silly babies



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Transplant 2- Honoring her donor, and her Aunt Ju

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Early in the morning on October 23rd, Tanner got a phone call that his sister, Julie, just a year and half older than him, had passed away. My sweet mother in law had to receive this devastating news from Bela's hospital room. Although Bela was unaware of all of it, at the same time they were helping my mother in law just outside her room in the hall, Bela's heart rate shot up to 180 and her rhythm went crazy for about 3 hours until they finally got it under control. We still don't really know why, most likely her heart telling us it was nearing its end. In the late hours of that very same day we got the call we had waited for for 11 months. A match had been found for Bela. Tanner had already decided he wanted to sleep there with Bela that night.  As hard as this hospital stay was becoming, there was a tangible peace being there with her in that room.  When he was woken up with the news that night, he stood in the hallway outside her room and wept as the flood of emotions o...
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3 weeks out and doing great!

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Bela has been doing pretty darn good. I'm amazed by her.. as usual. She dosn't want to be held back any longer! She begs me to go to the park, got to the store, get back to anything normal. We're taking it slow, but she's been out to the park a couple times when it's been not too busy and she's so happy to be sitting in the sand with her shovel in hand. Sometimes it's like she didn't skip a beat. She has times still though where she seems tired, or grumpy, or like something bothers her but she just can't quite tell what it is. But overall, oh my gosh! 3 weeks post-op and she's a rockstar! I'm just so darn proud of her, for doing something so hard and for coming out of it so well. She tells everyone that she just got her heart fixed and sometimes even shows them. I'm never quite sure how to react when she pulls her shirt right up. It's like she's actually almost proud of it, as she should be, but I cannot understand how...
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First transplant post

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This space used to be very healing for me. I wish I never would've stopped documenting here...I love knowing the first 5 or so years of Bela's life were well documented. But as I sit here with the familiar view of her hospital bed and sounds of beeping monitors, it feels almost necessary for me to write here again. Bela has had 12 incredible years of living life since my last post on here.  We were getting really comfortable with our cardiology appointments every 4-6 months, endocrinology every 3-4,  bloodwork every couple months, and occasional MRIs, procedures, or trips to the cath lab. Life has been full and so good. She's traveled a ton, ate a lot of good food, hung with friends, participated in theater, and found so much joy in her simple but rich life. We also had two more kids in that time.. more chaos and more love.  I don't know if anyone will still look for and find this blog looking for hope for HLHS, but I hope so.  We've now been inpatient listed for he...
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