My daughter Nova was born at 37 weeks. However, our story didn't start there. We discovered at 19 weeks pregnant, there was something wrong.
"We can't find the stomach and are sending you to a high risk specialist."
I wasn't sure how to comprehend that. How can a baby be born without a stomach? We soon learned she had a stomach, it just wasn't showing up because it wasn't connected to the esophagus like it should be. There was a gap. We were offered many times to have an abortion. There are numerous health issues that can come along with EA, that they couldn't check for until she was born. We didn't even need to think about it, we were going to give birth and fight with our daughter to live.
She was born at 37 weeks and I held her for just a moment before she was rushed to the NICU. Seeing her hooked up to machines and wires and the beeping noises was scary. But what was more scary, was when setting the wires and machines as normal.
After three months in the hospital, 5 surgeries, a feeding tube, a connected esophagus, and hundreds of new medical terms, we were sent home. I wish I could say that was the end of our journey but it was only the beginning.
After a week home, we were helicoptered back to the hospital where they stretched her esophagus open, and found a stage two laryngeal cleft. After two days we were sent home again. After another ten days and her having trouble breathing, we brought her to a new hospital. The only hospital in the country that specializes in her defect. We spent another four months in the hospital, another 10 surgeries, starting from scratch on her esophagus, discovering severe tracheomalacia and having to stitch her windpipe to her spine, we were finally released.
Nova is now 16 months old. She goes back for follow ups every few months, however she is now feeding tube free and has caught up on all her milestones.
I always hear "I don't know how you do it" but I beg to differ. It's easy to do what I did, to stand by your child, go without sleep, pray from morning to night, and do everything possible for your child.
What my daughter did though? I don't know how she did it. I don't know how she continues making step forwards, smiling and laughing after coming out of surgery, and defining bravery and strength to me every day