Grayson’s Growing Heart- HLHS Warrior

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Grayson’s Growing Heart- HLHS Warrior Hi! I’m Grayson. I was born with several serious heart deffects, including HLHS. This is my page so you can follow my journey as you cheer me on!

I will need multiple heart surgeries in my life and will spend a lot of time in and out of the hospital.

♥️
11/04/2026

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My beautiful aunt made the most amazing heartfelt diamond art image and presented it to us today 😭 the time and love tha...
14/03/2026

My beautiful aunt made the most amazing heartfelt diamond art image and presented it to us today 😭 the time and love that went into this….there are no words to express how much this has touched me and how much I’ll cherish this forever. I couldn’t get a picture that did this image justice: it’s perfectly aligned and sparkly and amazing ♥️
We’ve also received a blanket and an amazing light up display from an amazing follower of Grayson’s journey, a pillow from my MIL, a package from my fiancés lovely friends (this package was important….coffee from WA to support my caffeine addiction) and an amazing loving package from our amazing friends/old neighbors with healing salves, tinctures, jams and crystals. When I tell you our community is amazing, I mean it. Being surrounded by family and friends and supportive followers while we navigate the grief of child loss has made this journey incredibly easier.
It’s been a month already since Grayson returned to his Spirit Self. I know he’s always with us, cheering his family on, and so grateful for the love and support we’re receiving. To know that one day I’ll be greeted by him again and it will feel like this never happened….its such a huge comfort. And to know that we can go through something as traumatic as losing a child in the way that we did and come out okay on the other side….thats all due to the people who loved and cheered Grayson on ♥️♥️♥️

Baby ashes are so small. I knew the box would be small, like conceptually I understood it all. But to hold in my hand th...
22/02/2026

Baby ashes are so small.

I knew the box would be small,
like conceptually I understood it all.
But to hold in my hand the tiniest box,
It is quite the paradox
To create life and see it reduced to ash,

to not much bigger than a soda can,
not many can understand
This feeling

I once held all this and more inside my womb,
Felt the kicks, felt life bloom
But now there are no words in the English language
To express the anguish
Of the smallest box.
The heaviest box.

18/02/2026

We just got the call. We pick our baby up on Friday. NOT how I daydreamed about bringing him home but part of me is relieved to have “him” close to me again. I think it’s pretty sad our loved ones come home in cardboard boxes. Surely there are affordable and more honorable ways?

I keep trying to plan a celebration of life for him but each time I do, my brain gets so foggy and overwhelmed and I tend to just shut down.
Plus, it dawned on me that never before has my internet search history included “dinner ideas” and “urns for baby” back to back. Kind of wild how our brains are processing very mundane, monotonous everyday things, while simultaneously searching for acceptance and finality.

This was the sunset on the evening he passed.

gofundme.com/f/support-for-baby-grayson-and-family

This is my most special memory with Grayson. This was one of the days it was just him and I. It was a sleepless night th...
18/02/2026

This is my most special memory with Grayson. This was one of the days it was just him and I. It was a sleepless night the night before. He was hungry and they weren’t letting him eat for an entire week before his big surgery. (He was just on IV drip nutrition called TPN)
After such a sleepless night, I was “holding” him as best I could and we watched the sunrise together while we listened to meditative music.

This memory is quiet. It’s the most at peace I felt in all three months, and a moment in time where I was most connected to his spirit. He had settled out for about an hour and we just sat together, watching the world turn from dark to light and enjoyed each other. This was also the calmest and most still he ever was, and I knew even in the moment how truly special this memory would be.
I still play this song when I need to remember the moment but it’s too painful to play often. One day I know it’s going to be the best way to connect to him and it gave me a lot of peace in moments I needed it most during those 94 days.

gofundme.com/f/support-for-baby-grayson-and-family

15/02/2026

Today marks one week without our little love. Both the longest and shortest week of our lives.
I’ll miss his spirit every day but I’m so glad he’s not in pain anymore. It’s the only thought that brings me any comfort: knowing he’s free from suffering, and that we will be reunited one day. He was so sweet and just wanted to talk so bad! He was really trying!!

gofundme.com/f/support-for-baby-grayson-and-family

I dont think NICU / ICU dads get enough credit during hospitalization or infant loss.Dont get me wrong, it does hit diff...
13/02/2026

I dont think NICU / ICU dads get enough credit during hospitalization or infant loss.

Dont get me wrong, it does hit different for mothers when their baby dies.
But no one else saw the quiet sacrifices he had to make.
He went through everything I did in the ICU too.
He was there through everything, trying to balance our babies at home and our baby in the hospital.
He drove us every time, over a dozen times (3 hours each way) to the hospital so I wouldn’t have to. So I could sit back and relax and have one less thing to worry about.
No one saw him comforting me on the scary nights when BOTH of us were so uncertain about everything.
No one saw him carry the burdens of a critically ill child with so much class and dignity like I saw.

They say that mothers who have to lose a child are stronger than anything. But these ICU/NICU dads are built from a different cloth too.

When a doctor made the wrong call during dialysis, he was a FIERCE advocate for our baby.
No one saw the way he constantly paid attention to detail.
He memorized the medicine schedule before I did. He spent hours researching while my brain couldn’t retain information.

No one saw how he was gentle and comforting to our kids at home. I witnessed a bold and strong wisdom about him during the biggest time of grief that I’ll never forget.

No one saw him take care of the hard conversations about end-of-life care with the doctors so I could hold our baby just a little while longer.

♥️ And no one saw him so brave and strong, holding me while I held our baby taking his last breaths.

To say he’s my rock and steady mountain doesn’t do justice to how much strength he brings our family. It’s so much more than that.

His strength is cosmic and I’m honored to be by his side.

12/02/2026

Grayson was such a sweet baby. I wish you could have felt his spirit. He was so soft and sweet. Even his cries were soft and mellow. And he was always SO aware. His eye contact was impeccable, even the nurses made comments. He must have known he was only here for a short time, and was soaking everything up.
I keep searching for meaning in all of this. I keep telling myself that surely there’s an explanation, or a reason for all the pain and suffering we just went through. Truth be told, I think maybe the world is just a terrible place sometimes and horrible things just happen. I can’t seem to be able to reason with anything that’s happened right now.
I hope he knows how hard we fought for him. I hope he knows how loved he was all those sleepless nights we spent researching and talking to doctors and comforting him through all his pain. And I hope he can forgive me for not being able to hold him closer when he needed it, since he was hooked up to so many machines and ivs and monitors. Not being able to hold my baby while he was in so much pain was almost as traumatizing as losing him.
One day closer to seeing him again ♥️

12/02/2026

1 in 100 kids will be born with some sort of Congenital Heart Defect (CHD) . To put that in perspective, a child gets diagnosed every 15 minutes. We had no idea how common it was before Grayson.
Here he is being his cute baby self, always so alert and aware ♥️♥️♥️🥰

Grayson’s story has reached almost 1 million people from all over the world. One of those people sent us photos where th...
10/02/2026

Grayson’s story has reached almost 1 million people from all over the world. One of those people sent us photos where they removed his NG tube for us so we can always remember his handsome little face the way it was meant to be seen.
Even in all of our grief, we are eternally grateful to family, friends and strangers alike who continue to help us in a multitude of ways. This was very comforting after three long months of seeing him suffer. And it is so comforting to know my baby will never have to experience pain again, but will be a free spirit who has returned back to the place of all knowing. I cannot wait to meet him again and get to hold him properly.

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