Tuesday, November 1, 2011

Simple lives can get complicated in a hurry

One day we’re hiking the colorful ridges of Red River Gorge and watching our youngest daughter and niece complete a zipline tour that they’d won in a drawing. 

The next day we’re rushing to the hospital where our oldest daughter is being prepped for a C-section because her blood pressure has spiked. 

She was scheduled for surgery a couple of days later in the week, but you know what they say about the best laid plans. 

I imagine any mother feels anxiety when her daughter is about to give birth, but, since the first trimester, we’ve had more reason for worry than usual.

That’s when doctors noticed that the baby’s heart was too far to the right.  After further tests, they quickly diagnosed him with CDH, or congenital diaphragmatic hernia.  We had never heard of such a thing. 

After a bit of research, though, my heart was flooded with fear.  This condition was a very real threat to the baby.  His lungs would most likely not be developed fully and he would require corrective surgery to reposition whatever organs had slipped through the diaphragm into his chest. 

There was a bit of hope, though.  It appeared on the ultrasound that only his stomach was up there, which would mean less lung compression.  It seemed that little Clay might have a milder case of CDH. 

So.  Monday’s delivery was a tense time. The baby had to be intubated immediately.  His momma didn’t get to even see him, much less hold him, as they whisked him away to the breathing room to try to stabilize him and begin evaluation of his condition.  We expected those things, though it didn’t make them any easier. We knew it had to be this way for the baby’s survival. 

Thus began an emotional roller-coaster ride of a week.  Monday afternoon saw the baby eventually stabilize after some uncertain first hours, then Tuesday morning saw his condition trending downhill.   

The decision was made to transition him to an ECMO ventilator which would essentially do all the work of his heart and lungs for him, while buying his little body some time while the surgeons repaired the diaphragm.    

X-rays revealed that little Clay’s hernia was worse than expected.  The baby’s liver, spleen, and bowel had all slipped through the diaphragm into the chest cavity. 

Wednesday was surgery day.  The doctors said that there was a chance that the baby might not have a left lung behind the organs.  If not, they said there would be no need to even perform the corrective surgery.  There would be nothing else they could do. 

 The wait during his surgery was excruciating to say the least. 

Three eternal hours later, thank God, the doctors reported that little Clay had a “nub” of a left lung, enough to “work with.”  They said they were pleased with the way the hernia repair went, although the hole in the diaphragm had been too large to simply sew together and had to be patched.

The next few days were filled with ups and downs as the baby’s lungs bled and filled with fluid and the doctors constantly tweaked blood thinners and potassium levels.  They had to administer platelets and change out the entire ECMO circuit once with the threat of stroke-inducing blood clotting.

Little Clay was born on Monday.  By Saturday, he’d survived more threats to his young life than most people do in decades of living. 

The doctors decided to turn up the ECMO machine and allow his little body to simply rest for a couple of days before attempting the process of weaning him off the machine. 

We were able to catch our breath a bit and relax enough to get some much needed rest over the weekend. 

This past Monday found little Clay surviving his first week.  And we’ve survived too, with the help and prayers of hundreds of concerned people, some of whom we don’t even know who’ve said they have the baby on their mind night and day. 

The evening news is full of the worst people can do.  The kindness and compassion of the ordinary person going about their daily lives often goes unreported. 

I’m here to tell you that I’ve been amazed and humbled at the concern folks have shown us during this tumultuous week.  We are particularly thankful for their prayers.

People say, “What can I do?”

 I say, “Pray.”

I refuse to say, “Just pray,” like it’s an insignificant act.  I know better! 

We are hanging in there.  Little Clay is hanging in there, thanks to excellent medical care and the mercies of our God. 

Doctors began yesterday to gradually turn down the ECMO ventilator.  This involves a tedious process of adjusting it down, waiting, drawing blood to test his blood gases, then deciding if he can handle another decrease of the machine. 

As of today, Tuesday morning, he has handled the decreases well.  Much remains uncertain, but we are so so thankful for his progress.

3 comments:

  1. The glory of God is awesome Lisa. I pray for you morning, noon and night......

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  2. I'm praying for the little one-the momma-daddy-and all of you.

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  3. Oh my goodness! I found you on the NaBloPoMo list and wanted to learn about CDH. I had never even heard of it until just now. My prayers and those of my preschool class at church in the morning go out to your tiny grandbaby.

    Praying, praying, praying for your families strength (especially your daughter's) in the coming weeks.

    Following you now.

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