After 355 Days in the Hospital with Micro-Preemie Daughter, Parents Share Plans for First Holiday Season (Exclusive)

It’s amazing what a difference a year can make.

Last holiday season, Kaitlynn and Bailey Miesner were still uncertain when they would be able to bring their firstborn baby, daughter Harlow, home from the NICU. Harlow “surprised” her mom and dad when she was born at just 26 weeks, weighing 14.5 oz.

While Harlow didn’t make it home in time for the holidays, Kaitlynn and Bailey tell PEOPLE about what it was like finally bringing her home in March, after 296 days in the NICU and 355 days in the hospital overall.

“We got her home March 17th. It wasn’t what we wanted, not what we looked at or had in mind, but we would choose the same thing again. We’d do it all over again,” Bailey tells PEOPLE.

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Finally having their baby girl at home felt like a dream come true for the parents. That said, it also came with a serious learning curve.

“The early days at home, it was a lot. I think we both knew what we were coming into, so to say, but being home, I think it’s so different. Even though she came home at 11 and a half months, to us, we were still bringing a newborn home,” Kaitlynn says.

“I mean, we were first-time parents, we’ve never brought a baby into our home, and now we’re bringing a baby that has a different type of airway, a baby that has to have awake and aware eyes on it 24/7. We were overwhelmed, but we knew that this is everything we’d hoped for, and I think that’s truly what powered us to continue to push through all the nights that we did not sleep.”

As the family continued to navigate the unknown, they had the support not only of their families and friends, but the community they’d built online by sharing Harlow’s story.

“Early on, when we knew she was going to come out small, we were always looking up videos, trying to find TikToks of what small preemie babies were like and what life was like. And there’s not a whole lot out there that we could find at first. And then when she got the [tracheostomy], it continued just to a bigger audience, a different audience of trach life and what trach life is at home,” Bailey shares.

“And everybody’s different. Not every trach baby is the same as ours. They all look different, but this is what one could look like. That’s, I think, the main reason we do it, is to show what trach life is at home because there’s not a whole lot out there. And it can be scary coming home for the first time.”

“People don’t share everything that it looks like,” Kaitlynn agrees.

“They don’t share that you’re up all night watching her and then all up the next day. It can feel isolating, and it can be scary, but it’s nice having other families to reach out to, and even them reaching out to us, just knowing that you’re not alone, because sometimes you can feel alone — [like] you’re the only one going through this situation.”

In their early days as NICU parents, they found comfort in “the little things that our family might have in common with others.” At first, that was all about diapering.

“We got to change her diaper the first, I don’t know, maybe second day, [after] she was born. And that was one of the most normal things that we got to do in the NICU for the longest time,” Kaitlynn says.

“I mean, we saw our baby hooked up to all these different cords, wires, meds, getting their blood, getting everything, so that normal thing of just changing a diaper meant the whole world to us.”

The family recently partnered with Pampers to introduce a diaper even smaller than the ones that Harlow needed at birth.

“She was born at 410 grams, which was 14.5 ounces, and knowing this diaper is made specifically for babies under 500 grams, it just makes me think that little sense of normal that we felt like other families are going to get to experience that even more, of seeing a diaper that could potentially fit their baby perfectly.”

She continued, “When I met with Pampers and talked to them when I first got to see the idea of the diaper and the extra small part of it, it honestly brought tears to my eyes because it took me right back to our days in the NICU. I felt every emotion and every feeling of gratitude and hope.”

Since getting home, Harlow has “been thriving,” the parents happily share.

“I think everyone tells you when they get home they’re going to thrive. I think hearing it and then truly seeing it is completely different. She starts to crawl, she pulls up with things. She is moving 24/7 now, constantly. She gets to come off the ventilator two hours a day now, so she’s not connected to any tubes or anything other than her pulse ox,” Kaitlynn says.

A recent surgery was a nerve-wracking milestone, but Bailey is hopeful it’s the last one their little girl will need.

“Being born so early, her sutures, her soft spots, closed too soon. We figured this out right before we discharged. So they did scans, and they discovered that, and then they watched it when we first came home for a couple months. And then October 22nd, we had a surgery to open those back up and they put in distractors. And she has them in now, and we do these turns that brings her skull back to give her room to grow her brain,” he explains.

“We’re getting the distractors out next week and then pull the metal pieces in January. But that was just due to her being born so early. Hopefully, that’s the last surgical procedure we have, but we’ll see.”

Bailey is also thrilled to see Harlow catching up on her developmental milestones, adding, “When she first came home, we were pretty behind developmentally. We’d have her on the couch and she’d sit in her little bed on the couch, and she would kind of look up at the ceiling and not do a whole lot. But now she crawls, she stands, she furniture surfs.”

He continues, “She loves Ms Rachel. She loves movies. And it’s just amazing to be able to see the progress and then the different holidays we’ve been able to have so far. We were home just in time for her first birthday, so we were able to celebrate her first birthday at home, and then 4th of July and then the different holidays. Halloween, we had our first Halloween. We all sat on the porch, handed out candy, and it was a lot of fun.”

It was a far cry from last year, when the couple dressed their NICU baby up in Build-A-Bear costumes to celebrate spooky season.

“Being able to look back and see the progress in just what nine months she’s had at home, it’s been amazing to see,” he says.

This holiday season will be the first where Kaitlynn and Bailey will have Harlow home, starting traditions as a family of three.

“I think we’re looking forward to this month. We already have our pajamas picked for Christmas morning. We already are just excited about what we’re going to wear, what her outfit’s going to look like,” Kaitlynn says.

“It just feels surreal, and I don’t think we’re going to even really believe that it’s true until those holidays are here, the day of.”

“It was a good Christmas last year, but this will be a lot better, be more special,” Bailey adds.

Kaitlynn hopes the families they’ve connected with and the ones who have yet to hear Harlow’s story will see the hope in her journey through life thus far.

“You are stronger than what you’re going through. I feel like whenever we were in the NICU trenches, sometimes we felt like we could not even move. We didn’t want to move, we didn’t want to do anything. We didn’t want to eat or sleep. We wanted to be right next to her. And we felt so hopeless and just helpless,” she says.

“I just feel like you are so much stronger than what you’re going through. You will get through it. You and your baby make an amazing team.”

The couple is also grateful to Pampers, keeping tiny preemie diapers from each stage of Harlow’s growth as a reminder of how far they’ve come.

“It’s beautiful to see Pampers being behind every preemie, even the tiniest fighters. We look at those diapers, and we see a flashback of Harlow fighting and getting stronger and making more progress,” Kaitlynn says. “And so it’s a privilege and honor to be able to share that and hopefully give hope to new parents who are going through this as well.”