Overnight Progress & Today’s Plan

On January 19, 2011, in Julia's Journey, Personal, by Chris

There’s a rhythm that has emerged in the goings on here on the PICU. Typically they try new things during the day – vent settings, new meds and the like – and then spend the night letting Julia rest and regroup, making only small adjustments in a “steady as she goes” attitude. So the rhythm we are going to try on the blog is an morning update on the night’s progress and the plans the team makes during morning rounds, followed by a short evening update reviewing the days progress; peppered, of course, with my prattling and unsolicited observations!

The great news is that our little girl did very well overnight! I won’t go into the medical details, but her “numbers” look very good; so good that the team set a goal of weaning her off the ventilator and, if everything goes well, removing her breathing tube sometime this afternoon or evening. She has been taken off of the sedative because there’s a tendency for laziness on the part of the baby to rely too much on the ventilator, but Julia was active and even a little squirmy this morning when we arrived, requiring Jocelyn to use her super mama powers to relax her (along with a stiff dose of morphine to dull the discomfort). Today, if we stay on this plan, will be the toughest and the most necessary. Getting her off the vent is the first big step toward recovery, but the way that will happen remains to be seen. Suffice it to say there are a few options.

Dr. Walters came in later and started adjusting Julia’s pacemaker as well. Getting her off the vent is priority one, followed closely by encouraging her heart to find its own sustainable rhythm. We’re not going to tax her too much today, but he reduced the settings a bit and will be monitoring throughout the day.

We are all walking a fine line of having desires for Julia’s progress, but not expectations. She and God are firmly in the driver’s seat and will be telling us in their own time about what the way forward is. There’s even a strange reverence on the part of the medical team for the dance we are entering into. It is a willingness to live in the tension between the active and passive not unlike our walk with the Infinite Good. It’s a willingness to live in the “middle voice” and responding to one another instead of actively driving.

You’ll be hearing more in the evening. I gotta go be with my girl! Thanks for the prayers and concern.

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Marathon

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

Hey everyone! Sorry for the radio silence. Jocelyn, Julia and I got the rest we needed last night and the day is progressing well. But before I get into the details of today, let’s get a little recap of yesterday.

(ed. note – For the uninitiated, some of the pics at the end of this post are pretty tough to look at; but understand that the experienced eyes are saying that she is looking and doing surprisingly well.)

Okay, here we go: At around 5:45am, I tucked my little girl into my overcoat and took the short walk from the International Center where we had stayed the night to the second floor Pre-op suite where we had been told to report. It was certainly chilly, but Julia was in her usual good morning mood and was content to coo and gurgle in the warmth. I tried not to think too much about the day ahead, as there was little to feel but the dread of the marathon day that lay before us.

Interestingly, we got there before the staff did and were directed to one of the waiting areas by a volunteer. It wasn’t long, however, before the whole floor was abuzz with activity. We were brought into one of the pre-op rooms and they took a few vital signs and asked a lot of questions to be sure that her condition hadn’t changed from the consult on Friday.

We changed her into a little hospital gown and the whole time there was an interesting dichotomy: Julia was cool – her parents were a mess.

Then there was the consult with Dr. Walters, the Chief of Cardiovascular Surgery at Children’s Hospital. We’ve only met him once before, and we were again blown away by his concern and expertise. He took some time to answer our questions and also outline the “touchpoints” of the day where he would send word of the major milestones during the procedure. We would get word when the anesthesia lines were in, when the first incision was made and when she was put on and taken off the heart-lung bypass.

I don’t want to overstate his ability, but various staffers later told me that they have come to Children’s to work under him specifically. He is clearly a brilliant man, but had the humility to know where that talent comes from. We took a little time to ask God for a successful day with a minimum of discomfort for our little girl.

Then came the gut-wrenching moment that we were told that we needed to give Julia her kisses and let her go. A good medical staff knows that there is more than one patient in the mix when there is a child involved, so they gave us some time and privacy to get our mess together after I laid Julia in Nurse Colleen’s arms. Like you may have seen on yesterday’s Facebook or Twitter post, it was unquestionably the hardest thing I’ve ever done. And it’s probably not the first time that I’m going to have to, in one way or another, lay my kid’s life into the arms of another. That’s a blog post for another day.

Then came the waiting. And waiting. And waiting. We diverted our attention with the myriad well wishes on Facebook, text and comments on the Blog; and probably gave ourselves whiplash when a hospital staffer would walk on the floor in anticipation of news. The eight hours kind of flew by as I look back on it; but I’m sure it dragged interminably as it was happening. Nurse Colleen would come out with a reassuring smile and give us some morsel of information, and I would dutifully text it out to a distribution list of 20+ people, Twitter and Facebook. I’ve honestly lost count of the places and people who were praying for us, but you’ll be seeing a few of them in an upcoming post as well. And yeah, we all cried together when we got the news that her heart was beating again.

Then Dr. Walters came out and gave us his assessment of the surgery. He was very pleased with the structural repair (you can get my thumbnail sketch of what he did in a video post I did in November). He was a little more watchful of a not uncommon condition where Julia’s heart rhythm had to be helped along with a pacemaker. It typically resolves itself over the next couple of days, but we’d love your prayers that it does.

Not long after that, we were taken for the “drive by smooch” as they took her to the elevator from the surgical suite to the Pediatric Intensive Care Unit (PICU) where she would begin the long recovery process.

We had made it a point to prepare ourselves for what we would see at that moment. We’ve seen the pictures on the blogs and websites of parents who have done some good work to demystify the procedure. I even got a kind message of preparation from the father of the little girl that we had met through Dr. Weinhouse.

But it changes in your heart when it’s your kid. It’s no longer an abstraction. You know at that moment that you have some serious skin in the game.

Okay, gang. It gets a little ugly now. I’ll want you to scroll down a bit…

Believe it or not, what you are seeing is a good outcome of open heart surgery. And as I look at the images again, I have to admit I’m getting a little water in my eyes; because all my untrained eyes can see is a mass of tubes, sensors and wires with my baby in there… somewhere. The staff had to have seen our shell shocked demeanor, because they went to great pains to tell us that she looks great (and somehow managed not to cross the fine line into patronization).

The rest of the story has yet to be written, but the last twenty-four hours have been kind of a blur. Julia has recovered from the surgical anesthesia and has opened her eyes and moved all of her extremities. Neurologically, she’s good. In fact, she’s been moving a little more than the staff would like and they have adjusted her pain medicines to keep her quiet and comfortable. Today is commonly referred to as the “coast” day where they give her a chance to chill out and recover.

She responded to my kisses on her forehead (my goatee is kinda pokey!) and she seems to calm when we sing to her. She’ll give your finger a squeeze and open her eyes when she hears Mom and Dad in the room. The staff has removed the first tube from her called a Left Atrial Pressure Line, which directly monitored the pressures in her heart to make sure that the repairs were holding the way they should. She has also begun feeding via a nasal tube, which is a big win! The sooner we can move her from IV to mamma’s milk, the better!

Here’s the reality: Julia has to tell us and the staff when she’s ready to come home, and she will speak to us in a language that I can’t comprehend. It’s a dialect of blood counts and chemistry, oxygen saturations, pressures, feeding volumes, fluid output, and a dizzying array of numbers and waveforms that takes an army of medical professionals to decipher.

We are assured that she will ultimately be fine, and are glad that more seasoned professionals are at the helm on this. Because in my limited experience it has shown to be as much an art as it is science – the doctors in an intricate dance of fluids and pharmaceuticals with our Julia to ultimately let us bring her home. We are on track for that homecoming, the date of which is yet to be determined, but is in the seven to ten-day range.

I honestly thought that yesterday was a marathon, but I find now that I was mistaken. Yesterday was the sprint. Now we are in the marathon, and it will take stamina and strength that Jocelyn and I have never tapped into. We need your prayer – especially on the day that they remove the breathing tube and will be unable to give Julia a sedative to keep her still. We need your prayers to hear from the doctors when the “dance” takes a different cadence from our expectations and they continuously adjust plans and respond to new outcomes.

God is in this with us and this little family continues to feel his calming presence – especially through your kind prayers and notes of encouragement. We are hanging on and will not come home until our little girl says so.

Thanks again for your care and encouragement!

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We Have A Dream

On January 16, 2011, in Julia's Journey, Personal, by Chris

I suppose I’ll never understand on this side of eternity why one is given a certain burden and another gets something totally different. Fortunately, there are plenty of blessings and encouragements mixed in – if you’re watchful – to take some of the edge off. Nonetheless, no one would have convinced me or Jocelyn five years ago that we would be gutting it up to hand our child over for something so traumatic. Fortunately, no one has had the temerity to tell me that this procedure is routine – that would have illicited a harsh response from me. Routine schmoutine. This is my kid you’re talking about.

The whole thing seems at its face so nonlinear and even arbitrary that at times it makes my head hurt trying to connect the dots. Three years ago, I was just getting to know the woman who would eventually be my wife. Eleven months ago, the prospect of fatherhood jumped above the horizon, with the scary news of Julla’s Down Syndrome and the heart defect coming quickly on its heels. It’s been at turns rewarding and exhilarating and terrifying; and never in my life have I felt so responsible and so helpless at the same time.

But we honestly haven’t had to look very far for the blessings and encouragement. We have been utterly enveloped on all sides with text messages, Facebook posts and e-mails. The encouragement from all over the world has been absolutely humbling. Before we left, our teenage neighbor brought Julia a teddy bear that consoled her years before when she was in the hospital. Even as I write this, Jocelyn’s sister, Jennifer, is heating up a homemade lasagna and providing the extra pair of hands that is absolutely invaluable at times like this.

So on the eve of the day celebrating Martin Luther King, that most marvelous of dreamers, Jocelyn and I are adding a humble little dream of our own. More than anything, we want our daughter to live and thrive and be a small reflection of the love that God has for us and the world. But in order for her to thrive, we have to do the hardest thing a parent can be asked to do: we need to entrust her to God and to the skills of people we barely know. It’s a little earlier in the game than most parents have to deal with, but in our moments of clarity, we know that it’s ultimately a good thing.

It is our deepest conviction that this little girl is going to make a massive impact on the world for Love. We don’t yet know the shape of that impact; but as we weave our prayers with the hundreds of others that are being lifted up for our Julia, we anticipate only good things – even when they come in improbable and often uncomfortable packages.

I’m not sure how often I will be posting over the next few days, but keep an eye on the righthand side of the blog for the latest updates. You can also follow me on my Twitter feed. I’ll be shooting text messages to it regularly.

On behalf of the entire Cook family (all three of us!), please accept my most heartfelt thanks for your prayers and concern.

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Ready to Rock…

On January 14, 2011, in Julia's Journey, Personal, by Chris

It was a busy day for Julia at Children’s Hospital of Michigan as she went through all of the Pre-operation screening. Bottom line, she’s been cleared for the surgery scheduled for Monday. Let the prayers shift into overdrive… NOW!

That’s the happy ending. The day didn’t start out with the sweetness and light we would have liked, however. Julia had the sniffles for the last few days and it had been the source of some concern for us, since any infection would have delayed the surgery. We understood the doctors’ rationale of wanting to avoid going into major surgery while the patient was fighting an infection, but I don’t think I’d be surprising any of you if I were to say that we’re kind of done.

Couple our natural nervousness with a serious spit-up incident as we were getting Julia ready this morning, some crazy bad traffic on the way to the hospital requiring some creative detouring on my part, and you get some idea of the desperation of our prayers for relief as we were headed down I-75 for the hospital. Needless to say, we were a little keyed up.

So how did God answer those prayers for relief? How did the day turn the corner just a little bit? God’s provision came in the form of the confident smile and sunny disposition of a long time friend who came and got us out of the waiting room to start the intake process. I’ve known Colleen for years and after thinking about it, there is no one on this earth that God could have sent that would have given me more peace. Unbeknownst to us, she had been watching the blog and knew that we were scheduled to come in for testing. She had been watching for us for the past few days; and it was that kind of personal attention and encouragement that Providence… well, provided, right when we needed it the most.

The rest of the day has become pretty routine for us. Jocelyn and I started breathing again when the anesthesiologist listened to her lungs and gave us clearance for the surgery; but Julia sailed through the exams and went through the EKG like an old pro.

There was the not-so-fun stuff as well. The chest x-ray was a new experience in frustration for our little girl, but it didn’t last for very long. The technicians told us that they prefer when the infants cry because it’s as close as they can get to the “take a deep breath and hold it” directions they give the older patients. And I gotta say that Jocelyn was stylin’ in the protective apron they gave her!

The blood draws were obviously painful to watch as well, especially since kids with heart conditions have notoriously slow blood flow. She had to get three pokes to get the volume they needed, and it really pulled at a dad’s heartstrings to see his little girl cry. It’s mostly from having her extremities held in place as they drew the blood – she likes to kick and squirm a lot of the time! In the end, you get through it.

With the medical preparations behind us, we will be spending the weekend preparing ourselves for the “marathon sprint” to the finish line. The surgical staff has told us to plan for a stay of a week to ten days, but there are times that patients are discharged sooner. That “sooner” option is looking pretty good to us, but we know that it’s largely out of our hands. So we’ll be going back to God over the next several days asking for a safe operation and a speedy recovery.

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The Gift of Prayer

On January 13, 2011, in Julia's Journey, Personal, by Chris


Our family got a beautiful gift from some friends today. Apparently, the plan was hatched a few days prior when some of the staff of my church decided to set some time aside to pray for Julia and her surgery (and for her parents to come down off the ceiling).

The debate still rages on as to the ultimate effect of such an exercise; but something amazing happens when people come together to focus their attention on God. To admit, if even for a moment, that a situation is completely out of our hands and recognize that there may be a larger will at work can be a very healthy thing.

I do it all the time (pray for folks, that is), but it is an entirely different feeling when the focus of the prayer gets turned on my family. It truly was humbling to witness my little girl as the focal point of an overt act of love and humility. People turned aside this afternoon, took their focus off of their work and the myriad distractions and concerns of life and asked God to move with love and concern in Julia’s life.

I may never know in this life if the cosmos were affected one bit by the exercise, but I can tell you that we were. Moreover, I can say with (hopefully) humble confidence that God smiled today. Thank you, my friends!

This is also a thank you to the friends all over the world who are praying for our Julia. You’ll be meeting some of them in a post coming very soon.

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