Thanksgiving

At long last, Casey got to take her first trip to Memphis to meet the rest of my extended family on my mom's side.  There were several family members that had been patiently anticipating their chance to finally get to meet our girl.  Since Casey's birth, one of the hardest decisions we have had to make has been to keep her in isolation to protect her premature lungs.  As a result, we have had to skip most large family holiday gatherings for the past year in order to avoid the risk of exposing her to potential germs and illness.  Even though we are technically in isolation again this year for the duration of RSV and flu season, our pediatrician gave us the go ahead to celebrate with the family as long as everyone had a flu shot, and assuming we did not take her out in public. We were more than willing to comply, although we were a bit hesitant about  how she would do on our longest road trip with her to date (almost twice as long as our trips to Houston).  Luckily, I can report that despite her new aversion to napping in the car, the seven hour car rides both there and back were mostly uneventful, with only one stop each way (and truth be told, Mommy needed the stops more than Casey). It was really great to spend some quality time with my family just relaxing, indulging in lots of overeating, and enjoying the chance for family to interact with Casey and see her amazing accomplishments for themselves.  Here is a glimpse into our Thanksgiving:

Of course I couldn't resist dolling her up and getting in a little photo shoot in honor of her first Thanksgiving outside of the walls of a hospital.

 

I tried and tried, but she just wasn't going to give up a smile.

 

"Look what I got!"

 

 She was very enamored with the leaves.

 

Love!

 

 Sweet little angel

 

 She didn't quite know what to think when we put a bunch of leaves in front of her.

 Posing with Daddy!

 

 How sweet is this? Love these two!

 

 We got in lots of play time, too!

 

 Casey was pretty impressed with her cousins!

 

 Some of us enjoyed Casey's toys more than others! (Sorry, Will!)

 

 One of my new favorites!  So adorable!

 

 This is how most of my family spent Thanksgiving.  Cheering on the Memphis Tigers!  There were some pretty rowdy fans in the house!

 

 Gigi, Mommy, and Casey

 

 My cousin, Claire, was so excited to finally meet Casey (her CES initial twin). 

 

 Another 4 generations of first born daughters picture.

 

 All the cousins (minus Katie - we missed you!)

 

Our little family! Thanksgiving 2012

 

A lot has changed since last year at this time:

Thanksgiving 2011

 

We certainly have so much to be thankful for this year! Casey had a great first trip to Memphis, and it was a wonderful Thanksgiving.

World Prematurity Day

November 17th is World Prematurity Day. Last year at this time, Casey was over three months into her NICU stay with no end in site, and at the time I just didn't have it in me to post about it. I'll be honest, before Casey was born, I didn't know much about prematurity. I certainly didn't think it would happen to my baby. The one I hoped and prayed for all those months. The one who I saw and heard every month on ultrasounds. The one who my doctors said was healthy and growing beautifully just as expected...until suddenly at exactly 26 weeks gestation, my body began shutting down and her arrival was imminent. I did everything right as far as my pregnancy was concerned, and yet on August 7th, 2011, we learned all too well about the impact prematurity would forever have on our lives.

Did you know 1 in 8 babies in the U.S. is born prematurely?

Casey is now a part of that statistic...and she is one of the lucky ones. Today we can celebrate all that she has overcome, but there are many babies who don't survive the fight to live. Many of these births are preventable. World Prematurity Day is about bringing awareness and prevention to a growing crisis in both our country and worldwide, where every year 15 million babies are born too soon. I hope that by sharing our miracle girl's story on this blog we have brought some awareness to the seriousness of prematurity.

Casey was born at 2 pounds, 6 ounces

Her tiny hand

Homecoming Day after 130 days in the NICU

She had a lot to celebrate on her 1st birthday!

 

What a long way she has come

Casey is just one of the many faces of prematurity

 

There are so many others:

Source: http://www.peekabooicu.net/

 

 

 

Adjusted Birthday

Yesterday was Casey's Adjusted Birthday.  In other words, the day she should have turned one according to my originally anticipated due date.  In medical terms, this date is important because it represents the age doctors and medical personnel use to gauge whether she is meeting expected milestones.  It's also the age I use when I really don't feel like explaining to a stranger why my fifteen month old is so tiny. As I thought about the significance of this date, all of these months could be pretty well summed up with that one word..."Adjusted."

ad·just·ed

Webster's defines it as  "accommodated to suit a particular set of circumstances or requirements"

From the second that Casey entered this world at 26 weeks, 5 days, and our entire world was shaken, our lives have revolved around the idea of adjusting:

• Adjusting to the sudden end to what we thought was going to be another three months of pregnancy
• Adjusting to the roller coaster ride of good days and bad that only a NICU parent can truly understand
• Adjusting to the struggle of watching our child spend months just learning how to do "simple" things, like eating and breathing
• Adjusting to my life-alternating diagnosis as an insulin dependent Type 1 Diabetic
• Adjusting to life after surviving 4 months of every spare second spent in a hospital
• Adjusting to caring for a medically fragile child and the many weekly appointments and specialists involved in her care
• Adjusting to the long, lonely months of RSV isolation that come with protecting a preemie's undeveloped lungs
• Adjusting our own expectations for when our child will make certain age appropriate accomplishments
• And just plain adjusting to our new "normal"

I'm sure the list could go on, but isn't that what life is all about?  Adjusting.  So many times others have said, "I don't know how you all did it."  At the end of the day, these were our circumstances, and I think any parent would tell you that you do whatever is necessary to ensure the best for your child. Was it easy?  NO!  Would I wish this situation on anyone?  Absolutely not!  However, to look at all that our sweet miracle has overcome, I can say that it has been worth every painful, overwhelming, uncomfortable, joyful, proud, and amazing moment...despite all the adjusting that it required.  Happy Adjusted Birthday, Doodlebug!  We love you so much!

Here is a little glimpse into our celebration yesterday that resulted in this cuteness:

 

 

I'm pretty sure her internal monologue went something like this:



 "What is this you've put in front of me?"

  

 "I shall ever so delicately bring a tiny morsel up to my mouth."

 

"Hmm, it's not bad, not bad at all!"

 

 "Mom, have you tried this stuff?"

 

 

"Where has this goodness been all these months?"

 



And this would be the point that our child who spent two months mostly refusing to eat started stuffing pieces of cookie cake in her mouth as though it might be her last encounter with such deliciousness!

 

Apparently, this is what you get when you ask for the "Hang in there Monkey" design.  I guess it is one of the less popular choices, based on the fact that it is barely recognizable.  At least it still tasted good!

 

 If that wasn't enough excitement for one day, I also attempted another monthly photo session with her bear.

 

This was really no easy task considering how busy this girl is all the time!

I did manage to get in one decent shot...

 

Before total picture sabotage began!

 



And this folks, is Casey at 15 months...into everything!

Halloween

Considering Casey didn't even go out on Halloween (stinkin' isolation), we probably could have skipped the whole dressing up thing this year.  Since last year at this time Casey was still in the hospital, this was really her first official Halloween.   So of course we couldn't resist dressing her up, especially after we found this adorable costume:

 I give you the world's cutest Monarch Butterfly!

 

While was all smiles here...

 

We definitely had a few meltdown moments...

 



 The funniest being when she attempted to make a break for it, with the weight of her costume forcing her to drag herself in an army crawl across the yard.

 

She looked like an injured little butterfly! What you can't see in this picture is her screaming as if this was the worst torture in the world.

 Luckily, she calmed down and even gave a few more smiles!

 

Happy Butterfly!

 

 

We hope everyone had a fun and safe Halloween!