Saturday, June 30, 2012

Wine Required

A thing only attorneys will understand:

I have been writing and Bluebooking a paper for publication in my field for the last six hours. 

Where is my glass of wine.  (notice it is a statement, not a question)

Friday, June 29, 2012

HRH Lis

After months of extensive Google searching, I determined that there are no pictures of me, associated with my real name, on the web.  So, for the time being, I've even let a picture of me slide in here.  






Put On Your Big Girl Jeans And Go To Work


So, here’s some work navel gazing instead of surgery navel gazing.  I’m having a bit of a fit problem. 

My primary, and before I went on maternity leave, only, responsibility at work was the litigation end of things at my organization—I am the attorney in our office that goes to court to help represent the best interest of children who are being abused or neglected.  Now that I am back, it’s more complicated.

I was terrified of court in law school and convinced I could never do what I am doing now.  Lo and behold, here I am, doing it and doing it reasonably well, and if not totally over the fear, able to mask it fairly well.  I even enjoy it.  It’s a tangible fix, and I really see the positive effect I and my organization can have.  Before I went on maternity leave, my docket was growing so that I was the attorney with the moist cases in my office.  After we had our little employee shake up, I was the most senior attorney and the one the courts, court staff, and attorneys turned to. 

Then I went on maternity leave.

Moms out there in the legal profession, you know what I am about to say, right?  I came back, but things were different; they held my job, but not my place (in all fairness, how could they?  They had to keep growing and doing their work in the time I was gone); I am a different person now, but the job is the same; my connections, my work, my status, my reputation… they didn’t degrade, or even slip, they just…changed

We hired another attorney just before I went on maternity leave, and I love her. She is great to work with, extremely competent, friendly, believes in the work, etc.  I handed over most of my admin responsibilities to her when I left.  I handed over my docket.  I handed over my contact, my secrets, my relationships, etc.  I made sure that everything would go smoothly when I was gone.  I wanted her as integrated as possible.  And she is, and it has been wonderful.

But its left me a little out of place, now that I am back.  Believe me when I say I am not jealous, or feeling possessive, or wanting to be the boss.  I worked with that for a long time, and I am relieved that person is gone.  I am utterly relieved that I can share responsibility without everything being a power play, without mind games, without secret manipulations.  It’s just different.

Then there’s the job responsibilities themselves.  Since I work a day or two a week from home, it means I am not always free for litigation.  It also means I  have been doing more of the research, writing, and publishing aspect of our organization.  I LOVE IT.  Unabashedly, unequivocally.  I love digging into the newer and ever more bizarre cases and facts, the nitty gritty rules, the newest outrageous legislation, and laying all bare in a very understandable manner.  I’ve gotten a major ego boost having my work suddenly published, and used in statewide trainings.  In doing all this work, I am working with one of the best and brightest minds in children’s law in Indiana, and one of the top in the nation.  I am not exaggerating—we are talking statewide sought-after person here.  This person is a huge part of why I am doing so well—I have an amazing teacher.

So, my former responsibilities feel different, like trying to put on my skinny jeans a few weeks after birth.  I can get them on, but they feel wrong in strange places.  But this new part of my job—it’s like I discovered a new brand of jeans specifically designed for my body after birth, that fit well no matter how many times I wash and dry them.

Thursday, June 28, 2012

I Have Thoughts, Here They Are

First, how about this for Ms. Lis? http://www.cafepress.com/mf/49702412/too-much-brain-to-contain_bodysuit Too soon? Second, my nephew was sworn into the naval academy today by my dad, who has 30 years of service under his belt. It made us all teary. Third, I have ridiculously cute pictures, but can't get them to upload. Fourth... Three weeks. Hopefully at this exact moment three weeks from now, I will comforting a cranky baby on the successful side of surgery. Lastly, I really need to publish all these draft posts.

Friday, June 15, 2012

Speak Out Loud That Which You Fear Most

July 19 is rapidly approaching.  I need to be as ready for this as I can be.  There is a folder with all of Lis’s surgery stuff in it; I have been getting the blood donations going; there are post it notes with lists all over the place of questions to ask, things to do, people to call, etc., etc., etc.  

But I (ME, MYSELF, I) need to be ready, not just have everything else ready.  I need to be braced for it, for the aftermath, both physical and emotional.  The only way I can keep the fear and heart sick feeling from overwhelming me is naming the fears.  Then working through them, around them, under them, over them, or if nothing else, just staring them down until it is a known fear, an old enemy with an almost familiar kindly face, not an unknown fear.  

1.       Anesthetic.  This is about a six hour operation.  That is a long time for my little Lis to be under. I feel like I am putting her life into the hands of the anesthesiologist even more than the pediatric neurosurgeon or the pediatric plastic surgeon. 
BUT: This is at a children’s only hospital, one of the best in the nation.  The anesthesiologist is a pediatric anesthesiologist, working only with children.  The neurosurgeon (who I really trust), recommends him, without hesitation or reservation.

 2.       The procedure itself—the brain part. The neuro surgeon is there pretty much to {I can’t even tell you how hard it is right now to just short hand it, use code, glaze over what they are actually going to do.  I am making myself type this out} detach the skull without presenting any issue to the brain.  She is there to do the cutting in a proper manner.  And when they do the forehead thing (more on that below), she is there to protect the brain and the eyes.  The brain.  Everything that makes Lis herself.  The thought of Lis’s essence being exposed make me want to throw up, over and over. 
BUT: This is the type of surgery Lis needs.  The other “less invasive” type won’t work for her.  I trust our doctor, I trust her experience, and I trust her success rate.  She will be there to guard Lis’s brain, and at this point, I can’t think of anyone else I would want doing that.  Also, thinking about this procedure is a fear of the “stare it down until it is familiar” variety.  I have to say it, type it, think it, visualize it, over and over, until I know I can sit there while it is happening.

3.       The procedure itself—the skull part.  The pediatric plastic surgeon is going to move everything where it should be.  Most terrifyingly, this involves moving the forehead into its proper place.  This has obvious risks to the eyes and brain, but the thing I really can’t bring myself to think about without losing it {and as I am typing this, the tears are coming} is the mental image I have of how this going to work.  There is only one scar, people, where they cut her skin open to get at the skull.  Does that mean {I can’t type this.  I can’t think this. I am totally psyching myself up to even type this out loud as it were.  Can’ttypecan’ttypecan’ttype} that they…peel her skin off?  Like, down past her forehead?                              BUT: This is a stare down the fear thing.  Yes, yes, I really trust the plastics surgeon, but… I really just need to stare at this fear until it is familiar.  Or I need to get the question answered.  Or maybe not.

4.       Risks of the surgery. Death, infection, blindness, brain damage.  No easy complications here!  BUT: The surgeons have done triple digit numbers of this type of stuff.  They have been doing this for years.  Neither have lost a baby.  They have rarely had complications, and even in the most serious case where complications came out, the “worst” outcome was that later on, a second surgery was needed.  The kid came out fine in the end. This is a surgery that has been done for many years now.  In fact, one of my friends was one of the first babies it was done on—she’s in medical journals and everything.  She’s fine.

5.       Blood transfusion.  Babies Lis’s size have about two Coke cans worth of blood in them.  Obviously, that does out fast in a surgery like this.  In cases (in the past and never at this hospital with these doctors) where things ended badly, it was because of blood loss.  Because they did not prepare.  Also, I set up the blood donations, etc., and in the process, found out that the doctor had entered a prescription (yes you need a prescription for blood… not an over the counter thing) for 2 units.  I feel in my completely uneducated, irrational, panicking parent way, that 2 is not enough. I want backups, preferably in the double digits. 
BUT: Bad endings haven’t happened here or with these doctors.  In fact, they don’t really happen anymore, because everyone knows now about the blood thing, and they take care of it.  I have people coming out of everywhere, offering blood for Lis. And, I think that last part is just a question I need to call the doctor and ask, and have her explain it to me. 

6.       Vor’s fears & Lis’s looks.  Vor is afraid that after the surgery & recovery, Lis will a) not look like Lis (ie, her facial structure will be altered somehow); b) Lis will end up looking worse; c) Lis will look somewhere in between what she should have looked like, and what she would look like if we didn’t fix this. 
BUT:  All I can really say to this is that I’ve seen tons of before and after pictures now,, and the kids look great a year out.  They look normal, and they look like older versions of their baby selves.  And if we don’t do this, ignoring all the risks of ICP and brain damages, etc., at the very least Lis would have a major MAJOR cosmetic issue.  I mean, we are talking people stop stare and whisper issue.  It would be so much worse without it.  And that’s ignoring all the health and life threatening risks if we don’t.   

7.       My fears & Lis’s looks.  For at least a time, she won’t look like Lis.  She will be swollen, even more bald than usual, bruised, and her head might look different.  I was always so worried before I was pregnant and while I was pregnant and in the first days (weeks) of newborndom that I would not be able to bond with her, but I have.  She’s my little Irish souvenir, my cheeky baby, my babysaurus.  What will I do when I look down and don’t see Lis?  At least for that period of time while she is recovering?  Will I lose all that? 
BUT: I don’t know.  I think this is more a dark personal fear about myself, and not Lis.  I’m open to suggestions.

8.       Recovery Issues.  Swollen shut eyes, bruising, pain, a long hospital stay. 
BUT: Time will heal, I suppose.  Nothing I can do about the stay, the swelling, the bruising.  I can learn everything I need to know about the mediation and keep her comfortable, and that’s about it. 

9.       At home care.  Giving Lis medicine, and what do I do if she throws it up?  Who do I cal if she seems off?  What if things take a turn for the worse at home?  How do I clean a wound?  How careful do I need to be? Generally, I think the fear is—how do I manage to care for my baby, who probably at this point could use a real, qualified, honest to goodness, gone through school and everything, nurse.  BUT:  that’s why God gave me a brain to think of questions and a mouth to ask them.  And the ability to plan ahead and make lists of questions to ask.  Oh, and friends who are nurses that I can call in a hot panic.

10.   Future fears.  Will she need another surgery?   What if her condition causes learning disabilities?  BUT: I can’t change it, I can’t fix it, I can’t avoid it, I can’t know it.  I just have to deal with it as it comes.  If she needs another one, we do it again.  If she has learning disabilities, then it’s a good thing I am the type of the lawyer I am, and I have all these resources at my fingertips.   

My fears, named, written out—perhaps not conquered, but at least spoken, not haunting, not in the shadows.

Wednesday, June 13, 2012

True Blood & Love

I told my office the other day, in casual conversation, Lis's bloodtype.  I mentioned I couldn't donate to her, and that although my whole family is her bloodtype, I am not having them drive for days to come here just to donate blood.

It was just a "whatever, here's what's going on" kind of conversation.

Today, I found out that my office had done an amazing thing.  They lined up a bunch of local attorneys to give blood for my daughter.

I don't have words.  I am blessed with the legal community I exist in. We are blessed.

Monday, June 11, 2012

No One Can Withstand the Cute


You are welcome.

Minor Breakdowns, Here and There, Caused by Color


Obviously, anytime I (read: Vor) has to describe what the surgery entails, I melt down.  I mean, they basically have to remove her skull and reshape it.  Even typing that, I feel the panic swelling and knot coming and the eyes stinging and the breathing and the nausea and the heaving—

Stop.  Stop it.  Stop it stop it stop it stop it.  I basically fist my hands into my eyes and breathe breathe breathe to make it stop.  Every time. 

We came out to Buffalo this week to have Lis baptized.  She was baptized on my birthday.  I was supposed to go to my ten year high school reunion, but I thought I might screaming into the night if someone asked me in a perky voice, “How ARE you? How ARE things?” The priest said an extra prayer for Lis.  I took deep, even breathes.  No breakdowns.  No.

I came around the corner, and my sister was holding Lis, asleep, with her hand wrapped around my sister’s finger.  A tear was rolling down my sister’s cheek. 

I saw my mother’s and my father’s jaws just drop open, speechless, as Vor described the surgery. 

We got the bloodwork back for Lis's bloodtype--and I'm not it.  She has Vor's type, and I can't donate to her.  I cried.  It was something to do, ANYTHING to do, and I can't do it.  

And then, even though it was totally unrelated, we walked past my grandparents old house, and I burst into tears.  We were out walking Lis, and I wanted to see the house where I had so many good memories.  We came around the corner and there was house—but instead of a cute white cottage with black shutters, it was painted Easter egg purple, with some shutters green, and some shutters blue, with mauve trim on random places. 

It’s not my grandparents house anymore.  They’ve been gone for years.  But it was a safe place, a place of good memories, and I always loved walking past it, knowing that my grandma would be so happy to know there was a couple with children living there now.  

That day, I needed it to be as it always was, and it wasn’t.  Seems like nothing else.

*****

Day by day, I'm getting there.  I'm able to explain this thing now.  I don't look at her face and imagine horrible things. I don't cry over the fact that I can't donate to Lis--because I am donating to someone else's need.  I met up with high school friends while I was home, and survived the friendly questions.  I made my parents and siblings feel better, and understand what was coming.  I made schedules, plans, read information, booked rooms, etc.  I'm in motion.

I just haven't gotten over the color.  I mean, purple?  With blue and green and mauve? No.

Tuesday, June 5, 2012

Let The Waves Roll Over You

Lis rolls on her side, but refuses to go further.  I’m concerned she can’t; Vor isn’t, and thinks she hates rolling over.  Since our doctor made that frown, I have been obsessed with the idea that her unwillingness or inability to roll over is somehow connected to this brain/skull thing.

****

We huff and we puff as we hoof it from the parking garage, not quite sure where we are going on this vast combination of a medical and university campus.  We make wrong turns, and push a whinny Lis who just wants her damn bottle, now, around.  We find it—Riley Children’s Hospital.  Bonus points for it being next to the parking garage that we parked in.  Minus points for us not being able to figure that out.

We wind our way through the hospital and the elevators—at least it is bright and friendly, like a children’s hospital should be.  It doesn’t have that hospital decay smell.  This is going to be okay, I tell myself.  All okay.  All alright.  Lis falls asleep in her stroller, contented, while we wait.

We get called back—we weigh her, measure her height, measure her head.  She looks awesome, and smiles her toothless grin for the nurse.  All the nurses are instantly charmed—Lis is a really awesome, happy, cheerful baby.  I know I am biased.  But she is cute.  She has these massive blue eyes and these huge cheeks that has even the grumpiest person leaning in closer to just touch those cheeks.  Before I slap their unknown germy hands away, that is. 

The nurse comes in—she is super friendly and efficient.  She runs her hands over Lis’s soft spot, and I see the same brief flash in her eyes that I saw on Lis’s pediatrician’s face.  I know.  It’s not there.  And when she says classic shape regarding Lis’s head, I know she doesn’t mean classically normal. 

We go to the CT scan.  I feel sick, sending my baby (MY BABY) through a scan that exposes her to radiation, but we have to know.  We need exact pictures.  It makes a difference in what we do.  Vor stays with her during the scan, while I pace the hallway.  I see children younger than Lis pass by with very deformed skulls.  I see older children walk in for a one year check up, happy and normal looking as can be.  I see some broken bones and casts.  I see some children who are cancer patients.  I breathe.  I breathe.  I make faces at Lis, who sticks her tongue out. 

We get back to our room, and the doctor is actually pacing around, waiting for us.  She looks like Merryn Streep from Iron Lady, which I find oddly comforting.  She is no-nonsense, and doesn’t sugar coat it.  When she finds out that we have a slightly higher degree of familiarity with medical terms than the average patients, she isn’t afraid to use the correct words.  She doesn’t dumb it down.  She explains it all. 

No soft spot.  Craniosynostosis, of the sagittal variety.  Surgery.  6 hour operation.  Blood transfusion.  Complications.  Success rates.

She runs through a series of brief tests with Lis. Lis is totally normal in all of them, but she asks if Lis is rolling over.  “Yes,” Vor says.  “No,” I say.  We look at each other.  Vor says, “she did the other day!”  I say, “She had help.  It doesn’t count.”  Vor sighs.  “That wasn’t really help.”  I shrug.  Either way, it’s only once. 

The good doctor pauses briefly, so I take my eyes off Lis and look at her.  She is looking directly at me.  She says, “This is the part where your eyes go wide and I know you are going to freak out.  I am going to explain this surgery to you.”  She does.  She’s right, and I appreciate the warning, so that I can sort shift my brain into that higher gear where I think, I know I am freaking out. I will display the freak out symptoms later.  I will listen now.

She explains why she thinks this kind, which sounds scarier, is actually better for Lis.  She explains the other kind of surgery, which sound somewhat less scary, and why she thinks it will be less effective and might require more surgery in the long run. 

Vor lets Lis play with his fingers.  She grabs everything, she grabs my necklace, she grabs the skin under your chin and practically chokes you while she laughs with glee.  He pats my leg. 

We see the scans, we get the dates, we make the appointments, we ask the questions, we get the paper work.  I keep it together until the car and then I cry and cry and cry. Vor does too.  I make it home and feed Lis, snuggle her.

*****

I put Lis on her playmat, on her back, and run out of the room to get some good.  I’m gone maybe 30 seconds.  When I come back, she’s on her belly, gripping a toy determinedly that I placed out of her reach.  She’s rolled over, for the first, on her own. 

Tentative surgery date: July 19.