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.


LawMommy said...

Oh hon...this is a big list with a lot of big, valid fears, none of which am I qualified to address save one:

Will you still love your baby when she doesn't look like your baby?

The short answer is, yes, of course you will love your baby, she is your baby.

The more complicated answer is, if she doesn't look like your baby and you find her appearance revolting or disturbing, take a cue from the adoptive moms who have this little mantra: "fake it til you make it". Which means, if you don't love your baby when you first see your baby...pretend you love your baby. Tell yourself that you are an actress in a play and your part is to make both the audience and the baby believe you love them.

It's kind of crazy, but it works.

On the other hand, I think it's highly unlikely you won't love your baby when you see her after the surgery because you ALREADY love that baby.

If you are nursing the baby/still nursing the baby...keep nursing the baby. As much as she is willing. It will release all those endorphins into your blood stream telling you, "this is your baby, love her."

All the other stuff...I am saying a prayer and sending good thoughts, for people with great skills to make your baby well.

alissaC said...

Some of your fears will come true. I still believe my little Sawyer doesnt look the same as before and its been a hard one to take in stride. But your right, they need it. You would hate yourself if you didnt do it. So there is no choice but to be strong. Only some of your fears will come true. Most won't. Ive said it before, and again, you email me or leave a comment on my blog, I will answer any questions while your waiting, in recovery, coming home. Its so fresh in my mind. I wish I had someone to go to like this but I didn't so I would love to be that person for you. Keep on being strong. Thinking about you guys lots!