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!

Saturday, February 21, 2015

Ice, Snow, and lots of it!

This has been a week of snow in Tennessee... literally an entire blissful week!  Not everyone shares my sentiment, but I loved every flake.  No work, home with my family, can't go anywhere - A OK with me!

The kids loved it too, of course.  This is the most snow I have seen in years - since I was a little girl.  I loved getting to share a big snow with the girls and make all those fun memories!  Type of precipitation varied widely across Middle Tennessee, but here in Portland we got about 2 inches of sleet followed by several inches of snow.  When it was all said and done we stuck a ruler in the snow and measured about 7 inches total.

We had so much fun!  Movies and popcorn, snuggles, games, and as much snow play as we could get in without freezing our buns off!

Sunday, with lots of snow in the forecast, we went to Lowe's and got 2 sleds.  I was so glad because this snow was too powdery for a snowman, but the sleet underneath was perfect for sledding! 

We sled in our backyard, in our neighbor's back yard and even on the road a little bit.

(I think the picture of Ava Grace above looks a lot like me when I was a little girl... what do you think mom?) 

Here we are trying out the sleds for the first time.

Here is our road! 

We took a walk down the road just to see if we could sled down a bigger hill.  The girls were cracking me up, enjoying their ride.  Ava Grace almost fell asleep - no joke! 

 The big hill was a bit much for our girls... well, actually Ava Grace would have gone down any hill, any where, any time, but Lily was skiddish and it stressed mommy and daddy out!  I was especially leery of falling, so we headed back to relatively flat land.

One thing that became rapidly apparent is that our house has a complete lack of snow apparel!  Only Ava Grace had boots and none of us had waterproof gloves.  We don't get snow often, but I am thinking I need to keep some snow gear on hand just in case.

Ava Grace and Cookie next across the street.  This girl needs a dog! 

Super Ava Grace!
She insisted on wearing her cape (that used to be Lily's) out in the snow!  She "Zippidy-Zoomed" all over the yard.  It was pretty much adorable.  She is a super-hero loving girl.  When we got inside she changed into her pirate outfit for the rest of the day and proclaimed herself a "beautiful princess pirate."

 Zippidy. Zoom.
 I'll have to post a video later of the giant belly laughs that came out of this girl sledding.

Pure. Joy.

 Sledding with Kayleigh across the street.

 More sled rides with Daddy pulling... poor Daddy got a work out!

Kassidy did her fair share of pulling and sledding with Ava Grace as well! 

Missy even did some sledding!  She ended up having the perfect sledding hill in her back yard.  Just the right size for the girls! 

We pretty much have the best neighbor-friends ever!  BLESSED beyond measure!

And after hours and hours of rain, our road is still white, we still have several inches of snow on the ground, and not a blade of grass to be seen.  Wondering if this stuff will ever melt.

Tuesday, February 10, 2015

Vandy marathon #2

(Baby Ty at 33 weeks)

Yesterday we headed back to Vanderbilt for another day full of appointments with our medical team.  It was exhausting and full of questions and few answers, but it was a good day.

Every day, we praise God.  Yesterday he gave us a multitude of reasons to sing his praises.

Our first appointment was with our MFM for another ultrasound and discussion of the findings.  What did they find?  One very big, very healthy baby boy!  Ty is already weighing in at 5 pounds with 6 weeks to go until delivery.  His head circumference is in the 95th percentile - yikes!  C-section anyone?  (kidding, we are still a go for vaginal delivery if he'll get his head down, but it sure does make me wonder if I'm going to be pushing out a 10 pounder).  We are PRAISING JESUS for his health!  Everything was the picture of perfection and the bigger the baby the better off he'll be for his heart surgery!  Big and Healthy = Thank you Jesus!

We met with the neonatologist and toured the NICU.  I cried.  I can talk bout it until I'm blue in the face with anyone, with confidence, with a smile even, until I'm standing in Vanderbilt Children's hospital, in a litte NICU room, looking around through the glass into other little NICU rooms with tiny babies and tubes and machines and tiny little cries and computers everywhere.  It was a slap in the face... another little piece of reality sinking in.  Still, even though it hit kind of hard, it was GOOD to see where we anticipate being.  It was GOOD for the neonatologist to wrap her arms around me and tell me that she had a baby in the NICU once too and she has been there and that Ty will be so well taken care of.  It was good to hear they want us there and they want us to hold him as much as he is able to be held and that we are apart of the medical team and they want us there to participate and to bond and to be mommy and daddy even when we can't hold him.  Unfortunately we also learned that NICU is on flu season lockdown.  Last year they had 4 babies get the flu in the NICU, so this year until the flu ban is lifted it'll only be Chris and I and two other designated individuals able to see him.  Everyone else will have to be happy with pictures until we get out of the NICU.  That was a bit of a disappointment, but certainly understandable.

We had another echocardiogram and another sit down with our cardiologist to talk about the plan.  This was the most frustrating and miraculous part of our day.  Ty is being so very uncooperative.  He is breech and facing my spine with his spine out towards my belly.  This makes echocardiograms VERY hard.  Ultrasounds don't like bone.  Looking through bone (his spine and ribs) to a teeny tiny heart doesn't reveal much but a very bleary version of what might be there.  I laid on that darn table forever while they pushed and had me roll to one side and tried angle after angle.  While our cardiologist looked, his fellow muttered quiet things to him like, "do you see that?" and "it looks like it is touching" and "there might be two there."  Not knowing what they were seeing was a little unnerving... would it be good news, bad news, the same news?  I prayed as I laid there, as I have been praying... for good news and for God to heal our baby's heart.  Last visit we weren't given much hope of change, medically speaking.  Defects like this typically continue to develop proportionally - so basically the defect would stay the same and we shouldn't hope or expect it to get much better or worse.  All this ran through my head while I waited for the echo to be done.  Finally Dr. Parra said, "Okay, well, we have put you through enough."  We headed to his office.  Chris and I had list of questions for him which he patiently answered and then we got down to what he had seen.  Even with a lousy view, he said that it appeared that the hole between the lower two chambers of Tyson's heart was much smaller than last time and maybe not there at all.  It also appeared that the one common valve MIGHT be divided or at least partially divided.  This would change his diagnosis from a complete AVSD to a partial AVSD!  In my book that is a straight up miracle - Thank you Lord.  If what Dr. Parra thinks he saw is correct, our CoArc repair after birth just got a lot easier.  If what Dr. Parra thinks he saw is correct, our second surgery might be at 2 or 3 years old instead of 2 o 3 months old!  Miraculous I tell you.  Of course, he tells us again and again, until Ty is here and they can do an echo directly on his chest none of this will be certain, but we are filled with hope and belief that God can heal our sweet baby!  

Dr. Parra told us that if the Coarc repair goes well and he ends up only having a partial AVSD it is entirely possible that Ty will have little to no limitations on life.  What?  Yes, he might even be able to be an athlete... if he wants to be one.  

We will now have weekly visits to our team at Vanderbilt and visit the 100 Oaks office every other week.  In addition, medical bills from all these tests and imaging appointments are starting the roll in and Chris has used all of his sick days up.  For this we also pray.  We know that God is providing and will continue to provide for our needs.  Thank you so much to those of you who have lifted and continue to lift us up in prayer.  Please continue to pray for healing for Ty and provisions for our family.  Thank you also to those who have felt led to give.  We are overcome with gratitude at the generosity that has already been shown to us.  God is using you, all of us really, in powerful ways.

Thursday, February 5, 2015

Cake in the Shower for Big Bro

When we found out we were expecting, I certainly didn't expect a baby shower because this isn't our first baby.  I was so surprised and excited when my amazing sister-in-law called to say that she felt like we needed to be showered, especially with everything going on with Ty's health!  So this past Sunday afternoon we headed to Chattanooga for a fun afternoon at Sarah's house!

This is me and my lovely sister-in-law.  I assure you, she is the hostess with the mostest!  Sister knows how to throw a shower!  Cutest decorations, cake, delicious food, and fun!

This was Ava Grace's first baby shower experience.  On the way there, Mom and I were explaining what a baby shower was.  Ava Grace, more than a little confused, asked, "So, we are going to eat cake IN the shower?"  It was too funny.  She caught on pretty quick that "shower" was a lot like "party" and that worked for her!  The best part for both of my sweet girls was undoubtedly getting to play with their two best cousins who happen to correspond, more or less, in age!  The littles were wound up and rip-roaring wild and the bigs enjoyed a sleep over the night before the shower and a lot of fun play time!  We even got to play with Brady, my girls' cousin-in-law... he's such a little charmer and right there in age between Kenslee and Ava Grace!

I didn't take many pictures and as I sit here to blog realize I have no pictures of the cake, food, cousins, guests... just lots of me and gifts! I guess I was just having too good of a time to be behind a camera!  I'm so thankful my mom was able to take the pictures that she did with my camera and I know my sister-in-law took several that she will share later, thank goodness.

It was a wonderful shower.  We are so excited about each tiny little outfit, the baby gear and necessities that we were given, and we were down right blown away at the more than $400 in gas cards (above) that everyone pooled together to help us when we are back and forth to Vanderbilt so much!  What a blessing.  The best of the shower, however, was most certainly getting to spend time with family and friends that I do not get to see often enough.  I'm so grateful that each of you took time out of your busy schedule to come and to so generously shower us with things for baby Ty.  You'll never know how special that was!

On a bittersweet note, that was my last trip back home until after Ty is here!  So all you family and friends that I already miss better be thinking about a trip to Nashville to see us!  I have clearance to take Ava Grace to Cincinnati for one more laser surgery on her birthmark coming up and after that I am no longer allowed to travel.  My door is always open though - so come on up y'all!