"...an incision...drill a dime-sized hole in the skull...tube inserted in the brain, draining the ventricles..."
The surgeon's words swim together; I hear as tho underwater, my senses waterlogged from too many tears and too many sleepless nights and fear-congestion that seems backed up into my brain. He is so cold, so matter-of-fact. Dr. Noel Tulipan, one of the country's top neurosurgeons, but I am not comforted.
I don't want to put my baby into this surgeon's hands.
I don't want to put my baby into anyone's hands.
If God Himself stood before me explaining how He would perform the surgery,
I wouldn't want to put my precious baby boy into His hands.
And there's the rub.
So, God, if You hold all things in Your Hands, are You saying You're okay with all this? Are You telling me I'm supposed to trust? To let go? To praise You in this pain?
Thus begins the stepping away. Not all at once. Sprints and staggers and stumbling.
Backing away from The One who holds all things in His time-liberated Hand.
I dreamt of Caleb before he was born. Weeks before he was due to arrive, I got a glimpse of him, a Spirit-vision glimpse of who he was to be, and the depth of love I would have for him. I woke shaken, sensing an impending doom and an exhilarating passion. I told Kevin every detail, journaled pages & pages, called & recounted it to my sister... The words & visions captured in black-on-white pages carried me through, for years.
Bringing hope. But not enough for letting go.
Sunday before we were to pass our firstborn into another's hands, Pastor Hardwick calls us up for prayer. Mega-church thousands press forward, weeping, praying, crying out, beseeching; a cacophony of voices interceding for the tiny, struggling life we cradle. Brother Enoch asks to hold him, and reluctantly, keeping a hand upon him, I press my swaddled baby against his chest. The voices whirl and roar around me, dizzying, blurring, tears pouring, knees buckling. Kevin's hand is on my back, and I lock my legs, resisting that which I did not recognize, a power I had yet to taste.
And there is hope. But not enough for trusting.
The surgery takes place on a hot Nashville summer morning. It's bone-numbing cold in the surgical ward. Nurses wheel him away, wrapped in ducky-blankets, paci between his lips. I cry and cry and cry, to the emptying of my soul. Kevin holds me, shaking, gulping, aching with noble efforts to be strong. Finding baby Caleb in recovery, hours later, is perhaps even more excruciating. Tubes and wires and gash-stitched shaved head, tiny bloated body splayed out, more stitches on his swollen tummy, and everywhere the purple bruising of tubing pushed under skin to drain the brain-swelling fluid from his skull.
We live in the hospital with him this time too. One of us always by his side. Learning things new parents shouldn't have to know: how best to insert a new IV, how to recognize a 'blown' one, how to check the VP shunt pump, how to dress the seeping wounds on our newborn's skull and abdomen...
A week later and amazingly we are home. The world has shrunk, down to the small space in our little duplex, and the baby healing in our embrace. Friends and family visit, meals are cooked, bills are paid, and each day is an eternity of cuddling the priceless baby given us. Soft colorful hats shelter our eyes from the garden-hose lump of tubing on his head. At the first re-check appointment we are assured all is well, the swelling will take awhile to go down. When in another week his skull is still soft and bulging, we take him back in, but are reassured by the neurosurgery resident, the swelling will go down in time.
We are new parents, naive, longing to put this nightmare behind us, so we strain to convince ourselves: this must be how new babies are. Content, sleeping all the time, smiling, quiet... Lethargic? Glassy-eyed? A third time, we take baby Caleb in to be seen. But this time I'm not listening to the placating words of the resident doctor. All mama-bear, I stand with head-swelled baby in arms, "I am not leaving this radiology department until I see with my own eyes the swelling in his ventricles is down!"
Hours and tests later, Kevin cradles lethargic baby boy in one arm, wife in another. We are called into a private room. A slew of hospital staff stands before us; caseworkers to break the news, doctor to explain the procedure, nurses to whisk baby Caleb away yet again. The MRI scans reveal the horror of a waking nightmare: where our child's brain should be, there is nothing but black space. Cerebrospinal fluid compresses brain tissue against skull, leaving millimeters, perhaps a centimeter intact.
It is Friday night, with only the on-call neurosurgical staff available. But there is no time for second opinions or favored surgeons; his tiny life is slipping away. With infection in the cerebrospinal fluid and a failed shunt, our baby is rushed into the NICU and prepped for an early-morning emergency surgery.
So we sit terror-stricken all night, praying, weeping, begging, cajoling. The deal-making is in full force.
"Anything, God! Anything! Just don't take him from us! O God, please...please..."
Tho it can't seem possible, this surgery is even more gruesome. An 'external drain,' they call it. His head is wrapped in gauze, his face puffed unrecognizable and pale. A tube extends from the yellowish and red soaked wrappings, continually oozing, frequently replaced, till finally just a patch of gauze covers the hole in his skull. We can't pick him up, move him, cradle him, so delicate is the balance of tubing from his brain. Yet I climb up in the NICU bed, gingerly cuddling close to stroke his skin, sing his lullaby, let him nurse. The staff bring in bottles for feeding, asking if I have pumped milk, and I angrily shoo them away. I've freezer's-full of pumped milk from too many days of horror, but no bottle can comfort my baby like Mommy can.
With each passing hour I hold tighter, and I trust less.
Early Monday morning, the surgeon comes into the NICU before his shift is over. He's not happy with how slow the fluid is draining; he wants better progress before passing 'the case' along. So he cranks the drain lever open. Within minutes he is gone, signed off. Suddenly our previously-lethargic infant is screaming in agony, writhing, vomiting, retching.
"Spinal headache" the nurse tells us, "happens when cerebrospinal fluid levels change...ummm...rapidly."
Nothing comforts him; the piddly pain meds don't diminish his high-pitched screams, and we are beyond distraught, in agony with him, sobbing, crying out for relief that doesn't come.
Is this the pain I ought praise You through, God? Is this pain in your Hand?
Well, never mind the trusting, and the letting go. I'll watch like a hawk; from now on, I'll take care of things.
And so I take it all.
All the responsibility, all the fault, all the regret.
All the anger, all the bitterness.
Sorrow turns to fury.
I trust no one.
The third surgery is a week later. A third hole is drilled in Caleb's skull, a third tube passed into his brain, a third nightmare of anesthesia & intubation & stitches. By now I am hard, cold, angry, suspicious. Everywhere we look there is error, malpractice, apathy, impatience, disrespect. I am terrified to go home, and yet bitterly furious at...at...at the hospital, the failed shunt, the resident doctor, the compassionless nurse...
I am bitterly furious
at
God.
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And then, I am afraid.
click here for more on 'TheCalebMiracle' -
part 1, part 3, part 4, Watching Him, and A Freed Heart
