Sunday, December 30, 2012

Christmas (and all of December) Update

Well December happened, and I have been a bit of a blogging failure as I am finally getting around to my first post of the month.  It has certainly been busy around here, and it has been a while since I have really done a true developmental update, so I'll give it my best shot to remember all the major highlights.  We just returned from spending a great Christmas with Brian's family in Houston.  Casey wasn't quite into the gift opening  yet this year, but she was more than willing to play with the wrapping paper and investigate her new toys once they were opened.  She also got to meet her Great Grandma Casey for the first time, which was really special.  For Christmas last year, our biggest wish was to have her home with us, and 11 days before Christmas, that wish came true.  Adjusting to taking care of our preemie at home made for a very different kind of Christmas celebration, so this year we were very excited to spend the holiday with family.   It is hard to believe Casey's one-year Homecomiversary  (Look it up, it's totally a word) has already come and gone. We have been blessed in so many ways in just one year, and we are amazed every day by the progress Casey has made from her early beginning.

Speaking of which, we had Casey's yearly evaluation with ECI (Early Childhood Intervention) last week. All of our therapists were in agreement that she has made great strides, but based on the tests and questionnaire they administered that day, she does still qualify for services for another year since she does still show delays in several areas.  Services can be provided until she is 3, but she will have to re-qualify every year, and we also evaluate services every six months to make any necessary changes.  For now, she will continue to have Physical Therapy twice a month.  We have seen so much growth since we started PT (initially she didn't qualify), and our biggest goal in this area is for Casey to walk independently.  She is a master crawler, and walks well when pushing her walking toys, but hasn't yet been brave enough to take that first step by herself.  Our physical therapist feels confident that she will get there soon, but we opted to continue her services until Casey reaches this big milestone.  Casey is also the proud new owner of some pretty adorable new baby shoes, which we hope will give her more support in her walking quest.  The other areas she continues to qualify for are Speech and Specialized Skills Therapy, and the goals these therapists will be working on together are predominately verbalization and self-care (age appropriate play, dressing, and feeding herself).  While we are hearing lots more vocalization and attempts at repeating words, Casey is still not consistently saying many words.  Cognitively we know that she has a very large vocabulary and that she recognizes new words very quickly, so at the recommendation of our therapists, we have been working on baby sign language to help her from getting too frustrated when she is trying to communicate words that she is unable to say yet.  Our Early Intervention Specialist is also be working with her on playing independently for longer periods of time, as currently her attention span is only a couple of minutes (or less) before she demands our attention, and they would like to see her playing independently for more like 5-10 minutes.  This made me laugh, because this girl is always busy and constantly on the move, but this tired Mommy could use a break every now and then, so I'm hopeful that we will start to see some progress in this area. Our Speech Therapist is also working with us to help her transition from a bottle to a sippy or straw cup (still a very slow work in progress, but I am planning to really focus on this one while I am at home this next week).  She is also making great progress in trying and accepting more table foods, which has been a huge goal.  In fact, I can't remember the last time that I actually ate an entire meal without little fingers grabbing at my plate.  Thankfully, we can safely cross weight gain off the list of goals, as she was just shy of 20 pounds at her November check-up, and is officially on the charts for her ACTUAL age for weight, height, and head circumference.  She is only in about the 7th percentile or less for all areas, but we'll take it!

Some of my favorite developments since I have done a true update are that Casey gives hugs and kisses on command (more freely to dolls and inanimate objects, but she does reserve a few a day to mommy and daddy and others, too).  This girl also loves music, and has been known to bust out some pretty adorable dance moves to show her appreciation for certain tunes.  She gets a bit obsessive about certain musical toys, and even managed to wear out a brand new set of batteries on a Christmas Jingling Snowmen during our trip to Houston.  To say we were all a bit tired of "Jingle Bells" would probably be an understatement.  We have also been working on identifying body parts, and so far she consistently has belly, nose, and mouth (although she prefers to point out my nose and mouth rather than her own).  When you ask her what we say when the baby goes "Night, Night," she will lift her finger to your mouth and wait for you to say, "Shh!"  Too cute!  A recent Casey funny: I mentioned to Brian the other day that Casey was looking so big in her jeans and tennis shoes, and when she heard the key words, she lifted her hands high above her head and gave a huge grin, indicating her acknowledgement of the words "So big."  For those that don't know this is a typical response to the question, "How big is Casey?"  It was definitely a good reminder that she is absorbing and listening even when we don't realize it.  We are also seeing a lot more evidence of just how strong-willed our girl is.  She has developed a rather painful obsession with pulling my hair, and she sure can give it a good yank.  The word "No" has definitely become a challenge word to Casey, and she only really thinks she has to obey when Daddy gets really firm with her, and even then she will often try to continue what she was doing as she looks back to see if Daddy is watching. We have also discovered that it is virtually impossible to keep socks on this girl's feet for longer than a couple of minutes.  I can't even begin to count the number of cold mornings that I have dropped her off at my mom's all dressed in her winter coat and covered in a blanket, but with her bare feet poking out of her car seat.  Just in the past few days, she has also developed a not so enjoyable tendency to throw an all out fit at bedtime and nap time, which is a bit heartbreaking.  I have no doubt it was this stubborn streak that we can attribute to helping her survive early on, but we are seriously working on these and hoping some will be quickly passing phases.

So if you managed to make it through this long post, enjoy the pictures of Casey's visit with Santa and our Christmas celebration as your reward:

We are so thankful that we were able to squeeze in a meeting with Santa again thanks to my co-worker's personal connection that allowed us to visit him in their home.
 Initially, Casey wasn't too concerned...
 
 And then she got a closer look at just who was holding her.
 
 Nope, not too thrilled anymore!
 
 Begging to be rescued
 
So we changed her into her Christmas dress and tried again.
 
With much the same results!
 
 How sweet is Santa, wiping her tears!
 
 Of course she was okay once we distracted her with singing Rudolph.
 
 And even had a kiss for him, too!
 
 Pretty Christmas Dress!
 
 We attempted a few more shots...
 
 but someone was less than cooperative
 
 Since she was already all dressed up, we attempted a few pics in front of a Christmas tree.  Pretty sure more than a few people driving by probably thought we were strange for taking her picture by the tree in front of the police station (but there was absolutely no one there, and we are still in isolation, so whatever works).
 
 There's our smiley Doodle!
 
 Christmas Day! Ready to open some presents!
 
 Helping Great Grandma Casey open her gifts.
 
 Casey was more than content to just play with the paper and tissue.
 
 All dolled up!
 
So sweet!
 
 Merry Christmas from The Sattlers!
 
I couldn't resist including this one on the card!
 

We hope everyone has had a blessed and wonderful Christmas!

Thursday, November 29, 2012

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.

Saturday, November 17, 2012

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:
 
 
 

Friday, November 9, 2012

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!