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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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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Dare to Ask

On December 21, 2010, in Julia's Journey, Personal, by Chris

If you’ve been following our story over the past couple of weeks, you’ll know that we’ve been dealing with kind of a roller-coaster regarding her weight gain. It had come to the point last week that were resigning ourselves to the idea that her heart condition was making her progressively more tired and unable to feed well. As a result, we wouldn’t be seeing significant weight gain until after her surgery.

Interesting how things continue to change. In the last couple of days, we saw her come alive again and show much more interest in eating. It was still not where we needed to be according to what the specialists in the NICU were suggesting (120-140 kcal/kg-day – the math is convoluted, but you get the hang of it quickly), but certainly an encouragement.

We have promised ourselves that we would try not to let our spirits rise and fall over the number a scale was telling us about our daughter. But it’s really, really hard not to do that when your singular focus is feeding volume and weight gain. I guess it’s just human nature to want some kind of feedback on your kid’s progress and our reductionistic minds simply tend to boil it down to one or two metrics.

Despite those promises, Jocelyn got a number in her head last night as we prepared for bed and for this morning’s cardiologist’s consult. “We need to pray that she makes it to three pounds over her birth weight tomorrow.” I did the math and it seemed like a tall order, considering the paltry weight gain over the past couple of weeks. In fact, in the cold light of day, I could see no practical reason that our hopes could be fulfilled.

But before we fell asleep at the end of the day, we asked God for the four ounces anyway. I’ll not get into the theological conundrums of whether this whole thing is pre-scripted or whether God actually listens to our prayers and integrates them into the story. Suffice it to say, we dared to ask and Providence… provided. And with a whole half ounce to spare.

So we have two big milestones to celebrate today! Our Julia is three months old and is now a full three pounds over her birth weight! We also shared with Dr. Weinhouse the story of our Ebenezer stone and celebrated the reality that even now, God continues to help us.

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Finding Her Smile

On December 18, 2010, in Julia's Journey, Personal, by Chris

Julia has made some great strides and had an adventure or two this week. It seems like she has learned to do so much in the last couple of weeks that we need to take a moment and celebrate. One of the big ones is that she has found her smile and is using it more and more often. It began with a small lift in the corners of her mouth and would flash a quick smile at her mom. But in the last week or so, she’s been smiling a lot! I gotta tell you, eye contact and a grin from this kid and I’m glowing like the moon!

Another win is her head control and the muscle tone in her neck. It usually happens when she’s resting after a good feed. She gets her arms underneath and pushes off for a look around! She’s still working on her landing (sometimes her noggin comes down with a crash!), but she’s really starting to interact with her surroundings.

Julia also got a grand introduction to the staff at Kensington when she visited the office on Thursday. The toughest thing was having to be so vigilant on cootie patrol. I wanted to pass her around and let folks hold her and give her kisses, but we need to be so careful about her exposure to germs that we had to seriously limit her direct contact with people. There was no way we were going to keep Steve Andrews (Kensington’s Lead Pastor) away from her. We still have fond memories of him kicking down our hospital room door some sixteen hours after the delivery hollering, “Where’s my kid??”

Now the challenges that we would like your prayers on:

One part of the day that we least look forward to is the almost nightly meltdown she goes through at around 9pm. It begins with a little fussiness and escalates into a full-blown holler that is absolutely heartbreaking to witness and can last up to thirty minutes. Our theory is that she’s either working through colic or digested mucous, but it always happens around the same time of night. She’s tired afterwards, but otherwise none the worse for wear. Any experience or encouragement you can offer in the comments would be greatly appreciated.

In addition, Julia’s feeding is still an issue; and she gained only two ounces by her weekly weight check at the cardiologist. She’s still breathing very comfortably at this writing, and her spitting up pretty well under control; but it’s the first time I heard a subtle shift in Dr. Weinhouse’s optimistic tone. “She just needs the surgery.” It was stating the obvious, I know; but this may be the first time we got the clear reminder that the medications will only go so far.

Despite the challenges, we’re still watching her one month from the surgery, and we are still in awe of how she is growing. Thanks so much for your prayers. It seems the legion of angels I asked for are still doing their work!

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