I was 20weeks pregnant when I found out my son had HLHS. I had to travel 2 hours away from home to a hospital that was equipped for his care! He had his first open-heart surgery at just 2 days old. His second will be tomorrow, at 4 1/2 months. The emotional battle on us as his parents and the physical battle for him has been one of the hardest things we have ever done! We completely uprooted our lives and moved into a hotel just to be near him. He has only been out of the hospital for a total of 22 days. This has been so hard on us. The pandemic has only made it worse. His 2-year-old sister not being allowed to go see him. Only 1 parent allowed in unless it’s surgery day. No matter what though I’m forever grateful to have him!! He is such a fighter!!! All these postponed surgeries and he has held in there!! Doing so well!!! Now the day has FINALLY come when he will get that surgery!! He will be on the right track to finally coming home!!! Finally getting to meet his family!! It’s been tough but well worth it!!!!!!

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