A couple in Parker can't wait to bring their first child home from the hospital.

They've been waiting long enough. Evelyn Rose Steppig was born nearly 9 months ago. A rare abdominal defect has kept her at Children's Hospital Colorado all this time but soon, she'll be able to go home.

For Salem and Harlan Steppig, the milestones they hoped to celebrate with their first child together are just different.

"In the NICU, your milestones are hey, we got off this vent and onto a different vent."

The Steppigs celebrated many milestones with their daughter even before she was born. The day after telling friends and family they were expecting, doctors told them this:

"He said the word omphalocele," Steppig said, "It's the first time we heard that."

Omphalocele is a rare abdominal defect that affects nearly 800 babies every year, according to the Centers for Disease Control and Prevention. It's when an infants intestines, liver or other organs stick outside of the belly through the belly button. The organs are covered in a thin, nearly transparent "sac."

"You go from really excited about your pregnancy to 'what do we do now?'" Steppig said, "It kind of sucks the joy out of a pregnancy."

Steppig unexpectedly went into labor just after 35 weeks. Since then, Evelyn has had numerous surgeries including several to put her organs back inside of her body. The baby has lived at the hospital ever since.

The Steppigs say the nurses and staff of the NICU played a tremendous role in keeping Evelyn alive and happy.

"They loved our daughter like she was their daughter," Steppig said.

Evelyn is now in a step-down unit and is preparing to go home on Monday.

She will likely have a big year ahead with at least several more surgeries planned. However, doctors hope she'll be a "typical kid" by the time she turns 3.

"There's a whole series of things that we thought would never happen that are going to happen and it's an amazing blessing and a thrill," Steppig said.

The Steppigs hope to raise awareness about omphalacele through their daughter's experience. You can find their GoFundMe page