Holt’s Story

Site created on October 25, 2019

Welcome to Holt’s Heart Warrior page. Holt was born with a congenital heart defect known as Hypoplastic Left Heart Syndrome (HLHS). He had his first major open heart surgery, known as the Norwood, at nine days old. He survived even after a few days on ECMO (life support). Through all of the ups and downs, Holt was courageous and persevered like a champion. We are so proud of our handsome heart hero :) After two months in the NICU, we were so blessed to have Holt come home. It has been a joy watching him grow and thrive. He is so precious with the strength of a warrior.

For his next open heart surgery at 5 months old, know as the Glenn, we will be traveling to Oklahoma. What?!? Oklahoma??? Why????
Holt has been involved with the second phase of a clinical trial conducted by the Mayo Clinic. That’s right, THE Mayo Clinic. During this next procedure Holt will have an injection of his stem cells that were collected with his cord blood at birth. These cardiac specific stem cells will be injected directly into his heart during the Glenn procedure. The hope is that the stem cells will strengthen his heart as he continues to grow.

To best understand what I’m talking about, see the following link below and watch the video:

https://www.mayo.edu/research/centers-programs/todd-karen-wanek-family-program-hypoplastic-left-heart-syndrome/hlhs-consortium



Also****do not donate to this site****
Just wanted to say thank you for all the thoughts and prayers. 
Please, we request that you do not feel the need to donate to this site. 
Holt does not benefit from that, only the website does. We just wanted to use this site as a medium to communicate his status.

All we ask for is prayers 🙏🏼

Newest Update

Back to TX

Journal entry by Ali Skalomenos —

45 days later.... Holt was successfully transferred back to TX, at the Children’s Hospital of San Antonio. 

Earlier this week we got everything finalized and ready for his transfer. Holt had done well weaning onto less oxygen support and was looking good enough to be relocated. Nick and I had to decide who would drive and who would fly with Holt. I volunteered to drive because I couldn’t wait to see our other kids (I also knew Nick wanted to ride in the fast jet). Wednesday night I drove for 7 hours straight from Oklahoma City to New Braunfels. Then yesterday afternoon Nick cruised in the jet with Holt. Holt did great on the flight. It was a big risk but he rocked it. (Our other boys are a little jealous Holt got to go on the fast jet, Ha!)

It is great to finally be home with the kids. Six weeks in a Holiday Inn is too long. Six weeks in a cardiovascular intensive care unit is even longer. We needed to be home with the kids as Christmas approaches. Holt is making great progress. He will work on weaning off medications and off oxygen support while he is here at CHOSA. Of course we would love to have him home for Christmas, but I know that when he is ready to come home it will be a celebration in itself. 

Thank you for all the prayers and support. Wishing you all a Merry Christmas from our family to yours. 🎄
Read More of the journal titled "Back to TX"
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