Just 18 weeks into her pregnancy, Tayler Hecht heard the words every parent fears: there is something wrong with the baby.
She had gastroschisis, a rare defect in the abdominal wall exposing many of the baby’s internal organs.
Babies with this condition rarely survive.
But Tayler’s daughter Acelynn is a fighter.
Now, two years later, we wanted to check in on Tayler and Acelynn to give you all an update on how this miracle baby turned toddler is doing.
“She’s a small baby, every procedure is risky, every single one of them,” Tayler said in 2019.
At just eleven months old, she already endured 15 medical procedures and spent her entire life up until that point at C.S. Mott Children’s Hospital in Ann Arbor.
Now, Acelynn is just a month shy of her third birthday and 19 medical procedures later.
“She’s happy and healthy for the most part,” Tayler said. “You know we do have some struggles.”
In total, she spent 426 days in the hospital. From the day she was born until April 21, 2020. That’s when the Yooper was finally able to head home to the UP.
“It was very scary,” Tayler said.
Not just because the first time mom was heading home with her medically fragile baby for the very first time ever.
But also…
“We’re in the middle of a pandemic and people that could help me couldn’t because we had to keep them away,” Tayler said. “Even my own family, if you had sniffle, you’re getting out.”
For about the first year home–
“She needed 24/7 care,” Tayler said. “Someone had to be eyes on her 24/7.”
“Coming home was harder than being in the NICU. Just because I had all those people, I had someone in the snap of the finger to help me out. Here you have to be able to handle it out on your own.”
Slowly but surely, Tayler and Acelynn were able to find their routine.
Thanks in part to her parents and their Yooper strong community.
“When I see people in the store, they’ll say to me ‘oh my gosh we’re following her story, we appreciate the pictures,’” Tayler said. “They’ve still been super super supportive, just kind of from a far (and) if I need anything they’re there.”
When she looks back at how far they have come, Tayler can’t even believe it.
“All the time. All. The. Time. I can’t even believe we made it this far,” Tayler said.
While she is so thankful and grateful to see Acelynn grow, it hasn’t been easy.
“You don’t take the simple things for granted anymore,” Xavier asked.
“Nope, nope, not at all,” Tayler said. “The simple things are what’s kept me going. Seriously. Because this has been hard. It’s still hard.”
Things like seeing Acelynn playing with her toys or swinging with her grandpa or her favorite thing– pushing her toys around outside.
“They (these moments) are so special,” Tayler said. “And I just have to enjoy the moment and watch how far she’s come and be thankful and proud.”
Acelynn turns 3 on December 23. While she is so thankful to see her daughter’s continued progress, it’s a tough day for mom.
“You see her and she’s so happy and it’s like why her,” Tayler said.
“Do you struggle with that sometimes, why her,” Xavier asked.
“Always. Definitely I do. I always, always wonder why her. And I don’t get it. I don’t understand it and I don’t think I ever will,” Tayler said.
“Does it give you some solace seeing how far she’s come,” Xavier asked.
“Yes it definitely does,” Tayler said. “It humbled me and makes me a little content. It definitely does.”
The days are getting easier.
Thanks in part to nurse Ashley who comes four days a week to check on Acelynn.
Right now, Acelynn is on IV nutrition 16 hours a day. Their next goals are to get her trach tube out, get her talking more and hopefully eating more food.
But Tayler likes to keep life in perspective and her focus on her little girl’s big smile.
“When you’re like ‘oh my this is so hard; and then you see her big ole smile and you just can’t help but smile too,” Tayler said. “That’s the kind of stuff that keeps parents going.”
Now, they pack up and head back down to the University of Michigan Health System about every three months for Acelynn to get a checkup.
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