Happy Halloween & Back from PICU

On October 31, 2010, in Julia's Journey, Personal, by Chris

The Halloween candy has been passed out and the porch light is off. It was the perfect kind of year for trick-or-treaters – just enough to take most of the candy and leave a little behind. Julia is resting comfortably on Jocelyn and we’ve decided that she likes sleeping on her belly the best (ed. note – that’s only when we’re holding her. We always lay her on her back to sleep according to American Pediatric Association guidelines!). It’s been a nice weekend since Julia’s discharge from the PICU on Friday. We’ve accustomed ourselves to a new course of medicine, which takes a little more intentionality on our part to keep the right levels of Digoxin in her system.

By the time we got home, the home chores had piled up pretty high; so the rest of the weekend was spent catching up on all the things that make a house run – groceries, cleaning and the like.

The three days in the PICU were a blur of visits from different doctors, medicine dosages and waiting to find the right maintenance levels. An Occupational Therapist gave us some great tips on supporting Julia’s feeding so that it’s the most efficient it can be. (btw Did you know it takes seven cranial nerves and dozens of muscles to coordinate the suck/swallow/breathe process??)

We also took advantage of the pulse oxygen monitor and did an impromptu car seat test to see how Julia had progressed since the last time. She passed this time with flying colors, never going below 93% oxygen saturation! That’s good news for Julia because that means there’s a visit to Grandpa Bob’s farm in her future!

We had a chance to better get to know Dr. Weinhouse’s partners while we were in the hospital as well. Drs. Cutler and Riggs are just as compassionate and knowledgable as Weinhouse; but it’s interesting that as informed as their opinions are, there is some variance in their outlook on how much time the Digoxin is going to buy us and when the ultimate time of the surgery is going to be.

No matter. We have our orders. Feed her, love her, and let God and Julia tell us when the surgery is going to be. Until then, Happy Halloween!

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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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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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