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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Eight is Great! Celebrate!

On January 7, 2011, in Julia's Journey, Personal, by Chris

Hey everyone – just a short note of celebration! We took Julia into Dr. Weinhouse for her last consult before surgery and she is continuing to do great. She gained another seven ounces, which far exceeded our wildest hopes and put her well past the eight pound milestone. Like I said a week or two ago, we are still pretty mystified at how well she is doing and thankful how God is sustaining her through your prayers. We see stories on various online discussion groups of feeding problems and gastric tubes and realize how truly blessed we are. Thanks again for your concern and prayers; and celebrate with us!

And by the way… don’t let all the angelic pics on the website fool you. This little girl can be crazy making sometimes!

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On the Knees of the Matriarchs

On January 5, 2011, in Life, Personal, by Chris

My mom died almost three years ago now, and it is with a pang of regret when I remember her and the reality that she never got the chance to meet Julia. That special kind of love that only comes from a grandma has to come (at least on my side of the family) from the women of my mom’s generation.

Something amazing happens when I set my daughter in the lap of one of my aunts. All are well into retirement now and Julia is the last of her generation, coming quite late in the life of our family – kind of in that space between grandchildren and great-grandchildren. So I couldn’t resist capturing the interaction that Julia had with my Aunt Sally at her visit to the farm last week.

I’m reminded of the old Hebrew story of King David’s ancestor lying in the lap of his grandmother (Ruth 4:16 if you’re curious) and how great legacies are launched from the knees of the matriarchs.

Meanwhile, Julia continues to feed well and has finally grown out of the newborn clothes that were gifts from our community and moving on to the next bigger size. The next visit and weigh-in with the cardiologist is set for Friday morning, so I’ll be posting the official weekly weight gain then. Stay tuned!

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Preparations

On December 30, 2010, in Julia's Journey, Personal, by Chris

Yesterday, we met with Dr. Weinhouse, Julia’s cardiologist for a longer-than-normal consult. She continues to do very well and gained another four ounces. But we are shifting from maintenance mode to preparation for the surgery, which is less than three weeks away now. We did another echocardiogram and EKG so that the surgical team at Children’s Hospital could have the very latest information. Julia was good natured through all of it until the last blood pressure, where she decided she had had enough and was ready for second breakfast!

I can feel our efforts beginning to focus as the surgery date nears. We are a little more careful with her exposure to germs since any illness could delay the procedure and Jocelyn and I are ready to get this done. We are pulling ahead her four month vaccinations to give her that much more protection in the hospital. But we are still amazed at how well Julia is eating and responding. By now, a lot of kids with this condition start showing a blue tinge in their hands and feet and often have to go on a gastric tube to get the nutrients they need because they just don’t have the stamina to feed anymore.

The images I saw in the echocardiogram of a 1.6 centimeter hole in her heart just doesn’t match the vibrant little girl I see in front of me. We really do believe that God – and your continued prayers – are sustaining Julia far beyond what the structure of her heart can do. There will be more “mini-updates” in the days to come; but on behalf of this little family that is encouraged and blessed by you, thanks so much for your concern and stay tuned as we count down to the day we can take our healthy girl home!

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A Few Pics from the Christmas Celebration…

On December 28, 2010, in Life, Personal, by Chris

Hey everyone – the Christmas holiday has been great and Julia continues to grow! I’ll not burden you with my writing today, but give you several shots of our girl having some holiday fun… enjoy and Happy Holidays.

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