McKay may have finally turned the corner today. Hooray! Instead of whimpering his way through the day, giving a few good hours of full-bodied crying, his expressions today said "pick me up," "hold me this way, not that"; the type of protests more in line with his peer group. Ahhh. My baby is on his way back.
Of course I cannot speak for his darling Aunt and Uncle who had to endure his most vocal protests of the day for the short while we ran out to Matt's firm Christmas party tonight. Of course. Is two hours really enough time to even notice we're gone? Apparently so. Our fail safe? Put him in the tub until we get home. It's true. McKay has spent a disproportionate amount of his life afloat. There must be some school of thought out there that argues exposure to water as a method for lifelong happiness, right? Thanks for the bath Aunt Hil.
We also came home to some special Christmas surprises. A gorgeous fruit basket (Thanks Robyne and Spencer!) and an anonymous "Christmas Jar" mysteriously left on our front porch. We were so taken back by the gift of the jar, I'm not sure I'm fully ready to share what it is and the amazing spirit it brought into our home. Let me just say that we discussed the meaning of the word "sacred" tonight with our children and agreed as a family to pray about how we should use the jar. Amazing. Just amazing. To whomever left the gift, your note would have been enough. I was moved on many levels. Thank you for trusting us with this new and exceptional tradition. We will honor it.
As for the promised details of our check up yesterday, there is much to celebrate. First let's hear a "whoop, whoop" for 87. That's McKay's new O2 level when he's on his own. We couldn't even get him him into the 70s on a full liter of oxygen two weeks ago. Now that's getting what you paid for! Well done miracle workers.
McKay's chest xray was clear except for the twist-tie looking fasteners that hold his healing sternum in place. I had to smile thinking these were the kind of xrays little boys would love to take to show and tell. I will look forward to that day for McKay. Mostly, the xrays check for fluid build up in the lungs and chest cavity. No fluids holding Mr. McKay's heart back, thank you very much.
Next, the EKG. We had to laugh at our ham. Here was a baby that had cried pretty consistently for days prior to his appointment. But you would have never known it for all the smiles and shy looks he gave his nurse as she placed twelve sticker-backed patches on his chest, hooked up probes, and then removed the stickers. He smiled through the entire thing. Really?
In any event, the consensus is that McKay will stay on a few drugs for the months to come to assure he does not retain fluid around his heart or in his lungs. But that's it. No more oxygen. No more tubes. And we don't have to go back to the hospital until February. February!
I called Matt at work today just to tell him the joy I felt picking McKay up out of his crib and walking out of his room, down the stairs, wherever we wanted without having to lug, trip, and bumble over those awful tanks and tubes. We felt free. And it made me smile.
I got a call earlier this week from a friend of a friend whose baby was just diagnosed in utero with different, but similar congenital heart defects. It felt good to talk to her, to say out loud what a blessing this experience has been--and mean it. To tell her to hold on to her positive attitude and expect the best. To understand the fear she's feeling and try to do what I can to bring some peace into her heart. To tell her to come meet McKay when she's ready and see what 14 pounds of hope looks like. I think she will.
We will never be the same and I don't think we ever want to be. It's on days when we call each other just to say we're happy. Or scared. Or distracted. It's on those days where something special and permanent hangs in the air between us. We all feel more connected somehow. To each other. To our neighbors, friends, and family. To strangers who have shared similar experiences who we now call friends. Really, this experience has brought so much and taken away so little. It's funny--we spend our entire lives planning the details of our future when really it's the experiences we could have never expected, and most definitely would never hope for, that truly end up making us what we are. And tonight, we are happy.
7 comments:
This is the most touching post. What a gorgeous boy. I am so glad he seems to be turning the corner. He must be feeling better. You guys are one amazing family. Thank you for sharing these experiences with all of us. You have touched more lives than you know. We love you guys.
Mindi! Every time I read your new updated posts, I just get the chills through my whole body! You INSPIRE ME! We have only spoke a few times here and there at work, or running into e-chother at the doctor, but I must say, you and your family have taught me so much! I am so grateful for that! THANK YOU! And I'm so HAPPY to see the steps MacKay is taking! What a little HERO he is! And no more tubes and tank.....YAY! :)
Woo hoo for McKay! I am so grateful that your days are a bit calmer.
It was great to see him will you were in the hospital and even better to read how great he is doing now that he is bak home.
Earl
You're words are so sweet. Thank you for what you teach me!
Mindi, you know those awesome gingerbread cookies I remembered so well came from you right!? Thanks!
Now your blog is even more elegant! I am so glad to see McKay is doing so well now. I wish you many sleep filled nights!
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