Visits – Docs and Family

On October 26, 2010, in Julia's Journey, Personal, by Chris

A lot has happened over the last week, the most exciting of which is that we really feel like we got our team to do Julia’s surgery. We met last Thursday with Dr. Henry Walters, the Chief of Pediatric Cardiac Surgery at Children’s Hospital of Michigan. We felt utterly taken aback by his humility and concern. He spent time with us, explained her situation and how the defect would be repaired (amazing! and will be explained in a video I’ll be posting soon).

We have our tentative surgery date – January 17th – the countdown of which is on the widget at the upper right of this webpage. We also have our marching orders: body weight. The tissues that the surgeons will be working with are as thin as Kleenex, and the more weight we can put on Julia, the stronger those tissues will be. The goal is a minimum body weight of 4 kilograms – or eight pounds, twelve ounces – but getting her over ten pounds would be better. That will be a tall order considering she’s so petite, but we are going to take a serious run at it.

As Julia’s symptoms progress, the feeding will become more of a challenge. It’s like trying to eat while running wind sprints. So we will be very watchful over the next couple of months.

In the meantime, Julia is eating well and taking visitors! My sisters, Lauren and Lisa, along with my nephew Zach and my Dad came over for dinner on Friday. Our dear friend, Alice, came the following day. We even took advantage of Sunday’s nice weather and took a stroll around the block. Sometimes, it even feels normal!

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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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G’bye Grandma

On October 17, 2010, in Life, Personal, by Chris

After eighteen days of tireless service, we said goodbye to Grandma Nancy today. She needed to get back to Corpus Christi where her students and community await. Taking such an extended time off to be with her daughter was quite a sacrifice, considering the workload that Nancy takes on in her professional and personal life. But it was one that she gave willingly, and I can’t think of another person who has made more of an amazing impact in the lives of two new parents and their daughter.

For more than two weeks, Nancy brought willing hands and forty years’ experience as a nurse and mom of three. Everything was done with love and concern, and I still remember fondly the late-night sessions between mother and daughter in the baby’s room that I would overhear. Through all of it, she tried hard to keep her impact on the household to a minimum – although her shouts of excitement during a good college football game were the stuff of legend!

In her days as a public health nurse in 1960’s Detroit, Nancy spent a lot of time working in the New Center Area along Woodward, taking care of the likes of Berry Gordy’s mother and Smokey Robinson’s girlfriend. After moving to Dayton, she was named Ohio Nurse of the Year in 1978; and many labor and delivery teams would consult with her on difficult cases. Over the years, she has built her skills to the point of making the transition to academia and the training of a new generation of caregivers. Even now, when most people her age are already retired, she is taking students on medical mission trips to the Dominican Republic.

The parting this morning was not without tears as Jocelyn and I consider facing the months before the surgery without Grandma; but we could not help but be grateful for the time we had together. We also look forward to Thanksgiving, where all of the family will be reuniting for the first time in years.

Thanks again, Nancy. You truly are one of a kind.

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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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Little Bag O’ Sugar

On October 12, 2010, in Julia's Journey, Personal, by Chris

A variant on the old Sesame Street tune: One of these things is just like the other! We have had some real encouragement over the last 24 hours. The visit with the hematologist yesterday went very well. Dr. Jamil has been watching Julia’s platelet condition over the past couple of weeks (you can read the backstory here and here), and we got the happy news that her count has tripled to well over 300k per microliter – well into the normal range! There will be a final follow up in a month, but this is a big win.

As the pic indicates, we have reached another milestone in her growth. Julia gained four ounces in the past four days and passed the five pound mark as of today! She has been eating well and the concern that we had about her growth has been allayed somewhat.

It’s amazing how these comparatively small, incremental improvements can really make my day! I even broke into a little victory dance when I got the news (a sight definitely not ready for prime time). There are going to be days where the news isn’t as encouraging; but today, it’s very, very good.

Okay – if you are the praying type of person, I have a couple of requests: Julia has a couple of appointments coming up. The cardiologist is tomorrow to continue monitoring her heart condition. We hope for continued comfort and ease of breathing and a delay of her symptoms.

The other is with the audiologist on Thursday. The NICU staff did a routine hearing test on Julia, and the findings were such that further testing is required. Granted, there are issues of her health that are far larger than this one, and the situation may be remediated in many ways. But I really, really want my kid to hear. I was listening to Vivaldi, Alison Krauss and David Gray as I was working today, and I prayed that God might someday grant my daughter the same enjoyment (okay, maybe different music). I’d really love it if you would join us in that prayer.

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