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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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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