From NICU to Thriving: One Mom's Journey with Her Premature Baby Finding Strength, Hope and Joy Through the Challenges of Prematurity - Ashton Casebier

From NICU to Thriving: One Mom's Journey with Her Premature Baby

Finding Strength, Hope and Joy Through the Challenges of Prematurity

 

As special needs moms, we often face unexpected challenges that test our strength and resilience. For Ashton, that test came in the form of severe preeclampsia and the premature birth of her son Kai at just 27 weeks gestation. What followed was a 114-day NICU stay filled with uncertainty, fear, and eventually hope. Today, Ashton shares her powerful story of navigating prematurity, celebrating hard-won milestones, and finding joy amidst the struggles.

If you're in the midst of a NICU journey or caring for a medically complex child at home, Ashton's experiences offer encouragement that brighter days are ahead. And for those of us further along in our special needs parenting journey, her story is a beautiful reminder of how far we've come and the incredible resilience of our children.

 

1. The Unexpected Early Arrival

Ashton's pregnancy with Kai, her third child, was progressing normally until around 24 weeks when she began experiencing severe headaches and swelling. Thanks to a friend who had experienced preeclampsia, Ashton knew to check her blood pressure. When the readings came back dangerously high, she headed to the hospital.

"I walked in there and I was like, 'Um, my friend and my mom are telling me that I should be here because my blood pressure is high,'" Ashton recalls. "They're like, 'Oh okay, we'll just get you checked out. I'm sure you're okay.' But when they took me back there, hooked me up to the cuff and whatever, they were all like 'What?!'"

Within days, Ashton was being rushed into an emergency C-section to deliver Kai at just 27 weeks gestation. He weighed only 2 pounds, 1 ounce.

The First Moments

  • Kai was immediately taken to the NICU

  • Ashton didn't get to see or hold him right away due to complications

  • It was nearly 24 hours before she could visit the NICU

"When I did finally get to go down there and see him, you know, he's in an incubator. I can't do anything. They're so sensitive to light and everything," Ashton shares. "I was just in the room with him but I couldn't interact with him yet. So that was hard."

 

2. Navigating 114 Days in the NICU

Kai's early arrival meant a long road ahead in the neonatal intensive care unit. For Ashton, this brought a host of new challenges - both practical and emotional.

"I was home alone with just my youngest for those couple hours, but most of the time I'm just sitting at home hanging out with my kids," Ashton explains. "So that was kind of hard because I had two other kids at home that couldn't come with me because they were really strict on the COVID guidelines."

Balancing NICU Time with Family Life

  • Two-hour drive each way to the hospital

  • Trying to be present for her older children at home

  • Guilt over not being able to be with Kai 24/7

  • Pumping breastmilk and bringing it to the NICU

"I would just do day trips, you know - drive down two hours, spend the day with him, and then drive home," Ashton shares. "It was a lot of driving, put a lot of miles on my car."

Despite the difficulties, Ashton found ways to bond with Kai during their NICU time. "Towards the end, I wanted to be there more," she says. "Just because I wanted to keep a closer eye on him and get a feel for when he's going to be able to come home."

3. Bringing Baby Home - New Challenges Arise

After 114 long days, Kai was finally strong enough to come home. But Ashton and her family soon realized they were facing a new set of challenges.

"He came home for about a week, and his oldest brother is in school and his other brother is in preschool, so all the germs," Ashton explains. "He got sick and it was the most terrifying thing I have ever experienced in my life."

Kai ended up back in the hospital for several weeks due to respiratory issues. This cycle of coming home only to be readmitted happened multiple times in those early months.

Feeding Difficulties Emerge

As Kai grew stronger in some ways, feeding issues became apparent:

  • Severe dysphagia (difficulty swallowing) diagnosed

  • Placed on NPO (nothing by mouth)

  • G-tube surgery at around 1 year old

  • Slow process of learning to eat by mouth

"He can take pretty much any solid food in moderation," Ashton shares about Kai's current feeding status at age 2. "But he can have no thin liquids at all, and he can't eat enough to sustain himself. It's like recreational eating."

 

4. Finding Joy in the Journey

Despite the many challenges Ashton and her family have faced, she radiates positivity when talking about Kai's progress.

"He just started taking unassisted steps like two days ago and he's 25 months old," Ashton shares excitedly. "He says lots of words. Still some baby babble mostly, but he says lots of words and knows how to tell me what he wants or what he doesn't want."

For Ashton, these hard-won milestones are especially sweet. "I feel like the excitement is so much more with kids like this," she explains. "I feel like the other kids, they kind of did things and it was exciting for like five minutes because then they just moved on. These well-fought victories are something really important."

 

Advice for New NICU Moms

When asked what advice she would give to moms just starting their NICU journey, Ashton reflects:

"I know that's what I kept telling myself - that it's hard now but it will be okay. Like someday we'll be able to look back on this and talk about it without crying. Talk about it as a testimony to our strength as a family, you know, that we got through that so we can get through anything."

 

Finding Support and Self-Care

Throughout her journey with Kai, Ashton has learned the importance of leaning on her support system and finding small ways to care for herself.

"I think just talking about my feelings to my few closest friends has always been a really good outlet for me," she shares. "My sister and whatever - just this time of year is especially hard because it's, you know, two years ago when it all happened. So I think about it a lot more frequently."

Ashton also finds comfort and encouragement in spending time with her children. "Just being with my kids and seeing how far they've come and everything like that, it puts me at ease," she explains.

While she admits she doesn't have many hobbies or time for traditional self-care activities, Ashton recognizes the need to find something just for herself. "I've been talking to my husband like, I need to find something that I enjoy," she says.

For now, Ashton finds joy in the little moments with her family and the hard-won victories of Kai's progress. Her story is a beautiful reminder that even in our darkest moments as special needs parents, there is always hope for brighter days ahead.

If you're in the midst of a NICU stay or bringing home a medically complex child, know that you're not alone. Reach out to friends, family, or support groups to share your struggles and celebrate your victories. And always remember - you are stronger than you know.

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