The now 2-year-old is keeping her parents and her big sister on their toes.
The day Ellie was born in October 2023, at 22 weeks weighing just 1.3 pounds, her family knew they had a long road ahead of them, but they had no idea what their journey would look like.
“Those 7.5 months felt like the longest months of our lives,” Ellie’s mom, Caroline Zak, remembered. “It was so hard to picture life outside of the NICU.”
Caroline went into labor 18 weeks early after having severe pregnancy complications including a chronic abruption, which meant the placenta separated from her uterine wall and is extremely dangerous for both mom and baby. Not only that, but her water had also broken two weeks before she gave birth, without her knowing.
Caroline says the hours after baby Ellie was born were a whirlwind.
Overcoming serious health hurdles
“I got taken over to the NICU, and it was just a wild scene, and I haven't quite seen anything like that,” Caroline, who is a nurse and no stranger to medical settings, remembered. “The way it was described to me was she's about to run a marathon and this is just the beginning. About a week in, her body gets tired, and it becomes a lot harder for her.”
And things did get hard. During those first few weeks Ellie was diagnosed with medical necrotizing enterocolitis, a serious condition that involves part of the intestine becoming severely inflamed and can be fatal. She was able to heal with antibiotics and rest.
Three weeks after that was the toughest time of Ellie’s hospitalization. She became unstable right before Thanksgiving on the day that just happened to be her parents’ 6th wedding anniversary. An issue with her breathing tube led to her being reintubated with a larger tube and afterwards her oxygen saturation levels were dropping.
“They made changes and she was just not responding,” recalled Caroline. “They tried a different ventilator even and she really didn’t like that. I remember asking our nurse practitioner, ‘Is this it?’ I just sobbed and sobbed and sobbed in that room.”
After several excruciating days of waiting and worrying while the care team made adjustments, Ellie’s stats improved and she stabilized. One thing Caroline learned that weekend, was that in order to take good care of Ellie she had to take care of herself.
“I also walked away from that weekend with a new drive to focus on myself more,” explained Caroline. “I had to dive more into some hobbies like crocheting so I wouldn’t totally lose myself in the NICU hardships.”
The next hurdle was making it to her due date of February 2024. While they met that milestone, little Ellie remained on a ventilator and a family meeting was held to determine her long-term goals. They decided she would need to have surgery to have both trach and feeding tubes placed to help Ellie breathe and get the nutrition she needed.
“We had some ups and downs with weaning off medications after surgery and getting her on the home vent,” remembered Caroline, “but 3 months later she was able to come home.”
Finally released from the NICU
When they first got home in May 2024, it was quite the adjustment, but a welcome one.
“Our first few weeks at home were a surreal, exhaustive blur,” Caroline said, but added, “Ellie spent her first Halloween, Thanksgiving, Christmas and Mother’s Day in the NICU, so finally being able to celebrate those holidays and her first birthday at home was amazing.”
She said would never forget the people who helped them reach that major milestone and how kind and inclusive Ellie’s care team was from day one.
“It just felt like they all were there for not only Ellie, but for us, too,” Caroline explained. “They included us in rounds. They went through each of her systems and talked about the plan and always asked if we understood what was going on and if we had any questions, concerns, comments, anything like that.”
They also made sure she could mother her new, albeit tiny baby whenever possible.
“Once we were allowed to participate in her care, they always asked, ‘Do you want to change her diaper?’” Caroline remembered. “So, I was changing her diaper when she was a pound.”
Making major strides
They family has come a long way since those first 7.5 months.
“Ellie is now two and a wild sassy toddler,” Caroline shared proudly. “She is walking around, trying foods and able to be off the ventilator all day including her nap! She has come so far in the last year and it’s incredible to watch how curious and intelligent she is.”
And she’s her big sister’s biggest fan.
“Her favorite person is her sister,” Caroline said. So, anything Sissy is doing, Ellie is right behind her trying to do the same thing.”
Looking back, Caroline wishes she knew then what she knows now.
“I wish I could go back to that person who was holding her for the first and second time and say, ‘this is where you're going to be,’ just to take some of that stress away.”
Learn about CHoR’s Level 4 NICU expansion opening January 2026.
