Joshua's Story

“It’s crazy to think how much we struggled and lost sleep just trying to make him drink 20 milliliters, and now he’s draining multiple bottles a day.”

The reality of having a micro preemie, born at just over 25 weeks, is a journey most parents don’t prepare for. For Chris and Vicki Johnson, that journey began when their son, Joshua, was born Sept. 23, 2018, at CentraCare – St. Cloud Hospital at just 1 pound, 14 ounces. Reflecting on their past year, the Johnsons now know a journey with a micro preemie doesn’t end once you leave the neonatal intensive care unit (NICU).

“Mr. Josh was discharged from the NICU on Jan. 6. So, we spent a total of 105 days there,” recalled Vicki. “It was terrifying bringing home a baby knowing we would no longer have the help of the nurses because they were amazing.”

Within five days of bringing Josh home, Vicki was contacting the doctor because he wasn’t eating.

“We would spend an hour trying to get him to take a bottle and he would only take like 10 milliliters. And we would do this every two, three hours,” explained Vicki.

For several months, Josh was in and out of the hospital as they tried to help him to eat and gain weight. And there were weeks when he’d have up to four doctors’ appointments.

“It definitely wasn’t over when we got home. You’re not off the ride when you get discharged,” said Vicki.

Joshua's First Year

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In February, Josh had his first temporary feeding tube surgically placed to help him get the nutrition he needed. In April, he went back in for a more permanent feeding tube surgery. Vicki said since having that second tube placed, he has been doing phenomenally.

“Now, he’s taking solids like crazy. He’s demanding food from our plates,” said Chris. “We barely use the feeding tube now.”

“It’s crazy to think how much we struggled and lost sleep just trying to make him drink 20 milliliters, and now he’s draining multiple bottles a day,” said Vicki.

When Vicki and Chris think back on their time in the St. Cloud Hospital NICU, emotions come flooding back. Vicki said there were days where it was just a struggle to get up.

“When you went to see him in the hospital, you just didn’t know what situation you would walk into like, ‘Oh look, you’re back on the ventilator. Why are you back on? Why are you back on the breathing tube?’”

“What hurt most was the uncertainty I had for him,” recalled Chris. “Was he going to make it? Because in the back of your head, you’re trying to prepare for that loss if it comes, while still trying to be in the moment and build for the future.”

“I struggled with how much I should allow myself to love him in those early months because I was afraid I was gonna lose him, and I would think how devastating that’d be not just for me, but for Vicki and everyone else.”

For Vicki, she had a hard time communicating with family members and friends for fear of having to deliver horrible news.

“We had a lot of family members right away say ‘How’s Josh? How’s Josh? What’s new with Josh? How’s he doing?’ It got to the point where I stopped sending photos because if I sent photos and they end up all over the internet, and if we couldn’t bring him home, how could I go back and look at those photos?”

Now Vicki is capturing all the moments of Josh’s life, if she can catch him. She says Josh can be found crawling around the house and getting into everything because, according to Vicki, “he never ever sits still.”

“Seeing him stand up at the activity table and head bang to the ABCs, as annoying as that song is right now, is pretty awesome,” she said.

Vicki and Chris continue to be grateful for all the support they received from the nurses, doctors and staff in the NICU, as well as the March of Dimes Family Support Program. They all hold a huge spot in her heart.

“They were family,” said Chris. “We knew pretty much all of them by name.”

And while they’re still navigating life with a 1-year-old, the Johnsons felt the importance to give back.

“On Josh’s birthday this year, we went to the NICU to say thank you to all of the nurses and doctors. We delivered two care packages: One for a family of a micro preemie and one for the family in our room. Because S315 will always be our room.”

Their advice to other NICU parents: Look for the bright spots every day because that is what keeps you going. It’s a long journey and it is definitely a marathon — not a sprint to the finish.

For Vicki, the result of this race was more than just a son.

“Some people go their whole lives without meeting their hero. And I gave birth to mine. He’s the toughest kid I know.”