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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So Far, So Good…

On October 7, 2010, in Julia's Journey, Personal, by Chris

I took a couple of days off, putting down my camera and computer, and simply enjoyed the new addition to the family. A new rhythm is beginning to develop in the house, and I can’t express how marvelous it is to have Julia home. There is not a lot of sleep; we just haven’t gotten the hang of it yet. But there is the joy of not having to schlep to the NICU twice a day; and knowing that, for now, our daughter is safe.

Not that we are not spending time with doctors. It is amazing the crush of appointments our little girl has been a part of. But here is where I’m glad to give you some very encouraging news: Julia had an appointment with a blood specialist regarding her platelet condition, who told us that her count had almost doubled since the last blood sample. This is great news, since we have some evidence now that the whatever was destroying her platelets is beginning to resolve itself. We’ll need to take another blood count on Monday, but we felt like this was a great win and one thing we can take off our list of concerns!

Perhaps the most encouragement came from our meeting with Dr. Elliot Weinhouse, a specialist in pediatric cardiology. We first met him a few months ago at Julia’s multidisciplinary consult (a collective meeting with all of the disciplines surrounding Jocelyn’s pregnancy and Julia’s heart and genetic condition). I have met him a few times since then and have been impressed with his deep concern not only for the child, but for the well-being of the parents as well. His regard for life can only be described as… reverence. These are more than cases for him, as evidenced by the pictures of all of the children he has treated over the years that cover all four walls of his office. In our first meeting with him in June, he used Julia’s name without our prompting him; and from that moment, his stock went way, way up in our minds.

Julia went to meet with Dr. Weinhouse today for an echocardiogram (basically an ultrasound of the heart) and a consult on her situation. An Orthodox Jewish rabbi in his off-hours (I believe), he spoke in glowing terms of the essential beauty of the structure of Julia’s heart, despite the malformation that was again confirmed in the ultrasound. He described her ventricles – the lower chambers and the area of primary concern – as symmetrical and sound. The blood vessels entering and exiting are well formed and free of defect, and the conjoined valve that will eventually be separated is sealing very well.

From a symptomatic standpoint, Julia is showing no signs of distress in her breathing and none of the discoloration or feeding issues that one would expect. We were especially encouraged when Jocelyn noticed one of the notes on his chart: “So far, so good.”

The game between now and the surgery is a race to a body weight of eight and a half pounds or so before the symptoms manifest themselves to the point of danger to her life. The ugly truth is that without intervention, Julia is on a slow boat to congestive heart failure – a term that is not quite as scary as it was. The process will be a slow one, and delayed by short-term drug intervention. But we have our marching orders: Get this kid to eight or nine pounds, and surgery can proceed most safely. If you are the praying type, please ask our Creator for a long delay in the symptoms so that Julia’s soul can remember as little discomfort and distress as possible.

On a more personal note, fatherhood is beginning to settle in on yours truly. I carried my daughter today through the examination – from the weigh-in through the echocardiogram to the EKG. I have heard her squawk in indignation at the pokes and prods by the NICU staff and was beginning to feel a little less sensitive to them. But this morning I was thunderstruck when I saw tears in my daughter’s eyes for the first time as the technician pulled off the leads of the EKG.

Amazingly, after everything that we have been through thus far, today was the first time I cried for my daughter.

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UPDATED: Prayin’ for Platelets

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

 

*** Update: Julia had her transfusion and early lab tests after are promising! Her platelet count went from 17 (quite dangerous) to 145 – well toward the normal range. Further monitoring will be required, but this is a very good first step! Thank you so much for your prayers! ***

Hey Gang –

There is a little wrinkle in a day of otherwise good news that could use your prayers and good thoughts. After a couple of great breastfeeding sessions today, I noticed a furrowed brow on our nurse, Laurie. She came over to us and said that Julia’s platelet count was down.

This important blood clotting component has been suppressed since Julia was born. I remember hearing mentions of it as I listened in on doctor’s rounds over the past few days. But her platelet count had now dipped to a level where intervention was required. We spoke with the doctor and he is not yet concerned about the origin of the issue, but is more focused on avoiding the complications that low platelets can bring.

The cause is most likely a relatively benign disagreement between Mom & Julia’s blood type that will work itself out. There are, however, rarer possibilities that are just no fun to think about at the present moment. Additionally, this could be connected to Julia’s Down Syndrome.

Right now, a transfusion of platelets to fortify Julia’s flagging supply is in order. It’s a simple band-aid for right now, but that may be all that’s needed. Of course, we have to wait over the next few days to see if the problem sorts itself out or if further intervention is warranted.

In the meantime, we have given this situation to our Creator and Redeemer, asking Him to do what he has done before: create more platelets and redeem the disconnect in Julia’s body that is keeping that from happening. Jocelyn and I are fine – well, not quite fine. But we are weathering this well, knowing that there would be a few dips in the road as we navigated this.

By the way – don’t be too disturbed by the pic. It was a routine weigh-in last night and Julia was a little cranky that the nurse had taken her out of her nice, warm jammies. The good news is that her weight is up!

Thanks for your prayer and support on this!

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Scare & Selah

On September 14, 2010, in Life, Personal, by Chris

Okay – Important Safety Tip: Make sure you are buckled in when you tell God, “Bring it”. It’s more than likely you are going on a heck of a ride.

Let me tell you about the last 36 hours. Monday AM was looking good as the members of the Prayer Task Force for the EACH Initiative came together at Landmark Church in Hazel Park. We got a lot done and I jetted off in full blown “production mode” to the next meeting, cell phone smoking along as I drove (ed. note: always use hands-free mode and don’t dial out when you’re driving kiddies!). The beginning of the ministry season is most often like this, with lots of communication to make sure programs and initiatives are launched for maximum impact.

So I was burning along from meeting to meeting, building momentum from one to another; and only dimly recognizing that the day had me in its grip. I was about to meet with a couple going through a difficult situation and my phone rang.

It was Jocelyn.

She had gone to the OB for a routine exam and they were concerned about her blood pressure – 150/100…

…and the baby didn’t seem to be moving very well.

They told her to go immediately to the hospital for extended monitoring.

Ten minutes later I’m in the car wondering what we were in for when she got there; and in my moments of panic, whether my kid was going to survive the night.

The triage team assessed the situation, gave Julia a clean diagnosis (my kid is scaring me to death and she’s not even a teenager yet!), but admitted Jocelyn to the ante-partum ward for monitoring over 24 hours. “Rest here, and let’s see if that blood pressure will come down,” they said.

I got Jocelyn settled in and put the list together of what she will need for the overnight stay. I got to the house (totally breaking the no cell phone rule) and find three shingles from my roof sitting in the driveway. I went down to the basement to switch the laundry and the dryer is malfunctioning and making funny blue sparks. Great.

And in the end, the most confounding thing was that there was no one I could reasonably get mad at. I hate that.

But now, 24 hours later, my girl is home – relegated to a modified bed-rest regimen for the rest of the pregnancy. Her blood pressure slowly crept into a more healthy range through the hours of uncertainty; and the baby still in her womb, according to the docs, “is doing beautifully.” There were even moments of lightness and fun as we spent the time together between visits from the medical assistant to get another reading. And tonight, as she sleeps next to me again, I have time for a little reflection.

There’s an old piece of Hebrew poetry that calls out across some three thousand years right into my crazy 36 hours. They were the words that Jocelyn rested upon yesterday as she stepped into the doctor’s office:

Find rest, O my soul, in God alone;
my hope comes from him.

He alone is my rock and my salvation;
he is my fortress, I will not be shaken.

My salvation and my honor depend on God;
he is my mighty rock, my refuge.

Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.

Selah

And there it is – Selah. It’s exact meaning is lost in antiquity, but as near as the scholars can figure, it was a word that meant “pause here”. My theory is that the words were so heavy and meaning-full that took the human brain time to apprehend their weight; so the psalmist gave folks a little interlude to think them through.

As the computer keys give way to the weight of my fingers, right this moment, I have an opportunity to once more wrestle with those words. To read them again and then just sit with the scandalous promise of a God who never changes – even when everything else seems to.

Find rest – not in a favorable blood pressure reading, but – in God alone.

I will not be shaken – even though my stuff and the house that contains it might be once in a while.

Pour out your hearts to him – if you dare – for God is our refuge.

God didn’t change – I did. In the face of circumstance and misfortune, I let myself get a little faked out. Coming back to him and sitting in those promises is a chance re-attach (or perhaps more fully attach) to the larger reality at work redeeming, reshaping, re-forming and reconciling this seriously warped situation and billions of others far weightier than mine.

Selah – yeah. Feels good.

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Bring It.

On September 12, 2010, in Life, Personal, by Chris

I launched this site some five months ago and have had an itch in my head ever since. I had always promised myself, having been an avid peruser of writings by authors far smarter and more articulate, that I would not add to the noise – in print or online – unless I had something truly unique to say.

Fact of the matter is, I’m still waiting. I’ve always been something of a perfectionist, never wanting to do anything unless it measured up to my narcissistic standard of “world class”. But sometimes, you just have to start and cut yourself a little slack as you push ahead.

There was a bigger reason for my delay in beginning this blog, however: I didn’t want to begin while my world felt like it was imploding. Let me give you a little of the backstory.

Almost two years ago (722 days, to be exact), I married a woman that I was convinced did not exist. Jocelyn was the wife that God had planned for me, and I still marvel at the fact that she chose me! Only a year before our wedding, we had not met and I was in the process of making peace with the possibility that, at forty-one years old, God’s plan for me was a life of singleness.

Jocelyn and I spent the next eighteen months in relative wedded bliss, even beating the prevailing attitude that the first year of marriage is the toughest. We were so well matched on so many different levels that our worst disagreement wouldn’t have made it out of the bottom tenth percentile of many couples. We were even navigating through the first trimester of her pregnancy and the attendant waves of nausea that were more often the rule than the exception in Jocelyn’s case.

And then there was the day that it all went sideways. March 24th of this year, we went in for a routine ultrasound meant to eliminate the possibility of a problem with the pregnancy. We came away with something that we frankly hadn’t signed up for. There was an anomaly in the thickness of the Nuchal Fold (called a “soft marker”) that points to a statistically higher possibility of Down Syndrome. The doctors suggested more testing to confirm or refute the results; and after a lot of prayer and soul searching, we agreed to an amniocentesis a few weeks later.

The word from the medical community quickly went from “there is an elevated possibility of a problem” to “we’re pretty darned sure there’s a problem”. During the ultrasound for the amnio, the imaging specialist found a heart defect and the genetic test results eventually confirmed Trisome 21 – a third DNA strand attached to the more typical 21st pair of 23 chromosomes.

I have had only a few screaming matches in my walk with God. They are done in solitude and usually leave my vocal cords pretty raw, but I figure that God wants it all – the good, the bad and the very, very ugly. My only pointed question to him that sunny spring day when we got the preliminary (and normally pretty darned accurate) results was:

What.          Are.          You.          Doing?

I got no (audible) answer that day, but my mind has since been wrestling with the brief words I’ve caught in my moments of reflection and from those prophetic oracles that come from my tribe of trusted friends and confidants. Here’s what I’ve come up with so far:

For over five years, I’ve overseen the Care initiatives at a church of over ten thousand people. I sit on the board of an organization in India that reaches out to the poorest of the poor and currently feeds, houses and educates over two hundred kids who would otherwise have to survive a life of petty crime and prostitution. I’ve seen my share of sad stories. My message to people in pain is hopefully not overly simplistic, and hopefully delivered humbly:

The world needs you.

We need you to move into this challenge and experience the full spectrum of emotion that God has for you in it. We need you to approach this season with the attitude of a student and not a victim. We need you to surround yourself with a trusted community who can encourage and sustain you through the discomfort that will undoubtedly come. This season may be a short one or may last a lifetime; but we will need you to plumb the depths of it, find beauty even in the midst of the struggle and add your stories to the narrative of the One who redeems the world’s brokenness. And in so doing, speak with a credibility that can only be had through suffering a broken world well, knowing that this is only the beginning of a much greater adventure.

That, or something very much like it, is what I tell people in crisis. I wonder if God is leading Jocelyn and I into this wanting me to start putting my money where my mouth is.

So here I sit in the rocking chair of my daughter Julia’s room as my wife takes a much needed nap from the fatigue of the ninth month of pregnancy. We are only a few weeks away from truly knowing the results of God’s craftsmanship. Even now, we still sit in the tension between knowing that God could re-knit our daughter right down to her DNA, or he could choose to do something even greater in us (and in the world) through a little girl with Down Syndrome. In the end, my deepest conviction is that this kid is going to have a massive impact for good.

Worries of the “ninth-month-of-pregnancy” roller coaster and the financial, medical and emotional implications of Julia’s heart defect still catch me by surprise sometimes. But here in the cool of this September afternoon, I can be thankful that Ultimate Good has captured my heart and continues to change the questions I ask of eternity. Today, with still a little fear, but with growing confidence in the God who pursues me, I say:

Bring it.

And I thank you for joining our little family on the new adventure that God has for us.

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