They closed his chest on Sunday. Much like the other surgery, they struggled to get his blood pressure regulated. It would seem, after a couple blood infusions, that he's doing much better. The patch over his little opened chest was bad enough--add paleness to that mix and.......I didn't share any of the photos with Bug until I felt they were 'okay' enough to share with a six year old.
We've been up front with her, best we can, since he was born. She no longer talks in terms of 'when' her baby brother comes home, it's now 'if' he comes home. Even with a successful surgery, there's still a long healing process with loads of complications that could change everything. Today he's three weeks old--we didn't think he'd ever see that and we're all blown away and so blessed that he's been able to.
The surgeon has called the hospital every two hours since the surgery. As the professor of surgery, he's got a vest interest in the wee one being able to go home with his parents, even if it means some degree of medical intervention. The parents want that--the desire is to give their baby a chance of life with a loving family, no matter the circumstances. There's no timeline, no guarantees--but the girl and her partner want a chance to bring the wee one home and to just love him because he's a precious thing.
I tell people the girl's not MY daughter, MY child, MY....anything. She's a child of G-d and I have the privilege of having her in my life to love.
The girl has a clearer understanding of what that means today.
She's done a wonderful job in the stinky circumstances. I'm proud for her and proud of her. She's had to make decisions I never dreamed she'd have to make....and made choices based not on her own selfish desires, but out of love.
We're so immensely grateful and overwhelmed by the loving support of people we know..and so many we don't know but surely WANT to come to know. Friends, family, friends of friends,family of friends, coworkers and compassionate strangers have given to help with costs so the girl and her partner can be with the wee one. There's been so many.
It's been emotionally overwhelming to be in the circumstances we've been in--and it's been equally emotionally overwhelming to break through barriers because
someone let people know there were barriers that were getting in the way--physically, emotionally, financially and spiritually.
Frankly, we were all too busy dealing with the chaos and pain that came with the package. But that didn't stop others from chasing solutions and making things happen.
I get teary eyed just typing that out.
So may people have reached out to help. It's been amazing....
Today the wee one is three weeks old.
We didn't anticipate having him this long--
We didn't anticipate there was another solution out there -- even if it wasn't a 'perfect solution', it was a
chance,
And he's beat the odds so far.
Not without major amounts of drama--(I swear he's a drama magnet.) but three weeks is a miracle. Every day is a miracle.
He's got 2 parents that love him without fail. And a big sister who's rooting for him and wants him to be able to come home. She's six years old and shouldn't have to contend with this--but she's contending with it well....asking hard questions and supporting mom and dad with great love.
And she loves her baby brother. She loved him before he was born and she'll love him passionately forever.
She was going to be a giraffe for Halloween--and opted instead to be a cat. I suspect she'll change her mind
again before trick or treat happens, but she'll have ears, nose, paws and a tail to be a cat any time she likes. Nana's a sucker like that....
And she now has a stuffie just like her brother's--so when she wants to pat him and whisper to him, she can whisper and pat the stuffie--cuz there's one laying next to him in Philadelphia and I'm SURE the messages she whispers get to her baby brother.
She spent the weekend whispering to the stuffed animal, carrying it with her from room to room. That's just a small example of a great love.
We'll all keep doing whatever gets placed in front of us--and we'll do it a day at a time. We'll all go to bed at the end of the day drained....but we go to bed knowing we've loved well.
Whole hearted love--without reserve.
And somehow, we'll get the energy we need to do it all over again when the sun comes up--no matter how long or even IF the head's made the pillow.
I know where that energy comes from--and it's not from me. I can't muster up nuffin' right now--except the commitment to do whatever's placed in front of me
with great love--because it's not right to cheat others (and yourself) by doing less.
Bug reminds me of that--even with pointy ears, fuzzy paws and a swishy tail.....
She's brilliant like that.
And so I'll pay attention and follow the lead of the six year old.......
I'll do what
ever needs done TODAY and I'll do it
with great love.