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!
Please join us for the Nashville CHD walk! It is a FREE event! We want Ty to have a HUGE team of all of our family and friends! This is a fun, family-friendly 1 mile walk! Ty will be there with his wagon!
Event Information When: Saturday, June 4, 2016 Where: Edwin Warner Park, 50 Vaughn Rd. , Nashville TN 37221 Time: Registration begins at 9:00 AM | Walk kicks off at 10:00 AM What: Offering a family friendly 1 mile route!
CLICK HERE to join Team Tyson! If you are interested in contributing, you can also order a Team Tyson t-shirt for $15 ($6 of which goes to the walk fundraiser). To order a shirt, contact email@example.com.
If it doesn’t mean anything to you yet, then allow me to
share with you what it means to me and how that came to be. I hope that through sharing, CHD will mean
something to you after all. I pray that
it is only through me and my precious boy that CHD means something to you and
not through personal experience.
A little over a year ago, CHD (congenital heart disease or
congenital heart defect – they are defined the same), meant nothing to me. If I had heard it, I could have put two and
two together. Congenital – present at
birth, heart disease or defect – something wrong with the heart. Got it.
Someone born with something wrong with their heart. I had no idea that “someone” would have a
precious face and a name I would know well.
That “someone” would be my son.
Little did I know that the “something” would also have names and
intricate details beautiful and terrifying in their own imperfection. I was completely unaware that CHD would shape
me and my entire family and change the way we viewed not just our newest family
member, but everything about our lives.
About one in one-hundred babies are born in this country
with CHD each year. It is the number one
birth defect in the United States. CHDs
are the most common cause of infant death due to birth defect in our country
and more children lose their lives to CHD than all forms of childhood cancer
Before I learned these facts, back when I knew nothing about
CHDs, I was like most other expectant moms.
I was excited. I was bonding with
my baby, even thought I didn’t even know he was a he. Even though he was teeny tiny and looked more
like a tadpole than a baby, I loved him.
I prayed for his health and dreamed of his sweet face. I wondered if he would be a boy or a girl,
what he would look like, and what his sweet cry would sound like.
At 20 weeks, I had a routine “anatomy” scan. Being that this wasn’t my first pregnancy, I
knew what to expect. The ultrasound went
well, but I did notice the large amount of time spent on our little guy’s
chest. They couldn’t get some pictures,
so we scheduled another ultrasound to see if they could get what they
needed. A series of ultrasounds and
visits followed, the first of these was our second anatomy scan and when I
knew, in my heart, that something was wrong with our baby’s heart. At the final of these, we were told with no
frills that our baby’s heart had not developed properly. Two holes, parts too small, other parts too
large. It sounded like an overwhelming
mess. Our hearts were broken.
I went from dreaming about what our baby would look like, to
“seeing” and knowing well what every inch of him looked like. Weeks followed with doctor appointment after doctor
appointment. Ultrasound and
echocardiograms were routine. I saw my
sweet baby in 3D more times than I can count, but what his face looked like
mattered less and what his heart looked like mattered more. Today, I know exactly what Ty’s heart looks
like inside and out. I have poured over images
of his heart from that early 20 week ultrasound until, well, now – we still
look at it at regular visits to our cardiologist. I have “watched” on echo the blood flow
through his heart, the direction of flow.
I have examined the four chambers. I have stared for a great number of hours at
screens showing my sweet boy’s heart. I
have watched it on monitors. I have
watched it change as he has gone through surgeries and been treated with
different medications. I have seen it
enlarge, I have seen it work way too hard, and I have seen in stretch and
adjust to new plumbing to allow the sides of his heart to become more
Tonight I held my sleeping 9 month old baby and placed my
hand over a scar that is fading and a raised bump on his sternum and I felt his
slow steady breathing and beating heart.
It was a far cry from the rapid borderline hyperventilation of his past
and his heart had a strong, steady, and reliable beat.
Ty’s heart will always be flawed and show the signs of being
taken apart and stitched back together twice.
His heart has been rebuilt into a working muscle that can support life. He will always be a heart warrior. A fighter.
He is at increased risk for a handful of issues and will see a
cardiologist regularly for his whole life.
He may always be on medication – he started IV medications moments after
birth and has never been free from taking medication of some sort. Leaky valves, turbulent flow, and regurgitation
will always be part of his heart’s vocabulary.
I’ll never be able to say he has a healthy heart.
I can, however, say, he has a beautiful heart that was
pieced together through two flawless surgeries.
I can say that he has handsome scars – probably 15 or so, from his
months in the hospital. Two open heart
surgeries, a heart cath, chest tubes, pacing wires, and countless pic lines
have scared his chest, abdomen, ankles, and thighs – some very small, and one
very large scar. He and his heart will
always be a work of art, seen and loved by many.
If I had to name one thing that has surprised me more than
anything about CHD, it is that I can’t imagine my life without it. As strange as it sounds (and it was journey
to get to this point), I am thankful for CHD.
In a perfect world, Ty would have been born with a flawless heart. In a perfect world, CHD would not exist. This would be wonderful, but this world is
far from perfect and CHD is a reality that many families face. I am thankful because the Lord chose Chris
and I to parent a handsome heart warrior.
I am thankful because CHD has changed us for the better. I am thankful because CHD has brought wonderful
people into our lives. I am thankful,
because, although Ty’s heart isn’t flawless, it was perfectly designed by God
and given to us to love. I am thankful
because with the help of God and His blessing of an incredible medical team, Ty
is winning his fight against CHD.
I don’t love CHD. I
am just thankful.
So, what does Congenital Heart Disease mean to me? It means Tyson. It means beautiful hands of talented surgeons. It means the warm smile of our cardiologist
and everyone on the 5th floor at VCH. It means teamwork. It means family. It means warriors and heros and precious
angles that get called home before us.
It means fight. It means
survive. It means love.
February is Heart Disease Awareness month. I plan to do several posts through February,
so stay tuned and get your red ready to wear!
Also, please mark your calendar for the CHD walk in
Nashville (details below)! It is a FREE
event. Please stay tuned for details on
how to join our team and come walk with us!
About the Congenital Heart Walk
Name:2016 Nashville Congenital
Heart Walk When:Saturday, June 4, 2016 Where:Edwin Warner Park, 50 Vaughn Rd. , Nashville
TN 37221 Time: Registration begins at 9:00 AM
Walk kicks off at 10:00 AM What: Offering a family friendly 1 mile route!
Finding time to post always proves challenging, so I'm taking some times this Saturday morning to update everyone on the latest goings on the Hooper household!
This guy is 7 months old - already!
Ty enjoyed his first trip to the beach this month. He wasn't crazy about it, but he thought the waves were funny as long as he didn't have to touch the water.
Ty had two MAJOR accomplishments this month along with many other smaller accomplishments. The first is that we have KICKED the feeding tube! We have only had to drop a tube once to catch up on fluids and, although some days are better than others, he is meeting or exceeding his minimum daily calories most days! He is up to 17 pounds and if his growth stays on track at his next weigh in, I think we'll be officially free of the tube (hopefully forever)!
Ty's other BIG accomplishment is sitting up! He can't get himself into a sitting position yet, we are working on that in therapy, but he is doing GREAT at staying up and playing once you put him in a sitting position! He loves being up where he can see everything and play with his toys!
He LOVES bath time!
This is what he does every single time I take him out of the bath tub! So sad.
Ava Grace makes him laugh every day! She loves him... a lot! She wants to hold him, "help" him, and TICKLE him! He is the most ticklish baby I have ever met!
He loves his Lily too! True to her personality, she is much more of a practical helper. She'll hold him and talk to him sometimes, but for the most part she does her thing and lets him do his. She is great to keep an eye out for him, though, and help him get his paci or protect him from Ava Grace when necessary, lol.
Ty has started eating baby food and is getting better and better at it! We have monthly feeding therapy to keep track of how he is doing. He likes sweet potatoes the best. This week we experimented with a graham cracker and he really liked it!
This big sis has been growing too! She loves school this year and loves her teacher.
Her independent streak continues to grow! She likes to dress herself now and that includes picking out her clothes, shoes, AND accessories. She is really into shoes and clothes. She says things like, "I am so fashion" and "I am stylish. I am the fashionist girl in the whole city."
Ava Grace is big time into crafting. She wants to cut, glue, and paint everything. She loves helping me cook and continues to be such a good eater! She loves vegetables - We keep a veggie tray in the fridge and it's her go-to snack. She also really likes just about any fruit, all meat, and will eat most anything I cook. She even likes slightly spicy things - which totally fits her personality! She has a sweet tooth as well, though not as big as her big sisters, and a passion for Popsicle!
She dresses up like a princess on a regular basis and often asks to go out dressed up that way (sometimes this turns into a battle). She was thrilled when we went to see Cinderella at TPAC and I allowed her to wear her princess dress out!
She resists naps with a passion, but if you can get her still she will crash and when she crashes - she is OUT.
Ava Grace LOVES her big sister and loves to play with her big sister. Their play time is often cut short by a melt down because Lily isn't doing as Ava Grace instructs her to do, but it never fails, they are back at it in no time. Lily is infinitely patient with Ava Grace and just the best big sister ever.
Lily is learning to play the clarinet, following in the footsteps of her Aunt Sarah, Aunt Gina, Aunt Jodie, and Great Aunt Jan! In fact, her Aunt Jan gave her the clarinet that three generations of Hoopers learned to play on and gave her her very first lesson.
Lily still loves playing volleyball and has gotten really good! She can serve overhand like a pro now and dives for balls like a champ!
Lily was recently invited to join the Junior Beta Club as well! We are so proud of the young lady that she is becoming!
Lily loves watching the food network and is an aspiring chef! We have recently turned her loose in the kitchen and she is learning to be more independent in her cooking!
Lily is still sweet, very innocent, and we are soaking up the remnants of her little-girl days before she heads to middle school next year.
That pretty much sums up the kiddos!
Please continue to pray for my mom. She is officially done with Chemo!!!! She will meet with her surgeon this week and most likely have surgery within the next two weeks. Her tumor is less than half a cm now! We praise God for the miracle he is working and pray for complete healing! We want the cancer gone and to stay gone! After surgery she'll have several weeks of intense daily radiation. God provided her with the days for medical leave until her retirement day in the spring, so thankfully she can rest and focus on recovery! Please keep her close in prayer for healing and recovery! Also please pray for my Dad as he cares for her!
Mark your calendars! Breakfast with Santa will be coming Dec 12 and will benefit our fellow heart family's organization, Project Heart! Money raised goes to CHD research! Check them out on Facebook under Project Heart and order a Project Heart tshirt! (Ty and I love ours, but I don't have a picture of us wearing them yet - coming soon!)
I think that about sums it up! Hope everyone has a happy halloween and a great weekend!
I heard a sermon a few months ago (I was very pregnant with Ty) that stuck with me. The preacher talked about people that required extra grace. He reminded us that God showed us unconditional love, forgiveness, and beautiful beautiful grace. He spoke of people who needed a little extra grace. The ones you want to push away or don't want to be seen with that, perhaps, need more grace instead of less. Those that need our attention, our time, our love. His words hit home for me. As an educator, I first thought of students. The really really annoying ones. The ones that were way immature, or whined too much, or were always causing drama. The student that wanted to stand at my desk and talk on and on and on... the random tap on the shoulder kid with important comments like, "Do you like cats? I like cats. I have 7 cats and one is about to have kittens..." cats. cats. cats. cats. Crazy cat lady - kid style. You get the idea. I sunk a little in the pew as I realized I have too often cut those kiddos off... shushed them... prompted them to go get busy or to go play or to go talk to friends. I have a heart for teaching and a heart for kids, but isn't there always that one that just kind of drives you crazy or gets under your skin. The stinky kid. The needy kid. I thought about all those, kids and adults, that I have judged... people who dressed different or acted different or seemed to come from a different world than mine... or at least a different class. This is real folks. Real ugly.
I am a God fearing woman who tries to do what is right. I try not to judge and to be kind to all those I encounter. Do I love, though? God is love and God is IN me, so shouldn't I be spilling that love out on to EVERYONE I meet? Not just those that are like me or from a similar background.
The point of the message I heard was that the very people we try to avoid are the ones who likely need extra grace - more love - those who deserve eye contact, undivided attention, and some genuine listening and loving.
Jesus loved everyone. Jesus dined with sinners. He is our example. He shows grace to me. Who am I to decide not to show grace to others. God's grace is love in action and if we are to be the hands and feet of Jesus, we must be love in action as well.
Color me convicted.
A dear friend gave me a Devotional recently. Out of the Spin Cycle, by Jen Hatmaker. Although I received it a couple of weeks ago, today I sat down to read for the first time. I started with the Prologue, which I would like to share here. It make me laugh and certainly struck home on several levels. I was most struck, I think, with her words about young mothers and what they need most is not to be judged, but to be given love, help, and advice. I love that she says our common ground is showing our children Jesus. And that Jesus is at Whole Foods and Wendy's. This reminded me that in my very chaotic, laundry-filled, messy-house, sleep-deprived state, I could use a lot of grace and certainly don't need judgement. It reminded me of all the other Moms out there probably need the same. Then I got to thinking it's not just moms... we all need a little extra grace.
Read for yourself and see what you think.
Prologue A (Fairly Lame) Ode to Mothers
An ode to the marvelous woman called “Mother” Though not one of us is exactly like another. From the second we’re born to the minute we die Our preferences are as limitless as stars in the sky.
We might have been perfectly gracious before But childbirth entered us in the Mommy War. Rather than letting everyone else be We criticize parenting that isn’t exactly like . . . me.
So once and for all let me put this to rest None of us owns the title of “best.” Natural childbirth does not make you a hippy Epidurals are not just for women who want to feel trippy.
In a bathtub with a doula or in a hospital bed We all got a baby with limbs and a head. Nursing is great if nothing goes wrong But some nipples turn inward and refuse to play along.
This is a choice for each mom–it’s her route So it’s just A + B and everyone else can C their way out. Schedules and timers do not make you cruel Feeding on demand does not make you a fool.
In the nursery with a monitor or in the family bed Every chick gets to pick where her baby lays his head. If I see one more mom roll her eyes at “organic . . .” “Partially hydrogenated” throws some of us into panic.
But neither judge Sonic burgers and fries Some of us just want to enjoy food before we die. Preschool, home school, public, or Montessori Listen, my friends, and I’ll tell you a story:
Two moms differed on favorite school trends Their kids turned out pretty much the same. The end. If a girl gets the title of “mom” accidentally The worst thing we can do is treat her judgmentally.
How about some love, some help, some advice? She needs our love and we shouldn’t think twice. Discipline through various methods will prevail Look, we’re all just trying to keep our kids out of jail.
These things are just preferences, not right or wrong What matters more is teaching our kids to get along– To love and to share, to speak gently and kind, To obey so that mom won’t go out of her mind.
Showing them Jesus is our common ground Teaching them how he can always be found. He’s present in public school and Waldorf (so trendy) He’s over at Whole Foods but also at Wendy’s.
Jesus never cared about these sorts of things It’s our hearts that he wants and the worship we bring. It’s time for us moms to declare a truce Regardless if we buy Capri Sun or 100 percent juice.
My way is not your way, and your way isn’t mine But both of our kids will turn out just fine. Rather than judging and looking down our noses Let’s enjoy the common ground motherhood poses.
As believers, we all love the same good Lord We all have children who tell us “I’m bored.” We all need more sleep than these tiny five hours Most of us struggle to find time for a shower.
We haven’t been to the bathroom alone in an age Our mothers have all told us, “Relax, this is just a stage.” We all love our babies so much we could die We’d take a bullet for each one without batting an eye.
Though we are different, we’re in the same tribe Motherhood requires a similar vibe– Love and affection, sacrifice and grace Laughter, which keeps the whole mechanism in place.
Though different, by the grace of God, I suspect: ALL our children will rise up and call us … collect.
She looks well to how things go in her household. … Her children rise up and call her blessed. Proverbs 31:27—28 AMP
Ty is playing a major game of catch up and he's winning!
This little guy turned 5 months old on the 24th and is growing in so many ways. He's added squeaking and squealing to his vocabulary. He has added a tooth to his mouth. He has even added two new talents - rolling from front to back and back to front - which he learned in about a weeks time! Way to use that big noggin' son!
We are still sporting the feeding tube, but we are making progress! Ty has discovered "the tube" and it's location so it has become a favorite toy. I often catch him pulling it, holding it, chewing on the end of it, or removing it all together. In fact, this morning when we got home from taking Ava Grace to Wee school, I discovered that after I started his feed, Ty had removed his tube and was feeding his car seat all the way home. Fun times! We have, however, made great strides. Ty will take an average 40-45ml when offered the bottle (when he is willing to take it at all). This is up from the 5-15 we had been stuck on for so long. We have also started some baby food at the recommendation of the feeding therapist. Ty doesn't complain, he just lets me stick it in his mouth and promptly spits it out. It doesn't matter how far I get it back in there - the kid is a professional spitter outer! But we keep practicing... we'll get there eventually. We are just praying we get there before they make him have a g-tube (directly into the stomach instead of through the nose) put in. Worse things could happen, but we'd like to avoid another surgery and skip that step if possible.
The coolest thing we have seen in recent days is the healing process on the inside showing proof on the outside. Ty's oxygen saturation varies throughout the day ranging from 100% to 90%. From the time he came home for good until about 2 or 3 weeks ago, his sats would drop every evening when he fell asleep. From about 6:00-10:00 (and I'm assuming any time he deep sleeps, although we don't put the monitor on him during the day to know for sure), his monitor would go off every 15 or 20 minutes as his sats would drop to 88, or 87 and then return to 90 or 91 where it would sit most of the night. Well, about 3 weeks ago, his monitor started going off less and less. In fact, this week it hasn't been going off at all! His sats now stay above 96 almost always - usually floating around 98-99! It is such a great feeling and we are praising God because we know this is proof that Ty is growing into his new pluming and God is healing him from the inside out!
In other news...
A fellow heart Momma and her hubby have started a non-profit organization called Project Heart! They are doing exactly what Chris and I have pledged to each other to do as well - spreading awareness and raising funds to further research and support families effected by congenital heart disease. Did you know that more children die from CHD each year than all forms of childhood cancer combined? CHD awareness and ministering to CHD families is a big cause and needs support in all forms! Please take a moment to check out the Project Heart website and find them on facebook to "like" their page! Click here to be directed to their website. They have some really cute shirts for sale too!
I find it harder when home (as opposed to the hospital) to sit down in front of the computer to update. With all these cute kiddos running around and the usual home-making stuff on the to do list, time is precious and spare time is hard to com by. However, I know that several of you out there don't follow facebook, so I am sure you are wondering what the latest is on Ty. This week he graduated to the feeding seat so that he can now sit at the dinner table with us!
It wasn't as exciting as he thought it would be... either that or all the dinner activity and conversation was exhausting. He is turning into a very social baby and wants to be around us. He is still doesn't care to be held a lot - part of his disposition and his history of starting life in an isolette not being able to be held, I'm sure. He has been in his swing near the table while we eat dinner every night, but that wasn't close enough to the action and the last few nights he was "complaining" about missing out. So we got the feeding seat set up on one of the dining room chairs and now he is happy to be included in dinner conversation. Ava Grace, who gets to sit beside him, is the most excited about the new development.
Yesterday Ty had his 4 month well visit. He checked out just fine and is growing BIG TIME. He is weighing in at over 14 pounds and has moved up to 19% and 21% on the charts for height and weight. We are going to see a craniofacial guy because his fontanel is a bit on the small side, but it shouldn't be a problem as long as it stays open to one year of age. We are getting it checked out just to be certain that all we need to do with watch it.
Ty also saw his geneticist a few days ago. That visit went great as well. They were very pleased with his appearance and he isn't showing any outward signs of problems from his chromosomal abnormality. There is such little research out there on males that have 45x/46xy with a dicentric Y, but we believe that Ty will likely have little or no effect from his genetic mutation. He will possibly be sterile, but that's not a certainty. His heart was likely due to his genetics, but we are already dealing with that. They still believe that although so rare on paper, this may be one of the most common genetic mutations out there - it just has such little effect that most people probably assume they just have reproductive issues for an unknown reason. Without testing for other issues, in this case genetic testing because of his heart, they believe most people who have it just never discover it. We are going to an endocrinologist and a urologist to check him out thoroughly on the inside and make sure everything is as it should be. With all the testing and scans he has already had in his little life, we don't expect surprises, but want to be thorough. He will be followed by all of these doctors as he grows to make sure we stay on top of any arising problems.
For those of you keeping track, Ty is now being followed by 7 different types of doctors! He has a cardiologist, cardiothoracic surgeon, pulmonologist, urologist, endocrinologist, craniofacial, and general pediatrician. And he starts feeding therapy tomorrow. Oh. My. Word. My kid is well looked after. Thankfully the little guy knows no different and just rolls with it.
Enough about doctors...
At home we have been soaking up the love. The last four months have been a blur for all of us and it is hard to believe that summer break is over in a week! We are thankful that we got ANY days at home as a family, but it's hard not to wish we could enjoy a few more before work starts again. We have been making the best of our time playing the days away. We still live in a bubble for Ty's protection for the most part, but we have begun to venture out a little and that has been fun too.
We have found lots of fun things to do at home though. Thanks to Pinterest, we found this new activity that is a favorite of Ava Grace's and mine too! Freeze little dollar store dinosaurs (or princesses, or any other kind of little plastic toys) in layers of a block of ice. Then equip your little one with "tools" (we used a grapefruit spoon, salt, and syringes) to rescue the toys!
This was new and exciting for Ava Grace and afforded this mommy a full 45 minutes of time! That's right moms, she played on her own for 45 minutes straight! Mom win. You're welcome.
We have spent quite a bit of time on our front porch. We love our porch swing and have watched a few thunderstorms blow in, a few sunsets, and just enjoyed good swinging and conversation out there.
We have also ventured to he pool a few times. You know I am a water bug and just couldn't stand the thought of the kids not swimming this summer. We mostly go to the indoor pool at the civic center so that I don't have to have Ty out in the heat and so I don't have to sunscreen Ava Grace's sensitive skin. We did, however, catch one cloudy and sprinkly day that was perfect for a dip in the outdoor pool. It was cool enough and there was enough thick cloud cover to not worry about heat or sun screen and we took our nephew John Harris with us! So fun.
(Ava Grace had pringles for the first time in her life! lol. Quack!)
Overall, we have had several days of summer fun. We count each and every day a blessing. I look at Ty several times a day and thank God that he is here with us. I can't put into words fearing for your child's life, but I can tell you it gives you a deep appreciation for every second you get to spend with them.
My brother and sister-in-law are facing some big decisions right now and need lots of prayer healing and good health. God has already answered prayers and worked miracles in front of our very eyes, so we praise Him and ask for continued prayers from you.
Last, but not least, I have to share a couple of Pinterest recipes I tried and we loved! Click on the pictures below for the recipes. They are both EASY, QUICK, and DELISH! As in faster and cheaper than actual take-out. The whole family liked it. Another mom win for sure!
Welcome! I am the head chef and home-maker at my address. A former teacher and current after-school program manager and a proud member of the education field (even though I still call myself a "stay-at-home mom"). I'm the member of a pretty wacky and wonderful family and a friend of some really special people. I get the privilege of being mommy to the most spectacular toddler I've ever met and the step-mom of the most kind-hearted and precious 9 year old anyone could ever meet. I'm a coach's wife (he's pretty hot and makes me laugh every day). And, most importantly, I'm a follower of Jesus Christ. This is my little blog. When I have time, I come here to share, write, document, and just to be me.