Granddaughter of Waukon couple, Addie Gralund, named 2018 ambassador for Cedar Rapids Heart Ball; Will appear on Channel 2 news this Sunday

by Lissa Blake

At first glance, 11-year-old Addie Gralund may look like any other girl her age.

She’s competitive, driven, and enjoys being in charge.

But according to her mother, Kris (Zimmerman) Gralund, Addie is much older than her years.

That’s because Addie has been through a lot for a girl her age - or any age - including four open-heart surgeries.

CHD
Addison “Addie” Gralund, the granddaughter of Dave and Jeannine Zimmerman of Waukon, was born with a congenital heart defect (CHD) called Truncus Arteriosis, which means she had three valves in her heart instead of the usual four. The Gralunds, who live in Cedar Rapids, did not know Addie had anything wrong with her until the day after she was born.

“The doctors and nurses listened to her all night in the nursery, and we were informed the morning after her birth. My aunt, Julie Zimmerman, is a nurse at St. Luke’s in Cedar Rapids. It was great to have her with us as she was able to keep a close eye on Addie,” remembered Kris.

The Gralunds were told Addie would require open-heart surgery within the first month of her life. Because Dr. Burkhart, the state’s best heart surgeon, had recently taken a job at the Mayo Clinic, the Gralunds’ doctor, Dr. Zittergruen (“Dr. Z”), suggested the family take her there. “Dr. Z has five daughters and he said if one of his daughters needed surgery, he would take her to Dr. Burkhart,” said Kris.

A TRYING MONTH
Kris remembers being devastated by the news. “It was a lot of information to take in after a Cesarean section, and I’m happy we didn’t know until she was born,” said Kris.

The Gralunds left the hospital with their new baby girl with directions to try to maintain her weight in an effort to get her to a month old so she could have surgery.

“What a challenging month that was. I slept in a rocking chair with her. It was the middle of winter, so we couldn’t go anywhere and we couldn’t let visitors in the house for fear of spreading germs and getting her sick before surgery,” said Kris.

Little Addie had issues sucking the bottle, breathing and eating, and would throw up very easily. By the end of the month, Addie was struggling, so Dr. Z suggested it was time to head to Mayo. With an encroaching ice storm, the family quickly packed and drove to Rochester, MN, checking in about four hours after they decided to make the trip.

“When we walked into the emergency room, we felt so relieved because we had nurses and doctors who would be able to help us with our little girl who was struggling to breathe and eat,” said Kris.

SURGERIES BEGIN
A few days latter, Addie had her first open-heart surgery. Doctors left her chest open for three days to allow the swelling to go down before closing. “Although it was scary to see her heart beating through the medical saran wrap, we were just sooooo happy to see her,” said her mother.

She had an aortic homograft, a section of aorta from a human donor, which helped create a fourth valve, and stents placed in her pulmonary arteries.

“Leaving the hospital was very scary following surgery. We had to learn how to scoop her up, hold her and pick her up without picking her up under her arms," Kris explained.

A LONG ROAD
And although the first surgery had gone well, the family knew Addie would be looking at several more as she grew. “The pieces of her heart weren’t her own cells, so they wouldn’t grow with her. She would need larger valves to be placed in the future,” said Kris.

Doctors told Addie’s family she would likely need her next surgery around two years of age; however, at less than seven months, a test showed the homograft wasn’t working properly and she would need another surgery.

“The second surgery came sooner than we were prepared for and we were really angry,” recalled Kris.

A third open-heart surgery was performed when Addie was two-and-a-half years old. “Because Addie was older and her heart was a little bigger, doctors were able to use a bovine valve and adjustable stents were used in her pulmonary arteries. Adjustable stents were used that time so if she had narrowing of her arteries, doctors would be able to adjust the stents instead of having to do an open-heart surgery,” said Kris.

It was a good solution, as that valve lasted Addie for almost eight years. Then during a family vacation to Jackson Hole, WY in 2016, Addie started having some breathing difficulty. “When we were in the mountains with a high altitude, Addie would pass out. I had a hunch she would need another surgery in the near future. Her heart became very loud and you could hear it working hard,” said Kris.

So last March, at the age of 10, Addie had a fourth surgery. Kris recalled this surgery being the toughest, as Addie was now old enough to ask very real, adult questions.

“The three months leading up to her surgery were extremely difficult. She was restricted from all physical activities. That meant no recess, no gym class and no sports activities. Addie explained to us that it felt like her identity had been taken away. She became very angry and withdrawn, often taking her frustrations out on those closest to her,” said Kris.

Kris added Addie was mature enough for this most recent surgery to know it should not be taken lightly. “She is wise beyond her years, and we couldn’t hide our emotions as well as we could when she was a month or two-and-a- half years old. She completely understood the magnitude of the situation,” said her mother.

But the seven-hour surgery was a success, as doctors were able to use technology to create a three-dimensional model of Addie’s heart to come up with their plan for surgery.

GOING FORWARD
Today Addie is an extremely busy little girl, who lives an active and normal life. She is in fifth grade, attending Westfield Elementary in the Linn Mar School District. She plays club softball and volleyball and enjoys playing the piano and trumpet. She is a softball pitcher and wears a chest protector when she plays for extra protection.

“Today she does not have any restrictions. She is one of the tallest girls in her class. You would never know by looking or watching Addie that she’s a heart patient,” said Kris.

Kris added Addie’s medical experiences have made her grow up a little quicker than most kids. “She’s wise beyond her years. When you meet Addie, she is a friend for life … very personable … she has the gift of gab. Her hospital stays, surgeries and numerous procedures have shaped her personality,” said Kris.

MUCH SUPPORT
Kris said the family is thankful for the many visitors during Addie’s hospital stays. “Family and friends have been extremely supportive, and each of our employers has been understanding. Our Pastor, Jody Skogen, made the trip to Rochester to be with us the day of surgery last March. It was a huge help for all of us, bringing us a sense of peace during the very stressful day,” said Kris.

In addition, Kris said the family is extremely thankful for Addie’s older sister, Hannah, who is 14.

“Hannah is extremely supportive and protective of her sister. Hannah was just three-and-a-half when Addie had her first surgery. She was always making us smile when we were in the hospital for 15 days. Hannah has been there with us for all of it... Last March, we met a family with a two-year-old little girl going through her first open heart (surgery). Hannah made them a poster to hang in her room that said, ‘If God brings you to it, He will bring you through it.’ Hannah, too, has been affected by the hospital visits. She has great compassion for others,” said Kris.

In addition, Addie’s favorite nurse, Decorah native Clint Williams, has been with her through all four of her surgeries. “He holds a special place in our hearts. He made us feel comfortable from the time we met him 11 years ago and continues to answer our many questions and assures us along the way."

WHAT’S NEXT?
The Gralunds are excited Addie was named ambassador for the 2018 American Heart/American Stroke Association’s Heart Ball scheduled for Saturday, February 24 in Cedar Rapids. She also will be featured on Channel 2 news this Sunday, February 18, and in the February issue of the Cedar Rapids City Revealed Magazine.

“We know she will need more procedures and another surgery in the future, but we pray she won’t need it for a long time. And we hope through the use of technology, her valve can be replaced through a less-invasive surgery or procedure in the future," Kris speculated.

February 7-14 is observed each year as Congenital Heart Disease (CHD) Awareness Week. CHD impacts one in one hundred babies, and unfortunately, one in three babies pass before the defects are detected.