Parents of Micro-Preemie Discover Build-A-Bear Clothes Fit Their Baby Perfectly: 'One Day We'll Show Her' (Exclusive)

Kaitlynn and Bailey Miesner have been on a long journey with their first baby, but they're grateful for every step forward

• Kaitlynn and Bailey Miesner welcomed daughter Harlow at 27 weeks on March 27, 2024

• The first-time parents tell PEOPLE about their micro-preemie's remarkable journey

• The couple recently celebrated Halloween with Harlow dressed as Belle from Beauty and the Beast
  

A couple looking forward to the arrival of their first baby maintained their hope after receiving devastating news.

Kaitlynn and Bailey Miesner were excited to become firsttime parents. Everything was smooth sailing until 19 weeks into Kaitlynn's pregnancy, when doctors noticed the fetus was measuring at 17 weeks.

"My doctor had wanted us to come in a month later and do another growth check to see how she was growing," Kaitlynn tells PEOPLE exclusively. "At the next appointment, I was 24 weeks and she was only measuring about 20 weeks, so she had stopped growing even more. That appointment was at the beginning of March and they ended up air flighting me to a hospital two-and-a-half hours away because they thought that she would be delivered pretty soon with how small she was and how she wasn't seeming to get any nutrients."

After two days in the hospital, Kaitlynn and husband Bailey learned that the umbilical cord had "absent flow," so baby wasn't getting all the nutrients she needed to grow. "They told us then that she was only about 330 grams [and] that the baby wasn't viable at that size," the new mom says.

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Related: Micro-Preemie Was Born Weighing Less Than 2 Lbs. Soon She’ll Be a Nurse at NICU That Saved Her Life

Kaitlynn was discharged from the hospital the next day. The couple followed up with a specialist who did an amniocentesis. The specialist also said they didn't think the baby would survive, but Kaitlynn and Bailey held out hope.

"It was hard, when they told us that. They didn't know what was wrong. They asked us if we wanted to try to resuscitate or do comfort care. It's hard to choose something like that because you don't ever know," Bailey says. "You don't want to not give her a chance, but Kaitlynn and I felt like that was no way to live, not the quality of life we'd wanted for her."

Weeks later, the couple returned to the further hospital and learned that at 26 weeks, their baby girl was measuring 22 weeks. "We stayed there a total of eight days before they had to do an emergency C-section because her heart rate kept dropping," Kaitlynn shares. "They got her out as quickly as they could."

Harlow "surprised" her mom and dad, born at 14.5 oz., and has been fighting her way to coming home every day since.

"She finally is not intubated anymore, so she doesn't have a breathing tube. She has a chronic lung disease with being so premature," Kaitlynn says. "They said that her lungs were the size of almonds whenever she came out. Right now, they're working on her breathing and hopefully be able to get her down to one liter of a nasal cannula to get to come home."

Being more than two hours away from their baby girl has been difficult for the couple, who has gone "back and forth," every weekend since March 27.

"My husband and I have definitely struggled," Kaitlynn says. "Some people, it's easy for them to get pregnant and give birth. We have a lot of family around us and friends that are getting pregnant and having babies. The days are hard when we don't get to go see her because we both work full-time jobs. It's hard that we don't get to spend every single day with her and we've missed out on some of the first things she's done. But at the end of the day, we are just so thankful that we have her."

"Everybody who loves Harlow is going through it, but no one like me and Kaitlynn. I think we definitely hold each other up, at different times when one is more sad that the other," Bailey adds.

Kaitlynn and Bailey have also found support from their online community via TikTok.

"I wanted to put something out because it was hard for me, hearing everyone say she wasn't going to make it. We wanted to show people that like just because science says babies aren't viable doesn't mean that they aren't and we got to witness that firsthand," Kaitlynn says.

"We share as much as we can to share her story for people who are going through something similar," Bailey says. "And also for Harlow. She's fought hard and I think it's right to share that, for all the other babies fighting. We know we're a rare case, but it happens."

Recently, the family of three celebrated Halloween in the NICU. Kaitlynn and Bailey documented a trip to Build-A-Bear after getting a tip that the toy costumes there are well-sized for the tiniest trick or treaters.

"You just have to find fun where you can. We just choose to be thankful and realize we're lucky for every day she's here with us," Kaitlynn says. "We would have loved for her to be home for her first Halloween, but we celebrate the small moments like when you see your baby's face light up because people at the hospital tell her what a pretty princess she is. It makes it all a little less hard."

The pair picked a Belle costume from Beauty and the Beast. "It was Kaitlynn's idea. She always has great ideas like that, being positive. We always do fun things with her and the staff there makes it easy for us," Bailey says.

"We went out and bought a bear this past weekend from Build-A-Bear so that one day we'll show her, 'You were small enough to wear this!' because at 7 months, she's still that small," he adds.

The parents look forward to seeing Harlow continues to progress until she's ready to come home.

"We're looking forward to having her here for Christmas or maybe even Thanksgiving. We realize this is just how it is right now. We'll get to do everything bigger and better when she gets home," Kailtynn says.

"We feel lucky because we've met a lot of people who weren't as lucky," she adds. "Watching her grow is amazing. We're still working on the lungs, but that's another reason we're lucky. She's otherwise a healthy baby. And she'll grow out of it. It's just a mixture of being born too small. It may not be for a while, but she'll grow out of it and live a long, healthy life."