Update #7

Wow has it really been so many days.. It all blurs together. It has been a lot rougher than I ever could imagine. Alex was very very sick and his body wanted his new heart and isn't rejecting it so far, it's just that it was so much of a wonderful thing all at once. Like too much ice cream can give you a belly ache. On Saturday we tried to extubate, which was successful for a time, then he needed high flow and then Bipap and then once again Alex was placed on the ventilator. Our fear was that he was having acute rejection. Alex went down to the cath lab and underwent a series of tests including a biopsy which would help us understand what was going on. The surgeon came in and was very sad to report that he didn't know how Alex was still alive with the pressure he was experiencing in his heart. He had never seen a patient like this before. Later that night the biopsy showed zero rejection.we were really baffled as to why this all was happening. The conclusion of most is that his body was accepting the new heart but had been so sick before hand that it was adjusting very slowly. That because he was so sick before he had adapted to "making it work". So he was still fighting in a less than ideal circumstance. I went from the happiest happy to a very low low time. Over these past couple of days we have watched him improve. Pressures have gone down and his body finally seems to be celebrating with the rest of us. And maybe his body grieved the loss of his heart that had worked so hard to sustain him. And his new heart grieved the loss of its first home. Both needed time. Baby steps. Alex is still intubated and very much asleep. He responds to daddies voice the most. 

He did open his eyes and nod when I told him about his baby brother. We took Ry with us this morning. She is such an amazing big sister. She wanted to be one of the first to know. We also saw a beautiful lip and nose(no cleft) healthy bladder and kidneys, spine looked great and a glorious four chamber heart! I will follow up with MFM to schedule a fetal echo. Today we feel blessed beyond measure!