I was already hysterical by the time the doctor told me that my daughter had something wrong with her head, and as she instructed the nurse to call neonatology stat, just like that, my daughter flopped her way into the world at 4:28 PM on Wednesday January 28, 2009.
“Is she okay, is she alive, is she okay, please tell me she’s okay, oh my god, oh my god, is she okay, oh my god, oh my god, my poor baby, is she okay?, is she dead, make her breathe, is she dead, oh my god!” I couldn’t stop the hysterical babble, my voice rising until it was as shrill as a harpy.
“I don’t know, Rebecca, neonatology is coming to check her out” my OB said over my wails. Then she held up my squirming daughter.
My first thought was that I’d somehow given birth to a statue–I can still see her in my mind’s eye–bathed in the glow of the spotlight, dark hair matted down–as she was covered head to cheesy toe in vernix caseosa, and once they’d rubbed that off of her, she was pink and pissed the hell off.
I couldn’t tell you who cried louder–me or her–but I know that mine was the more mournful of the two. I figured that I’d used up all my good luck netting a wonderful The Daver and having two healthy boys. How could I possibly be lucky enough to have another whole healthy baby? I’d spent my whole pregnancy thinking just that: I couldn’t dodge the bullet again.
Apparently, when they hit the emergency button and order neonatology up to visit a patient, it means that the medical equivalent of a marching band swarms your room. So, there I was, suspended in midair (my doctor liked to deliver babies standing up) (her standing, not me) (because that would be very awkward) (especially if I pooed on her head) stuck being stitched up, spotlight still trained onto my vagina when a parade of people entered my room. Like extras from a movie set.
Even more upset, I moaned and cried and delivered my placenta, crying more violently than I thought possible, my ugly grey gown now dripping with the tears I’d been weeping steadily. I could barely breathe, the snot poured liberally out of my nose, and without the Daver to wipe it, it just pooled there on my face.
Dave was obviously where he should be–with his daughter–and had my OB not been eye to eye with my crotch I’d have wobbled my still-numb legs over to join him. I’d have clawed my still-working upper body toward her if I had to, but I could sort of see her over the OB’s head. Pink, pissed off, and hugely fat. Over the din, I could hear Dave trying to reassure me, “Oh Becky, you have got to see her thighs! She has THUNDER thighs!”
It was the most normal part of this whole fucked up situation.
The neonatology team swarmed where my daughter was furiously screaming her ever-loving head off, oblivious to the cacophony of cries in the room. They assessed her and after a couple of minutes, decided that it was probably just a fatty cyst on her head. But, to err on the side of caution, they would order a CT scan of her head the following day, so that the pediatric radiologist could take a gander at her noggin.
And just like that *BAM* the room emptied.
Like the water drained from the bathtub in one loud glut.
All of a sudden it was so quiet, so still. I was stitched back into one piece and lowered to a respectable height, my doctor bid us farewell, and neonatology nodded their capped heads at us as they left. Seemingly unconcerned. It was just The Daver, my nurse, and my daughter left. She begged off too, so that she could give us a chance to bond, and Dave gingerly brought me over my daughter.
I was still shaking head to tow, be it from the precipitous drop in hormones or the trauma that had been Amelia’s birth, and I begged him to stay close. Just in case I dropped her. As I managed to wrangle to gown down, I nursed her and as I did, I examined my new child. My sweet cinnamon girl.
She was the spitting image of Alexander, whom I missed so painfully that I actually ached, although her fingers were longer and more elegant, and her hair was dark black and matted to her head. Her eyes were open and she regarded me with these luminous green eyes which seemed to say, “hey, so you’re my mother, okay.” I was enchanted with her pureness, her loveliness. The daughter I’d always wanted was finally here.
And still The Fear. I tentatively pulled up the hat which had been pulled down over her ears, terrified of what I might see. Sure enough, right along the posterior fontanelle, there was a mass, a solid, pliable mass maybe an inch in diameter that I palpated gently with my fingers. I was reassured that this did not seem to cause her any distress as she still stared at me while I began to quietly weep into her blanket.
It was either a fatty tumor or it was something Very, Very Bad.
I’d read about neural tube defects in nursing school–always the annoying overachiever–so I knew that they could occur anywhere along the former neural tube. Typically, they’d occur lower, on the spinal cord, where they’d cause spina bifida, and while I knew that they could happen anywhere along the spinal column, I had no name for what it was called if it were to occur on the skull. But I remembered it technically be a neural tube defect on her brain and the pit of fear in my stomach grew.
The obligatory phone calls were made in short clipped bursts–by Daver as I couldn’t handle trying to talk to anyone yet–and we were prepped to go up to the Mother/Baby unit. As we rolled past the rooms with happy, seemingly carefree families, I was green with envy. I’d wanted shiny pink balloons and huge bouquets of overflowing roses and cala lilies and flowers and visitors and Vicodin, and an epidural that worked, and I wanted to play “Eye of the Tiger” when I delivered, and I wanted to enjoy my time as a new mother one last fucking time.
But my daughter; something was wrong with her. I couldn’t celebrate when there was something wrong with my daughter.
I steeled myself for our visitors as best as I could, wiping the snot from my nose and trying to ice my nearly-swollen-shut eyeballs so that I looked presentable for my dad, my eldest, my sister-in-law and my friend Ashley. They poured in and I tried to make small talk with them all, choking down the dinner they’d thoughtfully brought me which tasted like sand, and tried not to cry. I showed off my daughter and they ooh’d and ahh’d appropriately and I felt like a fraud.
They each knew that she had something wrong with her head, but I’m not sure whether they were trying to put on a happy face or they were just clueless as to how bad this could be. Above their chatter, all I could hear was a constant buzzing. I later identified this as panic.
Even with the aid of an Ambien and a Vicodin, the mix of which should have knocked me on my ass after the labor and delivery I’d had, I couldn’t sleep. I struggle with insomnia on my best days, and on my worst, well, I am a wreck. I tried to toss and turn and nothing, I couldn’t sleep. Or I could sleep lightly, only to wake up when a squirrel farted in Siberia or a raccoon somewhere in the mountains of Egypt broke a branch (are there raccoons in Egypt?)(or mountains, for that matter?).
Dave, seemingly oblivious, and always the one to assume the best in any situation, snored away, not even stirring when I lobbed condiments at him to get him to stop fucking snoring.
(condiments inexplicably included peanut butter)
(as an insomniac, there is very little as awful as having to sit there and listen to other people loudly sleep when you cannot)
I was almost happy when the breakfast cart rolled in because then I could stop pretending to be asleep. The morning passed as sort of a blur to me, although I can distinctly recall removing my own IV port and not letting a soul touch my daughter. I was like a momma lion protecting my baby and if push had come to shove, I probably would have bitten someone had they gotten too close.
Somewhere around 1PM, radiology came by to escort my daughter to her CT Scan. Dave, always the wonderful father, went with, leaving me alone in a room. Shitting my pants scared and all alone. I felt like a shaking bird with a broken wing, stranded and alone. I think I pounded out a bare bones blog post and read and reread my comments just so I felt a little less alone. Bet you didn’t think how much it mattered to hear from you, but it did.
It was my lifeline.
After something like 38 hours, Dave and Amelia were back, Dave beaming ear to ear. He’d gotten the impression that whomever was looking at the stills of my daughter’s head hadn’t seen anything terribly noteworthy.
For the first time in over 24 hours, I relaxed. My jaw unclenched, my fingers uncurled and my shoulders loosened. I began to think of things like “when we go home” and “I wonder how many Vicodin I can score from the doc” rather than, “is my baby going to die?” or the ever popular “is this REALLY how it all ends?”
I nursed and nursed my daughter, stroking her pimply cheek and murmuring to her that we’d get hats and wigs and we’d make bumps awesome, and that it didn’t matter if she had a little lump, she was so beautiful, and hey, there were always ponytails.
The phone rang, and somehow I disconnected this event with the one before it–the CT scan–and I watched Dave go ashen as he listened. He sputtered out that the NICU was coming and the pediatric neurologist was coming to see her and there was something wrong with our daughter. Something really wrong. We didn’t know what–no one, apparently, tells you shit in the hospital–but it was bad.
In another flurry of activity, the NICU came up to take my daughter from me.
They peeled her out of my arms one white knuckle at a time, and as the left the room I was scared to hear this howl, this wolf-like guttural howl. It sounded like a lion who’d been backed into the corner to die. Or a coyote mournfully begging someone, anyone in the still night to respond. I’d never heard anything so eerie in my life, and my entire body broke out into goosebumps. It was so feral.
It took me several minutes of listening to it before I realized that the noise was coming from inside of me. I was howling as they rolled my tiny daughter away from me. I was making a noise I didn’t even know humans could make. My head buzzed as though a hive of bees had taken over where my brain had formerly been and I shook.
And I howled. I screamed and I howled.
Dave was sitting there, a shell at the foot of my bed, wracked with sobs. I’ve never seen him cry like that before or since and I hope like hell I never have to see that again. We held each other and we sobbed and we howled and we wailed, like two wolves, crying for their dead cub.
I hope I never have to make that noise again. Hell, I hope that I never hear that noise again.
We were clinging to each other like two drowning souls.
My postpartum nurse marched into the room after our daughter had departed. An old battle ax of a lady, obviously well seasoned and not interested in the moaning and carrying on that was taking place.
But this was our daughter and no one had told us anything whatsoever and we were scared shitless. The bump could have contained the meaning of life or Jimmy Hoffa’s body–we simply didn’t know. We wouldn’t know what it was for over a month.
We watched her being wheeled away and a small part of us died right there.
My nurse very obviously didn’t care for my hysteria as she began scold. “I needed to get myself together for my daughter.” Because I “had to be strong for her now.” The sentiment is fine, sure, but you have to understand–because you know the outcome now and you know that she is fine and babbling in her saucer into a set of measuring spoons and it’s so easy to look back onto someone else’s story and say, Jesus wept, she overreacted, and probably I did, but we didn’t know anything.
We thought that she was going to die.
I didn’t appreciate this attitude–I banned her from the room after this interaction–from my nurse in the slightest.
We could have used compassion and reassurance, maybe a hug, not being snapped at that I needed to shut my stupid whore mouth. She insisted that we wait 20 minutes before we went down to be with our child, an arbitrary number; a cruel imposition. The NICU wouldn’t have cared what state we were in. But it is was it was.
Another nurse, a kinder one, who must have heard the verbal slapping we were being handed wheeled in a wheelchair for me so that we could go visit our daughter. I’d just given birth, and although I could have given a shit about the number of stitches or the horrible pain I was in, I was still very, very weak. My eyes were nearly slits in my face, obscured by my swollen orbits, and my face was shiny and raw from being furiously scrubbed with hospital issue tissues.
I hyperventilated and wept on our way down, through some secret set of hidden elevators to what I thought was the basement of the hospital, keeping my face down and away from the other patients, who stared, gaping openly and thanking GOD that it wasn’t them. Rightly so.
I gripped the teeny sock–a lone sock that had fallen off Amelia’s foot earlier and I’d randomly stuck into my gown–like it were a life vest, the last thing I had that connected me to my daughter.
We were buzzed in from an unseen source as we approached the innocent looking white door that would bring us to our daughter, now a patient of the secret place, the land of tears.
I’m not a stranger to NICU’s and I happen to find the tiny babies, the preemies absolutely adorable rather than frightening, and the wall of constant sound–the vents humming, the monitors alarming and beeping intermittently and the quiet swish of the staff, moving purposefully from patient to nursing station and back again–doesn’t bother me like it does some. But this was our daughter and, well, no one expects that their child will end up there.
After scrubbing in, we went to see our daughter, who lay now completely naked under what I always called “The French Fry Warmer” hooked up to a zillion monitors, in the area directly next to the nurses station.
This was The Bad Room to be in, as anyone who has spent any time in an ICU knows, because it is RIGHT next to the nurses station. Which means they are keeping an extra close eye on whomever is there. Comforting if the patient is very ill, frightening if you still don’t know which way is up.
I cried into my gown as the other parents looked up at us, nodding in kind of a ‘hey, you too? Fucking sucks’ sort of way. Because your kid is in the NICU and that’s completely fucked up. What else can you say? It’s not like any of us expected to be there. I tried to be quiet with my sobs, and I got a couple of ghosts of half smiles from other parents who sat vigil next to their own babies.
I saw when I gingerly moved from the wheelchair into the rocking chair crammed into that tiny room with a curtain instead of a door, that someone, some kind soul had made several signs for Amelia, to add some cheer to her room. One said “Amelia” next to a red block letter ‘A’ and the other had some sort of Minnie Mouse also with an “Amelia” right there.
For some reason, this unexpected act of gentle kindness made me cry harder.
Just like all of the amazing emails and comments that you guys sent me. I know full-well all the nasty shit the Internet can do to people, but I will never, ever, ever be able to put into words how much it helped to know that people who didn’t even know us were praying for us. I cannot thank you enough for every single comment, email, anything you did for us. Every time I talk about this, every single thing you say to me, every time someone pops up to say something supportive about this, I am so grateful for each and every one of you.
Sitting here, reliving this and having so many of you reliving it with me, there are no words for how much it helps. I am showing you my secret heart, warts and all, and you are here.
Thank you. I am humbled by you.