silly babies



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Transplant 4

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In January of 2023 we first heard the word transplant.  I had always hoped it would be much later down the road.  But we had been hearing about signs of failure for awhile, and I suppose it shouldn’t have come as quite a shock as it did.  But when we were finally ready to list her for heart transplant after all the testing and evaluations, her liver testing showed that her liver was also failing possibly beyond repair and she might be looking at needing a dual transplant. It was devastating. There are only a handful of successful dual transplants done in the US each year, and it is still relatively new. PCH had never done one, so we were looking at having to go elsewhere for it.  So we decided to transfer over to Stanford medical center for a second opinion.  They also agreed that their initial findings did not look good and she needed to be dual listed.  We started trying to understand what this meant for our family, and decided if we were listing and wait...
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Today was a good day for Bela girl. Her doctors and surgeons are meeting tomorrow morning to discuss her situation and the exact plan for her surgery. They will most likely do the surgery on Friday. It will be the next huge hurdle for her to get past. She has been doing so well latley, but she is just being kept stable. Her real work will start once they operate on her little heart and her body must go through the hard work of recovering from bypass surgery at 1 week old. We are meeting with the genetisist tomorrow to discuss the success rate for these babies using the little data that is out there. We're a little nervous to hear what she will say to us, but have to keep positive even if the data isn't. One great news of today is that they are going to start giving her my breast milk!! THey are putting an NG tube down her nose to her tummy right now. I'm so excited to feel like I am doing something for her. It's been difficult for me to feel like I'm not doi...
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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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