.

But she had a rare spark that put her among the small percentage of very premature babies who thrive.

And now she’ll be right there at Boonsboro Elementary School with her peer group, the babies of year 2000.

“(Doctors) told us, ‘We’ll do what we can,’

but for a 22-weeker to survive, let alone have the outcome she’s had - less than 10 percent chance,” said her mother, Heather Raulerson.

“As she got older and started doing better, things changed. They realized that she was going to do better than they first anticipated.”

Tori and her parents, Heather and Gary Raulerson, attended kindergarten orientation last week.

If Tori was a little anxious, making her soft voice even more whispery, she had her parents to rely on.

They have always been there for her.

The school lobby was welcoming and its staff purposeful.

Do you know your teacher’s name, asked the tall woman as she leaned down to catch Tori’s soft response.

“Who?”

“Miss Tarbell,” Tori said, just loud enough to be heard at very close range.

Then came a trip down a long hall, a left turn, and entry into the new world of Stacy Tarbell’s classroom. By the end of this week, 11 boys and eight girls should be at colorful round tables and engrossed in the first stage of a 12-year school journey.

For thousands of parents, it’s an expected moment. But for Tori’s parents, it is another blessing.

Tori spent her first four months in neonatal intensive care at the University of Virginia Medical Center.

Weighing only 567 grams, Tori needed heart surgery to close a natural developmental opening in the heart that normally closes at a full-term baby’s birth.

IVs and tube feedings kept her alive.

Laser surgery made it possible for Tori to avoid retinopathy of prematurity, blindness from abnormal blood vessel growth in the retina due to high levels of oxygen needed by the newborn’s underdeveloped lungs.

“We were told really early on, just after birth, the complications preemies could have,” said her mother. Those included blindness, cerebral palsy, deafness, continuous lung problems.

Tori’s early childhood hasn’t been without complications, but “compared to what they told us it might be …,” said Heather Raulerson.

“It’s a piece of cake,” said Tori’s dad.

At five months old, Tori, whose last month of hospital care was in Virginia Baptist Hospital, came home from the hospital on oxygen, a monitor (the monitor alarm would go off whether it was a drop in oxygen level, or if she wiggled her toes) and medications. She also needed special baby food and breast milk.

Heather Raulerson quit her job to become Tori’s primary caregiver.

At first, it was “a little intimidating,” she said. “But I think the experience of going to the hospital helped prepare me for bringing her home. It definitely didn’t feel like we brought her home without a clue what to do.”

The Raulersons’ countless trips and endless hours with the hospitalized infant and staff had given them great understanding of her needs.

Dr. John Kattwinkel, UVa professor of pediatrics and a specialist in newborn intensive care, said success stories like Tori’s are those “we love to see.”

To put Tori’s unusual outcome in perspective, Kattwinkel said that for babies of 22 weeks gestation, “most people would say the mortality is so high it’s not even reasonable to try and rescue. She’s the exception.”

There’s no way to tell who can survive like Tori, and who cannot.

“The problem is that as a group, those extremely low-birthweight babies have a relatively high incidence of death,” he said. And if they don’t die, they have a high incidence of injury.

It’s not being born weighing a pound that is the problem, “it is all in the complications.”

“If a baby misses the complications, he or she can have a good outcome,” he said. But the more immature the infant, “the higher the incidence of complications.”

“She had complications, but fortunately, none of the things have been major factors for her outcome.”

In the 23- to 25-week gestation range, Kattwinkel said, the figures most often quoted are 50 percent mortality.

“Half will die. Of the survivors, about one-third will have significant neurological injury, and one-third less severe, and one-third normal.”

To see an infant like Tori do well “is tremendously satisfying,” he said.

“It is a very, very risky situation, with a high chance of having a bad outcome. It is wonderful to have the good, but there are some real tragedies.”

Tori’s parents have always worked together for her.

At home, even doctor’s visits were a family affair. Gary Raulerson works for Innovative Wireless Technologies, and the company made it possible for him to go with his wife and infant daughter, helping with the oxygen tank and monitors and to be there for medical updates.

After the first year, there weren’t as many doctor’s appointments. “The outlook for everything was good,” said Heather Raulerson.

When she was old enough, Tori went to preschool three days a week at the advice of the developmental clinic involved in her care.

It was felt, said her mom, that Tori should be with other teachers “so they could tell if there were going to be any learning delays from her being premature.”

Tori adjusted well. “She was still very tiny,” and it was hard to leave her, said Heather Raulerson, who then began working part time.

Tori’s birthday is April 11. She was supposed to be born Aug. 10.

“Developmentally,” said her mother, “she seems pretty much on target for a 5-year-old.”

And at 42 inches tall and 32 pounds, she’s a little taller than some.

She was recently treated for a lazy eye and astigmatism was detected, so now she wears glasses for both.

Tori - short for Victoria - is a high-energy little girl with golden brown hair and a rose-petal complexion.

She loves music, especially Beethoven, and a CD of thunder and rain. She is gentle with animals, has a pet cat, and very much enjoys watching the Weather Channel.

She’s interested in nature. A recent visit to her grandparents in West Virginia gave her a chance to see, and carry, 42 snake eggs her granddad found near the barn.

“And she was adamant about catching a toad by herself,” said Gary Raulerson. “She caught one and carried it.”

Her dad says she’s full of questions, and “Why?” is her favorite.

Each day gets more fun, he said, because she gets to do more things.

“It used to be when we were hiking, I was carrying her all the time. Now she can actually do some hiking with us.”

“I love being a dad,” said Gary Raulerson.

“We’ve always had a faith in God that He would keep His hands upon Tori. We’ve always had that peace that she’ll be all right, and she will grow up to be whatever she wants to be. She’s talented enough to do what she wants to do.”

Since she was about 3, when a windstorm hit near their house, Tori has seemed sure about what she wants to be.

“A meteorologist and tornado chaser,” said Tori.

Her parents haven’t talked to her much about her amazing start in life.

But she’s told on a daily basis, said Gary Raulerson, “that she’s our little miracle.”



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