Team Graycen

07/16/2025

But God…
Then (2020) and Now (2025)

Graycen’s 2nd Open Heart Surgery Heartiversary is today! 5 years ago he had his Glenn Procedure! The surgery was a success and we started recovery and the “grow” process to get him to his “big” surgery (which we did!) While we have always encouraged and challenged him to push himself to do whatever he sets out to do, there have been some limitations or restrictions his Doctor has put in place… for example… no contact sports. Which we were fine with lol But thinking that his heart is setting him back in any way is hard to navigate and process when you just want to give him the world and let him do whatever he wants. So we gladly follow Doctors orders…

Well, there have been some adjustments…

We met with his Cardiologist last week. He is doing very well. His body is still accepting his valve and showing no signs of rejection or infection. His oxygen saturations are normal. The valve his surgeon placed is the size of what an adult could use. Which means as long as his body does not reject the valve he can continue into adulthood with no need for replacement anytime soon, if at all! His heart function is good and still no signs of medical intervention or pacemaker talk at this time!

And the big adjustment…

All limitations and restrictions have been lifted! 🥹😱Now this doesn’t mean mom and dad are jumping into things full force (like contact sports 🥴🤪) but it does mean it’s open for discussion now and that his heart is not limiting him! 👏🏼BUT GOD👏🏼
His biggest factor now is that if he has rhythm changes or issues certain limitations/ restrictions could be put back in place but he is cleared for now! So we continue to go with the flow and what his heart decides!

His journey continues and God’s goodness never changes. ♥️💙🫀

06/27/2025

We landed back in Texas earlier this week!! It was a long drive but worth it!
Graycen has his first Cardiology check-up with our favorite Doc in July!! Until then we are getting settled in and have already gotten to see a few of our favorite people! Looking forward to catching up with everyone! Already missing our Washington Peeps! And the Washington Weather! But so glad to be back in Texas! We will update after his appointment!

06/12/2025

But God… ☺️

Graycen had his Pre-K celebration this afternoon and I honestly can’t help but chuckle.
Not in a haha way but in a “Yep God said he would take care of him and that he did, i knew i shouldn’t doubt”

You see, letting Graycen go to school this year was something he needed but something I struggled with. I had been his primary caregiver since birth and he was often not out of my sight for any length of time if I could help it.

So letting him go ALL day to Pre-k was almost more than I could handle. Not that people aren’t capable of taking care of him. But it’s just a new thing and I didn’t know how to handle it.

So we met with his school, the nurse and his teachers. I laid everything out on the table and told them the what ifs. I asked questions about the emergency response team and asked where the nearest AED was to his classroom. We showed them how to scan his medical ID bracelet and explained that his heart was located on the right side of his body. We talked about his scar and that sometimes he’s self conscious about it. We explained how he can get tired and could potentially get winded and turn “blue” if his oxygen was dipping.

The first day of school I was scared. He had been doing so good since his last surgery but I wouldn’t have eyes on him all the time and it was an awful feeling. But he went and I let him.
We’ve both grown this year and I couldn’t be more proud of him or thankful for his Teachers.

All this to say… Graycen got the All-Star Athlete award! The kiddo who has had 3 open heart surgeries before the age of 4. The kiddo who we told may never be in sports and who certainly is not allowed to play any contact sports. The kiddo who just two years ago was on fulltime oxygen and could only walk a few feet before having to sit down.
He’s been running laps and thriving.

God is so good. I’ve had moments through is journey of being angry and upset with all he has dealt with. I’ve been worried about his limitations and struggles he would have. But God’s promises have proven true over and over again.

Congratulations Graycen! Way to go buddy! So so proud of you! 😘 Here’s to Kindergarten!

06/05/2025

Congenital Heart Defects (CHD) don’t just affect the diagnosed child, they impact the entire family. And siblings often carry a quiet weight that’s hard to name.

💔 The Silent Strength of Siblings 💔

While the world focuses on the child with the heart defect…
there’s another story unfolding quietly in the background: the siblings.

The brothers and sisters who wait at home while mom and dad live at the hospital.
Who celebrate birthdays on FaceTime.
Who whisper prayers during surgeries.
Who carry big feelings in small hearts, worry, fear, confusion… sometimes even guilt.

They miss their parents.
They miss their sibling.
They miss normal.

Congenital Heart Defects (CHD) don’t just affect the diagnosed child, they impact the entire family. And siblings often carry a quiet weight that’s hard to name.

🧠 What Siblings of CHD Warriors May Feel:
• Anxiety about their sibling’s survival
• Guilt for being healthy
• Resentment for lack of attention
• Confusion from frequent separations
• Pressure to “be strong” or not complain
• Loneliness or emotional withdrawal

❤️ What Parents & Caregivers Can Do:
• Keep communication open: Age-appropriate honesty builds trust. Let them ask questions and name their feelings.
• Carve out one-on-one time: Even 10 minutes of undivided attention can ease emotional isolation.
• Involve them: Let them draw pictures for their sibling, help pack hospital bags, or FaceTime during rounds.
• Reassure without dismissing: “It’s okay to feel scared. I feel that too sometimes. But we’re doing this together.”
• Encourage expression: Art, journaling, or play therapy can help them process big emotions.
• Create predictability: Keep routines stable at home when possible. Consistency brings comfort.
• Celebrate their resilience: Remind them they’re not forgotten, they’re heroes too.

To the parents balancing it all,
To the siblings waiting quietly in the wings,
To the caregivers holding everyone together,

You’re doing the best you can in the hardest of circumstances. And that’s more than enough. 💗

05/15/2025

2 years ago Graycen had his 3rd open heart surgery!
His Bi-ventricular repair was the big one we had been waiting on him to have.
It was the chance to give him the best quality at life and it was absolutely terrifying to think about. It was the harder of two surgery options. It was more extensive and the risk of complications was higher but on the opposite side, after recovery, his ability to function as a “normal” child was greater if the surgery was a success Doctors told us that they were very confident they could do the surgery with success but that ultimately it was our decision as Graycen’s parents. Decisions like these are hard, even if you feel like you are making the right one having the weight of that decision is nothing no parent should have to choose. But we had to so we did. We knew this is what Graycen needed and believed in his Team and more importantly God.
2 years later and Graycen is absolutely thriving.
God is so good. Just look at this rosy cheeks 😍

Happy Heartiversary Sweet Boy! I’m so thankful for Gods goodness! And so thankful you are ours!

05/12/2025

We wanted to give a life update:

Texas, we are coming home!

Oh Washington. We came for a time and fell in love with the area and people! I’m thankful for God giving us the opportunity for adventure. Although we didn’t know how long we would be here (Washington was never necessarily the end goal), we weren’t sure where life would take us, where we would eventually end up or if we would ever call Texas home again was up in the air at times. And, honestly, I don’t know that Texas was back on our radar until it just was. Soooo, we are homebound this Summer! We will miss our friends in Washington but also looking forward to being back home!

We will always be thankful for those that supported us here! Words will never be able to express what yall mean to us!

This of course will make Graycen’s care easier with a little less travel! Now our travels will be more for fun than medical need!

Also, Graycen got glasses! How cute is he?!? 😘

04/15/2025

Graycen met with Cardiology yesterday! These appointments can be rough. He knows what’s coming. And even though he’s been through much more than a routine check it’s never fun for him. So before his appointment we grabbed Chick-Fil-A, and of course he got to eat the ice cream first!
So the worst part of the appointments is the testing beforehand. He hates Echos but the EKG even more. With that being said we worked through his fears yesterday and I was able to sneak a smile. Oh the faces ive made to try and get a grin lol So so thankful for the staff who is patient with him whike we work to calm him down. We are still learning to navigate through his Medical PTSD and what can help him best.
With that being said… everything is doing good! He has had a few very low heart rates at home so we did have him on a 3 day monitor. Results came back last week and while the highs and lows have a big range they are (for the most part) “normal” for him and there is no need for intervention still at this time.
God is good!

❤️💙🫀

02/14/2025

Happy Valentines from our Favorite Warrior!

02/01/2025

It’s Heart Month! ♥️💙🫀

Graycen was born with four different “conditions” with his heart. Dextrocardia, pulmonary Atresia, VSD and Double Outlet Right Ventricle. As the month progresses we will talk more about them! Each one with its own set of challenges. He’s had 3 open heart surgeries and countless other procedures. His little body has been through so much and he is such a Warrior. We hope to bring awareness and knowledge to CHD and shine light on our amazing heart warriors!

Did you know:
- CHDs are the most common birth defects. CHDs occur in almost 1% of births.
- An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.
- Nearly 40,000 infants in the U.S. are born each year with CHDs.
- CHDs are as common as autism and about twenty-five times more common than cystic fibrosis.
- Approximately two to three million individuals are thought to be living in the United States with CHDs. Because there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
- Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that the number of adults living with CHDs is at least equal to, if not greater than, the number of children living with CHDs.

01/15/2025

Yesterday marked 4 years since Graycen’s first open heart surgery. Oh how far he has come 🤗 So so proud of him!

01/07/2025

🎉🥳🎈🎁🎂
5 whole years!!!
Happy Birthday to our Favorite Warrior!!!
So so thankful for Gods favor and blessing on his life. And that he chose us to raise Graycen!
♥️💙🫀

12/28/2024

But God… 🥹
5 years ago…I remember being excited and scared for his arrival. So much uncertainty with his birth. He was safe as long as he was in me and my body did the work for him. But once he was born there was no knowing what we would truly face….
Today… we are about a week and a half from him turning 5 🥹😭 We were sitting on the couch playing Red Light Green Light and I couldn’t help but be in awe of Gods goodness. “Take It All Back” by Tauren Wells was playing and Graycen was just belting the song out ❤️♥️ There have been moments in his journey where I questioned God. Fear crept in and the uncertainty was overwhelming. But God and his goodness have always been with us. And today in the simplicity of a card game God once again showed me He’s got him♥️
❤️💙🫀

“You can't speak your lies over my family, no
You can't break the promises that are standing, no
Ain't gotta flex to put you back in your place now
One name is all I gotta say, Jesus
I'm calling the angels down
I'm storming the gates of hell
Tell the devil he don't own my soul
I'm taking back what the enemy stole”