By LISA BICKNELL
Over the weekend, we celebrated the birthday of a special little boy who just turned six.
This time of year always provokes a lot of reflection. My husband and I were just talking last weekend about what we were doing in the days before our grandson Clay was born.
He had been diagnosed in utero with Congenital Diaphragmatic Hernia, and doctors had said there was no way to know the implications of that until after he was born. They said he could have a relatively small hole in his diaphragm that could be patched easily, and he could be out of the hospital in a week.
Or, his liver, heart and bowel could be pushed so high into his chest that his heart and lung development would be compromised to the point that he would have a very difficult road to recovery- if he even made it.
We hoped and prayed that the first prognosis would be true for Clay.
Those things were in the back of our minds as we drove to the Red River Gorge the weekend before he was born. Hannah and Eric were with us as we all got out to enjoy the last of the pretty fall days.
The next day, she had a doctor’s appointment, and the decision was made to do a Caesarian delivery that afternoon.
Family began to show up to wait, and they put us in a room to ourselves. I remember how bright the sunlight in that room was. We were upbeat and hopeful as we waited, even in our uncertainty.
When our seven pound plus boy made his arrival, he was immediately intubated by a team of nurses who were on standby. His parents had been told that they wouldn’t get to hold him right away. I can only imagine what a disappointment that was, but they remained positive.
Clay seemed pretty stable on his first day, so my husband and I went home feeling encouraged.
The next day saw a change in the weather as a cool front moved through, bringing clouds and rain. We were driving through it when Hannah called from the hospital, and she sounded upset. Clay wasn’t doing so well, and doctors had asked permission to put him on an ECMO machine, which is extensive life support that does the work of the heart and lungs. Without it, they said, the baby had little chance of making it.
On his third day here in this sometimes harsh world, doctors felt they had a window of opportunity to do surgery to move his liver and spleen, etc., and repair the hernia. A team of surgeons gathered to operate in a corner of the NICU. They said Clay was too sick, too fragile, to move to the operating room.
I remember walking the halls that day in a peculiar fog of fear and faith. My emotions were stormy as I battled my internal fears with every promise I could think of from the Bible. I know others were doing the same.
Finally, one of the nurses came to tell us that the surgery was over. I could tell from her voice that what the doctors had found when they operated was not what we had hoped, but the surgeon spoke to us to say Clay had a “nub” of a left lung and about half of a right one. They thought he had at least a fighting chance.
For a few days, at least, they wanted to let the ECMO machine, with all it’s pumps and hoses, do the work of living for him, giving his body a chance to rest and heal after the surgery.
There were some complications on ECMO, and after about a week, the doctors felt it was time to begin to trial him off that machine.
Thank God, he made it through that transition to breathing with just a help of a ventilator, which he would need for a couple of years more.
I’ve shared much of Clay’s story in my columns over the years. How he was finally released from the NICU for the first time at eight months, and sent home on a home ventilator and oxygen.
How a corner of my daughter and son-in-law’s home basically became an intensive care unit.
Those first few years saw a lot of progress as well as a few setbacks, but the trajectory of Clay’s story has been mostly upward.
Gradually, the medical equipment was sent back to the companies from which it came.
Slowly, life settled down to a new normal.
This weekend we celebrated our big boy’s sixth birthday.
And I can’t help but be amazed by the incredible progress he has made. How he loves basketball and other sports, how he loves school and reading, fishing and video games.
How he’s strong-willed and stubborn at times, but shoot, he’s had to fight hard for his life.
Clay enjoys life so much. He’s got a grin that would surely melt the hardest heart.
And his voice! Even when he still had the tracheotomy, he learned to force air around it and speak. Now that it’s closed, he’s quite the talkative little fellow. And loud!
Six years out from his arrival, I don’t think as often about how the whole CDH experience shook our lives.
Circumstances were out of our control.
Sometimes we think we’re steering our lives with a pretty steady hand. We know where we are headed and nothing is going to stop our arrival.
But sometimes the storms of life smack us around, and we wonder who in the world is running this ship.
I once thought I had clearer answers for all those hard questions.
I don’t claim to understand why things happen as they do, but most days, I still believe there is One who does.
And until I understand the whole picture, I’ll be grateful that we are not alone during our storms, and I will celebrate with a full heart the days when the sun beams down upon us.
There are so many of them-even when the winds howl and the rains pour.