Tenacity… Small update and a story about Jack

It is March 2, 2014, about 2:30p.m.

Jack had some trouble yesterday, as he developed a blood clot in his left arm due to immobility. We have been assured that the clot is in a surface vein, rather than a major vein or artery which would carry a larger risk of deep vein thrombosis.  Because Jack is fresh out of brain surgery, blood thinners are not an option. We have been treating it by simply elevating the arm and keeping warm compresses on it.  Still, every new complication is jarring.

Last night, I got pretty freaked out because Jack’s fontanelle was sunken. I ran my hand over the top of his head and could feel the ridges of his skull plates like sharp protrusions beneath the skin.  It was very creepy.  I had been told that a sunken fontanelle could be a sign of cerebral salt wasting, an indicator that Jack may be losing too much CSF through his drain.  I also started asking questions about why he looked so pale, why his eyes looked so sunken.  I had already jumped to the worse case scenario and convinced myself that he was having a subdural hemorrhage thanks to that awful drain.  As it turns out, he was just a bit dehydrated.  A bolus of fluid later and he was on the mend.  Whew!

I am hanging out with Jack today, watching the tiny changes that are happening minute by minute. It’s bringing me back to my maternity leave, when I had the luxury of watching Sam and Jack slowly unfurl their senses and begin to become participants in the world around them.

From the moment Jack was born, there were things he wanted to do.  At first, what he wanted more than anything was to suck his thumb. In those early weeks, he flailed his arms in the unschooled, reflexive motions of the newly born.  Occasionally his hand or thumb would land in his mouth.  You could see the look of delight in his eyes, but then that hand would fly away again and it was back to frustration.  He worked for weeks to get that thumb.  Meanwhile, Sam just watched his brother with a nonplussed attitude. Over the long weeks, that hand became less and less jerky in its path toward Jack’s tiny mouth, until one day he captured it and kept it there.  (Incidentally, Sam watched his brother’s daily tribulations, then sort of out of nowhere stuck his hand in his own mouth in one fluid motion, as if his brother had taught him the trick.)

Whereas Sam tends to pick things up in his own good time, Jack has always worked intensely to attain his physical skills.  I remember one moment in particular when Jack was just about three months old. It was the very last week of my maternity leave, and he was lying on his back in the baby play gym, batting toys around.  My mom held her hands up before him and we watched as he focused on her finger with intense concentration.  He brought his arm up, uncoordinated and wobbly as it was, and brought it to her hand.  Then, slowly, uncertainly, but with the greatest sense of purpose that I have ever seen in anyone large or small, he closed his fingers around hers.  We were there, in that very moment when Jack learned to grab- that most basic, most human of skills.  It was purposeful, it was not easy for him.  He had to want it and to try very hard to achieve it.

Today, after a night of good rest, Jack seems better.  He had a long period of calm alertness this morning.  I watched his eyes follow my face again.  I watched his left hand curl around his favorite blanket.  There seemed to me to be a flicker of recognition in his face as he slowly, jerkily brought the blanket to his mouth, opened his lips despite the breathing tube, and tried to suck on it.  It was a purposeful motion.  It wasn’t easy.  But he tried.  I was more proud than I can express.

That’s my boy, I thought.  He’s going to surprise us all.

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9 thoughts on “Tenacity… Small update and a story about Jack

  1. John Oxford

    Hey, it has been quiet from Delaware. How is Jack and of course you and John doing? We think of you all each day.

  2. Katie Bova (nee Schisa)

    You are all amazing. I love reading your updates and I am heartened to know that despite the challenging road ahead, Jack is off to a solid start. This is a beautiful snapshot into your family’s life and I thank you for sharing it. Thoughts, prayers and lots of love from Syracuse! Kate.ac

  3. Sonya Wulff

    Your detailed stories of Love are so powerful…thank you!
    Your whole family is never far from our thoughts ❤ ❤ ❤

  4. Stephanie K

    Meg, the stories are the best. Keep telling them on here. I am thinking about you all constantly–the updates are hard but they keep my heart with you all. The way you stay centered on Jack’s person are the best.

  5. Megan Oakleaf

    Meg,

    Love these stories…both the one when he was 3 months old and the one from yesterday morning. I can imagine them so clearly. Jack must have been born with that determination and tenacity so that he’d have the traits that will serve him so well now…Sam too. And you too for that matter. 🙂

    Megan

  6. Bob Totz

    Thanks so much for the updates, Meg. We are all praying and pulling for Bounce Back Jack. I wish I could be there to help you physically too. Much Love, Uncle Bobby

  7. Jill Gaffey

    Dear Meg, I Love reading your stories about our precious Jack. They make me smile when nothing else can do that. Keep them coming! Love and Blessings, Aunt Jill

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