Friday, February 24, 2012

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.

--

psst...Don't forget to enter the eHarmony Sweepstakes for a chance to win $100!

51 comments:

pyjammy pam said...

best. smile. ever.

happy one, adjusted!

Joanna {Baby Gators Den} said...

Happy one!! Beautiful, happy baby!

Becky said...

I know I smiled at her :) And I love that she refuses to let any feel sorry for her!

Just the Tip said...

Happy Birthday Ainsley.

Jen..you are my hero. Best momma, ever!

B's Mom said...

Awesome post!

I am loved seeing a picture of Evelyn, too. <3

Angie said...

Thank you for sharing Evelyn's picture, she was beautiful.

Ainsley is adorable.

Wiley said...

I absolutely love this post, all of it. The beauty, the laughs, the sorrow, the stress, the love and all of it.

Ours were due march 4 and born a week before on 12/23, so I've always felt an extra connection. Our survivor and our stillborn twins both have different stories, but still really makes me feel more connected to both Ainsley and Evelyn. And now adding an unexpected third pregnancy to both of us and I watch your updates with bated breath!

Wendy said...

Your daughters are so beautiful, Jen.

And you are such an amazing, strong woman and mother.

Thank you for sharing what you wrote and the picture of Evelyn, too.

Dani said...

Beautiful baby girl! Amazing smile!

Delenn said...

Wonderful post. Such love that all your children have received. And Ainsley is just the sweetest.

HereWeGoAJen said...

Evelyn was beautiful and perfect.

Ainsley is awesome. Happy one adjusted!

Greta said...

Adjusted seems very accurate. Your whole family has "adjusted." What a testament to your strength.

Ainsley is a beautiful adjusted one year-old!

Carol said...

That was a lovely post. Thank you! So gracious and kind about both your daughters. You've come a long way baby! Can't wait to meet your forth daughter!

alison said...

I have tears. Thank you for introducing us to Evelyn, what a precious girl.

I look forward to your fb pics of Ainsley, she never ceases to make me smile.

And you? Are a kickass mom.

Mo and Will said...

What a beautiful post. And what beautiful daughters you have. Thank you for sharing with us. Jen? You rock.

Mo

Lydia said...

Thank-you for sharing such intimate and beautiful photos of your twin girls.

JP said...

Evelyn and Ainsley: beautiful and perfect.
What a great post.

sarah said...

I measure the awesomeness of all families on this earth against your family. You are a hell of a bar of excellence.

Rebecca said...

Has anyone stepped in like The March of Dimes? Are there any organizations out there to help out with the bills? There has to be something. Have you checked with the financial aid department within the hospital? Depending on the family's total income, they might 'write off' a portion of the stay. Sometimes they give people 20% off just for asking.

Sara / Aryanhwy said...

It's no denying that that is one cute grin, but looking at all the pictures the thing that sprang to mind was "Evelyn is so beautiful!"

Leah said...

Evelyn is so precious and beautiful. Ainsley definately has an awesome personality.

Losh said...

Thanks for sharing your sweet girls with us. Evelyn was beautiful and Ainsley is adorable.

N2Design said...

God bless you and your family. I am not sure how you juggle it all. I am a mom to a 26 weeker, who is almost three, and 27 weeks pregnant with my second and on bed rest. The NICU just sucks, but we also had nurses who loved and cared for my son, which made things so much easier. You are such a strong, loving mom. Your children are very lucky. I'll continue to pray for Ainsley's health and discharge from the NICU.

CurlyGirly said...

Thank you for sharing your NILMDTS photo of Evelyn. It's a beautiful picture.

Jessica said...

Thank you for sharing your beautiful Evelyn. Happy 1 year adjusted, Ainsley!

naturalmel said...

Jen - I love you. I know that's weird but whatever dude. I am still chugging along on the IVF train (been on it for 5 years now) and you are one of my many internet "friends" thats keeps me sane and full of positive energy. Thank you for sharing/oversharing and putting Ainsley in that fabulous Oscars outfit and taking a picture and showing it to us.

You Rock and so does your family!

Caz said...

Trying not to lose my shiz at your story.
Your girls are all so beautiful and they have an awesome mom

areyoukiddingme said...

Happy 1 adjusted, Miss Ainsley. You know, if you get those lungs working, you can broaden your adoring audience...I'm just saying.

Evelyn was quite the little beauty. Wishing we were celebrating her adjusted year too.

Bree said...

What beautiful babies you and Mark make. I loved seeing a picture of Evelyn.

Amelia said...

They are both absolutely beautiful. I'm so grateful you share them with us.

Ready To Be A Momma said...

This is an amazing post. Such a roller coaster of emotion! So glad to see Ainsley so giggly and cute!

A. and S. said...

Evelyn is tiny and perfect. She looks like she's sleeping. I'm so sorry you didn't get to keep her.

And you are right, RE: Ainsley. Best smile ever. Her Oscars outfit is fab-u-lous!

Sarah said...

Evelyn is so pretty.

And Ainsley, she sounds like a total spitfire. What an awesome grin.

Kristin said...

You have such beautiful girls <3
Thank you so much for a great uplifting post. You are an amazing mother!!!
Keep up the good work :)

I'm just a girl said...

Evelyn is absolutely beautiful. I love the story about Ainsley pulling off her pulse ox & watching the screen. Such a smart little girl!

Courtney said...

Thank you for sharing photos of your girls. They are both so wonderful! Evelyn is just beautiful, as we knew she would be, and Ainsley is a total crack-up!

You are so strong and positive. I just love that about you!

Kahla said...

Best pictures EVER! So need a smile tonight and I just got several. Your post made my eyes want to leak. Just precious

evsmarie said...

What a beautiful picture of Evelyn! Thank you for sharing.

Happy (adjusted) 1st Birthday Ainsley!!! My 18-mo-old was sitting on my lap when I was reading your post and lost her mind at the pictures of Miss Smiley Pants. She kept wanting to see "BABY!" again and again (couple that with manic giggles). Ainsley is a huge hit around our house!

Bobbi said...

thank you for sharing your beautiful evelyn.

i've been wondering if they will move ainsley out of the nicu into the picu or if she will just stay there till she is ready to go home...?

Shannon said...

this is a beautiful post, Jen!

Momma Lolo said...

I just love your family. She has the most beautiful smile. I hope she gets to go home soon. Thanks for letting us strangers into your life. Ainsley gives me hope. She is brave little baby.

Kara said...

Beautiful Evelyn, thanks for sharing pics. Ainsley looks and sounds like a joy. So happy for your family.

Skywaitress said...

Oh my she looks JUST like her daddy, doesn't she? She looks like the sweetest baby and she's such a fighter. She's going to be an amazing woman someday.

KatieR said...

Jen,
Thank you for sharing your amazing family with all of us! Ainsley's smile is pure joy and Evelyn was so precious and beautiful. I'm looking forward to the day when Ainsley's trach can be removed and she can tell the hospital to go "suck it" - but still with that big grin! Hugs to you all!

Lorrie said...

Are you tired of hearing the phrase," I don't know how you do it!?" Well, I don't. You are amazing, such an inspiration. Your daughters are adorable. Thank you for sharing Evelyn's picture.

Wendy said...

It's been a while since I have read your blog but I'm so glad I clicked in. Evelyn truly is perfect and will be forever. And Ainsley, sweet adorable Ainsley. She is one spectacular child <3

Kate said...

I just want you to know that I have stalked your blog forever. Well, I don't want you to know that I am a stalker. Okay, let's start over. I think you are awesome. I have followed you since I found out I was carrying twins, then had them 11 weeks early, had a 2 month NICU stay, and anytime I had a terrible day and thought I couldn't do it, I would read your blog and toughen up. I literally would ask myself WWJD? But not Jesus, Jen. :) My boys are going to be 1 in a few days and I just wanted you to know how funny and inspiring you are to me and say congrats on the new baby!

valentina said...

i have followed your blog for as long as i can remember knowing what a blog is...but have never commented. this is my very, all-time favorite ever post of yours. beautiful little ainsley and witty you! please tell ainsley 'thank you' for bringing a huge smile to my face this evening!

winter blue said...

beautiful post Jen. thanks.

Lori said...

What a forthright and beautiful post. Thank you for sharing it and especially the photo of beautiful Evelyn.

Ado said...

Just read this all about Ainsley. You're right, her gap-toothed smile makes me smile. (-: