A Pre-Thanksgiving Giving of Thanks

On November 24, 2013, in Julia's Journey, Life, Personal, by Chris

We’re coming into the season where we all take an intentional look back at the year and our lives and practice the life-giving discipline of gratitude. Many of you have been following our little family’s adventure faithfully for over three years now, so let me say right at the outset that we are very, very grateful for you!

But there’s more that we’d love to celebrate with you! It was over a year ago – summer of 2012, in fact – that we put a goal out there that we wanted to go “all in” on the meager therapy resources available to us and get Julia walking as soon as possible. We were told that a lot gets unlocked in terms of fine motor skills and speech development once a kid masters walking. It’s as if all of their creative learning power needs to focus on that one thing before it can be re-tasked to other things.

True to my clueless nature, I put a date on the goal. I said we wanted her walking into the Easter services at church this year. I even had the temerity to tell a couple of the therapists of our aspirations. My ideas were met with polite silence.

Winter and Spring came and went; and though there was progress, it was painfully slow. But then over the summer, with some focused physical therapy, we started seeing strength and organization develop. By the end of the summer, with proper motivation (read: playground!) she had mastered her walker and was off and running. But walking unassisted was still eluding her – over a year after I had set the goal.

I had forgotten – again – that as important as Jocelyn and I and all of the therapists are to Julia’s growth, we play a only a small role. In the end, it is God and Julia who determine her trajectory. It isn’t as if I’ve not talked about that before (in fact: here, here and here), perhaps it will sink in through the layers of my skull sooner or later…

But now, I’m happy to tell you that a new milestone is near. I offer you the following for your viewing pleasure:

Only eight months after the original dream, but we’ll forgive her! But in all seriousness, we are grateful for your continued prayers and encouragement.

Have a great Thanksgiving!

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A Big Day and A Special Message

On January 20, 2011, in Julia's Journey, Personal, by Chris

I’m sitting in Julia’s room after a good day, but she’s finally crying from the pain of the chest tubes. It’s hard to watch, but we have dose of morphine on board to keep her comfortable and the team is planning to remove one or more lines tomorrow. We’re crossing our fingers, but Jocelyn may be able to hold her baby again very soon.

Julia’s heart has continued in its normal sinus rhythm for nearly fifteen hours now, but she’s still connected to the pacemaker should there be the need. Our hope is that she’ll go a full forty-eight hours unassisted and at that point, Dr. Walters will feel a comfort level in taking the pacer wires out. You’ll hear more on this later.

Her temperature is still a little on the high side, but her blood and urine cultures are negative thus far, so we’re breathing a tentative sigh of relief. She is on broad spectrum antibiotics, including Vancomycin – what Arlene, our night nurse, refers to as “one of the big guns”.

On a lighter note, a couple Detroit Tigers – starter Max Scherzer and relief pitcher Al Alburquerque came by this afternoon for a quick visit. My sister, Lisa, was green with envy! Even though she’s lived in California and Colorado for years, she’s still a dyed-in-the-wool Tiger’s fan. Julia, on the other hand, was nonplussed and probably more interested in the pain meds that nurse Jacquie was giving her at the time!

We’re already seeing a massive improvement in her eating. In another surprise for the medical team, Julia has taken very well to the bottle again; but the difference in her feeding efficiency and vigor is truly startling. What would have taken a half hour or more for her to take is now being downed (greatfully!) in less than fifteen minutes! The medical team is excited about this as we are!

Finally, we’d like to give Dr. Walters a big thanks and send him off for a well-earned rest. He’s taking the weekend off and leaving Julia in the care of his partner, Dr. Delius. He will return on Monday, but wanted to give you his personal regards and leave you with a message of encouragement. Enjoy and we’ll see you tomorrow!

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Let me just admit at the outset that this post isn’t going to turn out like anything I had planned. Most of you who have been following this story know Dr. Weinhouse and what a caring, marvelous man he is. (ed. note: for those of you who haven’t had the pleasure, you can get caught up here and here.) All I was going to do was share his kind words of intercession and call it a night. Apparently Julia and God had other ideas.

First, the pragmatics: Julia is continuing to feed astonishingly well – so much so that she’s starting to get a little cranky when we aren’t there with the warmed bottle in hand and a burp cloth draped over our arm. Even this evening, Jocelyn was upstairs and I was consoling our ravenous little girl, even though there should have been at least thirty minutes before we would have expected her to be hungry.

So there I sat with a howling Julia on my knee trying to figure out if it was her hiccups or actual hunger that was the source of her ire. You get pretty inventive after a while trying to find ways of distracting a fussy child. Start with one position, shift to another. Jiggle her on your knees, then change to the football hold or throw in a light stroke under the chin. In moments of desperation, I’ve even gotten up and swayed with her (a sight that only my wife will ever witness – it’s not pretty).

Her diatribe was at a peak when, in a moment of inspiration, I slipped a finger between the buttons of her sleeper and traced the line of her breastbone. Her perfect… scarless… breastbone. Ugh. Blindsided by feelings that I don’t want to deal with right now. Push it down. Push it down…

I got up and fixed her a bottle – partially to distract my thoughts of fear and anticipation, but mostly because the hiccups had subsided and a process of elimination concluded that she was hungry. Julia continued to find new expression for her fussiness, but her frustration ended completely when I was finally able to sit and let her feed.

And as I looked upon that satisfied, angelic face, the ache of a father’s uncertainty came back.

This isn’t fair. No child deserves to have her chest cracked open…

but thank God that they can fix the ailing heart it contains.

How can this little mind process the trauma that is going to be visited upon her?

Will she come out of this with her innocence intact?

I took it all in and breathed it all out with a watery-eyed prayer of desperation. Lord, please help us.

I offer you this prayer of a heart doctor with a big, big heart. And whether you believe that we are knitted together intentionally or are simply a random collection of very well-ordered organic molecules, I ask that you be in agreement with the spirit of his prayer…

Elliot’s words are our words…

Anna Adonai, Hoshiana – Dear God, help us

No truer, more heartfelt words have been uttered in this whole adventure. I pray it as I consider the unknown of the next couple of weeks. I pray it as I run out of ways to distract a fussy infant. I pray it as I move through my day, trying to stay coherent on four hours’ sleep.

Anna Adonai, Hoshiana – Dear God, help us

Jocelyn and I would love for you to join us in that prayer over the next couple of weeks. There will be more news forthcoming on what can be expected and how I’m going to be modifying the website so that you can get real-time updates during the days of surgery and hospitalization. But none of that matters but for the providence and power of the Infinite Love who is mindful of us even when it doesn’t feel like it. None of that matters but for the love and support we have felt from you.

Thanks again.

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Julia’s Heart: The Straight Scoop

On November 3, 2010, in Julia's Journey, Personal, by Chris

A short video explaining it all…

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