Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.
I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
I handed off the box of Kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand his words.
After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.
Alex and Ben came in a bit after I’d gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn’t care what was wrong with her so long as she made it out alive. I begged God to take me instead. I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.
Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.
After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep.
Unsurprisingly to no one, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.
I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.
Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.
Fucking bitch.
She told me to “relax” and then left.
I tried to “relax” which was as useful as punching myself in the face with a hammer. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.
I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.
Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.
Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation services.
Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.
(also: why are people in the Lamaze videos always naked?)
But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
No.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.
“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”
Again, she could have gracefully bid be farewell. But no. She kept on keeping on.
“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.
I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!”
I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.
I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”
And just like that, we went from critical to discharged in less than 36 hours.
It’s 1:30 in the morning, and we’re having the worst week since my daughter’s diagnosis of Type 1 Diabetes. Insane blood glucose numbers, ever-increasing insulin needs, ketone testing…and the endless blood sugar testing. My daughter is a pin cushion, and I hate myself each time I jam another needle into her skin, when she winces, but doesn’t say anything, when it hurts badly enough that she says “Ow, that one hurt,” it feels like razors cutting my heart to ribbons.
170 days since the diagnosis. 170 days since I leaned against the wall in the hallway outside the emergency room and allowed myself the luxury of five minutes of tears. 170 days since I called the ex-girlfriend and the midget’s father in the middle of the night and told them to get to the hospital NOW! 170 days since I watched them strap my daughter to a gurney and load her into an ambulance. 170 days since I heard the term “PICU” and realized that’s where my daughter was going. 170 days of trying to readjust to normal, and realize that nothing was ever going to be normal again.
170 means at least 700 finger pricks and 700 injections. And that’s assuming that every day we only test four times and give four injections. Which never, ever happens. When she runs high, I give insulin corrections, then check again to see if she’s come down. When she runs low, I give sugar, then recheck to make sure she’s gone back up. Not even six months in and she’s had 1500 holes poked into her body.
I’m sitting here at 1:30 in the morning waiting for it to be 2AM so that I can test her again, and then lay down and try to sleep, but I know that I will instead spend the rest of the night waking up every thirty minutes to make sure she hasn’t gone low in her sleep. If she does, she doesn’t wake up, which could mean…I can’t even bring myself to type the word, can’t bring myself to use it in conjunction with my beautiful, precious daughter…but it would be very bad.
On the other hand…when she runs high all night like she has all this week, I think about all that sugar in her blood, and the damage it’s doing to her body, knowing that it’s coating the blood vessels in her heart and her eyes and her kidneys, another layer of damage, bringing her that much closer irreparable harm. It sickens me, makes me physically ill, makes me want to scream and cry.
170 days of wishing that I could take her place for each finger stick and injection.
170 days of wishing I could take away her type I diabetes.
hen I showed up to the pediatric transplant unit for my first day of residency, it was mercifully dark and quiet, the nurses flitting purposefully about as stealthily as they could. The only sounds I could make out beyond the steady mechanical hum found on any hospital unit were the occasional IV beeping, signifying, perhaps, an occlusion in the line or that a bag of fluids was now emptied. It was quieter than any unit I’d ever been on before.
Reds and blues and bright yellows lined the hallway and I noted cheerful balloons painted on the walls as I thought to myself, how wonderfully non-clinical it all looked. How perfectly child-like. It seemed only fair that if a kid were sick enough to have to be in the hospital, at the very least, they could feel at home.
I spied a television with a DVD player and PlayStation stashed in a corner, and marveled at how this hospital really had been designed with children in mind. The unit fridge was stocked with puddings and chocolate milk and chips and graham crackers; all stuff my own two-year old would have happily eaten. I felt as though I might actually be in some sort of elaborate daycare facility rather than a major children’s hospital. There was even a McDonald’s in the basement.
It wasn’t until I got my first assignment -a baby; severe liver failure- and saw that my one-year old patient was the size of a three-month old that these children weren’t having much fun. These kids weren’t on vacation. They weren’t at daycare. They were sick as hell. Some were well on their way to dying.
And still, even as these children died, life went on outside.
People bustled by on the streets, knowing, perhaps, the name of the hospital and the types of patients, but never knowing that fear. The fear that lives in your gut once something horrible happens to you and you know how in the cosmic scheme of things, there is no “fair.” They’d never know how terrible it is to listen to children -innocent children- in pain. These people would never have to voluntarily inflict pain upon their own flesh, their own blood, because sometimes life deals you a wild card, and you do the best you can.
They’d never know about the secret places in the hospitals, the PICU’s; the NICU’s where small, but real lives routinely hung in the balance. Where cosmic scales made absolutely no sense. Where kids lived and where they died.
This secret place, the land of tears.
When they’d think of hospitals, they’d think of the places where old people went when they were ill. Where your appendix or a foot or two of colon would be removed and you’d go home. Cured. Where you’d splint your broken arm, x-ray a broken leg, and bandage up that nasty gash on your finger. Where old people died.
Hospitals weren’t places for children. Because in a fair and just world, kids wouldn’t get sick and kids wouldn’t die.
Kids wouldn’t be born without brains, or with only part of their brains, or born too early, too soon to live. Babies wouldn’t be born still. Kids wouldn’t need dialysis or organ transplants. No kid should have to know the torture of chemotherapy. No parent should have to send their kid to the morgue. No family should have to plan a funeral for a child.
Death, dying; transplants and cancer, those are things that should affect the old, the people who had loved and lost, married and had their families, kids, grandkids; people who had lived.
—————–
My universe is less random than I once thought it to be.
When I birthed my sick daughter, Amelia, it just so happened to be where the very same children’s hospital where I’d previously worked had just opened up a satellite unit. At three weeks of age, she underwent neurosurgery, and for the second time in her life, she became a patient there. First in the NICU, then the PICU.
The monitors blipped intermittently for my daughter, gown bearing the same logo I’d seen so many times before, when her heart rate dipped or she’d forget to breathe and watching them, I’d shake her tiny feet, whispering breathe, baby, breathe into her pink shell of an ear. And then she would inhale, those glorious oxygenating breaths filling her lungs as the monitors would once again blip normal vitals. The alarms would stop shrilly alarming and yet another crisis would wink at us in the rearview mirror as it passed.
Her father and I signed furtively in and out of the NICU, then PICU after we were buzzed in by some unseen, nameless, faceless person into a locked, secret unit; mere ghosts of ourselves. We’d drift in and out for the tenth or sixtieth cup of coffee to keep ourselves awake and functioning, getting gluey food from the cafeteria to put into our mouths and chew, never tasting it. Sometimes, our paths would converge with other shells of parents. We’d smile knowingly as we passed; the kinds of smiles you smile without any trace of joy. Those commiserative, “you too, eh? Well, FUCK,” smiles, not the, “hey, friend, how are you?” kinds.
We learned later that we were the lucky ones. The ones that were buzzed out of this unit with our daughter in her carseat, strapped tightly in and screaming her head off.
The unit of sadness, of broken dreams and tears. Laughter and heartache.
When I pulled up to the hospital yesterday and walked through those sliding doors, whirring officially shut behind Amelia and I with a snap, I was calm. I’m not sure how I paint myself here on my one-dimensional blog, but I’ve never been prone to anxiety or cases of the vapors, and typically in the moment, I’m about as calm and collected as they get. This was no different.
I gripped my phone like a talisman and strode over to the desk where sure enough, a new volunteer greeted me to help me find my way. The scent of lilies was heavy in the air and I tried mouth-breathing (one of the few perks of having been a barfy pregnant lady) to stave off the smell. Calla lilies are one of my favorite flowers, but the rest of them remind me of all of the friends I’ve buried.
Amelia, refusing to be held, led the way through the hospital, past the gift shop where I bought her heart necklace, past the chapel where I prayed for her, past the cafeteria where I remember laughing for the first time, my throat rusty and dry, the laugh unfamiliar, past the NICU and PICU, her little legs chugged along, sturdily running so fast that we had to half-jog to keep up with her.
Finally we reached an unfamiliar corridor and the volunteer whom I’d been handily chatting about tropical plants with bid us adieu. Amelia trucked on ahead, thrilled by the freedom to run up and down the corridors, uninhibited by the ghosts that roamed them.
When we found our way–because Mili always finds her way–I saw the Children’s Memorial Hospital sign on the wall across from her new neurologist’s office. In a bizarre twist of fate, this happens to be a satellite unit of the same hospital that I did my pediatric rotation through years ago. It’s an amazing hospital.
It’s hard to believe that my daughter is now a patient.
In the waiting room, Amelia made a beeline for the crayons and happily dumped them out all over the table. Screw coloring.
Eventually, we went back and met with the neurologist, who I was understandably anxious to meet. Neurologists, for those of you happily unawares, aren’t perhaps the kindest of all doctors. They’re sort of at the top of the doctor heap, only beaten by infectious disease doctors, and what’s more is that they know it. So people skills aren’t exactly important to their profession.
I was prepared to go all Campaign of Terror on him and be all “you DO know who I AM, don’t you?” and not because I am a pitiful blogger who might pathetically attempt to sully his reputation on the internet (I wouldn’t), but because I come from a line of well respected doctors who are well known. My now-middle name would be a dead giveaway, but I was all, you’ve got to know when to hold ‘em and know when to fold ‘em and stuff.
I didn’t even have to whip that out because he was FULL of the awesome. When Amelia took his reflex hammer and started trying to test out MY reflexes, he simply went and got another one rather than try and wrestle it out of her fists of fury.
For any of you not playing along at home, Amelia was born with a midline parietal enecephalocele which is a neural tube defect caused by the failure of the embryonic neural tube (the primitive spinal cord) to close properly. Her skull didn’t fuse and part of her brain, the part right about at the crown of her head (for anyone who doesn’t know where the parietal lobe of your brain is) developed outside of her head. It was a true encephalocele, not a meningeocele, meaning that there was actual brain matter inside of the defect, not just cerebrospinal fluid.
Having an encephalocele reduces the likelihood of survival at birth to 21%. Half of those live-births survive. Of those survivors, 75% have a mental defect. The poorest indicators for survival and associated anomalies are true posterior encephaloceles. Like what my daughter, Amelia, was born with.
At three weeks of age, she underwent massive neurosurgery to repair the bony defect in her skull with a skull implant and to remove the herniated brain tissue that had developed outside of her skull. The surgery was a success.
Mili’s neurologist suggested that we follow up with an EEG to look for any possible seizure activity while she is sleeping, as she displays none of the signs of seizing while she’s awake, because it is the last thing that can be treated. Neither the neuro nor I believe it’s seizures, but it’s worth a shot.
Any other developmental problems are simply a continuing result of her encephalocele and the microscopic neurological problems that they caused when she was developing.
Logically, I knew this. But my heart was filled with darkness as I left the office, my daughter chasing the light shining through the windows in the corridors of the hospital as I trotted to keep up with her. I wanted it to be easier.
I ducked into the gift shop and bought her a necklace. A new necklace for a new battle. And as I strapped it to her brave chest, the tears falling down my face, I whispered, “there’s the light, Princess of the Bells. Now you find your way. Don’t let anyone stop you. Ever.”
And she won’t. She’s her mother’s daughter, and if I can find my way in this crazy fucked up world, my daughter will, too. Her light will guide her, just as mine has. In lumine tuo, videbimus lumen.
