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Bringing home baby: Training helps parents care for high-risk infants

July 13, 2015


CHICAGO — Jenny Vergara’s daughter was born prematurely the week before Christmas. It would be nearly Memorial Day before the child could go home.

Unable 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.

"At 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."

Paving 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.

Lynn 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.

"We’ve 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.

Parents 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.

By using 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."

The 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 most time-consuming.

For 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.

Both 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 weeks.

"I 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."

Mayberry 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.

"The 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 home."

Vergara 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."

"It 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."

When 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.

"She’s 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 fine.

"She’s a strong baby," Vergara added. "She’s a fighter."

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McClatchy-Tribune Information Services