Nothing to See Here…

On February 18, 2011, in Julia's Journey, Personal, by Chris

And the news is… not much!

And that’s part of the reason (well, that and my computer’s hard disk crash) that you’ve not heard from me lately. It’s become… spookily… normal. Dr. Weinhouse checked Julia out last week, adjusted medicine dosages downward and doesn’t want to see her for a month. Her weight has sailed past nine and a half pounds and is expected to hit double digits in the next week or so – if she hasn’t hit it already.

Julia’s feedings have become uneventful (remember when I prayed for that? We’re there!). She hates taking naps during the day and it makes her a real pistol in the evening before we put her down for the night (thankfully, she’s a great overnight sleeper!). She is already doing doctoral research in creative diaper filling; finding new, innovative ways to get around the diaper and mess up her outfit.

It’s a strange thing coming to terms with the reality that you don’t have what feels like a sword dangling over your head anymore – that there’s more to the world than your child’s (now repaired) heart. Jocelyn and I are less obsessive about her feeding volumes and have moved on to talking about how we’re going to get her on a schedule so we can smooth Jocelyn’s transition back to work. And there is also a realization of the vast energy that Julia’s heart condition required of us. Fortunately, there are plenty of other things to pour that new energy into. We may even get back a few of those sleepless nights… in 2035.

Truth be told, we have joined the ranks of the rest of the new parents out there with dreams and desires for their kid’s future. Julia’s Down Syndrome is still out there and its aggregate effect on her is yet to be revealed; but our conviction has remained unshaken that despite it all, our little girl is going to have an incredible impact for good on the world. We will do our level best to give her every opportunity we can, and then let Julia define herself.

Meanwhile, with the dearth of news regarding Julia’s heart condition, I’m going to have to find some new things to write about. Stay tuned!

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Detours Happen

On October 27, 2010, in Julia's Journey, Personal, by Chris

It was going to be a routine (routine? really?) consult with Dr. Weinhouse today. A quick visit to confirm what thought we already knew: that she was growing, the diuretics were working and we were staying the course.

Forget that we had sneaking suspicions that her breathing was faster and more labored. Jocelyn and I were both realizing it – even feeling her chest almost imperceptibly heave just a little more as we held her. We talked about it the night before, not quite knowing what to do with it; and not even really accepting the reality of it in our minds quite yet.

Well, there was good news and scary news again today. And to be honest, it was scary for just a minute, then it morphed into acceptance of the inconvenience. The good news was that Julia had gained five ounces in a week and was now a full pound over her birth weight! We knew that it was so important for her to be growing well that we prayed on this last night – specifically for five pounds, nine ounces. It wasn’t a huge surprise, since she had been feeding so well, but it was a cool confirmation nonetheless.

But Dr. Weinhouse looked at Julia’s chest rising and falling with his experienced, penetrating gaze. “The breathing is the window to the heart’s left ventricle,” he said, “and God is telling us that we need to help her a little more.”

It was true. The little crease that her chest would make as she breathed was folding a little deeper. Even I could see it. And her breath rate was double what was normal. Our little girl’s heart was running a marathon even as she laid on the examination table.

Dr. Weinhouse had been preparing us for this moment. Julia would need a new drug to help her along. Digoxin – also known as digitalis – is a powerful tool in helping the heart contract more efficiently and relieve the symptoms of congestive heart failure. But it takes careful monitoring as the drug is introduced.

Within seconds, our plans and calendars for the day were wiped away and Julia was going to right from Dr. Weinhouse’s office to the Pediatric Intensive Care Unit (PICU) – only steps away from the NICU ward where Julia started her life. That kind of a change in the day is a little rattling for a parent – especially when we have to admit our fear that Julia wasn’t magically getting better, and that medical science continued to nail the diagnosis and course of treatment.

There was a little water in our eyes as we pondered the thought of having to go back to the fifth floor of the Royal Oak Beaumont’s South Tower (the home of Pediatrics), but I gotta say that Dr. Weinhouse’s encouraging tone was like Prozac for our frayed nerves. “The one thing you need to remember,” he said with restrained passion, “is that God LOVES Julia!” Funny how the best pediatric docs realize that they deal with three patients in any case: the child and two parents. By the way, he reminded me that it was my turn to pray as we finished our consult, and I did gratefully.

So now we are sitting comfortably in a private room in the PICU after a long day of intake, preparation, blood pokes and a frustrating feeding or two. We are thankful for a VERY attentive staff, and love they way they fawn over how cute Julia is!

On a side note, we’ve been dealing with increased mucous (common in kids with Down Syndrome) in Julia’s throat that has caused gagging and distress as she feeds. That’s not been fun at all. I’m glad to say that we are finishing the night with a robust and uneventful feed; and I’m realizing that we’ll need to remember how thankful we are right this moment in the months that will follow.

Sooner or later, (“God willing…” as Dr. Weinhouse often says) once the repairs to Julia’s heart are remediated, her feeding will become routine. If you are praying type of person, I humbly ask for two things tonight: that the medicine will do its work and make Julia more comfortable, and that I never forget to be thankful for a robust and uneventful feed.

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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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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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