Micro preemie has come long way in 5 years

“I was 23 weeks pregnant when Ari was born. She was a micro preemie, and weighed just 1 pound, 4 ounces. Because her lungs were very premature she couldn’t breathe on her own, so she was intubated. Then they did a trach, and then a G-button for feeding. She was in the hospital for a year and a month.

“When we were finally able to bring her home, she was on a ventilator 24 hours a day. They taught us how to change her trach and her G-button. They prepared us for emergencies, like if we had to give her CPR.

“There have been some scary moments. I’ve seen her heart rate go down to 25, where she’s turning purple and blue, her eyes rolling backward because she couldn’t breathe, and you think she’s already gone. She’s been in and out of the hospital, sometimes days, sometimes weeks. But she keeps bouncing back.

“Healthwise, she’s doing really well right now. She’s not on the ventilator. They’re talking about taking out the trach maybe next summer. That would be awesome. That would be a big, big step for her.

“She still has a long way to go. She just learned how to walk about a year ago. She still doesn’t speak. She still has to learn how to eat orally. She’s actually scared to eat. So she has to go to occupational therapy, physical therapy, eating therapy, speech therapy.

“She also was diagnosed with autism. She’s not used to big crowds, and loud noises scare her. She gets over-stimulated. So we keep her at home most of the time, especially right now with cold and flu season.

“She mostly watches Ms. Rachel, who does sing-along songs and teaches things like ABCs. It’s her favorite character. Although she just turned 5, her brain development is like a 2-year-old. She still doesn’t really know how to play with toys. She mostly just throws them because she doesn’t understand.

“It’s been a long journey. My mom, my sister, our close friends, they have been there for us throughout everything. And most of all, God has been there for us.

“There are moments when your faith is put to the test, when there are things you don’t understand. But I was told at a certain hospital that I should go ahead and just disconnect her. Because she was never going to have a normal life. That she was going to be bed-bound. Like, why would I want her to suffer? But we kept our faith. And with everybody just being there for us, that’s what’s kept us going.

“My hope for her? I definitely want her to be able to eat one day. For her to have that experience of sitting down to enjoy an actual meal. And I would love for her to speak. I would love, love to hear her call me mama.”

— Myriam Mejia