the post-hospital rant

When Rhys was born, the midwives looked at him and saw tell-tale signs that he was early – his fingernails hadn't made it to the end of his fingers yet; his nipples hadn't yet popped out; his ear cartilage hadn't hardened all the way...They had a list of checkpoints, none of which I would have likely noticed at all.

What I can tell you is that when Rhys was born his skin was so soft it felt like water. He felt too delicate even to kiss. Though we are fond of possessive pronouns, I would not have described him in most any way as “mine.” I doled out my kisses sparingly, with just the slightest brush of my lips against his cheek. Anything else would have felt disruptive to some sacred process that had yet to complete itself. One must show respect in the presence of miracles.

Even by two weeks old, the magic aura had waned a little and that creamy, liquid skin was already beginning to feel somewhat earthbound.

Home from the hospital, he felt untouchable all over again. Not mine. Though the place he'd been delivered back to me from did not ring to me of magic, here we were at another beginning.

****

Children's Hospital has more than a little in common with an airport for me. There is the bustle and noise in the lobby (which includes a CVS pharmacy, an Au Bon Pain cafe, and an art gallery), with people from all over the world coming and going. The timelessness of your stay and staleness of the air. The luggage carts in the parking garage are simply exchanged for wheelchairs. And there is the sense of entering someone else's world. Journeying in a way that you must trust rather than understand, that you no more have the jargon to ask about than you would have ability to take in the answers if they came, and they rarely do.

As you approach Children's Hospital Boston in the busy Longwood area of the city, there is a banner – utterly enormous – hanging under the name of the place: “Ranked #1 by U.S. News and World Report,” it screams. All of the “Mission Accomplished” banners were taken, I guess.

“You must be so grateful to be so close to the best doctors in the world!” I've heard this constantly since Rhys' diagnosis.

I waited, tempered in my exuberance for western medicine, even the kind that's splashed as big as thunder clouds at the entrance to greatness and “Ranked #1” by a news source that – in this time of hyper-specializations – also ranks cars, law firms, mutual funds and places to retire, and lists the “Five Great College Towns for Winter Enthusiasts” and the “Top 9(?) Political Events of 2011.” Color me conservative.

Essentially, Rhys' surgery was a success. And I am grateful. As I am grateful for many things in my life, such as the fact that I don't live somewhere where I need to hike miles every day for water and carry it home on my back. However, that does not mean I don't have the right to complain when I turn on the faucet in Northampton and lead comes out.

I feel no cozier now with the idea of doctors and hospitals than I ever did.

Perhaps if they were our “last chance,” if I didn't have a beautiful, mostly asymptomatic baby whose condition I had to intellectualize to visualize the danger of. But no, probably not then either. I can't. Sorry. My knees will not bend at the altar of Children's Hospital. The people I met there ranged in skill and sympathetic natures with the same curve as the population at large. A couple were exceptional, most were average, and a few sucked weenies. The information that the doctors left out of our conversations still galls me. This lack has followed us home in our less than straight trajectory to recovery; they like to label things after the fact that “happen-all-the-time” (so why don't you mention them once-in-a-while??). As I wrote to my surgeon, if only information flowed with as pathological regularity as the medical protocols do.

We all have our preoccupations. I tell people that once we left ICU, our roommate was a 5-day-old with a pacemaker whose mother spoke only a little English. They say “Wow! Isn't it amazing what they can do now!” I watch as they call for the interpreter, who is slow in coming, turn over again on my crappy cot that I shudder in thinking is all they provide a woman who just gave birth.

We meet doctors at our most vulnerable. Whether that is dressed in a backless, paper gown in their examining room, or curled, sleepless and unshowered at the bedside of our infant. For their part, the surgeons, who I'm thinking arrive to the hospital via underground tunnels like the members of Congress, likely also frequent phone booths placed discretely on various floors – in order to smoothly change between their suits and their scrubs. They are calm, assured, at work. You are not.

They had told us to plan for a hospital stay of 7-14 days. Expect 10, our cardiologist told us, offering the midpoint as a goal. But we were out in record time. Rhys plowed through all the checkpoints like a prize fighter. Surgery was over around 1pm Friday. The ventilator came out at 4pm on Saturday. The chest tube was gone Sunday morning. Two nights in ICU, two nights on the regular floor. Boom. Done. My baby kicked some medical ass.

I had planned on writing holiday cards, sewing more of the patched, felt hearts I'd been creating to keep my mind out of trouble, listening to This American Life, the long list of distractions goes on, while my son languished in bed sedated. None of it came to pass.

The beginning was incredibly tense and intense, facing the wires, the tubes, that tiny body covered in artificial bits all taped on with horrid adhesives (“Does he normally have this sensitive skin?” Gee, I don't know since I don't normally cover my son in duct tape!!), as the nurse listed the medications that were seeping into my baby in between her other proclamations of expertise (“I was actually in the operating room for Rice's surgery; so that was really cool.” Look, sweetie, you already said that and I was unimpressed the first time. Surgery is not “really cool” and I didn't name my kid “Rice!” Now shut up about the OR and tell me when he'll be off the fucking morphine!)

After encountering a few much more reassuring nurses, (one who even triumphantly advocated for me to get him back to nursing ASAP, skipping the steps of sugar water and bottle) we left ICU and headed to the regular ole cardiac unit. With a broken call button, another rookie nurse and a night crew that were apparently busy elsewhere for the duration, we barely had time to get through the gas pain that sent Rhys screaming awake multiple times that first night, fight off the second sedated echocardiogram and an extra Xray, and host the parade of hospital personnel that swing by (“I'm a nutritionist,” “I'm from lactation,” “Would you like to speak to a social worker?” “I'm the nurse practitioner on duty today,” “I'm a neurological behavior specialist,” “You qualify to participate in a study...”) before we were discharged.

In many ways, the hospital held many similarities to my labor with Rhys – it was over exceptionally fast, which, overall, was a positive thing. However, as my midwives said at the birth, you still have to go through everything, no matter how fast it happens. You're left kind of dizzy and definitely exhausted. And, frankly, there was no time to process. Forgive me if I must do that here.

You'll be happy to know, however, that according to my friends at Children's apparently none of the medicines, even the ones that are so routine they forgot to list them in the OR report, have any side effects! Ever! – AMAZING! And, I was also told –so it must be true (Children's Hospital is ranked second only to the internet in true facts, I'm pretty sure - “Ranked #2!”...) --that each and every situation that arose was, as they liked to put it “perfectly normal.” I tried to assess this most bizarre of all medical terminology while surveying my baby lost in a sea of machinery, IV lines in his hand, his foot, his neck, monitors taped to his forehead, a breathing tube down his throat, two catheters – one dripping urine, the other blood from his chest...and all I could think was that, as inviting as that CVS in the lobby is, as intoxicating as the Ranked #1 banner must feel as they swish by it on their way to their blessed jobs, as fun as it must be to eat lunch every day in that basement cafeteria laced in high fructose corn syrup, these people seriously need to get out more.

HOME!

Wish I had time to write it all out right now, but suffice to say we are home from the hospital! It was pretty much record time. We are now exhausted and starting over on various counts, but home nonetheless. Rhys is smiling again and doing pretty darn well. Will try to post over the next couple days.

post op

Just a quickie note to say Rhys is out of ICU and doing well. We're on to pain management right now - another hurdle but I suppose considering all he's been through, not terrible albeit more stress on the mama.

my current obsessions / god complex redux

After 14 years I am still in the throes of learning what it means to be close to an engineer – someone with that kind of precision running through his veins, uber-focus, odd-world-out kind of mentality – and now, due to no choice of my own, I have run into another being so strange as to fill my mind with question after question, so bizarre as to boggle my every fiber and cause me to obsess about why he does what he does. The mysteries of Edward Cullen have nothing on this guy.

I am speaking, of course, about the masked one, who scrubs up to his elbows, the one with the steadiest hands, the beast known as (Say it!...Out loud...) Surgeon. (How long have you been cutting people open? ... A while.)

I am constantly thinking about the man who will perform the operation on Rhys. He is my age. He is personable (I'm told a rarity among his kind) and handsome. When we speak his name among nurses and other doctors, they sparkle like Hollywood vampires in the sun, clearly enamored of this person. When I finally met him I stared hard – looking for the trail of magical pixie dust in his wake, listening for the sound of the clouds parting and hymns of the chorus of angels to begin.

What possessed – and I do mean possessed – him to take up this profession? (I actually asked him and he told me some tired answer about seeing the difference made in people's lives, blah blah blah.) But, really, what is in him that brought him to medicine and then, to the freakish specialization of children's surgery? Is this the result of a happy childhood in which he learned he could do anything? Or a tortured one which taught him he must push as hard as he can to do better, be more perfect, and haunts him still?

What does he do in his free time? Does he have free time? What will he eat for breakfast the morning before he cuts open my perfect baby? What will he eat for lunch afterwards? Will he remember to look at his name on the chart or will it simply be another tiny body he must fix? Why does he think it normal to go to work and pick up a scalpel? Why does he shrug when I ask him details about ideal weights and ages for this to be done? How does he feel when things go well? When they don't?

When I flub my job, verbs fall flat or phrases fail to find a foothold in your mind's imagination. And for him?

Two weeks before Project Insanity in which I offer up my Rhys to surgery at Children's Hospital Boston. Escape is a very necessary tool at this point. And so, if you had told me a week ago that I would reach a time in my life when I would spend what small wakeful free time I have disappearing into a laughable fantasy world where a girl goes to her prom with a vampire, I would have said you were nuts. But thanks to a friend's suggestion (Yes, I blame you, Nicole!), there I go. Werewolves, baseball-playing vampires, armies of the newly undead, I embrace it all, while I place my faith in another kind of creature which to me doesn't seem all that different with regard to his rumored super-human abilities.

god complexes and mothers and doctors and what's in a name

Two things Isaac is obsessed with right now are world records and looking things up on the internet. As you might guess, these two passions combine to make for hours of entertainment for my son as long as there is an adult to tell him how to spell and read what pops up.

About as skilled as I am with finessing his search language, Isaac sees the computer as a kind of a boardwalk palm reader -- “Ask it 'What is the biggest baby ever born?' Type in, 'Who-is-the-person-with-the-longest-ever-mustache-ever-in-the-whole-entire-world-ever?'”

“Let's look up 'Who is the most important person in the world?'” he pleaded recently.

“Who would decide who the most important person was?” I ask, devil horns sprouting from my curls. “Most important for what? To whom?”

“You know, just most important.”

“But that's a complicated question. To Rhys right now I'm the most important person in his world. Without me, he doesn't eat.”

“No, but you know. The most important person, like, the president or...like that.”

“Rhys doesn't care about the president.”

“Forget it,” my six-year-old says, and, disgusted with me, stalks off.

I can't decide if I should be happy or nervous that our surgeon carries the name of a mythical deity. I can't decide to be grateful or not when our cardiologist squeezes in a voicemail to me “between meetings” and inquires as to my “availability.” Why “between feedings,” dear doctor.

Etymologically speaking, there is this --

doctor = c. 1300 “Church father”

mother = Proto-Indo-European, from “ma,” meaning breast

Latin - mater

Greek - meter

French - mère

German - Mutter

Russian - mate

Icelandic - modher

Sanskrit - mata

Irish - mathair

Welsh - mam

Arabic - oum

Hebrew - em

Swahili - mama

Chinese - ma

Hawaian - makuahine (maka first, beloved < *ma-k Proto-Polynesian, the mother (?) + wahine woman)

I've decided to spare you the ins and outs of how we came to this point, but know it is hard-won: Surgery date - December 9.

the door collector

Doors red, blue, brown, white standard sizes, white one skinny closet door. one blue with window and glass, I collect doors but can't take them! 10 each

That is an actual line from a Craig's List ad. The person was moving and listing a variety of things for sale. After the hand-painted boogie board and before the list of mirrors was this list. Doors.

Collecting doors? Maybe he or she didn't want to miss Opportunity. It might knock on the beige one with the half-circle of stained glass at the top. Or, it might favor the steel door, impenetrable though it may seem. The screen door, flapping gayly open and closed through summer nights might be where it comes to call, or the one painted white and red with the ornate handle.

The call and the challenge for the writer is to notice. Through this year of chaos, I try. Often anymore, it is the only thing I can do. I can't seem to do anything about things, either because they are out of my control to begin with or because I notice them while walking a fussy baby, or while falling into bed, exhausted.

Before I moved, I had started on a longer work, now temporarily abandoned, that deals with my mom's passing and my tendency to search for and, by turns, embrace or reject what might be signs of messages from the other side. One of the main things I am grappling with in writing it – or should I say grappling with and so writing it in hopes of at least (and this is no small part) laying bare the questions though the answers may never find me – is even if I were to find what I believe with all my being is a sign, so what? A sign of...? The meaning of which is...? Because of it I'm supposed to believe...?

That's where the noticing comes in. For now, I just notice. It is what it is, as they say. What to do with the information, I have no idea.

I just notice, for example, that my mother declined open heart surgery before she died. And that the last time I saw her was in a cardio ICU unit. I just notice that a year after her passing I had a baby that requires open heart surgery. And that I will be spending time with him in a cardio ICU unit.

I also notice that I have bought a house with a lot of issues regarding doors and passage ways. I refer to it regularly as a Feng Shui nightmare. None of the doors to the rooms close right, entrances are obstructed, unnecessarily complicated, blocked. If everything in the world wasn't at the top of my priority list right now, from buying winter boots to scheduling surgery, I'd say I'd have those doors fixed ASAP. My baby, born to this house in so many strange ways – born at home the night we moved in, his middle name meaning “new house...” -- has passages in his heart that are blocked and other spaces that are open where they aren't supposed to be. Just noticing.

I laughed and laughed at the door collector when I first hit upon it. But really, why should this hobby be any odder than any of our other neuroses? French doors teeming with possibility. Barn doors with their two halves swinging independently. We live among closet doors, pocket doors, solid wood doors with see-through key holes. All the while, looking for a way out

the graveyard shift

It was my first night in a hospital. I have spent the day standing on a cardio cath recovery floor because we are "overflow," the third "high risk" baby of the day. Rhys got to do his echocardiogram and I only had to force feed him foul-tasting medicine that put him to sleep first. Almost like a party. Nine hours after we arrived we got to talk to the cardiologist. It only took the surgeon 8 and a zap to the pager.

Now, Rhys and I are settled into our charming accommodations where his monitors sing to us about numbers on blood pressure, heart rate, respiratory rate, and oxygen saturation levels.Any time I lift him to nurse, we go code blue. It's not unlike a car alarm - no one pays attention anymore since they are always set off by accident. Beyond the curtain there is a 2-week old and his mom. The little guy has already had surgery for his time in our world and has yet to breathe the air outside a hospital wing.

In place for a night of monitoring, I am thinking of making a leaf rubbing of the springs on my cot. A handsome man breezes into our room around 10 pm or so and introduces himself as Dan. Hi, Dan. He looks like he just walked off the set of one of those medical drama shows. Dark chest hair curls out of the top of his scrubs. He has an easy manner, quick with the jokes.

"I'm the doctor on duty for the night," he tells me, and by way of further jovial explanation: "It's my job to keep everyone alive overnight."

"Mine, too," I say.

"Really?" he inquires, all earnestness and curiosity. "What do you do?"

"I'm a mom."

trust

Explain:

We are a people who, approaching an intersection on foot where 2 or 3 people are already standing waiting for the walk signal, immediately press the button, assuming, one is to believe, that the other people forgot to or somehow did it wrong, thus, their continuing stance at the corner.

However, we are also a people who are perfectly willing to believe that a surgical team can saw through the breast bone, stop the heart, empty it of blood, cut it here and sew it there with the ultimate in precision, presumably repairing, without risk of error, what is already the ultimate in perfection.

Mama Bear Goes to Boston

Rhys: over it with the doctors, but still trying to stay balanced in the yin and yang of it.

Black bears rarely attack. But here's the thing. Sometimes they do. All bears are agile, cunning, and immensely strong, and they are always hungry. If they want to kill you and eat you, they can, and pretty much whenever they want. That doesn't happen often, but –and here's the absolute salient point—once would be enough.

- Bill Bryson, from A Walk in the Woods: Rediscovering America on the Appalachian Trail

The first 3 out of 4 days we spent in Massachusetts after arriving this summer from our final stop (the lower Hudson River Valley) at the end of our cross-country insanity, the front page of the local paper was splayed with pictures of bears. Bears, eating from people's compost piles. Bears, exiting people's homes through kitchen windows. Bears, just chilling in people's yards.

The animals were beautiful, striking in their bear-selves and the juxtaposition displayed: with an obviously wild nature that challenged everything about their domestic surroundings.

Despite the bear on the flag of California, I have never heard of one wandering into our old neighborhood. Judging by the construction drive that seems set on paving over every sage bush there, we'll be lucky if the skunks make it. The bears? They are long gone, having had to submit to things like the bear and bull fights back in 1800s Monterey with its red-tiled roofs and neanderthal modes of entertainment lit by whale blubber. But enough about our shining past.

The two times we came to see this house when it was on the market, the seller's realtor must have tripped over herself trying to mop up the puddles of drool she left on the floor after salivating about the young couple with the preggo wife who would surely be ensnared by all the charms of a 100-year-old farm house. She saw the belly and knew her marketing tactic immediately.

“Kathryn!” she'd coo to me. “Look at this!”

“This” would inevitably be some stupid-ass thing, like a picture of a laundry shoot window that once existed or her perceived convenience of the washing machine in the kitchen (?!?...coming in another entry...). She thought she'd found the perfect preggo, that sales push-over, the Nesting Mama. Unfortunately, she had me pegged all wrong. She'd found Mama Bear.

“Is that asbestos on those pipes in the basement?” I'd ask narrowing my eyes on her latest dream detail (“There's a light in this closet! And look, Kathryn!...”)

---

“If I can help the other 4 families you'll see this year with a kid with TOF, let me tell you, you need to explain more information up front. Nothing for nothing, Doctor, but that handout you left us with told us nothing and only made us scared.”

“Oh, well, I'm sorry. That was never my intention. My intention was to leave you with enough information to investigate. The name of the condition Rhys has is called Tet-tra-lo-gy of Fa-llot.” (Why, some of my best friends have Tetraology of Fallot!)

Bitch, start with me.

Can you say, fired? She's been replaced. (Why, some of my best friends are doctors!)

The local scene just beginning to show signs of hope with a new cardiologist on board, this weekend we also head to Boston – our first trip to Children's Hospital. We will be consulting with a cardiologist and a surgeon. Rhys will undergo a sedated echocardiogram and then have to spend the night for observation. I will stay with him. I'm packing my honey pots and holding my breath.

And since I don't yet know how to communicate the intensity of the stress we've been under for the last 4 weeks, that's all for now.

...Nothing worries and antagonizes a female bear more than to have people between her and her brood...

rainy thoughts

I have been reading emails from friends. And friends of friends. And friends of friends of... Well, you get the idea. I put out a call to my peeps for anyone with information, connections, or personal experience with Tetralogy of Fallot and what I got back has left me dazzled.

So many people went out of their way to try to help us. So many words of encouragement, from all the crazy corners of my life. The poets and the doctors; the lawyers, the teachers, the pray-ers and the skeptics. I love you all. Thank you.

Any of you who've followed this blog over time may have gathered that our Isaac -- from here on out to be known as "our first-born," just because it amuses me and feels charmingly cliche and like something I'd never say, ever -- is a rather intense little person who demands a great deal of our time and attention. And while he is still that and in all likelihood will always be that, Isaac our first-born has been doing a fabulous job of busying himself lately. In fact, he never stops being busy. Ever.

One of this favorite things these days is cutting out snowflakes. You know, the fold the paper and snip holes kind. And while I might object somewhat to this premature winter filling my windows, considering I'll have a real, New England winter on my hands before you know it, I can't help but be charmed by my son's creations which include his very best writing.

Bundled into the center of his snowflakes are conglomerations of the words he can spell without thinking too hard, so that they usually say things like "IsaacMomDadRhysCatLove." And I take them from him and think, yeah, pretty much, that's it.

The authentic snowflakes are still a ways off for now, gratefully, but weather has been unusually rainy here these days. Downpours several days out of the week seem common.

Both my boys were born in the pouring rain. There is a sacredness to rainy days. I have always thought so. There is something to gain from the darkened scenery, the baptism of garden and asphalt alike.    

All I can do is just move through this time with Rhys. Move slowly through.

Everything wants to be the rain.
The yellow maple leaves
pinging against the walkway
gather first to fall in a gold sheet
of sound. The dry grasses
bending in the wind
thirst to be like the rain --
how it can calm the most hassled
day, put us softly to sleep.
The traffic on the highway --
especially the traffic -- puts on its best
mimicry, longing as it does
to be instead the beat and whoosh
of contemplation that is the rain.
And as the rain streams now, down
the windshields of rush hour,
it does not mock or scold its proteges,
does not deny them their allegiance
as it might, but simply continues, steady
in its example.

murmurs

Imagine that you are delicate enough that the quarter-inch square stickers for the EKG they made you do left bruises behind on your velvet skin. Imagine now that you are so delicate that two hours under florescent lights, the ringing of phones, shuffling of folders left you so exhausted you slept the rest of the day and night, waking only briefly here and there to eat. Try hard to imagine it. Do. Because we are all that delicate.

My Rhys has been diagnosed with a congenital heart defect called Tetralogy of Fallot. He will require a corrective procedure, likely open heart surgery, before he turns six months of age.

I wasn't surprised somehow when they heard the murmur. Not that part. Not the murmur. A month ahead of schedule he moved down that canal red with blood and love and into my arms, a floppy doll, quiet as I leaned in and whispered my greeting, praying he'd stir, rally in the dark room of hope. And then that beautiful heart had something extra to say.

Metaphors are real and I will not apologize for them. I am a poet for a reason. And it is not to talk prettily about spring. My boy's heart came with a space most of the rest of us don't have; it is more open than the average person's and sometimes, because of this, he cannot catch his breath.

“What a perfect little being,” the barrista says staring at my baby bundled in his carrier. “Yes,” I answer, “Yes, he is.”

It is a new world. Always new. Imagine.