My wife and I also have a preemie. She was born at 25 weeks, 1 lb 15 oz. My wife had no risk factors and they couldn't figure out why it happened. We also had our share of transfusion, respiratory distress, cardiac arrests, PDA ligations. She had a rough go of it in the NICU, a heart surgery that didn’t go well followed by cardiac arrest.
Then, around her second birthday, she got terrible pneumonia that her little lungs had a hard time with. She spent another month in the ICU.
Unfortunately people can be pretty cruel. When she was still in the NICU an acquaintance tried to market our daughter as an example of why abortion should be illegal. Aside from the fact that this person knew our political leanings are pro-choice, it was very disheartening to have our little girl clinging to life and being pulled into someone’s political discussions.
I try to take those things out and replace them with how grateful and blessed I feel to have my little girl. She'll be three in April and everyday I think about being able to hug her and see her laughing. My experience was not on the public scale yours was but I thought I’d share it anyway for what it’s worth. I still get the flashbacks, and things like panic attacks when we have to go in for routine check ups.
But three years in, it’s starting to get a little better. You make new memories to that help move the other ones a little further back.