One, Adjusted.

It's one year since Ainsley's due date.

We knew we'd never make it to her due date. It was a scary pregnancy to begin with - Identical Twins. I remember my first visit with the high risk doctor. I was just about 21 weeks and was in the beginning of All The Drama. He looked me in the eye, put his hand on my shoulder, and said, "Identical Twins...scary."

Scary!

And I already knew because I have my official Google MD.

Ainsley was always small. Around the halfway point of my pregnancy the disparity in growth between Ainsley and Evelyn started. It was as much as 30% by 26 weeks. We saw a specialist who said it was not twin-to-twin transfusion but I still have my doubts.

At 26 weeks we started talking Delivery and Survival. It was a delicate balance between saving Ainsley by delivering Evelyn before she was ready.

That's a 26 Week Twin Belly, right there.

Somehow Ainsley held on until 31 weeks...almost 32. And somehow Evelyn held on too. She looked perfect but sadly she was very ill and nobody knew. My blood pressure was dangerously high and I was spilling tons of protein - preeclampsia was working against the girls along with everything else. This pregnancy was getting dangerous for all of us.

The night before my scheduled c-section is when Evelyn died. She was there and then poof! She was gone. Fetomaternal hemorrhage. Slow for a long time, apparent because of her severe anemia. And then very fast that night. Cardiac arrest, officially.

This is Evelyn Cecille.
She was tiny and perfect.

Ainsley was so small and she cried but did not make noise. Grimace, pissed, but alive. Later we would learn that her tongue was stuck in her cleft palate keeping her from making noise. She was 2 pounds 3 ounces...measuring more like a 27 week baby than an almost 32 week baby.


Ainsley, not on any sort of respiratory support.
Weird to see her without a trach, actually!


The rest is history, isn't it? We are creeping up on 14 months in the NICU. Ainsley's lungs continue to be generally assholey.


Functional lungs are overrated!!


It is busy and stressful. But we are adjusted.

What I want everyone to know about Ainsley is that you cannot spend time with her without smiling. One peek at that gap-tooth smile and you're a goner.

If this doesn't make you laugh then something is seriously wrong with you.

Most everyone we know has not met Ainsley or spent much time with her. But I know many, many nurses and therapists and doctors who pay a purely social visit to Ainsley daily just to get a peek of her ridiculously adorable smile. People will stop us in the hallway and tell us, "Ainsley smiled at me today!" Other parents even stop by to say hello.


Waiting to go outside.

 I've seen for myself the constant stream of visitors. Ainsley is a huge attention whore and eats it right up. It is a huge comfort to me because I am at work all day during the week. Turns out? NICU stays are expensive. And I have good insurance. We are raising a multimillion dollar baby and my job is what is keeping us from being bankrupt with medical bills.


Oscars Outfit.


I added our claims up for a six week period once. Out of curiosity. It was a boring six weeks with no surgeries or any special procedures. It was $322,000. We've been there...60 weeks? So ten times that, roughly? Millions.

She loves her mommy.

My point is not to make people feel bad about money. My point is that we have been so lucky to have a big group of people fall in love with our Ainsley and keep her company during our long, necessary workdays.

She loves her daddy, too.

Ainsley does so many things that surprise me. She rolls and grasps and plays and claps. This kid? Belly laughs. She throws temper tantrums. She has stranger danger and she has clear preferences in caregivers. She throws her toys and she pulls on her pulse oximiter while watching the monitor because she knows it will go off. She can sit up for hours. She loves her stander.



She can't talk because of her trach, but I do believe she is saying,
"BAHAHAHAHAHAHA!"


 Ainsley is not the typical one year old. She is better. She has had multiple surgeries and infections and challenges, but she laughs and smiles and plays and is one of the happiest babies I know.

Oh, hai.

Everyone loves Ainsley, but we love her the most.  I don't know how much longer we will be doing this hospital craziness but...meh.  We're adjusted to this now.

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