"Sunshine on my shoulders makes me happy"

I’ve been trying to get some work done for the paper this week, but it’s hard to concentrate on anything besides the baby.

This is a lovely day, though, warm enough for me to bring my computer out to the porch, where I sit in the swing with the sun warming my shoulders.

Our chocolate lab dozes on her side, stretched out on a bed of leaves.  Joplin, our calico kitty, is sprawled under the swing, looking contented just to watch the leaves fall. 

It feels good to be still, just to sit and listen to the peaceful sounds around me.    A light breeze flaps the scarecrow flag hanging from the porch and stirs just a bit of a tinkle out of my wind chime. 

The leaves continue to fall, and they land with a soft splash. It won’t be long until our shade maples will be completely bare.     

Whatever would we do without the balm that is sunshine…without the warm feel of it that soaks into my fuzzy pullover, or the golden look of it that chases away the shadows? 

It’s good to know that the sun is always shining…somewhere. 

Maybe it’s selfish of me, but I’m glad the sun is shining today…on me. 

Really, what's the point of worrying about anything?

I have been a worry-wart in days past, but I’m learning that few things waste more energy.

Besides, it seems that the things you worry about don’t happen—on the other hand, those things it never occurred to you to worry about might. 

For example:  In 2004, my hubby was diagnosed with a rare form of thyroid cancer.   A brief work physical showed that his blood pressure was a bit high, and the nurse suggested he go to a doctor to address that.

I called and made him an appointment, and the doctor performed the first thorough physical Robin had had for years. It was then that he found a small nodule as he checked Robin’s thyroid.

The doc said it was probably nothing, but he recommended that he have an ultrasound, which led to a biopsy, which led to the dreaded diagnosis. 

We had never heard of medullary thyroid cancer, and it certainly never occurred to me to worry about anyone I knew getting it. 

This past summer, Hannah went to the doctor one fine day to find out the sex of her unborn child.  The ultrasound revealed that the baby’s heart was a bit too far to the right.  The doctor sent her to a high-risk clinic in Lexington where they confirmed that the baby had a serious birth defect called CDH. 

Again, whoever heard of such a thing?  Of all the things I can find to worry about in a day’s time, I never once thought to worry about something like this. 

I’ve wasted a lot of energy fretting and mulling over possible scenarios that never played out. 

However, I’ve noticed when the threats are real, I find strength to deal with them as the need arises. 

Some people say that they become greater worriers as they get older, as experience teaches them what a dangerous place the world can be. 

My experience has kind of been the opposite.  Even when I was a kid I worried a lot.  I’m still cautious by nature, but, by the grace of God, I’m not consumed by fear like I once was. 

At my age, I’m realizing I don’t have that much time to waste.

Celebrating the small things

This has been one of the few days we haven’t been to the hospital since the baby’s been here.  I’ve missed him so much!  But it’s a long way down there, and I guess we don’t have to go every day. 

When we do go, all we can do is take turns standing by his bedside for a few minutes and holding his tiny little hand, but every time I look at him, it seems the little guy gets a tighter grip on my heart. 

His parents still haven’t got to hold him, but they’ve been changing a few diapers.  Eric even got to change a nice poopy-filled diaper.  I’ll bet he won’t soon forget where he was the first time he got to do that. 

Clay continues to improve.  He’s been completely off blood pressure medicine since this morning.  I’m pretty sure the doctor said just three or four days ago that he’d probably have to take it the rest of his life. 

His pain medication has been cut in half, then in half again, and his milk intake has been nearly doubled in the past couple of days, though he’s getting it through a tube in his stomach. 

He’s come a long way in the past week.  He’s got a long way to go, but we’ll celebrate every step toward wellness and we’ll continue to be thankful. 

We’ve been blessed with a great show of love and support from the community.  Living in (or near, I should say) a very small town, it seems that nearly everyone knows about and is concerned about this child. 

Almost every time I go to the grocery or stop by the dollar store, I end up in tears, overwhelmed with the kindness of people who stop to tell me how much they’ve been thinking about all of us and praying for us.  

“Thank you,” seems an inadequate response, but it is a heartfelt one! 

Life lessons from castor beans and falling leaves

The leaves are coming off so fast now.  They deposit a yellow carpet on the ground beneath our maples that turns brown in a day or two. 

My impatiens have been bit by frost and look devastated.  Ditto the castor bean plants planted at the edge of the garden that were supposed to repel moles.  They stood strong and vigorous just a few short days ago.

As the natural world prepares for a long winter’s nap, I feel oddly at peace about it.  There was a time when I’d have complained about how everything looks so dead now.  The dying back of flora and fauna can seem depressing. 

But as I walk around outside, I’m realizing that this is really seedtime.  All those castor plants will soon begin to pop ripe seeds loose when the sun warms the pods in which they are housed.  On warm late fall days, you can literally hear them—they sound like popcorn. 

 The seeds will fall on the ground and many of them will sprout come springtime.

We’ll have way more castor beans than we need and will most likely have to plow some under and chop some down.   

We’ll mow over the leaves on the ground a few times, and they will settle into the grass to decay, where they will begin to fertilize next year’s lawn. 

Nature teaches us so much about life.  The end is only the beginning, and life is nourished by death.  I can be at peace with fall because I know springtime comes. 

 

Random and barely coherent thoughts about the baby and being well

As things settle down a bit with our newborn grandson Clay, my thoughts still turn continuously to his healing.  While the doctors adjust medications and the ventilator, there really isn’t much they can do to make his lungs develop.  The rest of it is up to time and the Good Lord.

The next several weeks will be a season of waiting.  The doctor estimated today that the baby has ½ to 2/3 of normal lung capacity.  They think he’ll need a ventilator for a few months, at least. 

We naturally hope and pray that Clay’s healing will come quicker. 

I’ve been thinking a lot about healing in general the past few days and how it extends far beyond the physical body, to include our minds, our emotions, and our spirits. 

When one part of our lives becomes broken, ill, or out of balance, the rest of us suffer as well.

With daily schedules turned upside down, sleep schedules out of whack, and regular mealtimes disrupted, the whole family can begin to feel unwell.

 For Hannah, Eric and the rest of us, this has been a crazy time.

They’ve both been holding up very well under the circumstances, though.   I’ve been amazed by their strength, and my heart has been warmed by the closeness I see between them.  The strong bond between them seems to be growing stronger every day.

It’s not easy camping out in a hospital.  There’s little privacy, and it’s hard to get comfortable.

The cafeteria food is ok, but it’s not home-cookin,’ that’s for sure. 

Often it’s the little inconveniences like these that really test a marriage. 

The hubby and I have spent several hours a day at the hospital nearly every day since Clay’s birth, but we’ve had more opportunity to come home than the parents.    

How relaxing it is to walk around outside and breathe fresh air.  What a gift it is to get to kick up the leaves that are falling so fast. 

I went to the garden and cut a couple of heads of fresh broccoli this morning.  I made broccoli cheese soup, and took some to share with Hannah at the hospital. 

This simple act was nourishing not only to our bodies, but my spirits. 

Resuming the activities that we sometimes consider tedious, like cooking and laundry, is such a pleasure when previous days have been so tumultuous.  The rituals of nurturing bring healing to me. 

I’m so looking forward to the day Hannah can be home with her little family, going about the ordinary business of living. 

The beauty of healing

Since spending the past nine days visiting UK hospital nearly every day, we’ve had plenty of time to admire the photo mural in the lobby.  We sometimes walk by it several times a day. 

The wall’s covered with photos of life being lived normally—there’s a man on a tractor and a blonde toddler sitting at the top of a playground slide.  There’s a cat sunning itself on a fence.  There are pictures of falling leaves and a slow moving stream. 

These images are reassuring. They are reminders of more carefree days, and they stir hope that times will be better again soon. 

The artwork in the hospital lobby no doubt cost a lot of money.  Besides the photo board, there are sculptures and a large water feature that produces a soothing sound.

Occasionally a volunteer tinkles the ivories on the piano in the lobby. 

Some might argue that these expenditures were frivolous, but I’ve found that they brighten my spirits.  They bring color to long days spent within beige walls in the company of strangers.

I’ve noticed a lot of other folks pausing to admire the artwork.  I’ve seen them smiling too.

I probably wouldn’t have appreciated the photos as much if I’d only been here for a short visit with someone I expected would be coming home soon. 

However, when dealing with a crisis like this, the art has been calming.  I’m glad someone argued for the extra dollars to put it there. 

Come to think of it, I’m appreciating a lot of things more these days.  Like people who invest their lives in the healing of others.  Like those who figure out how to build an ECMO machine that functions as our baby grandson’s lungs until his are capable of working with the help of a ventilator. 

Today was a big day, another tense day of waiting, but we are thanking God that little Clay is off the ECMO machine.  His lungs are tiny and inefficient at this point, but I’m so happy to report that he’s made it past another hurdle. 

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.