A Cold Hard Place

August 2008
One day my unborn child, who had already enchanted me, was handed down a sentence, unearned and unjustified, and it became my passport to the molten center of my life’s core. In the beginning the adrenaline fueled by my fear protected me. After that, I cried and I cried until I was empty and speechless, and then I slowly learned a new language... one that gave me hope of a way out, one that reminded me that there may not be one.

And now I wait. I watch my baby’s body war with itself. I feed off the brief glimpses of normalcy... a coo, a cry of hunger, a dirty diaper. I stare into eyes that do not know what I know, that do not fear what I fear. I wonder if the coin tossed high will land on my call, and if I will still be able to gaze into these eyes tomorrow. I am afraid to leave her, afraid to go home, afraid that she will die while I shower, or kiss a different child goodnight.

I pray, (and perhaps I bargain and make undeliverable promises). I walk alone into the temple with my paltry sacrifice, and I go one on one with God. I am terrified that He will ask for this child, and that I will not be able to answer.

Specialists, with stacks of medical degrees, confer at her bedside. They can not give me the answer. They can not write the end of this story for me. These chapters that hang between living and dying are fraught with needles and drugs, wires and tubes... the life support tools of the trade. Fancy machines monitor her score with numbers blinking red and ever changing. Alarm bells ring for more troops and battalions charge in to rescue her in these moments.

I am so tired in my head. I feel like we have been marching for days on end with no food or sleep. I feel as though I might drop her before we reach our destination, and that if I do, this will all be over, and her death will go on forever.

So I sit, awake in the cold hard space between life and death, watching her, waiting on her. I touch her soft warm skin, bruised and torn. I lean in close and sniff her baby scent. Heaven’s perfume still lingers on her. I swallow down everything that is outside of this breath of her. I push it into the tight ball that has taken over my stomach. I cannot let anything distract me from memorizing this instance of her... because I’ll need it someday, no matter how this story ends, I know I’ll need it.

(I read this post and it took me back in time to a place I’ll never forget. She does a much more eloquent job of explaining it, that cold hard place where a parent goes to wait for the answer.)

The Blessing of Tragedy

I have a confession to make.

There is a good chance that I would have been disappointed for a very long time with my baby girl if not for the tragedy of the sixteen weeks I spent aching to know if she would live.

Before her, I had given birth to two "perfect" boys. Two boys who grew and developed on or ahead of schedule. Two boys whose every moments of life were celebrations of the miracles of babyhood. Every milestone they reached reinforced my feelings that I had created two of the most talented and brilliant people ever to be born. I was so blessed I thought.

Then came along a baby girl with Down syndrome and the world as I understood it came to a crashing halt. Who will ever love this person I asked myself silently and my husband aloud. What will become of her?

I could not see the future for my eyes were clouded by the confusion and sorrow in my heart.

Hours after her birth they whisked her away to the NICU bootcamp and for the next three weeks getting her to eat enough to come home became my number one priority. She could not cooperate... a faulty baby who could not latch on, who gagged on the bottle or fell asleep after three swallows. She can’t even eat my brain screamed at me on and off all day, each day. What will become of her? My heart sank deeper into a despair fueled by fear, anger, and shame.

And then the Lord God reached down and slapped me so hard my head spun.

Congestive heart failure. An echocardiogram revealed a life-threatening condition called a coarctation of the aorta. Oh, I had known, been told while she was still in utero, that she had a broken heart... a complete AV Canal defect that would require open heart surgery at around six months old but this new development meant an immediate surgery. Her aorta would be cut apart, the narrow section removed, and then the open ends would be sewn back together. Forget bypass, instead her whole body would be deep cooled and completely shut off, a controlled thirty minutes of death.

I stopped worrying that she would not go to college or get married and started worrying that she would not live to ever sleep in her own crib.

She was transferred to a major hospital where there was a surgeon capable of making the repair. Within days of her arrival she contracted a bacterial infection that ripped through her kidneys, blood system, and brain.

Still though, like an ancient pharaoh, there was a part of my heart that was hardened to the idea of Down syndrome. A very soft ugly whisper in my mind asked, would it be better for her to die? After all, what will become of her?

I’m guessing by that point God was pretty disgusted with me. He took my hand and walked me through a sorrow-filled hell on Earth. He showed me dying babies. He showed me parents who were hurting perhaps worse than I was. He showed me many things that are harder to accept than Down syndrome.

As she lay in the hospital, my boys turned two and five. Life went on without me. Summer gave way to Fall and the wild things outside prepared for their long sleep. Death outside, death inside. Death wormed its way into my heart. I thought about how there is just one second between the hope for tomorrow and the finality of death today. That second stayed with me for weeks. It changed me. Forever.

As I write this, the floor above me is bang bang banging as she jumps like mad in her Jumperoo. I hear her squeals of delight. The question, “What will become of her?” now holds the promise of wonderful things. She is alive, do you hear me? Alive!

And that is the greatest blessing of all.

Warriors

We were drafted. My only way out would have been to take her as the first casualty. Before I played this game of Risk, I knew I wouldn’t deploy that sniper. So now, here I am, far from the battlefield still dreaming of little shattered bodies.

This time last year I was living in a NICU chair, angry and sad, but still unaware of the real battles that lay ahead. I didn’t know yet that my baby and I had entered a war. I didn’t know that her aorta was too narrow and wreaking havoc on her heart and lungs. I didn’t know that a teensy bacteria could find its way into her brain and eat away at it. I didn’t yet understand that death really does come for babies.

Sarah, Rita, Jasanna, Miracle, Jayshawn, Bella, Savanna, Ryan, Kimani, Ashlyn... our battalion... some died, some made it out, some are forever wounded, some are still enlisted. I wonder if their moms feel like I do. I wonder if their dads play Guild Wars and kill fantasy creatures in dark livingrooms.



I wonder if I can ever get the shrapnel out from under my skin.

(Thanks go to my dear husband for providing the screen shot of his Guild Wars character (named after me, awww) standing over her latest trophy.)

We're Not In Kansas Anymore, Toto

I recently wrote a post, Not Like This where I explored my feelings about how hard it would be to have your baby die in a very busy, very public situation, like a NICU. What I didn’t tell you is that my husband and I had to go through the mental exercise of making decisions about a Do Not Resuscitate order and removing our child from life support. We had been counseled that it was better to know what you would want to do prior to a situation arising, than to be forced to make huge decisions in a highly-charged emotional state of mind (uh, yeah, like I wasn’t already in that state of mind...)

Take a minute to try to imagine your child being kept alive by a ventilator... his brain’s neurons no longer firing or his heart beyond repair.

It wasn’t hard for me to conjure up. Not even two weeks earlier the mother of a five month old baby girl who had aspirated on spit up during a nap, brought me in to “meet” her child... a baby who was alive now only because of a machine that pushed air in and out of her lungs. There was no need for the t-bone clip to keep the vent in place because this baby wouldn’t fight the tube... this baby would never fight anything again. She looked like she was sound asleep. If only.

Standing there, I remembered with guilty intimacy the guttural cries that had come from this young woman just days earlier when the neurologist broke the news to her that her baby was brain-dead. “No,” she had wailed, “noooo, noooo, noooo” Over and over and over again the protest rose from deep within her, and it had sunk and curdled inside of me. It happened on a Friday night around 9 p.m. My own sick baby was asleep in her PICU crib. I heard that sound, that mother’s anguish, and I had to leave. I went home. I could go home, but I could never abdicate my involuntary and unfortunate role of witness.

My husband and I pretended to make up our minds about various scenarios. I won’t drag you to tears with all the details. I’ll share just one. I would be the one to do it, to take the vent out. Because I couldn't live with the memory of someone else doing it.

So what’s the difference between Dr. Tiller, the respiratory therapist that extubated that five month old and ended her life, and me? If the situation is one where the baby will, without a doubt, not be viable after birth (off the mommy-vent), then is it so wrong for the parents to want a private death?

Not Like This

On occasion I have given thought to how I might want to die. The results of such mind exercises are always the same; an unexpected bullet to the back of head or I fall asleep one night and don’t wake up. I don’t end up in the hospital in either scenario, nor do I have a chance for goodbyes.

It is one thing to imagine from the bleachers, beer and hotdog in hand, how you will be "out" but quite another thing to actually be the player in the game who is facing another strike. It is even worse when it is your child going up against the pitcher, instead of you.

During the early days in the hospital, I did not genuinely feel that my child could die. Yes, she had a major heart defect, but there was a plan for this in place. When her second, more menacing heart defect was detected, I felt the pressure of possibility weighing down on me.

Within days of that discovery, my baby became very sick, the kind of sick that made her whole body seize. I could hardly stand to leave her, but there was nowhere to rest my head in that place. So I would sob in the car all the way home, wondering if she would be ok.

But I hadn’t yet felt the reality that she might die. Oh, I was scared of it but deep inside I still had that nebulous sense of that not being something in my world. Like it just wasn’t part of my brain’s schema.



The call came around midnight. The caller id flashed straight into my heart... the NICU. Just the ringing was making me shake. We were afraid to pick it up. When I did, the very first thing the doctor said (blurted out) was that my baby was ok. They wanted to do a lumbar puncture and needed me to come down and give written permission for the procedure.

For the first time, but not the last, I wondered how they tell you that your baby has died.

A week or so later, my baby girl stopped breathing in my arms and the reality of it sank in. Suddenly there was a whole new category of thoughts in my brain. The tentacles of horror crept up my legs and arms, and twisted around me, squeezing me tight.

I am an emotionally secluded person. Because of this, my husband and I were married in a secret ceremony ten months before our white wedding. For me, promising the rest of my life to my love needed the privacy that such an intimate moment deserves. My child’s return to God would require that same sort of privacy.

You won’t get that in a NICU or PICU. Every time my daughter’s body would begin to fail, a swarm of doctors, nurses, and respiratory therapists would come and "work" on her. I would stand out of their way and pray, "Not like this, Lord, please not like this." I wanted them to save her so badly I could taste the coppery ache for it in my mouth.

Because if she had to die, I wanted it to be our little secret. I did not want any other person to share it. I wanted to be alone with her... holding her, kissing her, and whispering love in her ear.

Stolen Embrace

“Do you want to hold her?” The nurse asks me. I do want to, but I am nervous. She is very ill now, deeply poisoned by an army of invisible creatures. Her body is so weakened that it has been skipping and faltering. There is a zigzag of wires and tubes connected to her, all feeding her body something it needs to survive this. There is a gaping hole in her flesh just above her stomach, where the stitches surrounding her feeding tube have slipped out. Through the hole I can see her dark red, almost brown, shiny stomach beneath the skin edge. I look away and face the nurse.

“Yes” I say bravely. I settle myself into the chair they have placed beside her metal and plexiglass bassinet. The hard, wide chair is set awkwardly close to the equipment because my baby’s lines don’t go far. I tuck blankets under and around me, trying to mimic the feel of a nursery rocker. It takes me a moment to drape a sweet smelling cotton blanket over me, arranging the pink-edged swath across me to form a barrier between my perhaps germ-infected clothes and my daughter’s fragile body. As I get settled, the nurse adeptly wraps up wires, moves feeders and medicine pumps, disconnects the heater, and scoops my child out of her bed into my waiting arms.

I study her beautiful face. She is so dainty with a rosebud mouth, tiny nub of a nose, and huge dark blue ringed eyes. I want her to smile or somehow indicate that she is happy to be with me, that she knows me to be different from the hoards of others who handle her but she is too sick for such affections. Her six and a half pound body feels very heavy to me. I realize that she is perfectly still, not breathing. Bile and panic rise in the back of my throat.

“She’s not breathing.” I manage to squeak out to the nurse who is hovering over us. The nurse quickly turns to consult the monitor screen. The numbers reassure her.

“She’s ok,” the nurse replies over my shoulder.

“She’s not breathing,” I say again louder with strong emphasis on the word not.

The nurse glances at the screen again. She puts her hand on my shoulder to soothe me and says, “She’s ok. It’s ok.”

A baby girl in our pod has died this morning. Infection, our shared enemy, destroyed her overnight. Not more than an hour ago I was with that mother and child as the mourning process began in the hospital’s small “family” room. That mother and I had passed a bit of NICU time together waiting on our daughters. She held out her baby, already dressed up like a little princess, and I accepted the bundle because no other reaction seemed appropriate.

It has only been a few seconds. The nurse trusts the monitors and she thinks I am having a reaction to the morning’s sorrow. But now I know what it feels like to hold a lifeless baby and this feels exactly the same. I am shaking from an overload of adrenaline in my system. I want to throw my baby into the nurse’s hands. “She is NOT breathing,” I hear myself shouting. My arms will not obey me and I cannot lift her up.

Finally the monitor corroborates with me and sounds the alarms. Immediately the nurse whisks my baby away, up on to the open bassinet, and begins to bag her with a portable mask and oxygen pump. I stare at the monitor watching for my baby’s return. It comes swiftly. The nurse assures me that Kimani is ok, that the apnea has passed.

It is not ok though, because now I don’t want to hold her anymore.

Nursing - Part 1

It is a Friday...Random Acts of Poetry Day...so I will start off with a not-quite-a-poem that is sort of the happily ever after to the story I will tell you today (which is a response to L.L. Barkat's Blogger Be Brave post.)

Finally
We lie together
stomach to stomach, and more
Delicate nose lifts up
‘ore rise of swollen breast
Eyes are watching
one another, locked
in shared fragility,
Sweet milk is flowing
to the rhythm...
suck suck swallow breathe
United in the moment,
eyelids swaying
Both mother and child
are coaxed to sleep
by love’s nourishing bonds...
suck suck swallow breathe

Once upon a time, when she had just arrived, she suckled against me, instinctively drawing in the liquid gold. I imagined she was imprinting, smelling, tasting, feeling softness of skin, connecting...mother...mother. And then sleep stole over her.

(Picture deleted... one of my guy friends hinted that he was "a little freaked out" by the picture that suggested a newborn was nursing...sorry boys!)

She did not eat again that night. In the morning they took her from me. I found her in the NICU and offered her more sweet milk. But, as if she were content to sleep her life away, she suckled no more.

Hovering over me the words came like spikes. “She doesn’t know how” “Her mouth is too small.” “Her tongue is too big.“ “It’s too much work” “It’s the Down Syndrome” they said.

I sat alone in a tiny room, with an occupied sign on the door for a lock, and fumbled with clear tubing and other parts. Smooshing hard cup to breast, I flipped the switch on the metal motor. Whoosh, whoosh, whoosh. Sprays of milk captured in small plastic bottles. Whoosh, whoosh, whoosh. Sprays of tears captured in an olive green cotton maternity shirt.

By four days old, feeding had become a dance of missteps. Despite the thin snake-like green tube taped to her cheek, climbing up her nostril, hanging down the back of her throat and winding into her stomach, she showed interest in my offerings. She would root toward me, opening her mouth and poking out her tongue. Her mouth couldn’t open wide enough. Her tongue wouldn’t stay down. She could not latch on to me no matter how I squeezed or flattened my flesh. We’d go through the motions until she tired out and nodded off, or until I felt guilty enough to move to the next step, the bottle.

Although she was my third baby, I had to be guided along...told how to hold it, how to move it and what not. There is a trick to holding the cheeks and applying pressure under the chin that is supposed to elicit a good latch and suck. It felt forced and my tiny baby gagged in agreement. My hands were shaking and I was overcome with sorrow.

Still hovering, nurses attempted to console me, “They are almost all like this.” They. They. Children with Down Syndrome...They. I wanted to yell out that my baby is not a “they”. She is more than a syndrome. She is her own person. But what do I know about this and besides I was choking on bile by then anyway. The nurse could see that I was frustrated and near tears and she wrote on the day’s medical sheet that mother was not accepting the diagnosis well.

RAP participants:
Nancy's Awaken
Jim's August Evening
Andy's Would You Have Known Him
LL's Scarlet
Erica's Red
Megan Willome

Crossing the NICU Styx - Part 2

(If you haven't read part 1, you probably should start there.)

From across the water a shining figure appeared with an entourage and great fanfare, and even Cerberus whimpered in his presence. An angel of the Lord, I thought hopefully. He stared down at my child and the foreign words tumbled out, “Coarctation of the aorta... removal of the section and reconnection, deep hypothermic circulatory arrest...stopping blood flow to the organs, av canal...heart lung bypass...pericardium...sewing patches into the ventricles.” He spoke for some time describing his plan to secure the golden coin and the great risks it entailed. I could not listen to him, for my own voice was shrieking in my head, “He’s going to kill my baby, he’s going to kill my baby...” With sudden clarity I saw that he was not an angel. He was just a man, a man with no scars on his palms.

There are moments in life when you freeze, dig in your heels, and refuse to accept reality. You screech to a stop and the spinning world crashes into your back with its full force, knocking the air out of you. In a split second its pummeling affect leaves your body torn between puking and suffocating. With all your might you push back against it, struggling to reverse it just long enough to undo the tragedy that has befallen you. When that striking moment stretches into days and days stretch into weeks, you realize that your core is being smelted by God the Blacksmith. It hurts so bad.

Throughout the days and nights, I could hear the prayers of those in the Land of the Living beseeching the Lord with her name, Kimani... Kimani... Kimani. Hundreds, maybe thousands of voices pleading for her life. Mine too.

On Day 91, the gates of Hades opened up to receive my daughter. Cerberus drooled in anticipation. He would not let me pass with her. Somewhere beyond she would lay nearly frozen, disconnected from life, while the surgeon’s hands worked to fashion graceful conformity from a grave aberration. I gave her back to God that day. Still though, I called down every promise I could remember from His book. Then my husband and I, alone among the strangers on the river bank, waited the day through to find out if we had our baby or not. If not... if not... then part of me would forever stay there in that dark place.

Finally the heart surgeon came out to find us. His radiant smile gushed through my veins. He placed a glittering gold coin in my hand and I clutched it tight.



I paid it to the ferryman just as soon as I could and he loaded us into his boat. We made it almost half way across the rushing waters, almost. I was so focused on the light coming through the door to the way out that I did not see him coming. Cerberus. He lashed his tail at her, ripping her out of my arms. She fell into the water. No, not water... blood, poisoned blood... blood sepsis.

I screamed at God. I am no Job. I told Him the truth. "I am close to insanity now," I cried. "I need to be released now," I begged. He replied, "Go find her." He did not mean my daughter.

She was just down the bank a ways with her infant son. A mother like me, but not. A brokenhearted child like mine, but not. She needed me. Together we watched over our babies as their bodies labored to recover. Charon tormented us, flipping golden coins in the air. Heads they live, tails they die.

No, it doesn’t work like that I tell her. There is a God I tell her. Her eyes are hesitant but she wants to believe me.

After 113 days in the abyss, Kimani, all seven pounds of her, safely crossed the NICU Styx and entered the Land of the Living. I thank God everyday for sending her back to me.

Crossing the NICU Styx - Part 1

Five hours after my daughter was born into a comforting pool of warm water, strangers in scrubs came and arrested her. They carried her down into a world where life is in limbo. Her crimes were a broken heart and a narrow aorta. Her sentence would be long. Surely my sins were greater than hers...perhaps this was my punishment?

I followed her and found myself on the wrong bank of the river Styx, wandering lost, searching for the right coin to give Charon so that he would carry my baby back across to the Land of the Living. He rubbed a cold hand on her stomach. If only she would eat. Maybe if I gave up on nursing and let her have a bottle. Maybe if I gave up on the bottle and let her get a tube in her stomach. If only food were the answer.

My sweet daughter presented every sacrifice she could. On Day One she offered up her tiny hand and accepted the needle coursing with antibiotics. As time went on she would give over her arms, legs, head, and neck to the various needles. She submitted to multiple nose tubes, throat tubes, and a g-tube in the hopes that the food and oxygen they supplied would give her the strength to cross over.

But Cerberus attacked her, snapping his bacteria-filled jaws down on her. Not once, not twice... but again and again he cut his teeth into her, slobbering on her, filling her with poisonous creatures invisible to human eye. They tried to kill her but the needles flooded her with even stronger weapons of destruction.

And me? I sat there staring across her, across the river at the doorway to the Land of the Living and I shook with fear, with agony, with anger. I wanted to rip it all off of her and scoop her up in my arms... and run. The raging desire to escape with her was quelled only by the knowledge that she would be dead before we reached dry ground. I felt my inner self be slowly crushed and compacted. There was nothing left to me but a heavy rock in my stomach and my faith in God.

I was not alone on the river bank. I saw other mommies with other babies with other tubes and needles who had committed other crimes. And I saw Cerberus wrap his scaly tail around other tiny bodies and pull them backward to a place where only God could follow. I cried the tears of vicarious trauma... a suffering I’d never known existed.

Charon tapped a bony finger on my baby girl’s chest. Somewhere within her, somewhere inside the greatest artery, or perhaps hidden deep in a pumping ventricle was the golden coin he wanted. There would be no trip back across the NICU Styx without it.

(Continue to Part 2)