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, January 27, 2015

A birthday Girl...

One of my biggest fears about what we are facing with Ty is that Ava Grace and Lily's worlds will be turned upside down!  Especially Ava Grace, since she is used to being home with Mommy most every day.  We will make every effort to keep her routine as close to "normal" as we can, but some things will certainly change.. at least for the first few weeks after he is here.  That probably would have been true regardless, but now it is even more so.  

To that end, I thought I would carve out a sliver of time (and blog space) to document our special girl and a few of her special days here lately...

January 11, our "baby" turned THREE!  I can hardly believe it y'all. No one can prepare you for how much faster time goes when you are an adult... and it goes warp speed when you have kiddos!

(With Cousin's Bentlee and Kenslee)

This year at Christmas we got a 3-pack DVD of "winter" movies.  One was Bah Humduck (Daffy Duck Christmas movie), One was Tom and Jerry winter themed episodes, and the last DVD in the pack was Scooby Doo - three episodes that were winter/Christmas themed.  Ava Grace LOVED the Scooby Doo and instantly decided she had to have a Scooby Doo party.  I was surprised, to say the least, BUT, it's her birthday, so Scooby Doo it was!

(Cousins helping her open - Bentlee and John Harris)

We made her cake - a Carrot Cake full of Pecans, this girl loves nuts!  And she helped decorate it by placing the flowers around the sides and sprinkles on top!

(Ava Grace and cousin Silas... up to no good, I'm sure)

It was a wonderful birthday with family.  Ava Grace was beside herself and it was just the kind of low-key, relaxed birthday that Mommy and Daddy needed!  Minimal planning and prep, maximum results.  Special thanks goes to Grandmommy, Mimi, and Aunt Jessica for helping the party happen!!

A few days after her birthday we had an unseasonably warm day!  We just HAD to head to the park to try out her new tricycle that she got for Christmas!  She had been testing it out around the house and we couldn't wait to see how she did on the "open road."

She was a pro!  For parents out there - this is the coolest tricycle ever!  The handle on back is great for pushing when little legs get tired AND for steering, which she is still getting the hang of.  Plus, once it's no longer needed, the handle pops right off!

Who doesn't love a princess!  She is into dressing up now.  Half the time it's pirates and giants and monsters - oh my!  BUT, she still does loves her heels, tiara, and princess dress from time to time! Thank you Anne and Jay for the dress up clothes - big hit! 

Last, but not least - some snow pictures from this weekend.  Nothing excites this sweet girl like some freshly fallen snow.

And, of course, when snow is on the slide and swing set, you have to try it out!

Ava Grace, you have an excitement for life that simply can't be matched!  You have a funky dark side that intrigues us.  Your favorite color is black and you like cars and swords as much as you like dolls and dresses.  You sing EVERYTHING - both songs you know and just singing about whatever you are doing or thinking.  You are NOT a morning person.  You don't want anyone to speak to you for the first 15 minutes you are up.  You just want to sit and zone out for a bit.  You love green peppers, tomatoes, cucumbers, and just about any fruit.  You love meat - sausage links, chicken, and even steak.  You eat breakfast 2 or 3 times each morning, then a reasonable lunch, and usually not much for dinner.  You make us laugh and have a killer sense of humor.  You are crazy wicked smart and you talk way beyond your years.  You love to talk to "baby brudder" in mommy's belly.  You tickle my belly and tell us that it makes him laugh, you sing to him, kiss him, and keep asking if we are sure he is going to come out of my belly!  You are a treat every day and a gift from God that we can't be thankful enough for.  We love you doodlebug!  We can't wait to see what this next year will bring for you!

Monday, January 19, 2015

An introduction to Ty and to CHD

Disclaimer:  I didn't proof read this post.  I am going to go play with my girls instead.  :-)

The Background:

I am firing up the blog again for an unexpected reason.  As most of you know, we are expecting a sweet baby boy.  Our son's name is Tyson Hugh Hooper and he is currently 29 weeks in utero.  Most parents have only seen 2 ultrasounds of there little one at this point, but we are will acquainted with Ty.  At our 20 week anatomy scan the ultrasound tech declared that there were "a couple views of the heart" that she couldn't get.  I was a little concerned because she had spent so much of our time in the ultrasound room looking only at his heart, but this seemed to explain it.  At our follow up appointment a couple weeks later I was hoping for a quick ultrasound and a healthy check up from my OB.  When I hopped up on the table for the ultrasound the tech told me there were just a couple of images she needed of the heart and that it would only take a few minutes.  I asked if my OB would get the scan results right away since I was headed there next.  She assured me that she would fax them right up and so we could review them at my OB appointment.  This put my mind at ease - no waiting to make sure everything checked out.  Unfortunately, that is not exactly how things went down.  After our "quick" ultrasound turned into a near hour long experience in which the tech barely spoke and took picture after pictures and measurement after measurement of our son's heart, my heart sunk.  I just knew.  I knew in my heart that his was not okay.  My fear was confirmed when I arrived at the OBs office and was told that they wanted the MFM to look at my scans before the released the report and I wouldn't know anything for a couple of days.  I was already crumbling, but trying so hard to have faith and keep it together.  The reports came back way faster than expected and that afternoon the OB called to say we needed to come back for an echocardiogram with the MFM because they saw some things they didn't like on my scans.  Still, it was stated that it might be "positional."  We had to wait almost 2 more weeks for this appointment.  At the echo it was confirmed that our baby's heart was a hot mess.  He had 2 holes near the center of his heart, an aorta that was too small, something else that was too big, and a valve that they couldn't tell whether or not it was correct or not.  We were in a daze, but faced with this and told that this type of heart defect is often found in conjunction with Downs Syndrome, we decided to have an amniocentesis.  Our results wouldn't impact our decisions regarding the care of our baby so much, but Chris and I would be able to prepare if we knew ahead of time.  This was just a few days before Christmas, so the wait for the results and the follow up with our team at Vanderbilt were a ways away.  We had to celebrate Christmas and New Years not knowing exactly what our baby's diagnosis was.  On January 2 our MFM called with the amnio results.  No Downs Syndrome, but there was a chromosomal abnormality.  Some Y chromosomes were missing and he was mosaic for this.  We held it together for a while, praying and trying hard to trust God and his plan.  After all, He designed this baby and chose us to be his parents.  Google scared the (insert bad word of choice) out of both of us with worst case scenarios and suddenly the complex heart defect went to the back burner while we poured over studies and information (or lack thereof) about his chromosomal abnormalities.  After a lot (and I mean A LOT) of praying and waiting, last Monday we finally got to meet with most of our medical team at Vanderbilt.  We had a thorough ultrasound, met with an MFM about the findings on the ultrasound, met with a genetic counselor about the chromosomal abnormality, met with a social worker about dealing with all of this and ways to get help if needed, and then finally met with our cardiologist for another echo and an official diagnosis.

The Chromosomes:

Praise Jesus, the chromosomal abnormality does not appear to be life altering for our little guy.  According to our genetic counselor, she said he should look and act like a boy.  (We feared he might be ambiguous.)  She had researched and only found 11 other cases of his specific genetic mutation, some of which had been terminated.  Her evaluation of the situation was, that if we hadn't been poking around his chromosomes for an answer to the heart issue, we never would have known he had a thing different with his genes.  He is, indeed, missing some Y chromosomes from some cells, but the cells that do have Y are mutated and include an extra portion of the male-making instructions.  God is amazing.  In my mind, this makes up for the missing Ys.  Yes, I admit, we have a 3D pictures of our little boy's man parts on the fridge.  :-)  He is, indeed, and boy.  She can't seem to find anything that would indicate any other issues for him other than the possibility of being sterile.  We'll have some more genetic testing done when he is older so that he will be aware that he carries a mutated Y.  He will need to know if he might pass it on to his children or if he can even have children.  In the mean time, however, his funky Y chromosome is on the back burner.  (Chris says he will be an x-man because he has a genetic mutation.... boys, lol.)  The cardiologist says this may have caused his heart condition.  The OB says this may have caused my miscarriage last year, if it was a boy.  Those questions will remain unanswered for me and that is perfectly fine.  

His Precious Heart:

In short, it's a hot mess.

Ty has a complex heart defect.  He has been diagnosed, therefore, with Congenital Heart Disease.

Problem #1 -   Coarctation of the Aorta.  This means his aorta is narrow, so much so that our cardiologist fears that it might be fused shut.  When Tyson is born, he will be immediately given IV medication to buy us a couple of days.  All babies have an extra part in their heart that alters the way blood flows through their heart because they get oxegenated blood from their mothers.  This medicine will keep that from sealing up after birth, like most infants, so that he can be in the outside world for a least a day or so before he has to undergo heart surgery.  They will remove the narrow part of his aorta and sew the two ends together.  Hopefully this will be done through an incision on the side of his chest.  If his echo after birth shows that a larger portion of his aorta is fused, this surgery will become open heart and might require the use of other material to replace the part of his aorta that they have to remove.  Either way, we have been told to expect a lengthy ICU stay after he is born, somewhere in the neighborhood of 4- 6 weeks for this repair.  While they are in there, they will band a portion of his heart to help prefect congestive heart failure from this other defect while we await surgery number 2.

If all goes well, after 4-6 weeks, we will get to bring Ty home for a few weeks (6-8 probably) before we return for surgery number 2.

Problem # 2 - Antrioventricular Septal Defect (AVSD).  Surgery two will address this defect.  They will remove the band that is in place to hopefully delay congestive heart failure and proceed to work on the issues involved with AVSD.  They will patch a hole between the top two chambers of his heart and patch another hole between the bottom two chambers.  Then, they will take his too-large atrioventricular valve and separate it into two valves (it should have done this in early pregnancy, but his stayed as one large one instead of two smaller ones).  This will be the "classic" open heart surgery through the chest and will keep us in the hospital for 3-4 weeks if all goes well.


First and foremost, God is good ALL of the time.  He is with us and with our precious baby boy every step of this journey.  There is purpose to everything and though we might not ever know how, God is using this situation for His glory.

Second, while in utero, our little man is fit as a fiddle!  Because his oxygenated blood comes from me, he is oblivious that he is presenting such health challenges.  He is developing as any 29 week old should and until shortly after birth will not be impacted by his little heart.

Third, we found out early!  From my reading, it would seem this is a huge blessing.  Some people take their babies home and don't find out until weeks or months later that their child has a CHD!  Sometimes even after tragedy strikes.  We are comforted to know that we have a great team at Vanderbilt that know what is wrong and how to fix it.

Last, although our guy will probably never be an Olympic athlete and may have a leaky valve, he should lead a happy, healthy, full length life.  He will always have a cardiologist and follow up visits, but if all goes well, his repairs will grow with him.  If we can get through the first year, we should be good to go.

We Need Your Help (and the help of your friends and family too!):

Because every parent wants to be with their child when they aren't well....

Because we have two other children to care for and to get to and from school and activities...

Because we need to maintain as much "normal" as we can for our girls...

Because we live a pretty good distance from our closest family and several of our friends...

We feel that it is a need for Chris to take FMLA time off while Tyson is in the hospital.  This will result in a major loss of income.  We will also be logging lots of miles back and forth to Nashville.  We have already been incurring income loss and additional medical bills for the many tests and specialists we have already seen.  I will start weekly trips to Nashville next week - to 100 Oaks for OB and Vanderbilt for MFM and Cardiologist visits.  

We need financial help!

We have set a goal to raise $15,000 before Tyson is born so that as we begin to face time off work and medical bills, we can focus on Ty's needs and not worry about how to pay the bills.  There is a paypal donate button at the top of this page.  You can make a donation to our family's needs with any major credit card, bank account, or pay pal.  We will be eternally grateful for each and every donation.  We also ask that you share our story with your family and friends and ask them to donate as well.  This is a heafty goal and we feel awkward raising funds for our own family, but we just don't see any other way.

Last, and most important...
Please pray for Ty and for our family as we go through all of this.  We worry, of course.  We worry about our girls and how this will turn their world upside down.  We worry about Ava Grace even understanding what is going on and why she can't meet her baby brother.  We worry about Ty and the battle he has to face just to survive.  We try to turn all of these worries over to our Lord and trust that His plan and His will are so greater than our own.  Please join us in praying for health, healing, and provision for our needs.

Thank you so much.

We will use this page for updates throughout this journey.  We felt like it would be best to have one place to update everyone.