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I have, yet again, grew my respect for parents who live every day with a "wired" baby; a child who goes through life trailing medical accessories like some kind of neurotic prima-dona. A baby who when picked up, instead of a swooping gesture of love, it becomes a process of actions and movements, no less tender however, and maybe perhaps even more loving. When Leo was doing his time in the hospital this summer, I remember the terrible disconnect of not being able to hold him, to hug him close, and feel his little body snuggled in tight to mine. And when I finally got to pick him up, five days after the surgery, it was a very stressful and visceral experience. Stressful, because in addition to trailing wires like some kind of robotic jellyfish, he still had the central line in his neck so any movement that jostled it was painful for him. Visceral, because I had this unstoppable momma bear feeling that if only I could hold him and rock him like I always do, it will make everything better. Instead, he shrieked inconsolably until I put him back down. It was painful for both of us. No wonder I kept having dreams where I would storm into his hospital room and start madly ripping plugs from walls, all the while screeching intelligibly like a banshee.

This past Monday Leo had to do a 24hr EEG. This was an ambulatory unit so he got to go home with it, which is convenient, but it also brought out some unpleasant memories for all of us. Little man had a PTSD flashback when they were installing the plugs on to his scalp. It took several of us to keep him still, and the look in his eyes was heartbreaking. However, once everything was in place and covered by a gauzy turban, he calmed down and become rational again. But for the rest of the day he was cranky and agitated. No wonder! Everywhere he went he had to drag this heavy pouch and get tangled in wires. If I wanted to pick him up, I had to pick up the monitor first, then gather up the wires, and then pick up the little man himself. It made all of us cranky. Until I duc-taped all the extra wire to his pjs which eliminated the tangles somewhat.

But, since this is Leo after all, the recording machine gave out on us the next morning after he gave it a couple swift kicks. Obviously, the unit we got was not Leo feet proof. At least it lasted long enough so that the tech felt comfortable taking the whole mess off anyway. What a relief! This time Leo wasn't as upset, mainly because taking it off wasn't as bad as putting it on and we gratefully left the hospital on a waft of recycled air and Christmas music. (Is it just me who was weirded out by the docs and nurses singing carols and topping off their lab coats with Santa hats??)  Leo was clutching a stuffed teddy that the soft heartened EEG technician got for him, and other than the gobs of blue glue stuck in his hair, he looked almost back to normal.

You can't do much to keep this baby down. As I write this,  Leo is fighting the cat for the warm spot by the stove, and he's still sporting the blue matted hair, just now with an added coat of olive oil. Google says that should work to get the glue off. Eventually.
If not, it makes for some pretty hilarious Christmas pictures this year!

And though I am able to look at parents with "wired" babies, and feel straight to my core, what it means to be in their shoes; I am, pathetically, terribly, ginormously grateful that for some strange, mysterious, and unwarrented reason, Leo gets to be unplugged. At least for most of the time.


  1. Thanks for the update! I truly feel uplifted by these - and you guys. You are always in my prayers, and, hopefully, one day, we'll actually get to meet the little man! Merry Christmas!

    ~Nicki Lyon

  2. He is almost unbearably beautiful. God bless you all and grant you much peace and joy as you celebrate the Nativity.

  3. Merry Christmas! The last photo is so cute!!!!!

  4. He is such a little darling !
    Keeping you all in prayer, here in S. Wales, UK.

  5. He's so beautiful and serene, he doesn't seem to be bothered by all those wires.. I love him:)
    I wish you all a beautiful, nice Christmas.


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