Tyson Hugh Hooper

Tyson Hugh Hooper
Our son, Tyson Hugh Hooper, was born with coarctation of the aorta, hypoplastic arch, and a transitional avsd. His first open heart surgery reconstructed his aorta and was on day 9 of life. His second open heart repair was not anticipated to be needed until two or three years of age. Ty had other plans. We spent the vast majority of his first 3 months of life at Vanderbilt as he went into heart failure and was diagnosed with pulmonary hypertension. As a result, the medical team concluded that he needed the repair much sooner than usually recommended, and at just shy of 3 months old Ty underwent his second life saving open heart surgery. God has already worked so many miracles in Ty's life and the life of our family and we know he is using our story. Because of this, we are grateful for Ty's special heart and feel beyond blessed that God chose us to travel this road. We ask for prayers as Ty continues to heal. We are praying for a full recovery and life without restrictions for Ty. We are praying for God to use our family and Ty for His glory.

Thank you to each and every person who supports us through prayer, giving, or just by loving on our family! We are humbled and blessed by all of the ways the Lord is providing for us and know that he is using Ty and his story to do great things!

Tuesday, May 15, 2012

4 Months Old...

Ava Grace turned 4 months old on Friday and had her 4 month well visit today! :-) She got rave reviews as always!

She's always up to something these days...
She learns something new almost every day!

She loves making noises with her lips and blowing spit bubbles - it's her new favorite sound to make! It makes us laugh every time!

She has discovered her toes and they are her new favorite toy!

She usually has her hands on her toes or in her mouth! She still loves her paci when she's sleepy, but the rest of the time she'd rather be chattering at us or chewing on toys and fingers... with a preference to fingers, of course.

She smiles all of the time and is starting to giggle more and more.

She's getting better at sucking her thumb. She also likes to suck her index finger. :-)

Her size is leveling out! She's 13.5 lbs (35%) and 24 inches long (28%). Dr. Johnson is very happy with her growth and says she's just petite! :-)

She's sleeping great! She goes to bed on her own every night at 7:00 and sleeps until 5:30 (ish). She often needs help getting her Paci back in once or twice, but usually not until the early morning - and hour or so before she wakes. Naps are still a work in progress. She goes down in her crib, but usually wakes often, so when I can get a nice long hour or two out of her for a nap, it comes in 15 - 30 minute intervals with me patting her back down and popping the paci in. :-) Dr. Johnson said most babies either nap good or sleep good at night, but rarely do both at this age! He said she'll get better in a few months, but right now sleeping good at night and cat napping during the day is just fine!

Her biggest accomplishment most recently is rolling over! She has now mastered rolling from tummy to back AND from back to tummy! She's a busy girl these days and we have to really watch her!! As soon as she mastered the rolling over from back to tummy she started working on scooting! She tries SO hard to push with her toes and get her knees up under her... it's what she works on all day! :-)

Overall, we are pleased as punch with our little doodlebug! She's growing like a little weed and meeting all her milestones on time or early and we are so happy about that!

We have lots coming up in the next few weeks! We'll be meeting her plastic surgeon for our first visit and to schedule our first surgery - exciting and nerve wracking at the same time. We'll also head back to Dr. Johnson for the rest of her vaccinations over the next 4 weeks. We aren't following a traditional vaccine schedule, but are spacing them out instead. We'll also be trying our rice cereal soon and we'll try to bridge back down off of her super expensive formula to see if she can tolerate the much cheaper "sensitive" formula! :-) Lots of exciting stuff!

Sunday, May 13, 2012

Happy Mother's Day

I have wanted to write all day, but it's hard to find words to write on Mother's day.
I have thought and thought, but the words that are powerful enough to express what it means to be a mother don't exist!  I have decided to just share a few thoughts instead of writing one fluid post.
 Becoming a bonus mom to Lily has changed my life!  It's through her that I learned first learned how to love like a mother.  She's the most precious girl in the world and I love her with my whole heart.  I am so thankful for the close relationship that she and I have!
I can say that being a mother changes you forever. It's a beautiful change and it comes from deep within your soul. It does not come from giving birth.
I can't tell you how important I feel it is for Mamas (and Daddys) to PLAY with their children!  We love to play in our house!  We play in every room and we play everything!  From playing "cooking show" when we are making dinner or baking to playing board games and school - we love to play and it certainly makes an impact on my relationship with the girls!

Piglet once said, "Sometimes the smallest things take up the most room in your heart."  How true! 
 My two girls are the biggest blessings and I am honored to be who God chose to help raise them!
Being a mom is by far the hardest and most rewarding thing I have ever done.  It's my dream job. 
 NOTHING feels better or brings more peace that having my baby in my arms peacefully sleeping... or cooing... or smiling at me!
 I make sure to tell my girls every day how special they are.  I tell them they are beautiful, they are smart, they are funny, they are kind, they are good, they are precious, they are fun... I mean every word and I believe it is so important for them to hear this daily because they need to believe every word too!

Friday, May 11, 2012

Made with love...

Ava Grace recently got a gift from Grandmommy...

Another hand made blanket!

The last one was a quilt for winter, this one is a light weight summer blanket!

It covers lots of floor space for lots of playing!

It has BEAUTIFUL trim that's fun to play with too!

...and I'm pretty sure it's the cutest nursery rhyme print I have ever seen and it's in all our favorite colors!

Thank you Grandmommy!  We play on it every day!

Saturday, May 5, 2012

Life is good...

Got my keys,
got my thumb,
got my Daddy!


Thursday, May 3, 2012

Hey guys, watch this!

First you get an elbow in and an arm out...
 ...then you push off and lean...
 ...gotta really work the head to keep momentum...
 ...and voila!
I rolled over at 10 weeks!
Mommy and Daddy are pretty proud... and obviously finally caught it on camera!

Tuesday, May 1, 2012

Her Eyes are A-OK!

Ava Grace decided to baptize us (her parents) by fire when it came to medical bills and worry!  :-)  As I have shared (I think), we found out the day after she was born that the "bruise" on her face wasn't a bruise after all, but a birthmark called a port wine stain.  This type of birth mark has no know cause or prevention.  It's not a pigmentation thing, but actually dilated capillaries.  This means, it won't fade over time or go away on its own.  We don't even see her birthmark anymore, it's just part of her sweet face.  However, when we found out what it was on day two of her little life, we also found out some disturbing information.  Port wine stains on the face are associated with a couple very serious syndromes with symptoms ranging from abnormal growth to seizures, paralysis, and learning disabilities!  Scary stuff.  In addition, when around the eye, it can cause pressure and damage to the optic nerve... glaucoma!  Needless to say, we were concerned and immediately faced with a future of doctors appointments, specialists, and procedures.  We have been so lucky and blessed.  We absolutely LOVE our pediatrician and he has made all of our appointments for us!  Not only did he make them for us, he sought out and sent us to the best!  So, We have been to Vanderbilt twice so far - two different buildings, two different specialists!  The first was at Pediatric Dermatology and he cleared us of worry of syndromes.  There is less than a 1% chance that she has anything and he said not to worry one bit!  The second was most recently, and it was at Vanderbilt with a pediatric opthamologist! 

Again... good news!  Her eyes are perfect!  I wondered how they would do an eye exam on such a tiny person!  Boy, do they know what they are doing!!  I held her in the exam chair (pictures are on my phone and I am too tired to get the off to upload them right now) while they did the exam.  They held different lenses to her eyes, tested the pressure, and then dilated them and looked at her optic nerve!  Both eyes were great... a little far sighted, but apparently almost all babies are when they are this little. 

We will have to go back to the dermatologist at one year, just to check to see if anything has changed.  We will go back to her opthamologist every 3 months to continue to monitor her eyes.  All this just to be sure and to monitor before, during, and after her procedures.

Her next appointment is in early June!  It's the big mama-jama!  We'll be seeing Dr. Chester - her plastic surgeon!!  From there we will schedule, what our dermatologist has predicted to be 7 to 10 laser surgeries to be done on her face.  Each surgery will take off a layer of the port wine stain and we'll treat until her skin tone matches her other cheek!  :-)  I'm nervous, of course, but thankful for good doctors!  I am also thankful that our little angel won't have to struggle with the social difficulties that could come with her birthmark when she's older.

With each passing doctor appointment we breathe a sigh of relief.  We are also thankful for Grandmommy who goes to our visits with us!  An extra set of ears and a note taker is a must at these very important visits!  (This picture was taken after the eye appointment and her little eyes were still adjusting, lol).  Please say prayers for our sweet Ava Grace and her continued jorney, and also for us as we face potential medical bills - hoping insurance comes through in a big way!  :-)