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Mountains to Minneapolis: Shelby’s story of persistence

A complicated pregnancy

Not all Children’s Minnesota stories start in Minnesota. This was the case for the Ullom family, who lived nearly 1,000 miles away in Bozeman, Montana, prior to their daughter’s birth.

In November 2009, Suzanne Ullom was excited to hear that she was expecting her second child with her husband, Dan. However, this pregnancy was not as easy as she had expected. Through several miscarriage scares, consistent bleeding, and unbearable pain they were reassured that they could expect a healthy and happy baby girl.

For the safety of the baby, they decided that Suzanne and their older daughter needed move to Sioux Falls, South Dakota, to be closer to family, and to make sure they had a team qualified to handle a premature baby. While Suzanne was already on bed rest, her new doctors knew that her pregnancy would only get more complicated when she reached 24 weeks. Only six days after her appointment at the Sioux Falls hospital, Suzanne went into labor. She was 23 weeks and 5 days gestation when she delivered. The evening of their daughter’s birth, Dan drove nearly 12 hours to be with his wife and family.

Making a big entrance

Shelby Suzanne Ullom made her entrance into the world weighing 1 pound 4 ounces. After a quick baptism, she was rushed to the neonatal intensive care unit (NICU). Suzanne was unable to see her new baby for nearly three hours.

“I found out later, she was dying, and that nobody thought I should see her until they had a better handle on the situation,” Suzanne explained. “They were going to give up and allow me to see her until a nurse informed them that her dad was 10 hours away and they couldn’t let Shelby die!”

Eventually, her care team was able to stabilize her. From that point on, Suzanne never left her younger daughter’s side, always reminding her “It’s OK if you can’t keep going; mommy loves you and will love you no matter what.”

Shelby in the NICU

Suzanne was incredibly proud of what her daughter had done in those first few moments of life. Each time she left the hospital, she didn’t know what would happen next. This experience pushed Suzanne to do a lot of soul searching. She constantly asked herself, “Why me? Why my baby?” and “What did we do wrong?” However, she finally concluded that she was asking the wrong questions. She starting saying ‘Why not?’ because she knew that her family and Shelby could get through this, and that they were in it for the long haul and not giving up without a fight.

Heart surgery

As Shelby approached 7-weeks-old, she needed heart surgery. But the surgery was to take place at the Children’s Minnesota Minneapolis hospital. “Wait just a second. Let me get this straight: you want to send my less than 2-pound baby who can’t breathe on an airplane to Minneapolis?” Suzanne asked Shelby’s care team, completely losing her composure.

Then, she remembered one of the neonatologists telling her, “Suzanne, Children’s Minnesota is the best there is, and if Shelby were my baby she would already be there.” From that point on, Suzanne knew she needed to get her baby to Minneapolis as fast as possible.

After arriving at Children’s Minnesota, Suzanne met with the heart surgeon who would take care of Shelby during her time at Children’s Minnesota. He calmly answered her questions before Suzanne could even ask, all except one: Is Shelby going to be okay? To that, he said, “Your baby is a good, healthy size, she looks just great, and I wouldn’t worry about her if I were you.”

Moving mountains for Shelby

Shelby had surgery and it was a huge success. Blown away by the care they were receiving at Children’s Minnesota, Suzanne and Dan knew they needed to sell their house in Montana and move to Minnesota. They needed Shelby to be close to the best medical care she could possibly get. Just four months after Suzanne initially left Montana, Dan found a job in Minnesota and they bought a house, allowing their entire family to be together again.

Shelby took an amazing turn after her surgery and started to grow and thrive. During this time, it was important to have the entire Ullom family together to support Shelby.

Six and a half months after her birth, Suzanne and Dan were finally able to bring their youngest daughter home. But that wasn’t the end to the road bumps the Ullom family experienced. Shelby wasn’t learning how to eat, so she needed a feeding tube and was also on oxygen, but thankfully she was where she was supposed to be: home.

Shelby moves home

Shelby in the hospital

However, 10 days after coming home, Shelby had a fever so severe that they called 9-1-1. She had pneumonia, and needed more oxygen than ever before, but was able to come home after that, too. Every 10-15 days, Shelby was back at the hospital.

Until they had the biggest scare of their lives. One night, Dan and Suzanne were up all night with Shelby, who was struggling to breathe, so much so that she started turning blue. After being brought to Children’s Minnesota by ambulance, the team took care of her right away. She was admitted to the pediatric intensive care unit (PICU), where a breathing tube was inserted because Shelby was too tired to keep breathing on her own.

Two weeks later, her care team thought she would be able to breathe on her own, but in less than 12 hours, she was again unable to breathe. Suzanne couldn’t continue to watch her baby struggle, so her care team placed a trach to help her get oxygen.“I was slightly relieved and scared out of my mind at the same time. They were about to put a hole in my little girl’s throat—a difficult thing for any parent to get their head around,” explained Shelby.

The trach surgery was a success, and two months later it was time to talk about what they needed to do in order to bring Shelby back home. And while Suzanne and Dan would have done anything to bring her home, they couldn’t help but think it was only a matter of time before she would be back in the hospital.

Keeping Shelby home

But they were so happy to find out that they were wrong. As soon as they brought her home, Shelby’s home care nurses were telling Suzanne that they were going to do anything and everything they could to help her keep her daughter at home.

And home is exactly where Shelby stayed. Her parents are elated to share that she is doing great to this day.

“She is developmentally delayed, but doesn’t let anything stop her,” said Suzanne. “One thing about Shelby is she always has a smile on her face! She is the happiest little girl and has a way of stealing everyone’s heart.”

The Ullom family standing in front of a Christmas tree at home

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