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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Thankful

On November 25, 2010, in Life, Personal, by Chris

The heavy rains of the day have subsided and I’m curled up by the fireplace in a rented house up on Cass Lake for the holiday. Epic sessions of Yatzee and Mexican Dominoes are in progress among the generations. Jocelyn’s entire family has gathered here from as far away as Texas to be together for Thanksgiving – and also to meet Julia. There was no way we could fit them all in our 900 square feet in Birmingham; so instead of holing up in hotels, we decided it made more sense to rent something we could all be together in.

I’m one belt hole bigger after a dinner, masterfully prepared by Deirdre, my sister-in-law. She has an uncommon passion for food, having brought many of the ingredients for the stuffing up from Ft. Worth in her luggage. If you get invited along on a restaurant crawl with her, clear your schedule!

The carbs and tryptophan are starting to take their toll, but I couldn’t let the moment go by without sharing a few of the things I’m thankful for – just in the past week:

It had been a tough week of feeding for our girl. Very often, the routine has been (1) Feed (2) Burp (3) Cough (4) Hurl. And far too often, we saw all of our care and feeding come splashing on the floor, followed closely by a frustrated howl from Julia. The pediatrician has diagnosed her with acid reflux (pretty common with kids this age) and has put her on yet another medicine to make her more comfortable.

Despite the challenges, Julia still gained four ounces and is on a fantastic growth curve. The meds continue to work as intended; and Dr. Weinhouse, the specialist overseeing her heart condition, is very pleased. We gathered in his office after the consult to pray together in thanksgiving for Julia’s progress.

We got a bulletin from a church we have never heard of in the mail. There was a note written on it from a friend of a friend that they had heard about Julia and put her on the church’s prayer list. We often hear about people praying for Julia, but the note brought into focus the kind of love and concern that folks can have for someone they have never met. By my last count, I know of people gathering to pray for Julia in the U.S., Mexico, Greece, the U.K., and India. Humbling.

We have received countless casseroles and pot pies from well wishers that have allowed us to not think that much about preparing meals over the past two months. It has laid waste to my weight loss regimen, but it has taken so much stress off of Jocelyn and I as we focus on preparing Julia for the upcoming surgery.

And as a confirmation of the richness of the community that God has blessed us with, in the time it has taken me to write this post, I’ve received three text messages from friends wishing us a happy Thanksgiving.

A wise friend of mine has suggested that the first step toward a life well lived is to take an intentional step toward gratitude – be thankful for what you have and not angry about what you do not have. Today, we all have the chance to do that (before the carnage of Black Friday) and step more fully into the stream of beauty that awaits. Sometimes in the pursuit of happiness, we just need to stop and be happy.

Thanks everyone from the Cook family!

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An Early Thanksgiving

On November 17, 2010, in Julia's Journey, Personal, by Chris

We dared not believe it, but a moment of thanksgiving came a week early! I remember the prayer that Jocelyn and I offered up only 24 hours ago as we prepared for bed. We dared to pray for a weight gain of six ounces at today’s appointment with Dr. Weinhouse. After the modest weight gain last week, we decided to let our dreams go a little wild and ask for double. We figured she had been feeding well, but even so, we gave each other a knowing glance as we prayed – we knew it was a crazy ask.

Julia went through the standard measurements of blood pressure and pulse oxygen saturation – both were good. Better than just good. But the real surprise came at the weigh-in.

Bottom line, the numbers on the scale just didn’t stop anywhere close to where we had thought. Julia’s weight gain for the week was almost seven ounces – far exceeding our hopes for the week. What makes this so encouraging is that the average weekly weight gain for children without heart issues is 5-7 ounces.

It’s amazing how our hearts just… flew… as we got the news. Our daughter is holding up her end of the deal! The feeding and love is working – and the celebration continued as we met with Dr. Weinhouse in his office. He prayed a psalm of thanksgiving over Julia – one that Jocelyn had memorized in Sunday School when she was young. But it really sounds cool when you hear it in Hebrew!

Psalm 100
A psalm. For giving grateful praise.

Shout for joy to the LORD, all the earth.
Worship the LORD with gladness;
come before him with joyful songs.
Know that the LORD is God.
It is he who made us, and we are his;
we are his people, the sheep of his pasture.
Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.
For the LORD is good and his love endures forever;
his faithfulness continues through all generations.

The Cook family thanks you for your continued prayers. That tall order I had asked for on last week’s post is one step closer to reality!

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Thus Far…

On October 20, 2010, in Julia's Journey, Personal, by Chris

The weather has given way to wind and rain tonight, and I’m listening to Jocelyn singing “You Are My Sunshine” to Julia up in the nursery. The house is quiet after the flurry of activity that comes with trash night and a run to Target and I’m thinking back to where I was a month ago.

Right around this time, I was peering through the plastic of an oxygen tent at my newborn daughter – the NICU staff working quietly around me as I stared in disbelief. My wife was recovering from an emergency caesarean a floor above. And I wondered in awe as I watched her sleep, what surprises lay in the days ahead.

There have been surprises and challenges in the last month, but tonight we celebrate a month that Julia Paige Cook has drawn breath on this earth. And we thank God and our community and family for it all.

So why is the picture of the stone? I see it as the intersection of ancient reminders of God’s presence and an interesting happenstance while we were on vacation in Greece this summer.

My sister, Lauren, is not much of a deep water swimmer, preferring to chum along the shore with her snorkel and mask looking for interesting stones to add to her collection. I have seen her come out of the water laden down with more than she can carry. So, ever the pragmatist, she most often tucks them into her bathing suit as she swims to take full advantage of the time in the water. A gifted artist, she has gone to great lengths to incorporate her finds into the tile work of their villa.

Jocelyn and I had been on the island for a couple of days; and the care and stress of Julia’s diagnosis was beginning to melt away a little. During an evening swim at a secluded beach, Lauren popped up between us and showed us some of her finds. Jocelyn’s eyes fell upon a green stone with a stripe of marble running through it, and without missing a beat, said, “That’s Julia’s heart!”

Interesting. It had the distinctive shape, and the marble stripe ran right where the wall separating the left and right chambers of the heart might have been. It was a strong line, and a reminder of what to pray for regarding Julia’s heart, which by then we had been told had complications.

Before our vacation, we had spent an evening at a friend’s home with the British evangelist J.John, who is a firm believer that God can move in the present day just as he did in the Bible. His challenge to us that night was to pray for Julia’s wholeness, despite everything that medical science was telling us. And when Julia was born, we would have more clarity on what specifically to pray for. So for the rest of the summer, we used my sister’s gracious gift as the focus of our prayers: “Please, God. Make our child whole. Repair the breach in her heart and let her live.”

It turns out that Julia still has a heart defect; and the stone still sits on the sill of our kitchen window. But instead of a reminder of promises unmet, its meaning has changed and deepened as our experience has formed us.

Its roots take Jocelyn and I back to a time long past with a nation doing its best to follow a Deliverer God with a name no one dared speak out loud. They gathered and asked their priest, Samuel, to intercede with God on their behalf. Enemies learned of the gathering and raised an army bent on genocide, and God swept them aside with heaven-sent thunder. And as the old Hebrew story goes,

“…Samuel took a stone and set it up between Mizpah and Shen. He named it Ebenezer, saying, ‘Thus far has the LORD helped us.'”

Ebenezer – a stone of God-sent help. When God did something memorable in Israel, they would often raise a stone of remembrance, so that in the darker days of the future there would always be a reminder that God would be there – even when it didn’t feel like it.

The good news from the Cook family is that Julia is responding well to the medications and her breathing is more comfortable. She is gaining weight, even with the fluid loss caused by the medication. We have our first consult with the surgical team at Children’s Hospital tomorrow, and we may even set a tentative date for the procedure. Complications notwithstanding, the countdown begins tomorrow.

There are times as we consider Julia’s condition that it feels like we have been forsaken and the fears of going it alone overtake us. But the marble striped stone stays on our window sill as a reminder that thus far, the LORD has helped us. We celebrate that tonight on our daughter’s one-month birthday.

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Whatta Week…

On October 15, 2010, in Julia's Journey, Personal, by Chris

I’m sitting next to my wife with the baby in her arms after a pretty tiring day. After a week’s blur of doctor’s appointments, trips to the pharmacy and paging through volumes of insurance forms, we are really feeling the fatigue.

Julia has had a lively day where she stayed awake almost the whole morning and then had an afternoon photo shoot with a family friend who happens to be a very talented children and lifestyle photographer. Shannon is a good friend who actually got me out from behind the camera for a few family shots (more on that later). It turns out that all the activity tuckered our little girl out and put her on the corner of Fussy Ave. and Cranky Street. No fun when that happens, but now she is resting comfortably. Even as I write, I am watching the pacifier in her mouth bob hypnotically up and down, pause, and then start again as she dozes and coos, waiting for her evening bottle.

I spent most of the morning lining up consults with pediatric heart surgeons – one at University of Michigan and the other at Children’s Hospital. I even drove downtown and navigated the rabbit warren of halls and elevators of Detroit Medical Center to drop off Julia’s chart at one surgeon’s office. This will be my life for a while – trying to juggle the roles of dad, husband, pastor, and (somewhere in there) child of the Creator.

I’ve received feedback from many saying they are praying for our little girl – thanks for that. It turns out that the results are… mixed, but ultimately hopeful. The Wednesday meeting with Julia’s cardiologist revealed that the “honeymoon period” is drawing to a close and the symptoms of her heart defect are beginning to show themselves. After intently watching her as she laid on the table, the doc detected a very subtle shift toward rapid, shallow breathing – a telltale sign of stress on the left ventricle of her heart. But he assured us that it was nothing to be alarmed about and that God loved Julia. And even through the quiet panic I have to fight off when I hear scary news about my daughter, at that moment, I believe him.

Dr. Elliot Weinhouse is truly an amazing man. An Orthodox Jew who, legend has it, is a rabbi at his temple and the father of nine children. Oh, yeah – he’s also one of the best pediatric cardiologists in the Midwest (my assessment). I’ll share another story of his passion for God and people – especially children: The first time I saw him at Julia’s bedside in the NICU, he took my hand, looked me in the eye and quoted the Priestly Blessing from the Book of Numbers – some of it in English, some in Hebrew:

“The LORD bless you and keep you;
the LORD make his face to shine upon you
and be gracious to you;
the LORD lift up his countenance upon you
and give you peace.”

… soothing words for a shell-shocked, uncertain new dad to hear. We even prayed together at her bedside with his uncertain East Indian resident.

He always has a kiss on the forehead for Julia, warm words of encouragement to steady the nerves of her parents, and as I mentioned in a previous post, his office walls are literally covered with the children (he says “precious children”) that have been under his care over the years. And anyone who, at the end of every visit, prays in Hebrew over my kid is a rock star in my book.

The disappointing news of Julia’s symptoms made Wednesday a quiet day as my mind churned through the emotion of it. This was going exactly the way medical science predicted. God seems to have decided not to delay the symptoms, as I had asked so many to pray for.

Damn.

But I, prompted by a benevolent butt-kicking by a friend, woke just enough from the weight and stress in my head to decide to be grateful in this. Notice: I did not say grateful for this, but in this. God gave us over a week at home to enjoy our little girl and not think about the heart defect too much. There will be a time that the trial will be complete. An in our more clear-headed moments, we do not fear for the life of our child. That is something worthy of celebration.

And the celebration continued the following day. The audiologist’s findings are that there is NO EVIDENCE of hearing loss in Julia. The right ear passed immediately and the left ear shows mere signs of fluid that can be remediated in many ways.

My baby will one day enjoy the symphony with her mommy and daddy.

So tonight we will celebrate, rest and hit it again tomorrow.

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