— Jenny Vergara’s daughter was born prematurely the week
before Christmas. It would be nearly Memorial Day before the
child could go home.
to swallow properly, Vergara’s daughter, Daenerys, underwent
surgery known as fundoplication, which involves the
installation of a feeding tube directly into the stomach. The
Gurnee mom’s challenge was to learn how to care for the tube
not only to deliver nutrition every four hours but also to
avoid infections along the way.
first I didn’t want it, because it’s a lot of work, and
you don’t want surgery on your baby," Vergara said
recently. "But if that’s what it takes to bring them
home, you do it."
the way for that homecoming were classes through the Infant
Special Care Unit at north suburban Evanston Hospital, which
is part of the NorthShore University HealthSystem.
Mayberry, a registered nurse who serves as a care coordinator
with the unit, said the courses were set up earlier this year
when she realized that training facilities for health care
providers — including the use of anatomically-correct
simulation babies — should be utilized by parents as well.
had many parents over the years who have taken home very
medically fragile babies. As you can imagine, this is a very
frightening thing for a new parent," Mayberry said.
faced with the realities of connecting feeding and breathing
tubes "were scared that they wouldn’t be able to do it
like the nurses," Mayberry said.
a combination of the "sim-babies" and training
videos, Mayberry said, the goal is to "take out the
pressure of learning at the bedside — take the baby out of
the equation and learn in a way where they won’t worry that
they might hurt the baby."
training not only focuses on gastrostomy feeding tubes into
the stomach, which are utilized for long-term nutrition needs,
but also nasal-gastric feeds, which enter through the nose and
extend to the stomach for babies who are expected to adapt
more quickly to taking food through a bottle. Also available
through the simulation labs is care for tracheotomy openings
for breathing tubes, courses that Mayberry said can be the
Lizbeth Ortiz of suburban Waukegan, the quest to bring her
daughter Mia home from Evanston is approaching three months.
Mia was born with a diaphragmatic hernia — a hole in the
diaphragm that occurs in one in 10,000 births and affects her
ability to take in food.
Ortiz and her husband have used the sim-babies to learn how to
run a nasal-gastric line, and she said she is gaining
confidence about bringing Mia home in another two to three
feel comfortable doing it now," Ortiz said. "I’ve
never experienced anything like this before, and I was afraid.
But once you do it on the baby doll, it’s like you never
imagined. That was the best part (of the training), because
you have to do it on your baby. You do it step by step, and
once you put the tube in the doll, it made it easier."
said the typical training protocol starts with a series of
videos that cover not only basic practices but troubleshooting
different problems. In the simulation lab, she added,
"high-fidelity" dolls can be programmed with such
factors as oxygen levels and heart rates to create real-life
scenarios, and videos can be shot of the parents to review
afterward. Parents are also sent home with follow-up materials
for continuing education.
nice thing for the parent is they don’t have to worry about
causing an infection while they’re working on their
baby," Mayberry said. "It can be scary and
disconcerting for parents to run a tube into their baby, (so)
this is concentrated on the skills they need to take the baby
started the training May 4 and was able to take Daenerys home
10 days later. She described the biggest challenge as
"remembering everything you have to do, because there’s
a lot of information."
was three days of about one hour each — how to clean it, how
to put (the tube) in," Vergara said. "I wasn’t
really scared, because I wanted to do whatever it took to come
home. I just wanted to make sure I remembered all the steps.
Now, I’m comfortable with it."
Daenerys was born, she weighed about 2 pounds. As of June 30,
she was closer to 12 pounds, and both her mother and her
doctors are optimistic that she will soon be able to swallow
well enough to have the stomach tube removed for good.
doing OK. She’s getting stronger, she’s going to
therapy," the mom said. "They want to make sure her
food is going all the way down and not into her lungs, so they’re
going to give it a couple of months to make sure everything’s
a strong baby," Vergara added. "She’s a