Greek Tragedyhi

when dealing with health insurance reps is bad for your health

Phil handles our health insurance, a nettlesome task for those with the patience of a pee-wee coach. I'm learning that health insurance is a maze with a mantra that begins, "How can we try to not provide you with our sub par service today, Ma'am?" 

Our health insurance wouldn't pay the hospital for the emergency hydrocephalus surgery Lucas needed unless we proved it wasn't a "preexisting condition." Calls (yes, plural) were made, explaining that Lucas's condition couldn't have been preexisting because he wasn't preexisting. He'd been covered under the same insurance since the day he was born. All of Phil's reasoning fell on deaf ears. Another time they wouldn't pay other bills unless we proved Lucas's condition wasn't caused by someone else. Can you even cause hydrocephalus? The latest healthcare marathon in our home involves Lucas's pediatric neurosurgeon. 

He has treated Lucas with such care, and has navigated all the unknowns regarding hydrocephalus, infection, and the enhancements of Lucas's spine. There is only one pediatric neurosurgeon in Austin, Texas, and thankfully he is in our "network". At least he was until a month ago. Now that Lucas needs to go back for his six-month MRI, we've discovered that he's no longer in the network. Common sense would dictate that if the health insurance network cannot provide an alternative to the only pediatric neurosurgeon within 200 miles--and someone who has provided continual care and monitoring of an infant with a delicate condition--that they'd at least have an authorization process in place. So, Phil inquired and was told there were authorization steps to be taken. The doctor's office, however, was told there were not. Conference calls were made.

"Have Lucas go to the neurosurgeon and when the bill comes appeal it," advised the health insurance rep on the phone.  Yeah, how do you think that one is gonna work out? The good news? Since Lucas's last MRI (which looked totally clear), we won't need to go for another follow-up until a year from now. Man, I miss that little guy. Before I know it, though, I'll be home.

little miss a lot

I started to cry when I saw a little Asian girl clutching at her Anglo mamma’s hand today at the airport. Seeing her reminded me of an article I’d once read on an airplane about adoption. In the piece, the Caucasian mother who’d adopted a little girl from China relayed the struggles they faced in America. I only really remember a few details: that the kids at school gave the girl a hard time and told her that her parents bought her; the mother’s response being that oftentimes when there’s a birth, money is exchanged, bringing up hospital and doctor fees; the mother sharing with the reader that her daughter’s greatest joy is hearing about the day she and her husband went to meet her the very first time, how nervous she’d been, how she’d applied eye shadow to her lips, and how her daughter, and next, her sister, wanted to hear the story over and over again; and lastly, I remember the photos of the girls in their beautifully appointed bedrooms. I wonder, I thought as I examined their glossy lives, if they realize how lucky they are to have such beautiful furniture. What an odd thing to think. But seriously, it was really nice, and all the rooms had high ceilings and crown molding.

I didn’t cry today because the girl was Asian and I was reminded of how beautifully her mother responded to all her inquisitions, how she’d repeat the same stories again and again to the delight of her dimple-faced daughter. I cried because the little girl was wearing sparkly lavender flip-flops.

I’ve searched and searched, hunting for sequin-adorned sandals for my little girl, and I haven’t been able to secure, not a one. I miss her. It’s not that I don’t miss Lucas and Phil. Of course I do. But my Little Miss, I’m not there to watch her push her brother, or dress her in her pretty clothes and force her to wear her girly barrettes. In fact, I left in such a tailspin, that I fear Phil packed her up for New York without including a single rhinestone or ruffle. It’s vain, but it’s not. I just want to be near my Little Miss, for her to know she has a mama.

I miss Little Miss a lot more than a little.

preemie babies: they are... and they aren't.

I felt myself holding back tears at dinner. We went out tonight with a couple whose child is in the NICU. I wanted to show them how much we understood without making it about us and what we'd been through. I wanted them to know we wouldn't say the dumb things people tend to say when you have a child in the NICU, horror stories by well-meaning parents. It didn't matter that we'd gone through it ourselves and understood the pity with which people greet you. Because it wasn't happening to us. And I wanted them to know that I knew that. That I wasn't the kind of mother to go on and on about what we'd gone through. I wanted to ease their minds, to let them know they weren't alone, that it gets easier. And that it gets harder... the way it does for any parent.

As we listened to their story, celebrating the fact that their baby finished an entire bottle without d-stat'ing or having any A's or B's, I remembered it all so well. All those moments other people never understood, checking charts, and celebrating double chins, and lower doses of oxygen. I remembered the pumping room at the hospital, the conversations I overheard through the curtains. All the mothers pumped at around the same time, when the nurses were changing shifts, and due to hippa, all parents had to leave, so we didn't overhear one nurse filling in the next nurse about someone else's kid. So I read the same magazine as I had for weeks, there in the room, in the spot where the curtain wasn't falling down, and I listened to all the details I wasn't supposed to hear anyway, through a curtain in the pump room. A mother bragging that her preemie child had been spoiled by her. That the nurses said she was holding her child too much because when she had to leave, the child was inconsolable. It made her feel like a mother. She didn't say as much to the person on the other end of her cell phone. She didn't have to. I knew that feeling well.

It doesn't go away. I remember all the time, our time there. I remember the names of all the nurses. I remember "firing" one nurse. Or rather, voicing our concern and putting in a request for Lori, a nurse we loved. We speak with her still. I told the parents tonight this, that they'll make wonderful connections during all they're going through. It's hard not to. I hope they consider us as people they can turn to. I just want to ease their minds, to let them know, as alone as they feel in those half-hour drives home from the NICU each night, they are... and they aren't.

to market, to market, to fall on my rump

If you want to get all technical about it, the tots are fifteen and a half months old. But given that they were in tiny boxes trying to fatten up in a hospital for eight weeks, we're told to give 'em some gestational slack. Until they turn three years old, we're to refer to their adjusted age, which would mean that they're now thirteen and a half months old. It makes sense, considering they still should have been cooking for another 10 weeks in incubators.

I'm by no means worried, just reporting. Lucas doesn't walk, yet. No, that's not quite right. He walks along walls and all the furniture, climbs stairs, and up onto dangerous monster toys, then figures out how exactly to get back down (sometimes it's on his head, other times, ever so slowly, he lands on both feet).I love to watch him figure it out, especially when he's on his belly, that one foot feeling around, measuring its way down to the carpet. His first word was a few months ago. Baby. I imagine baby came first because whenever I see him, I say, "Hello my beh-be" in a random French accent. I don't know why. There's no excuse for a man to wear a beret, and I have no immediate plans to teach him French. "Oh, my beh-be, you're very sweet. Yes, who's my sweet bean?" I cannot help myself. Whenever I speak to Lucas, it's as though I'm chatting it up with Linus. How I love them both.

Luke (I find I'm calling him that now) says ball, baby, hi, hey, Papa, bye, hat, go, and car but walking he doesn't do. Not on his own anyway. I've of course heard the comparison drawn between infants and the elderly, from diapers to feedings. But I'd never once imagined a toddler with a granny walker.We have both a physical and occupational therapist come once a week. Recently, they left what can only be described as a hollowed shopping cart. It's made of aluminum, I believe. Shiny. The more he practices walking, the more comfortable. Yes, this is all assuming his sister won't mow him down with it.

Not only does Kind Sir have a "pediatric walker," he's also been given a girdle. The girdle was designed to keep his upper legs together, but it wasn't effective. Next, came in a corset, a leg corset, or "leg guards" if you will, to keep his legs straight. To look at him, you'd know none of this. Having a sister who has been prancing about like a sprite since she turned nine months hasn't exactly motivated him. He's on his own timeline, and I don't blame him.

Still, our goal is my stepsister's wedding in September, where he will be a ring bearer, and where Little Miss will be the flower girl. Either way, on his own or with the walker*, he's a little adorable dumpling, who also says agua (he's learning Spanish).And just about the sweetest thing I've ever seen is when Abigail stands behind him, grabs the handle, and pushes him like he's a shopping cart. I MUST get this on film!

*And as a side note, I deleted my un-pc reference, mostly because I tend to make fun of things that scare me. So please forgive the insensitivity.

ass-pies and cock-sacs

I stumbled upon a parenting forum where a mother referred to her child as an "Aspie Kid." How darling, I thought. I love nicknames. I bet it's for little ones suffering with asthma. It makes no sense of course, but Aspen was all that came to mind. No one is plagued with allergies in Aspen. Oh, I know, an Aspie kid is a spoiled brat who winters in Aspen. The locals call them Ass-pies. This is what my brain does. Then I continued to read, realizing Aspie was short for Asperger's disorder, which made me feel like the ass-pie. But only for a second.

A Jew who tells Jew jokes. A black man who uses the N word. There's an unwritten rule somewhere (with which many would disagree) that says it's okay to joke about things about which you should never joke when it relates to you, when it's happening to you, when it involves you or the ones you love. But when you do that, you validate and perpetuate stereotypes, you're feeding a cancer, some would say. Oh how fond we can be of the cliche about laughter neutralizing a sting. At fat camp, we referred to ourselves as fattoes and bested one another with our "you're so fat, when you sit on a rainbow, skittles come out" jokes.(Oooh,did someone say skittles? Where?) We were lame, but we were in it together, and the words never hurt because we knew they were always coming from a loving, not spiteful or judgmental, place.

When it's your child suffering, you're sensitive to what others say, what they don't say, even to a pause or sigh. And your world becomes too quiet and polite. There are too many caring messages you don't have the heart to return. The spaces around you become television shows on hospital TVs, with your small son on a white gurney, your sheets and pillow on the sofa beside him. And inside you feel quiet and wonder when it will stop, when things will go back to the way they were before, when you'll get normal back. And you say normal because there is a normal, despite all the people putting air-quotes around it. And you worry what your new normal will become. And in all that heavy, you need to break the fuck out of there. To say shit like, "Great, now we're gonna have a fucking helmet kid."

And as quick as we are to glom onto the safety of polite and politically correct, to charge upon any great offenders, we should be as quick to make a little room for humor when it's done without ill-intent.

As I read through just a small part of the Aspie forum, it came back to me, that feeling you get when you scour message boards looking for answers. I remembered what it was like trying to diagnose my son. What it was like to think, "Wait, my child isn't perfectly healthy?" I wasn't just scared of what I didn't know, of what wasn't being said, of what they knew and didn't yet. I was scared of my own thoughts, thoughts to this day I'd never repeat to another soul. I was so afraid and so wrecked, and in a way it feels like so long ago. And in another, it's something I know will always be a part of me. We don't get to choose what we remember, but I know I will always remember Lucas's eyes the day he needed emergency brain surgery. I didn't joke then, but I joked through the rest of it. I was inappropriate, which was appropriate.

In extraordinary circumstances, you can scream in a library or slap a doctor. You can eat everything or nothing. Can refuse to return calls, to lower the music, to sleep, or shower. You can live, at least for a while, as if you're the child.

I almost forget sometimes that my son has a shunt in his head. I took him to the pediatrician the other day for his wellness exam. He wasn't exactly well--with enough mucus slugging its way across his sweet face to make him worthy of the moniker "Mucus Lucas"--but he wasn't unwell. He had a cold. A normal cold, with a few red dots here and there. And there. Oh, and there. Still, I wasn't worried. When you become a mother and see enough things you don't want to see you don't sweat the small stuff. So he had a rash. Psshaa. Whatever. My Chicken Soup for the Neurotic Soul and I have been through way worse.

The doc manhandled the beans and told me Lucas had been behaving more like a Luke and had contracted some coxsackie virus. The first thing I thought: He got it from that tart in Music Together class didn't he? "Let's all click our sticks today" is just a song baby boy, not dating advice. Serves him right for sucking on her tambourine the way he did. I could joke because I'd worried once before, when Abigail got her own taste of "Cock sackies? Did you say?"
"Yes, it's a virus, but basically it's just a cold."
"Doctor, if it's just a cold, then why's it called..." She doesn't even have a cock sac, for Pete's sake! Okay, admittedly I was joking, as I haven't been that particular brand of stupid since I was rendered idiot with pregnancy brain. Besides it's fun to say "sac."

The fun continued when I learned coxsackie was really just a polite way of saying, "Your kid's got the virus of a barnyard animal." Or as the doc put it, "You know, it's commonly called hand, foot, and mouth disease." At which point, all I really heard was "disease," and then, without notice, all I could think of were the underside of hooves. First of horseshoes and then of a cloven hoof. My kid's got Mountain Goat Disease. Phil is going to kill me.

Remarkably, during that first coxsackie scare, I was relaxed, so relaxed, I was almost inert. When the doctor said "hand" and followed it so closely with "foot," I must have scrambled the letters into hoof. That, or I was clearly confusing "hand, foot, and mouth disease" with "foot-and-mouth disease," which affects sheep, cattle, swine, and Manhattan men.*

"Not to worry," he'd said. I gave him the "who's worried?" face, then sped home to google. So this time, when the doc shined a light on the roof of Lucas's mouth to show me a few red dots, I fanned away his concern and let him know I was a pro at this mom stuff.

"Yeah," I said, "It's just like last time. It was never on their hands or the soles of their feet, just here and there all willy nilly like it is now." And then we looked at each other for a moment. It took that long to realize I'd just said "willy nilly." I also realized how far I'd come. How far we'd all come, and it made me smile. "Besides," I added, "if this kid gets anything serious again, there's gonna be a whole new meaning for cock sacky." Then he snorted, and Lucas laughed. It was a good day.

* "Wait, have I told you this story?" Clearly men who have to ask are dating (first dating, at that) way too many women and cannot keep their self-stories straight, making the foot in the mouth syndrome more of a disease. But more on that tomorrow...

the international language of love

I feed my children sushi. Not raw fish, mind you, but a California roll never hurt anyone. And it certainly won't hurt mashed into itty bitty bite sized beads of sustenance accompanied by edamame. They eat smoked salmon, chilean sea bass (only off my own plate), and tilapia. They've had curry, now, twice. Seem to live for Saag Paneer (but don't we all, though). Had coconut soup, some "grilled cheese muffins," and caviar on New Year's. Today I offered them some of my sandwich: toasted rosemary bread, dijon mustard, Shallots Confit (seriously, aside from lemon curd, this is the best thing ever found in a jar), with heated pastrami and havarti cheese. While they stick to oatmeal and p-fruits (pears, plums, peaches, excluding pomegranates and prickly pear) for breakfast, when it comes to lunch, I try to take them from Italy to Istanbul. The problem?

My children have garlic breath, and it's disgusting. We keep feeding them hummus because it's so good for them, packs in protein, calories, veggies, all in a single tablespoon. They eat garlic portabella burgers. They don't make the non-garlic type, so I'm out of luck there. While they love to eat all the veggie burgers and boca burgers and veggie booty I thrust on them, what I really need to do is get them to eat parsley for better breath, ready them for kissing and all that goes with the international language of love, including croissant. I don't make them separate meals and believe they should always eat what we eat. We don't eat hotdogs or bologna, so neither will they. We do, however, grill cherry chicken sausage and bratwurst. I know at a certain age they'll be corrupted, that they'll fuss and only want chicken nuggets or some such thing. Though, I'm not certain when this actually happens. When do kids refuse anything aside from grilled cheese, fries, nuggets, pb&j, and pizza? I'm going to be ready for it, with my sneaky purees, because food is my language of love.

In the coming days, I hope to have a little tasting with them. I want to present them with different tastes and see which they favor. Salty, Sweet, Sour, Crunchy, Smooth, (and fat). Fat is actually a taste. It has its own silky texture, and people crave it. Sour is under appreciated in this country. It's why I offer them thai food and grapefruit. And you can bet, I'll be giving them small tastes of Confit of Figs and Balsamic Vinegar (so good served with cheese, but also incredible with a roasted beet napolean, where you layer the condiment with sliced beets, then shower with minced pistachio nuts and a touch of fresh mint. Yum.)

firsts

The first sound I heard this morning was a laugh. It came from behind their bedroom door. They usually awake each morning at 7AM. Today they slept in and chatted through their cribs. Delightful gurgles and chimes rang up through the air, like golden bells. At 7:30, when I inched open their door, they were both standing in their cribs, looking at each other, exchanging little laughs and sighs. Then Abigail realized I was in the room, turned to me, and said, "Mama," before smiling. Her first word.

She's been repeating it over the past few days, despite the fact that Phil continuously tries to "correct her" with "Papa." For a while, he insisted her first word was "Papa," but he's never been able to have her replicate it. The other day, he turned to me, and said, "Okay, I concede. I sat here saying 'Papa,' and all she wants to do is say 'Mama.'"
"Wait. I'm sorry. Did you just say you concede?" There's a first for everything.

I'm in the final stretch of my first ever scrapbook. I've made it 6 x 6 and am printing all the photos on 12 x 12 paper, then just slicing away. In this example the "yummy" text is actually printed separately onto transparency paper. I'm hoping to make this a book of their firsts, during their first year of life. I designed the shape of the title and hope to print those titles out separately, using a "print and cut" function on my silhouette personal die cutting machine, to avoid having to cut each shape by hand, then I plan to add them to the center of the damask-style papers using a raised pop-up adhesive to add dimension.

We're ringing in the first day of the new year at home tonight with three types of caviar, bilinis, capers, chopped egg, red onion...all the usual suspects. Phil's having white peach bellinis, while I'm opting for my saketinis (equal parts saki to vodka) with cucumber stick garnish. Yummy, indeed.

first birthday

A year ago today you were born.  Lucas and Abigail.  I wasn't allowed to touch you.  I was pumping and on the phone with loved ones, telling them we had both a boy and girl.  You were such a surprise.  We were finally able to hold you, to practice our kangaroo care, skin to skin with you.  So small and hungry.  We were afraid we'd hurt you.  They told us not to rub or pat your back, that your skin was too sensitive.  There was a point, Abigail, where I didn't know what your face looked like.  They had you hooked up to a machine with big tubes, and tape covering your face, a curly little hat, and a sleeping mask.  I could only see your neck, really.  And I remember the day you switched to nasal cannulas.  I was so excited to see you, the daughter I never knew was coming.  And sweet Lucas, when you were angry, you turned beet red, and it scared me.  You cried like a lamb.  And we wanted to soothe you but didn't know how.  So we sang.  Your father sang Happy Birthday whenever they needed to take blood.  It was the first song that came to mind.  "No!  Not that!  They'll learn to associate that song with pain!"  Then we laughed trying to think of a good giving blood song.  We're still working on a tune for that. 

I got kinda teary today.  I'm not one of those mothers who gets upset at each new milestone, feeling bittersweet knowing you're growing up.  I don't think I'm the kind of mom who'll cry on your first day of kindergarten, either.  But we've got time to prove that theory wrong.  Today I got teary when I remembered.  It comes in snapshots, really.  Still frames that I somehow still have a hard time piecing together, even though I was there for all of it.  It just happened so fast.

This morning, when I was alone with you both, and just talking to you without really paying attention to what the hell I was saying, I pulled one of these:

Knock, knock.
Who's there?
Us.
Us?  Us, who?
You know who.
No, you aren't supposed to come yet.  Get back in there.
Get used to it.  It'll never be the way you planned, mama. 

And then you two came, and today we're celebrating those two minutes, the minutes you two were pulled from me, the moment you entered this world.  It has been a year.  You were born on a Thursday night.  I know this because when the doc said I was going into labor, I joked, "No, it can't be!  I'll miss Grey's Anatomy!"  I joked because that's how I panic.  He assured me it was a rerun.  You two came so quickly after that.

Then the tears came today, right after the knock knock joke that wasn't a joke.  "I'm sorry I'm so emotional," I told you both as you climbed into my lap, hoping to eat the buttons off my sweater.  "I'm just so thankful."  And then I squeezed you both and kissed the top of your heads remembering you were once inside me, that I used to feel you kicking each other, used to watch you on a black and white ultrasound screen, a tiny blinking white dot of a heart, and now, now it's,  "Let them eat cake!"  There's a lot to celebrate.  You are both exquisitely loved.

while I was sleeping

While I was sleeping, the beans went for a ride this morning with Super Nanny and Phil.  He took these sweet photos of our sweet beans.  I am now off to run errands.  Tonight we're going to a cocktail party at a country club.  I imagine many of the women will be in skirt suits with colorful BIG jewelry.  Dresses.  Fashion.  Surprisingly, the women here really can dress when they set their minds to it.  When we first moved here, I was kinda shocked.  I'd been so naive, and thought people didn't really know how to dress outside New York and California.  I was an idiot.  What do you want?  I was invited to an Anthony Nak sample sale.  In New York, you go to a sample sale in any old thing, during your lunch hour or something.  So I showed up in jeans, remnants of mascara, hair in a bun, only to arrive to valet parking (at someone's house mind you), a staff welcoming you inside and offering you white wine or pellegrino, and a kingdom of women dressed to the tens.  I haven't been shopping in ages, and I'm really hoping to find something hip and girly to wear tonight.  Perhaps there'll even be time for a blowout!  Oh, how I love being a girl.  "Cocktail party attire" the invite says... martini bar... sushi... there is no better hour in the world than cocktail hour.  Not even happy hour!  And a whole party just for finger foods and adult beverages, well, I'm just glad I slept in this morning.

nanny be good

After a wonderful birthday dinner, where I ate like I'd never been to fat camp, I came home to the most delicious surprise.  Our nanny helped to create the most precious birthday cards I've ever received.  Inside, each card were the drawings (scribble) of my sweet beans, signed with love and their names... and outside, their sweet little handprints.  How absolutely thoughtful, creative, and... treasured.  We're so lucky to have her.

september beans

This Saturday is my birthday.  I don't know how much celebrating I'll be able to do unless I finish this last chapter.  There has just been so much going on.  It's hard to get work done.  I'm turning 32.  I'm eager to hand the sucker in, even though by no means will I be finished with the process.  I'll still have plenty of decisions and corrections to make.  But hopefully I won't feel as rushed or panicked about my choices, and hopefully I'll have some time during the editorial process for myself.  To get my nails done, hair, all the girl bits.  And to play tennis again, to swim, to walk, to get outside, and mostly to spend more time with my family.  I took these photos the other day of the beans and realize just how fast they're growing.  Lucas is right now in the hospital having an image-guided spinal tap of some fluid, just a little higher up on his spine than last time to see if anything bacterial grows.  I just know the white blood cell count is going to be higher than last time, even though he's doing so great.  The cyst has not improved, has gotten, in fact, slightly worse.  It doesn't make my heart hurt quite yet.  I just hope we learn something from this because he's still undiagnosed.  We still don't really know what's going on, and quite frankly, the neurosurgeon here is worried about what the last MRI pictures from about a week or so ago looked like.  So we'll see.  As far as the helmet, both his neurosurgeon and pediatrician both said he didn't need one.  So at least that's one less thing to deal with.  Next stop?  Letting these little tots eat Cheerios! 

And thank you for all your beautiful sentiments about my grandfather.  I took these of the kids two days ago, the day he died.  I know my dad will enjoy them.

mothering

"He feels hot."
"He's fine."
"No, he feels hot."
"I just turned up the air conditioning, and he was lying on me, so it's my body heat."
"No, it's not that kind of hot."
"Stephanie, please.  He's fine."

I wasn't buying it.  I whisked Lucas away, up to our bedroom where I kept the thermometer.  I stuck it in his ear.  97.8.  I guess I was wrong.  Still you feel hot honey belle. Maybe mommy is just crazy.  We go back downstairs.  I don't tell Phil I've just taken his temperature.  He thinks I'm neurotic as it is.  Well, I am, but still. 

You can't freak out every time he..."
"Yes I can!  Why can't I?!"  I'm his mother.  I'm allowed to freak out.  I'm allowed to be "all dramatic."

Later that night, come 3AM, Lucas is crying.  He feels hot.  Thermometer says 98.  There's just no way.  I search the house for the rectal thermometer.  102.9.  I want to smash the piece of shit ear thermometer against the wall.  What a complete waste.  I wonder how long he's been suffering.  I'd been out all day writing.  I start to cry.  I should be here.  I should know this.  I hate having to juggle things like this.  I'm an extremes girl.  I don't like doing anything halfway. And that's how I feel about my children.  I feel like I'm doing it halfway.  I feel guilty and inadequate. 

After Tylenol and Motrin proved mostly ineffective, Phil and I discussed the options.  What could it be?  "Stephanie," he screamed at me, "you need to help diagnose him with me."
"It's not my job to diagnose him!  I don't know what's wrong with him.  It can be anything!"
"Yes it is.  You're his mother!"
"I knew he had a fever.  I gave him medicine.  That's being his mother!"
"No, you need to go through it all with me.  BE MY PARTNER," he screams.  "AND STOP CRYING!"  I know he's frustrated, feels he's always the one to shoulder burden.  And that's true.  He is.  I cry more.  "Stephanie, go through it.  You're his mother.  Be his mother!  Is he tracking?  Is he listless?  Is he moving his legs?"

I hate when this happens, when we spin into a stress spiral and the yelling starts.  When he tells me to be Lucas's mother.  I feel like I'm not doing a good enough job as it is.  And he used the wrong fucking word.  I'm not a doctor.  I can't diagnose him.  He wanted me to assess him, to make a mental note of his symptoms.  Had he said, "Please let's walk through this together, so we're on the same page..."

Now, I could finish the above sentence a few ways... Had he said X, we could have avoided an argument.  Had he said X, I would have understood and walked through it with him.  Had he said X, I might have said, "don't tell me what to fucking do!"  It might have been a misunderstanding, but I understood, quite clearly, the subtext of his words: YOU FUCKING SUCK AS A MOM.  So I cried, because maybe there was truth in it.  But really, I don't believe that.  I know I'm a good mother.  I'm just not Phil.

If I noticed anything else out of the ordinary, I'd be on the phone with a doctor or in the car on the way to the hospital.  Or I would have pointed it out because realistically, I wouldn't just whisk him off to the hospital without discussing everything first with Phil.  Phil points out that Lucas has been grunting.  I didn't pay much attention to that, assuming he was constipated. I couldn't get past the point that he had a fever.

The next day, yesterday, we decided to take him to the ER.  Phil stayed home with Abigail.
"Is that Lucas?" they say as I walk in. We take our little room.  The Home Shopping Network is on, this normal backdrop to these abnormal events.  I'm reminded, as I pin Lucas down, staring into his wide eyes as he screams and cries, as he looks at me panicked and tortured as they draw blood from his foot, that people in this world are sitting on their sofas, at their dinner tables, clicking through television channels, ordering earrings from HSN for their mothers.

Lucas's fever breaks.  The x-rays of his chest and belly come back clear.  He's released from the hospital.  We're due to get on a plane tomorrow for New York.  I don't think it's a good idea.  While I want to see my family and friends, and sure, to go to the US OPEN, I don't want to risk his health, even if the risk is slight.  I don't want to be in New York and for him to get sick, in a strange environment.  I just don't know.  Today we're going to see his neurosurgeon to discuss all the second opinions.  Maybe he'll have one on flying with a child who had a fever just a day ago.  But maybe it won't matter what he says.  I feel like I've already made up my mind to stay with him, as Phil goes to New York with Abigail--which kind of breaks my heart.  Because I'll miss her too.  I don't want to be away from them, but I also cannot take care of two babies all by myself without any help and still get writing done.  In fact, I can't take care of just one baby all by myself, without any outside help, and still get work done.  I guess the writing will have to wait.

waiting

We're in the waiting room.  Lucas Beckett had another lumbar puncture.  A brain and spinal MRI.  It takes about three to four hours.  They want to compare these images with the ones taken last week.  Are things better, worse, the same?  They suspect the same, but they'll know once the tests and images are in.  They drew blood and fluid, want to compare the numbers. 

I hate having to initial forms, implicating that they've warned me properly.  Explained all the risks.  Scribbling an S and a K beside phrases like "brain damage," "infection," and "paralysis."  My signature in case.  In case things don't go as expected.  Blood transfusions, necessary measures.  I have to remind myself to breathe. 

We've been gathering second opinions from children's hospitals in Cincinnati, NYU, and Boston.  I'm still waiting to hear back from Boston. My stomach dropped when I heard "I definitely believe the cyst has to come out.  It's putting pressure on the spine and might cause complications down the line."  Well what's involved in surgery?  "An incision from neck to the top of his shoulders.  We'll remove bone," he said.  We need to make sure there's no infection going on, that if and when someone operates on his spine, that infection isn't spread, if indeed there is a localized infection.  We want to learn what the culprit of this cyst is, and then of course, figure out exactly what to do about it.  What all the risks are. 

He's in recovery now, and like always, we're waiting with him... initial results: his white blood cell count is very high.  615.  Normal is 0-30. Last time it was 506, also high. I hate this.  I hate that spinal surgery is in his future, that they don't know what caused it.  That I'm closer to answers I don't want to hear.

seconds

Photo taken this morning...more on my Flickr page>>

He's happy and home now.  Smiling, cooing, cute in a way I've never seen.  More active, interactive, and joyful.  I'm happy in those moments, when I'm beside him, witnessing just how okay he is, how normal, what a baby.  But when I'm driving or in a cafe writing I remember the last time he giggled.  He was happier than I'd ever seen him, flirting with the nurses at the doctor's office, the day before he needed emergency brain surgery.  So I don't know how much comfort I can take in his happy.  I'm scared of what's inside, of all they don't know. 

He's going back to the hospital this Thursday, where he'll be sedated for another spinal MRI and lumbar puncture.  By Friday morning we'll have a better idea of where things are.  Compare films and fluids.  Numbers.  Sizes.  Cells.  Have things stayed the same, settled down, or progressed?  To biopsy this obstruction would be very invasive and not without a significant host of risks. They still aren't sure what we're dealing with, or what if anything is done about it. 

These next few days are a reprieve, my chance to get some writing done.  My chance to enjoy my son before I return to full-throttle worry mode.  My chance to return all the extraordinary emails I've been receiving.  My chance to gather all the information and send it for second opinions, hoping someone will know exactly what we're dealing with. 

sushi dinner

Phil and I left the hospital last night for an hour.  We were both breathing a unified sigh of relief.

Here's what it's not: TB, Toxoplasmosis, a syrinx.  A syrinx is INSIDE the spinal cord.  Lucas's cyst is outside the cord.  It MIGHT be an arachnoid cyst. A ventral (front) intradural (between dura) arachnoid cyst.  It's about as rare as they come.  And it being in such a tricky spot makes it very hard to remove.  So our worry is by far not over.  Of course I'm scared shitless that it will grow, will add pressure to the spinal cord, will cause his movement to change.  Of course I'm still terrified, but at least I know about what I'm terrified. 

Oncology finally got back to us late last night, after waiting the entire day to hear the interpretation of his high LDH results.  They thought it was highly unlikely that it was any type of cancer/lymphoma, etc.  They cannot rule it out 100%, but they find it very improbable.  Very.

So now we're back to the neurosurgeon who needs to guide us through the options.  Phil and I are feeling much better... but of course, there's still an inflamed spinal cord.  And we need to figure out what's next.  But I do feel better knowing what it's NOT.  Now pardon me while I go google "arachnoid cyst."

where we aren't

WE STILL HAVE NO ANSWERS.  His platelets are fine.  His uric acid is fine.  His LDH is high, at 506.  We've been waiting all day for the oncologist to interpret these results.  Maybe they're fishing because they simply don't know what it is.  I hope that's the case.  I know it's strange to hope for that, but I hope for that over hearing the words leukemia, lymphoma, or bone marrow.  If they rule out cancer, which I really hope they do, my next question is, what's next?  Leaving this cyst has already caused hydrocephalus.  What else might it cause?  I don't want to have to wait until he's a quadriplegic to do anything.  I also don't want to risk harming anything if we needn't go in there.  It's such a strange balance to have to weigh.   

They're running more tests.  Tests for cancer. The thing we keep hearing is, "This is very rare.  We've never seen this in a baby before."  Great.  Just great.  "I encourage you to start asking for second opinions."  The infectious disease doctor thinks it's highly unlikely that this obstruction was caused by something infectious.  The neurosurgeon believes something else in the body has caused the obstruction, that it's highly unlikely that he was born with it (because of where it is).  The oncologist thinks it's extremely unlikely that it's lymphoma (but can only know for sure with fresh spinal fluid).   They're doing an initial blood smear to watch the behavior of his cells.  If they're behaving abnormally, they're then going to go in for a spinal tap and some bone marrow.  If the blood doesn't show signs of abnormality, then we're still left twiddling our thumbs.  And, if the obstruction caused hydrocephalus, what else can it cause?  You don't want to go in and remove it (being that it's so small and you can risk nerve damage, etc.)  So what happens if it's not removed?  I don't want to wait for something bad to happen.  But I also don't want someone going in there and just making things worse.  So that's where we are.  Or where we aren't. 

update with an update and an update

UPDATE #1: The results of the spinal MRI are in.  There is something obstructing the flow of spinal fluid.  They showed me the MRI.  There is a narrowing of the spinal fluid in the neck area, and then a bulge of fluid just beneath that, indicating a backup.  Literally a bottleneck.  In his neck.  The fluid should be uniform all the way through, but it's narrowing, and then as you look lower down, further down the spine, it bulges.  The neurosurgeon has not seen this yet because he is in surgery.  When he's through with surgery, he'll give his analysis.  And then we'll determine what to do.  The fluid in the MRI does not indicate an infection (which still doesn't address the white blood cell count being so high).

Is this something that was there at birth?  Is it only being seen now because of some kind of infection?   Is this related to some form of meningitis?  Is this related to the shunt?  Is this something that might have caused his hydrocephalus or is it a possible result somehow of it?  This is my list so far.  I'll post more updates as we move through the night, mostly for my own sanity.  So there's a record of all this, so I needn't keep retelling the story or status. "We're only giving him clear fluids now because he might need to be in surgery soon, depending on what the neurosurgeon says."  OH MY GOD.  I hate this.  Phil's parents are with Abigail now, and he's on his way here, to the hospital.  Thank you to all of you for your prayers and thoughts and love.

UPDATE #2: The neurosurgeon said he believes this obstruction is what caused the hydrocephalus in the first place.  He believes it has been there for a long time.  The obstruction is in the front of the spine, not the back.  It's up high, in the neck, cervical area.  It's very rare, he said, not impossible, but rare for this kind of obstruction or narrowing in this exact place (in front) to be congenital.  So, he thinks SOMETHING ELSE might have caused this obstruction.  Meaning... this "obstruction" might be a cyst that was caused by something else!  So now they need to scan his whole body for tumors, for cancer, for anything I guess that might cause a cyst or anything else that might be this obstruction.  It could also have been caused by an infectious disease. 

He does believe this, whatever caused the obstruction, has been chronic.  Since Lucas seems fine and all his limbs react fine, etc., there's no immediate need to operate.    They might have to do another lumbar puncture to test for something else... for cancer cells or something like that.  They were so focused on infectious end of things that he didn't think they sent his fluid for cytogenetic testing.  AND THIS IS FREAKING ME OUT.   

His meninges are inflamed from his tail bone up to his neck, but his vertebrae are all fine.  So could be some kind of chronic infection or something else.  Basically, I still don't know what the fuck is going on.  I have no exhale answers.  Nothing I can say, ah, okay.  So here's how we fix it.  Now I've got all sorts of frightening thoughts in my head.  I said to the doctor, "But I'm so confused.  I don't even know what to google anymore."  He laughed, mainly because he doesn't know either.

What it isn't: chiari malformation, cryptococcal anything, or pms. That's about all I know.  There are a lot of "most likely not"s and "highly improbable"s" being thrown around.     All the doctors are scratching their heads because it's very rare that the fluid drawn from his spine would be different from the fluid drawn from his head.  But the shunt is not infected and is working fine.  So now the question is, and has been, what is causing his white blood cell count and protein to be so high in his spinal fluid (the fluid taken from the spine, not the head).  It's most likely not viral meningitis because that rarely has high protein.  They doubt it's bacterial meningitis because he's acting fine, and nothing has grown on his culture yet.  So what the hell is it? 

Yesterday we had a family outing.  Woo hoo!  We all went to get tested for TB!  Fun.  Lucas stayed in the hospital as the nanny, Phil, Abigail, and I went across the street for our pricks.  Results won't happen for another day.  But so far so good. 

Lucas is now having a spinal MRI to rule out anything anatomical that might be causing the yellow spinal fluid.  Maybe there's an obstruction of some kind.  And of course when I hear "obstruction" I think "tumor."  Cause I scare the crap out of myself.  No one has answers.  We might have some later, after his spinal MRI.  I have 'rhea again.  Abigail has a rash on her tush that won't go away.  It's about the size of a dime.  And she's now projectile vomiting every once in a while. Oh joy to the world. 

Updates to this post appear above

venting 104

I need to vent.  I don't like talking on the phone because then I have to hear tone, those small sounds that seem to make it across the phone lines.  A sigh or a slight tsk.  The heaviness in words and breath, it all has texture when I can hear a voice on the other end.  I feel myself trying to calm other people.  Wanting to put their minds at rest, which in a way, I guess they hope they can do for me too.  But I hear myself lying.  Not strength doing the talking, not protecting the listener, but mostly--and this seems so out of place--hiding things to avoid some kind of judgment.  When I worried he might be autistic or next, worried he might have some shade of mental retardation, I didn't want to let anyone think it was a possibility because I didn't want their pity.  I didn't want their, "isn't it horrible what she's going through."  Even though these things are said behind my back, not to my face.  And it does suck that I'm going through it, but hearing the concern makes me defensive.  "Don't feel sorry for him!," I want to snap. "He'll be fine, you asshole!!!" 

But I don't know if he'll be fine.  And it makes my face twist into a knot, and liberates a wail I can't suck back in.  And I cry and shake into the hospital sheet.  I want to protect him from your thoughts and so sorrys.  From the possibilities of what this can be, and from anyone who ever underestimates him.  And I guess it hurts most when I underestimate him.  When I hear from the doctor that I should be very concerned.  That the fluid had a white blood cell count of 150, and it should be in the single digits.  That there's high protein in there too.  And these aren't blood work results.  It's spinal fluid.  Something is going on.  It's not benign.  It's serious. 

Infectious disease doctors come in to speak with me, asking if I ate raw meat or gardened or was near a cat when I was pregnant.  No, I respond to all these things.  No infections.  No fevers.  No sickness through my pregnancy, and he's got a healthy twin who was in that womb with him.  They want to rule things out.  "If it is meningitis, it's not the kind that college kids get, where they're fine and then tragically die the next day.  And besides, Lucas is not acting like a kid with meningitis.  He's smiling and cooing and he has no fever."  Still something is wrong.  People crowd into our room wearing yellow surgical masks and gloves now. 

The spinal fluid was then drawn from his shunt (the same type of fluid, but this time, not drawn from his spine but from his head), and that fluid is clear.  In an hour, they say, they'll have preliminary lab results on that fluid, letting us know what the cell count is on that fluid.  And an hour goes by, and I start to pace and ask for it.  Over and over.  "Well it's not in the computer."  I don't care.  Pick up the phone and call the lab.  The neurosurgeon said I'd have the results in an hour.  "Well I just called the lab and they said the tests they wanted to run had to be sent out and we won't have them for days."  NO!  That is not true!  Except I don't scream; it's not my way.  "Listen, I don't care what they said, or who you need to call, but I should have results now.  Period.  Someone screwed up.  I don't care who it was.  I just want an answer."  The nurse takes off, returning with the news, "well, the test was put in, but for some reason the order was never put through, so now the lab will have the results in an hour from now."  I could do without all this.  I shouldn't have to be, quite frankly, on top of these kinds of things.  I should be comforting and feeding and watching my son.  And maybe trying to sleep so I'm not completely useless tomorrow. 

I will hopefully, within another half hour get the cell count from the clear fluid that was drawn from his head.  Though I don't know what that even tells me.  Let's say it's perfect.  So what?  What's next?  We're still waiting around for DAYS for all the infectious disease stuff to get back.  TB, Toxoplasmosis, Meningitis, and who knows what else they're testing for.  Initials.  CPV or something like that.  They want to rule everything out.  It could be the shunt, but why would the shunt fluid be clear?   

So does this mean the yellow fluid they tapped from his spine is completely unrelated to his shunt?  We don't know.  I don't have answers.  When I hear they might have to remove the shunt, just to rule things out, I begin to panic.  Phil and I agree we don't want to be alone anymore.  We call our families and tell them to please come.  We cannot do this alone.  "I want bodies in seats," I say to him.  "I need our family."  And he agrees, completely. There is, holy shit, a first for everything.

And I'm thankful for this blog because the I'm so sorry's don't ever hurt when I read them.  Is there anything I can do never hurts.  It's only when I hear it.  It's why I don't answer my cell phone.  It's why I haven't called any of my friends back.  It's not because I don't need you... I just can't bear to bring myself to say it all again, to hear the apologies, to tell me you're there for me.  I know.  But this is what works for me. A computer screen and a world of people who can reach me through it. 

unlearning process

He's asleep right now, in the hospital bed beside me.  Almost an hour ago, they did a spinal tap.  His MRI looked fine, but radiology saw an enhanced area that the neurologist seemed to believe was nothing.  It might mean infection, they say.  Let's just rule out meningitis.  That's all I need to hear.  My emotional RPM zooms full throttle.  I feel I might need a paper bag but know I'm overreacting.  That there's nothing to react to yet.  But my nerves can't help it.  And my stomach.  My whole body is a tense rope of knot.  And I know I can't act afraid because that's more of a burden for Phil.  To play the consoling mode.  And he's been through enough.  He doesn't complain.  He takes things on by himself.  I, however am not him, but he's going through this too.  I kiss him goodbye as he goes to replace me on the Abigail shift.  I keep watching the clock, waiting for the news.  A nurse comes in to tell me the fluid drained from his lumbar puncture was yellow.  "But the doctor isn't worried about that," she says quickly, knowing by the sight of my face that my imagination is about to sprint away.  "That's normal because he's just had a shunt put in not too long ago."  And I think, not too long ago?  It's been like three weeks.  It shouldn't still be yellow now should it?  "Yellow just indicates there was some bleeding, but that bleeding is normal when the shunt was..." I zone out.  I don't believe her.  I want to believe her, but instead I'll choose to keep belief out of it.  I'll wait.  And watch a clock.  And listen to my stomach growl.  And wonder when I'll get the initial results.  "Well non-chemical meningitis is possible, which just means a presense of white blood cells without the bacteria."  Stop saying the goddamn m-word.  If there are "cells" they keep saying, as if "cells" are the flying monkeys in The Wizard of Oz.If there are cells, we'll run a culture and watch it for days.  The cells can tell us all sorts of things.  But ideally, there would be no cells.  I hate this.  This immediate torture of waiting, and then the torture of possibly learning something I'd rather not learn.

jerks

He's in the hospital again. 

Wednesday we had the 20 minute EEG, then the neurologist came to give Lucas a physical exam.  I had to remind myself to breathe.  Phil and I were terrified, basically wondering if we even wanted to know the results.  What if they're really bad?  Maybe ignorance is bliss, right?  And to be quite frank, we left knowing nothing.  Just as clueless.  "Well, I saw some irregular things, I guess."  What?  You guess?  I don't understand.  What does this mean?  What do you mean?  "Well, these kinds of tests aren't very accurate.  It could have just been his head moving."  What?  If it's not accurate then why do it?  Here's what we did learn: he's not having seizures.  We already knew that!  I never said they were seizures, what I've said all along is that they're jerks, the kind we get when we're falling asleep, but he has them when he's awake.  He did this before the shunt, I explain.  I get no damn answers.  No "what caused this?" or "what can we do about it?" answers.  No "what the hell is it even?" answers.  Phil and I left annoyed. 

He's projectile vomiting everything and now also has diarrhea.  I do not believe this has anything to do with his shunt.  I think it's a teething thing.  We take him the next day to his pediatrician, in whom we have total confidence.  Lucas has no fever, no appetite, maybe a cold.  We're most concerned about dehydration since he's keeping nothing down.  The doc tells us he suspects the little man's got a stomach virus that's going around.  I wonder why Abigail hasn't caught it.  Maybe there's something else going on.  This morning Lucas was still unable to keep anything down, and still has the 'rhea.  The 1 tsp./4x day of Mylanta ain't workin'.  So now, Lucas is in the hospital again.  Hooked up to an IV so he doesn't get dehydrated.  They did another cat scan: all was fine.  Did a shunt x-ray: all was fine.  Blood work: waiting to get it back, but think it's fine.  They're doing a special x-ray for his upper GI, to see if some hole might be too small or something.  I don't really know.  And he's getting another EEG, this time a 24-hour one to see if there's any kind of pattern or problem.  The EEG is a crap test.  The 24-hour one is a less crap test than the 20-minute one, but just the same might not tell us all that much.  Mostly, we've just been told he's got slight myoclonic jerks, not myoclonic seizures.  Big difference. And we're thankful for this news, if one can call it that.  I suppose we'll learn more in the coming days, but we might not.  I just want the little guy to feel better, to be able to enjoy himself, and for us to be able to enjoy him right back.  At least the kid is in good company; now his stressed out mama's got the 'rhea, too.

fear on the horizon

When it's me at the doctor, for my own body, if there's any bad news strung in with hope, I'll cling to the bad, certain I'll meet my doom.  But when I left Lucas's neurosurgeon's office, every warning about the possibilities of what might happen, or could happen, was pretty much ignored.  One in ten kids with hydrocephalus might get epilepsy.  Not Lucas, I thought.  Most continue to live completely normal lives, and he'll most likely be able to do exactly what any other kid can do.  He'll graduate from college.  These are the things I heard.  He just won't be able to play football, hockey, or wrestling.  No contact sports.  No boxing or karate.  No kicks to the head.  "So I guess that means he can never get in a fight," Phil says to me later.  "I mean, that sucks.  I don't care that he'll miss out on some organized sport, but guys roughhouse.  And it's going to be up to him at some point to choose to be left out." 
"Yeah, if that's the worst of our problems, we're doing fine," I say.  "And we have years to figure out how to handle it.  In the meantime, he'll get tennis lessons."  And there's always basketball, soccer, track, swimming, baseball, and golf.  "He can do ballet," the neurosurgeon says.

The soft spot on the top of his head, his fontanelle, is quite small.  It's still there.  The bone has not yet fused together, but I ask what this means.  "It's not good.  It's not bad.  Every kid is different. It doesn't mean anything."  Yes, but the neurosurgeon we saw in the ER the other day said it was a sign that Lucas couldn't have been suffering with this for very long.  If he had, the fontanelle would have grown bigger to accommodate for his expanding brain as it filled with fluid.  "Yes, that's true."  So that is a good sign.  It means this was sudden and we caught it early.  But no one really confirms this; it's just what I take away with me. 

We looked at the comparative cat scans and x-rays of the shunt, which were all very encouraging.  Lucas is out of immediate danger, so long as his shunt doesn't malfunction or get infected.  It takes months for the size of the ventricles to decrease, but they already are (albeit slowly).  The doctor checked Lucas's tone, his muscles at rest to see if they are rigid or too relaxed, and it was fine.  All good signs.  The jerking movements, the neurosurgeon says, might have to do with the decrease in pressure of his brain.  That she's not concerned right now about them.  We've scheduled an MRI for Lucas before our next follow-up visit, in a month.  We're going to see our pediatrician then see a neurologist.  They suggest waiting a bit though, a week or so.  But I don't want to wait.  Phil has me in a panic.  He's researched and googled and thinks Lucas has infantile spasms, which ain't good.  But Phil's no doctor, thank God, and no one has mentioned this possibility to us yet.  I hate self-diagnosing.  So now we have to check this out, by hopefully getting to a neurologist soon.  I want to take Lucas to a neurologist in the next day or so, if only for my own piece of mind.  I hate being this concerned, this frightened.  Phil tells me there's a 75% chance of mental retardation linked with infantile spasms, which of course leaves me beside myself.  And no one has even told us Lucas has this!  Though when I read the symptoms, it does sound exactly like what Lucas has:

The initial manifestation may just be a minor twitch of a single limb or eye. However, there are often associated symptoms. Many children who develop infantile spasms also have feeding difficulties and develop reflux. (This would explain his recent vomiting while eating). Arching backwards while feeding is an indicator for infantile spasms. (He doesn't do this).  Many children who develop infantile spasms also have sight difficulties, and failure to focus and track visually is another indicator.  (He actually can focus and does visually track).

They say the onset of myoclonic spasms happens between 4-8 months, which is where we are now.  And it all makes me ill.  I want answers. I want them to rule things out.  To tell me even if that is what Lucas has, that it's the second kind of myoclonic spasm, "the twitching of one or     more muscles, associated with a spike wave EEG. This is usually     associated with various benign epilepsy syndromes - benign myoclonic     epilepsy of infancy, juvenile myoclonic epilepsy, etc. Children usually     grow out of these forms of epilepsy, with little or no ill effects."

I need to calm down and take things as they come.  But this panic doesn't just go away with each appointment.  There is always a new fear on the horizon. 

And I hate that once upon a pregnancy ago, I titled this category "babies on the brain." 

fault

The other day--well, not the other day, but a few days ago, before all this drama--Phil and I were taking a tennis lesson.  Not many people know how much I love tennis because overall, I pretty much suck at any and all sports.  Aside from water sports--no, not those.  Mostly swimming thanks to the North Hills swim team.  Anyway, the point is, I love playing tennis.  My mother forced me to take tennis lessons as a kid.  "You'll thank me one day," she'd answer in response to my "why are you forcing me to go?  I hate this!" tantrums.  And I do thank her because now it's something I enjoy, something both Phil and I like to do together.  We play at least once a week together, usually more. 

During our lesson, we decided to practice our serves.  I've been avoiding it this whole time, preferring to focus on my utter lack of shape.  The instructor, Izzy (short for Israel), had me practice the toss, keeping my left foot planted on a plastic dot he dropped just behind the base line.  "Your foot shouldn't move off the dot if you're doing it right."  I still can't serve.  "If you're moving off the dot, your toss is too far away, or you're working too hard."  Working too hard--something about which I know a thing or two.

So I watched Phil serve, focusing on his foot.  Was he stepping over the line?  Was it his fault?  This isn't some metaphor for life or illness or how to deal with anything.  I just got to thinking that I really, so much of the time, in our arguments, and now with Lucas, want a place to point a finger, even if it's at me.  I want to create a fault line and be the official calling out the faults. 

"I caused this to happen," I say to Phil, "because I couldn't get pregnant."  That was my fault.  Well, it wasn't my parents' fault, or my fishmonger's fault.  It was my body that wasn't operating properly.   My ovulation is still all over the place (I've had my period twice this month, and that's before all this started.  Think about that.  I've had my period every other week!).  Does it have anything to do with my having had an abortion once upon a life ago?  Hell, no. Does it have to do with my miscarriage?  Again, no.  And then I finally got pregnant with twins--was it chance because twins do run in my family, or was it clomid?  I don't know.  What I do know is twins can come early, and mine did.  And I feel like it's my fault. Yes, I went to Laura, the preventative pre-term labor specialist once a week, and I kept clear of stress, or tried to.  Kept off my feet as told.  Drank my water.  Called the doctor, was a lazy shit, just as they instructed.  And the beans still came early.  And I still think it was my fault.  Because it's my body that couldn't keep them longer, protect them from the world, and it's my body that had such a hard time getting pregnant in the first place.  And what if I caused all this? I was the cause of twins because I couldn't get pregnant on my own, maybe.  And this, this is mine.  My stepping over the line.

Blame is something we take and give far too easily. So I take a step back and think, I did the best I could to take care of them while pregnant.  I didn't eat fish because I was terrified of mercury.  I hydrated and ate.  And got so fat the shit from Old Navy wouldn't even fit.  So if it's anyone's "fault," it's the hospital for not catching this right away.  If there was even any bleeding then.  Maybe his CT from the NICU was fine, and maybe this happened later, much later.   And then there is no fault.  We look around hoping to assign blame and shout out a series of "faults" because it's our way of making sense of things that might never make sense.  And it gives us the feeling of taking control, even though we can't.  It's exactly as I said it in Straight Up and Dirty: let it go. Finding these things out won't change anything going forward.  And that's what we're doing, moving past the base line, moving forward. 

And as an aside, I can just tell, some close friend of mine, any day, is going to tell me she's pregnant.  And she's going to be afraid of telling me her exciting news when I'm dealing with what I am with Lucas.  And that sucks. 

I can't be everywhere at once. 

I can't fully be happy when I'm so steeped in this.  Happy for her, sure, but happy, let's go drink some maternatinis, no.  But of course I would be happy in a general sense, the two having nothing to do with each other.  And I still have plenty in my own life about which to be happy, especially my sweet little tater tots!  It kind of sucks when people are afraid to talk to you.  And it's kind of wonderful when strangers reach out.  So thank you again.  It really does make this somehow something we're going through... in a really strange, did she really just write a metaphor about tennis, kind of way. 

cabin pressure

"I haven't really reached the anger stage" I said to my dad this morning.  But then I thought about it.  So not true.  A reader emailed me today.  Said she's "been following the blog for years" and then, I expected to read a sympathetic story, something including best wishes, or hopes, or anything having to do with thoughts or prayers.  Instead, she proceeded to ask for dating advice, actually including, "Do you know any early 30s successful Jewish guys???"  You're fucking kidding me right?  "You seem to know a million men in New York from your stories."  Right, 'cause I look so fetching in matchmaker garb. 

My point is twofold, here.  Probably not the smartest thing starting off your email saying how much you love the blog, and then obviously not reading it.  And the second point is, ordinarily, I wouldn't react this way.  I wouldn't care, I'd just assume she needed advice, was reaching out, going through her own dramas, hadn't checked the blog, who cares.  But I so wanted to lash out at someone.  I didn't go off on her because I knew, understood, that she couldn't have read my latest posts, couldn't know what's going on.  I did email her back telling her I so wanted to rip her a new one... but I gave her the benefit of the doubt.  She apologized and admitted she hadn't read since the advertising post. Who cares, the point is, I am pissed.      

I might never learn the "whys," won't necessarily know what caused any of this.  I won't know how any of this will affect him longterm.  It's all a waiting game, the kind of game no one wants to play.  And I want to kick people in the head who say, "well, if I were you, I'd try to find out what caused this."  Wow, really?  Thanks.  'Cause I never would have thought to try to get to the bottom of anything.  So glad I can count on you for all the smart things you say.

I'm angry.  I know because I'm sometimes that person, saying those dumb things, out of nerves, maybe, out of an attempt to be helpful.  It doesn't matter so much that it's not.  And man, then I get the stories like, "Oh, I know someone who had a shunt, but he went into a coma.  But that won't happen to Lucas."  WHY THE FUCK ARE YOU TELLING ME THIS?  And please, I know you mean well, but I don't want to read about how my son is like a trip to fucking Holland.  You know, there are tulips and windmills in Holland.  It's a nice enough place, even with your heart set on Italy and all.  I'm angry.  Forgive me for going off.  I usually don't.  But are you FUCKING KIDDING ME?  Parents have to take their child to the ER for emergency brain surgery, and you want to talk to me as if my son is already disabled?  Talk about putting the cart before the horse.  Jesus.  And I really am sorry for going off.  I know how awkward and hard it is to reach out to someone in pain; I know because I'm often the idiot saying the wrong thing.  None of us is perfect.

I was up all night with "I think I'm going to die right here" 'rhea.  Cramping and sweats.  I am exhausted and strung out now.  I have a leaden knot buried in there, barreling and tightening.  Every bit of me is clenched.  I keep wringing my hands in the air, hoping to release some of it.  I'm afraid to leave the house for a walk, terrified I'll miss something.  "Take care of yourself, so you can take care of him."  I know.  And I understand when the plane goes down, I'm to put the oxygen mask on myself before attending to others.  I get it.  I believe it.  But right now, I can't do it.  I just can't. 

I'm certainly not playing the whole "why me?" card.  I don't think this is some kind of test from God.  I don't think it works that way.  When it's my shit, then yes.  When I find my husband is dicking around, lying to me, yeah, that's my test.  How will I respond?  That's what defines who I am.  But this isn't happening to me.  It's happening to Lucas.  And I feel it, but it's not about me.  It's not my test.  Maybe it's for him, so one day I can tell him what he overcame, how strong he is.  Maybe it's not a test... just the way life works.  There's not always an answer for our whys.   

I'm scrutinizing everything just the same.  Lucas was released from the hospital (again) yesterday morning.  He was with us all day, at home.  He wasn't smiling or giggling, really.  But give the kid a break; he's not a circus act.  He doesn't seem happy. He has small moments where he'll smile, especially when I play with a cookie monster puppet, but overall he's crying. Which is better than sleepy and out of it.  He's not in immediate danger right now.  He's tracking and crying and awake.  He's just pissed off, like his mama.

I held him some earlier today.  He calmed down, and continued to jerk.  It's the kind of jerk I get when I'm falling asleep.  That involuntary kind of out of nowhere jerk.  He does it when he's awake.  The doctors have said it's normal, that it can happen as a result of all the changes in his brain.  He's got a change in cabin pressure, I think to myself.  Even though the pressure has gone down, not up, his brain is reacting.  AND IT SCARES THE SHIT OUT OF ME.  There.  I said it.  He's jerking and twitching, not his face, just his arms and legs.  They aren't rigid seizures.  He's still tracking.  He can look up.  The soft spot on his head is still soft, or indented. But damn it's small... and Phil and I have a hard time finding it.  He doesn't seem to be in immediate danger.

And that's good.  But it also leaves us in a state of panic, watching and waiting without answers.  Scared when he does fall asleep.  Is it because he's cried himself to sleep, exhausted himself, or is it because the pressure in his head is making him tired?  I know in life there's not always an answer to our why.  I want to be told he'll be fine, that the twitching is totally normal and will go away.  I want to see him smile more.  I want him to be happy again.   Tomorrow, thank God, we have a doctor appointment with his neurosurgeon, where we'll go over our list of questions, a bunch of which he won't be able to answer with anything more than, "time will tell." So we're videotaping the suspect movements, because without a doubt, kids try to make liars out of you when you're actually in front of the doctor.  "I swear, he was twitching all day, but now that we're here..."  Pants on fire parents.  So we're bringing proof. And I just nearly finished off an entire Entenmann's New York Style crumb cake in about two sittings.  Walk away from the cake.  Put the spoon down.  Yes, cake with a spoon.  Issues. 

i'm a mess

"Be strong."  I hate that shit.  I've actually always hated that shit.  I hate it when I hear it in a movie, or on TV, or on some "love songs at night" radio program.  And I know why people say it, I guess.  But not really.  Do I smile for Lucas and Abigail, so they don't worry?  Yeah.  But that doesn't make me strong.  It makes me an actress.

Lucas was released from the hospital, as expected... but now he's back.  This sucks.  He spent the night at home with us, a happy little clam.  But when we held him, he jerked a little, as if he were startled, and when we fed him, he was still throwing up.  Well, that's not good.  But we let it go until the morning.  And in the morning, nothing was worse, but not much was better.  He wasn't smiling or giggly anymore.  Come on baby, I know you've got one in there.  But he didn't.  So we called the neurosurgeon, and better safe than sorry, we brought him back to the ER.  Ugh.  Another cat scan, and then x-rays of the actual shunt to make sure it was working properly.

That was the hardest part.  I climbed onto the rolling gurney and held Lucas as we whipped down the corridors.  "It'll be okay, sweet bean.  I won't let anything bad happen to you."  And then I had to hold him completely still, me in my lead apron, forcing his head still for an x-ray, or FOUR!  I tried singing.  "Here, Mom, hold his arms tight, and don't let him move."  And I did as I was told, even when he screamed as if I were pulling something out from inside his body.  "Okay, Mom, now take these felt paddles and hold them on each side of his head.  Don't let him move."  It's torture.  Absolute torture.

His cat scan came back absolutely fine.  The ventricles did not get any larger.  The shunt is working fine.  He'll leave the hospital again tomorrow, we imagine.  And then he'll be home again, and we'll watch him, every little movement, and we'll listen for every sound, as we did this morning, when he was on his activity mat, and I heard him kind of choking because he'd spit up but didn't want to turn his head.  So I rushed to him, scooping him up, wiping his mouth.  His face was red.  What if I weren't there?   Would he have turned and worked it out himself?  I hope some of this happens in the hospital so they can tell us if it's normal (which I suspect it really is). 

I don't want him getting used to this, to a life of x-rays and hospital visits.  It made my heart hurt.  And my face twisted into a cry, knowing it didn't do any good.  "This totally sucks little man.  I know it.  And if I could, I'd get you a cheeseburger."  And it still wouldn't make up for it.  It totally sucks.  And the poor guy has been tortured all day.  Two failed attempts to insert an IV, not to mention six or so tries at just finding a vein after using the tourniquets.  And he cries like you're squelching his soul.  And I just want to make it stop.  And I can't.  And I hold him and sing, and brush his face with the back of my hand, and none of it helps.  And I pick him up and hold him close, and it doesn't work.  He doesn't like me.  He likes Phil better, I think.  I can't do this.  I feel like such a failure. 

And I don't want Abigail in the hospital.  I don't want her catching germs and getting sick, and since we don't have family here to babysit her while we're at the hospital with Lucas, we have to split up.  And yes, our families have offered to come, but honestly, that's just more stress.  And friends have offered to watch her, too.  But we don't want to change up her schedule too much.  I know tomorrow Lucas will be home again, and that if he gets antsy again, we'll first try to soothe him with a ride around the neighborhood.  You know, to Baskin' Robbins.  And then maybe baby and mama will be a bit happier.  I just feel so sad, like it's my fault.  Intellectually, I don't think these things, but emotionally, I'm a mess.  And I feel like I'm to blame, that I didn't build him strong enough.  And when I can't fix the pain away, I feel like I've failed him.  Yes, I'm a great mom when it comes to songs and sign language and clipping fingernails, and I'll hold his hand until he falls asleep.  But I worry I'm not good enough with this part, with comforting him.  With making us both feel like less of a mess.      

extraordinary kindness of strangers

I'm home.  Lucas isn't.  Abigail was sleeping.  I whispered anyway.  "Hi baby."  And her eyes darted open.  She stretched in her crib and flashed me a smile so wide it made me cry.  "I've missed you," it said, and I swooped her up and squeezed her.  We twirled around the room.  "I love you, too," I said.  And then I stopped and looked at her.  She turned her head and began to search for Lucas, staring at his crib.  Then I cried some more.  "He'll be home soon," I said.

"You know what I'm scared of Phil?  I'm scared we'll give all this attention to Lucas, and Abigail will eventually grow resentful."
"Trust me, that's not going to happen."  I know we love them both, give them each an absurd amount of attention, but with all the doctor visits and appointments in his future, she might feel slighted.  I'm over thinking again, I know.  Still, I want to be mindful of it, don't want to become that cliche of a family with a pissed off sibling, mad at her sick brother.  I don't want him to be sick.

"You're going to see him doing a lot of things you've never seen before" the neurosurgeon said.  "A lot of parents tell me they had a laid back baby who's now suddenly a troublemaker.  Well they were supposed to be a handful the whole time.  Now Lucas is going to start to act like Lucas."  I don't know what to expect; though, I'm excited to hear that he'll be doing better going forward. 

He now has a shunt, and with it comes regular appointments with his neurosurgeon to ensure the shunt is working.  We're to look for subtle signs, signals, that something might be wrong.  I don't know what these signs are, but on my quest for more information, I studied a list of symptoms of shunt malfunction or infection that listed: irritability and sleepiness.  Are you kidding me?  That's any baby.   Vomiting, fever, or those "sunsetting eyes" are obvious signs.  I hate that fucking term.  "Sunsetting eyes."  It reminds me of Peter O'Toole, for some reason, walking off into the sunset of his life.  Poor feeding?  Even Abigail is a poor feeder some of the time.  I don't want to grow into a hypochondriac.

Along with all the doctor appointments, an occupational therapist and speech therapist will be coming to our home to observe and work with Lucas.  "But you'll also want to supplement that with a private OTPT."  Occupational Therapist / Physical Therapist.  I'm learning the lingo.  I wish I weren't.  All these visits, all these symptoms and signs to watch for, and all that worry and anticipation.  Waiting to see.  Knowing more surgeries will be in his future.  Replacements.  Possible malfunctions.  He'll outgrow the shunt he has now; and he'll need surgery again.  This doesn't go away.  It could always be worse, and as I read those words, a part of me says, "I don't want it to go away!"  I mean, we deal with it, we just do.  And of course we will.

Mainly, I just want to know that our baby is safe.  That he'll be okay, that it won't ever get that bad again.  That he's out of danger.  He's now doing so much better, giggling and kicking his sweet feet and tiny bead toes, and honestly all your words and wishes and prayers have been a tremendous comfort.  I'm not just saying that because it's the right thing to do.  Honestly, I was held up in that hospital room reading all the emails and comments, and I felt less alone.  And believed all of it would somehow help, and it has.  I don't know any other way to say it.  I, we, are all so thankful for the extraordinary kindness of strangers.  It has been such a comfort.  And has really made me feel so much less alone.  Not less scared, but less alone.  Thank you.

Lucas seems to be doing well.  He's tracking, following objects, and watching us.  He cries when he cannot see us, which wasn't the case before.  And all his stats are fine.  He had been eating 8-9oz. of food per feeding at home, and now, anything more than 4oz. causes him to throw up.  So we're waiting to see what the doctors say about it.  If it's just a case of too much food too soon, or if it's nausea and something about which to be concerned.  We're hoping he comes home today.  Abigail looks around the room and knows, 100%, that something, someone, is missing.  And I'm sure somewhere inside him, he's missing her too.

a name is nothing

A name is nothing. 

He awoke this morning smiling.  Wasn't hungry, only ate 4 oz., then wanted to nap.  He slept for two and half hours then began to vomit.  He wasn't crying, didn't seem like he was in any pain, just seemed sleepy.  "Did he have a rough night?"  No.  "Yeah, 'cause he's acting really tired, which isn't like him," our nanny said.  And he was doing this weird thing with his eyes, where they'd kind of bug out, as if he was suddenly startled.  We called his pediatrician, who was out to lunch.  I got dressed and drove him to the doctor anyway, without an appointment.  Part of me thought, "he's just tired, poor thing."  But I also knew it was more than that.  Babies puke.  So I didn't think much of that.  But his eyes... he began to stare off into space, and then that startled look... startled me.  No fever.  No seizures or anything, but those eyes.  And then he vomited again in the waiting room.  Something just isn't right.

Here's the bitch of it all.  Yesterday, before all this happened, I took him to the pediatrician because he had a rash around his mouth.  So did Abigail.  "You're not going to freak out each and every time this shit happens are you?" Phil asked.  "'Cause I'm sure this 'rash' is nothing."  And he happened to have been 100% right. 

"So I'm being overly-cautious.  So what?  I'd rather go and let them tell me it's nothing."  And that's what I did.  I took the beans to beantown... okay, not to Boston but to their doc.  And they laughed and giggled the whole time, especially Lucas.  All happy.  "Nope, they're not allergic to bananas.  And that rash is just from all their drooling.  They're teething.  It's normal.  You can put on some vasaline, but it'll be fine.  And on his neck is some very mild eczema."  Done and done.  "They're both totally fine," their doctor said. 

And then I bring him back today, and our regular doc isn't there, but another one is and agrees to see him.  She sees that he's kind of looking as if someone hit a restart button somewhere inside him.  He's acting as if he's just landed on the planet earth and has no idea what's around him.  And it's fucking terrifying.  So she suggests, "you know, just to be safe, why don't you go bring him to the ER." 

"Phil, ask the nanny if she can stay late to watch Abigail, and come meet me at the ER, okay."  It wasn't a question.  And that's when I kind of have to remind my self to breathe.  I'm so nervous I begin to sweat. 

Then we wait in the ER, you know, forever.  And finally see a doctor.  Lucas is asleep in my arms.  Then his eyes jolt open and he vomits.  "You see, just like that," I tell the doctor. 

"Yeah, I need to get bloods and a CT, stat."  And within ten minutes of his CAT SCAN, a neurosurgeon greets us.  "I need to relieve the pressure in his brain."  The words are kind of hanging there.  Did he just say, brain?  "The normal pressure in there for a child his age is less than ten.  He's at 28, which is three times what it should be."  Does this mean he's going to be retarded?  It's all I can think, right after, is he going to die? 

"Do you know if it's contageous?  Should we be worried about our daughter?  Is this something she could have caught?"

"I can't answer that right now.  I'll have to see what the fluid looks like."  He tries to relieve the pressure then and there, asking if we'd like to leave the room.  We're not going anywhere.  We're handed paper masks, told to fold them over our noses, and pull the bottoms down under our chins.  Iodine.  A tray of needles.  I grab Phil's hand.  I'd thought we'd been through the worst of it in the NICU.  I thought this shit was behind us.  I said a prayer, then aloud said my grandmother's name, Beatrice, after whom he was named.  The Beckett in him is her.  Please pray with me, I say.  And I don't pray, not really.  I guess sometimes.  In times like these, you just try to think good things.  But you're not thinking, "Can't wait until his first roller coaster ride" thoughts.  Good thoughts become, "he's going to be fine."  But you don't believe it.  You thought he was just overtired!  Well, until you thought it was more. 

And then you blame yourself, picking it apart, wondering if you could have spotted something sooner.  How could the pediatrician not have seen anything yesterday?  But he had no symptoms yesterday.  But, he did throw up a lot.  But even when I'd mentioned that, the doc said it was normal, that they outgrow it by the time they're 9 months.  And now, I'm in a hospital bed, beside my sleeping husband, listening to Lucas's breath across the room in his hospital crib.  He's hooked up to monitors, just as he'd been in the NICU.  I know the sounds.  Am used to the vital stat checks every four hours.  But I don't think you ever get used to this. 

He's been diagnosed with aquired Hydrocephalus. He was not born with this (we don't think... we're going to have them look at his CT from when he was in the NICU, but likely they would have spotted any abnormalities then), and they don't know what has cause