It's been a very emotional year, a very hard year, a very amazing year. And it is so comforting to have it behind us. There's something about these next few weeks that are so huge to us, as though the first year is the hardest struggle with heart kids, and here - we are making it! We made it to December! And he is fantastic! It feels like the toughest, most fragile days are behind us. I know that might not be the case, but I'm hoping it is and that he sails through the next steps and we have so many, many more good days ahead of us. He's on a good path, good weight gain (we broke 12lbs) good heart numbers (we have sats in the 90s all day!), a little behind on milestones but we will get there, may need a helmet to fix his left side cranial hematoma but that's normal for a baby like Eli who has been in a bed for 5 months and 4 of those with a breathing tube, and just the happiest, most smiley little man. We couldn't be luckier. (Knock on wood. Please.)
Now we just wait. We have lots going on over the next few days to prepare for his discharge. A 24 stay with Eli before we leave the hospital is required. It will give Danny and I a chance to prove we can do this, together. Once Eli is discharged, we go to a hotel until his second biopsy on December 26. Yes, after Christmas. Once those results come back, they will look into letting us go home or stay longer depending on the level of rejection his may or may not have. We are so happy all of you have stuck with us over the past 9m since Eli's diagnosis. A true miracle happened right before our very eyes.
Xoxo
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