Best Laid Plans…

On October 2, 2010, in Julia's Journey, Personal, by Chris

Well, we thought we had all of the stars lined up, but our Julia has decided she’s not going to wait until her teens to drive us crazy. Before she was discharged, there was one hoop our girl needed to jump through. And she unfortunately ended up in “face plant” territory on this one. I’ll tell you the story ends well, but there’s a little delay in her going home.

Babies born prematurely (and especially those with Down Syndrome) can have all kinds of challenges when it comes to riding semi-upright in a car seat. They may not have proper muscle tone to hold their head up and keep their airway clear. As a result, they can experience a drop in their heart rate and oxygen saturation in the blood. So the American Academy of Pediatrics recommends a car seat test before discharge from the hospital.

We had brought our car seat in a couple of days before and were waiting for the test, and considering how well Julia was doing, the entire staff thought would be a perfunctory exercise. When we got to the NICU this morning, we found that she did not pass the test the night before and they needed to re-run it. The test consists of strapping her into the car seat and monitoring blood oxygen saturation. The standard is that she must maintain it at around 85% or better for at least an hour.

The nurse got her into the car seat (Julia wasn’t wild about that), and we watched as the number on a monitor go up and dip down – our attitudes in direct proportion to the number. We finally decided that we were stepping off of that roller coaster ride. We went down to the hospital’s atrium, had a Starbucks and prayed, giving the entire situation to God. His will and not our own – a particularly tough prayer to offer when it comes to your kid.

Bottom line: Her muscle tone is not yet developed enough to support her airway in an upright position, but the news isn’t all bad. She’ll be assessed overnight for a car bed that will provide a temporary fix until her situation rights itself. The only delay is that it’s a weekend discharge and it will take a little time to marshall all of the resources to make it happen. They have already assured us that there is a car bed available and we should be able to take her home and continue the adventure tomorrow.

It’s amazing how friends can come around to comfort through a disappointment. I sent a text message telling of the disappointing delay to some of our tribe and we got all kinds of responses – including an offer from a friend who has contacts with an ambulance service that could have provided a complimentary ride home (I thanked him, but pointed out that we couldn’t tie up an ambulance every time we needed to get the pediatrician). Perhaps the sweetest, though, was from our friend Marie:

Sorry – But she will be another day stronger and we have eternity to love her!

We have decided to take the long view on this one, knowing that Julia will be home – very soon – and this is just another twist in the adventure that God has us on. There will be many more like this in the months and years to come.

Sorry, sweetie – but it will be soon!

We’ll pick this up tomorrow, and I’m feeling there’s going to be a more satisfied ending to the day!

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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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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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