It’s incredible how much life can change in a year.
Last holiday season, Kaitlynn and Bailey Miesner didn’t know when they’d be able to bring their first child, daughter Harlow, home from the NICU. Harlow arrived unexpectedly at just 26 weeks, weighing only 14.5 oz, and instantly became their tiny “surprise.”
Harlow didn’t make it home in time for the holidays, but Kaitlynn and Bailey still vividly remember the moment they finally brought her home in March, after 296 days in the NICU and 355 days total in the hospital.
“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 says.
Finally having their baby girl under the same roof felt like a dream come true, but it also came with an intense learning curve.
“The early days at home were a lot,” Kaitlynn recalls. “I think we both knew, in theory, what we were coming into, but actually being home is so different. Even though she came home at 11 and a half months, to us, it still felt like bringing a newborn home.
“We were first-time parents — we’d never brought a baby into our home — and now we were bringing home a baby with a different type of airway, a baby who needed awake, aware eyes on her 24/7. We were overwhelmed, but we also knew this was everything we’d hoped for. That’s what powered us through all the nights we didn’t sleep.”
As they adjusted to life with Harlow at home, the couple leaned on support from family, friends and the community they’d built online by sharing their daughter’s journey.
“Early on, when we knew she was going to be born small, we were always looking up videos, trying to find TikToks about tiny preemie babies and what life was like,” Bailey says. “There wasn’t a whole lot out there at first. And then, when she got the tracheostomy, the audience grew — it became a different community of people living ‘trach life’ at home.
“Everybody’s different. Not every trach baby is like ours, and they don’t all look the same. But we can show what one version of trach life at home looks like. That’s the main reason we share — to show that side of it, because there’s just not a lot out there. Coming home for the first time can be scary.”
“People don’t always show everything it really looks like,” Kaitlynn adds.
“They don’t share that you’re up all night watching her and then up all the next day too. It can feel isolating and scary, but having other families to reach out to — and having them reach out to us — really helps. Just knowing you’re not alone matters so much, because sometimes you feel like you’re the only one going through this.”
In their early NICU days, they clung to small moments of normalcy that connected them to other parents — even something as simple as changing a diaper.
“We got to change her diaper maybe the second day after she was born,” Kaitlynn says. “That was one of the most normal things we got to do in the NICU for the longest time.
“We saw our baby hooked up to all these cords, wires, medications, blood draws — everything. So that one normal thing, just changing a diaper, meant the whole world to us.”
Recently, the family partnered with Pampers to help introduce a diaper even smaller than the ones Harlow wore in her earliest days.
“She was born at 410 grams, which is 14.5 ounces, and knowing this diaper is made specifically for babies under 500 grams makes me think about that little bit of normalcy,” Kaitlynn says. “Other families will get to experience that even more — seeing a diaper that could actually fit their baby perfectly.”
She continues, “When I met with Pampers and first heard about the diaper and its extra-small size, it honestly brought tears to my eyes. It took me right back to our NICU days. I felt every emotion again — and this huge wave of gratitude and hope.”
Since settling in at home, Harlow has been flourishing.
“I think everyone tells you that once they get home, they’re going to thrive,” Kaitlynn says. “Hearing it and seeing it are completely different. She’s started to crawl, she pulls herself up on things. She moves 24/7 now. She also gets to come off the ventilator for two hours a day, so during that time she’s not connected to any tubes, just her pulse ox.”
A recent surgery marked another big milestone — one that Bailey hopes will be the last.
“Because she was born so early, her sutures — her soft spots — closed too soon,” he explains. “We figured that out right before discharge. They did scans, discovered it, and then monitored it for a couple of months after we came home. On October 22nd, she had surgery to reopen those spots and they put in distractors.
“She still has them in now. We do these turns that move her skull and give her brain more room to grow. We’re getting the distractors out next week and then removing the metal pieces in January. It all goes back to her being born so early. Hopefully that’s the last surgical procedure we have, but we’ll see.”
Bailey is overjoyed to see how far Harlow has come developmentally.
“When she first came home, she was pretty behind,” he says. “We’d have her on the couch, in her little bed, and she’d just kind of stare at the ceiling and not do much. Now she crawls, she stands, she furniture surfs.
“She loves Ms. Rachel. She loves movies. It’s amazing to watch her progress and to see how different each holiday feels now. We got home just in time for her first birthday, so we celebrated that at home. Then we had the 4th of July, and then more holidays. On Halloween, we all sat on the porch together, handing out candy. It was a lot of fun.”
It’s a stark contrast to the previous year, when they dressed their NICU baby in Build-A-Bear costumes for Halloween.
“Being able to look back and see how much progress she’s made in just nine months at home is incredible,” Bailey says.
This year will be their first holiday season with Harlow at home, creating new traditions as a family of three.
“I think we’re really looking forward to this month,” Kaitlynn shares. “We already have our Christmas morning pajamas picked out. We’re already excited about what we’re going to wear and what her outfit is going to look like.
“It still feels surreal. I don’t think it will truly sink in until those holiday mornings arrive.”
“It was a good Christmas last year,” Bailey adds, “but this one is going to be better — more special.”
Kaitlynn hopes that the families who have followed their journey — and those who haven’t heard it yet — will find hope in Harlow’s story.
“You are stronger than what you’re going through,” she says. “When we were in the NICU trenches, sometimes it felt like we couldn’t even move. We didn’t want to move. We didn’t want to eat or sleep. We just wanted to sit right next to her. We felt so hopeless and helpless.
“But you are so much stronger than you think. You will get through it. You and your baby make an amazing team.”
The couple has saved tiny Pampers preemie diapers from each stage of Harlow’s growth as a tangible reminder of their journey.
“It’s beautiful to see Pampers supporting every preemie, even the tiniest fighters,” Kaitlynn says. “When we look at those diapers, we see flashbacks of Harlow fighting, getting stronger, making progress.
“It’s a privilege and an honor to share her story, and we hope it brings comfort and hope to new parents who are going through this too.”
