Saturday, December 29, 2012

Delay, Delay, Delay

We are coming back from FL and are in hour 2.5 of a 4.5 hour delay. We were supposed to leave at 6, land at 8--well within Lis's bedtime limits. It's now 9pm and an almighty fit is being pitched, and we're not leaving anytime soon, and all she wants is her bed or even a damn dark room that's quiet. SHE WANTS TO SLEEP. AIRTRAN WHY ATE YOU STOPPING HER FROM SLEEPING.


Shoot me now, y'all.

Wednesday, December 26, 2012

A Palm Tree Christmas

Hey, so you know that snow storm that s currently wacking my home? I'm toasting it with a margarita from Florida. We're at my parents' place. I took Lis for her first swim in a pool on Christmas Day. Beat that.

Monday, December 17, 2012

The Coast, It Is Clear

All my worry and paranoia was for nothing.  Lis had her follow up appointment for her cranio surgery, et voila! All is beautiful, and all doctors pronounce themselves thrilled.

In related news, the pneumonia is gone.  Lis got checked out today, and all is well.

Then--(She hesitates, looks cautiously around the room, lowers her voice)--it appears that The Never Ending Sleep Strike Of 2012 may be... over? Maybe? A chance?

After life with an easy baby, where we gave her everything she wanted, because her wants and needs were the same thing, we found ourselves face to face with a difficult baby who was in pain, then just a difficult baby who was used to being cuddled all the time and with terrible sleep habits.  We tried every thing, I swear--everything that every attachment parenting book or blog or person or robot or anything suggested, because after surgery, it broke my heart too much to let her cry.

It turns out that some babies need to cry.

Oh, it was bad, but it was nowhere near as bad as some people who talk about the hours it took for their babies to cry it out.  Honestly, I wouldn't have lasted that long.  It took twenty minutes, and she was gone, and after we got the rhythm of it, she now will wake up in the middle of the night, let out a wail, then go back to sleep.

Judge away, Internet.  I let my baby cry it out.    But before you do, ask yourself this--were you woken up every forty-five minutes all night long for months on end?  I didn't think so.

Now that I've seen it, I realized that Lis needs to release tension.  She actually gets madder when you pick her up--she wants to be left alone, not touched, etc.  Sounds like... me.


**********

I know there are things to be said, and words to hear.  But... as far as last Friday goes, I am not one of the speakers, or the writers.  Instead, I will listen, and I will remember, and I will mourn with all the rest.

Thursday, December 13, 2012

Never Trust A Lawyer

I hop out of my car (fine mini van, whatever) in the parking garage and hand my keys to the guys.  Its valet parking, unless you have a monthly pass, which I don’t have.  “How long will you be today?” He asks—he know that sometimes I’m there all day, sometimes its thirty minutes.  “An hour, “ I say.  He grins.  “Two hours then.”  “Never trust a lawyer, “ I tell him over my shoulder as I walk out of the parking garage.

I get a motion in the mail on a case that has been long closed, asking for a hearing—and somehow, my name is plastered all over the body of the motion.  Somehow, this lawyer thinks I’m to blame for his client’s terrible decisions, decisions made long after we were released from the case.  Because, you know, as opposing counsel, I really can control his client. After the fact.  From far away.  Magically.  Looks like sour grapes to me. 

I get an irate call from a random person who has our office confused with either CPS or DCS, and she demands that we investigate this case of neglect.  When I try to explain that she’s called the wrong number, she’s furious, insisting that I do something, and when I try to explain again, she loses it, tells me she’s going to call all the press and let them know we’re failing at our jobs, and she’s report me to… some indistinct authority figures. 

I lay my head on my glass desk.  It’s nice and cool.

I smooth my hands over a slightly yellowed newspaper article in my office.  It’s funny that my eye should land on it today, when its exactly one year since KC died.  I remember her—seven years old, red hair, tiny, bright, and now, dead.  She was a success story, all ending well, until random violence, nothing anyone could have predicted, found her family.  I remember opening my email that morning.  I was pregnant, really pregnant, and downtown for a hearing.  I sunk down onto a bench and cried, and the next thing I knew, one of the judges had me back in her office, patting my arm, telling me it was okay. 

One of my co-workers gets a package full of Godiva chocolates, and suddenly, we all can’t seem to remove ourselves from her office.  She jokes that she is always going to have candy in her office from now on for the visitors, and next thing you know, the rest of us have set up a sign on her door that reads “Candyland” and we tape candy canes all over her door frame. 

I scurry into a review hearing on what used to be one of my worst cases, until everyone magically saw the light.  Almost a year later, everyone’s been sober and in therapy, and the kids are doing great.  Parents are beaming and proud of their progress, and the judge is thrilled.  Even in light of the progress, everyone is still realistic about what needs to be done, which makes me even happier.

I get a Christmas card from a kid.  She told me we touched her life, and thanked me.

So you know, believe all those jokes.  Never a trust a lawyer. We’re not human. We’re all jerks and liar and thieves, and we never do anything good or necessary. 

Saturday, December 8, 2012

Terror, Real And Imagined


It all starts with a small cough.

Three and a half weeks ago, I noticed Lis was coughing.  It may have taken me awhile to notice this, since Lis figured out long ago that two of the best ways to get out attention were to cough or wheeze/gasp for breath.  Normally, neither of them are real, and when we come running, she laughs. Jerk.  Anyways.

I thought—hmm.  Let’s keep an eye on it for a few days.  I read the lovely Swistle’s blog, and she mentioned that she took one of her kids in for a long standing cough-no-fever, and lo! Pneumonia.  I promptly panicked, and Vor promptly told me to get a grip.  When the cough hung around, we went in for the first appointment, and lo! Sinus infection.  When that treatment didn’t work, and her cough got worse while we were in Arizona (forGodssake, away from our doctors!) and her nose got worse, we went back to doctor after we returned from Arizona (how was Arizona? Lovely.  Love it there).

Lo! Behold! PNEUMONIA. 

First, her doctor couldn’t hear anything in her lungs, but the things I was describing were so classically pneumonia that she heaved a big sigh and said, “Chest x-ray.” 

I stared at her with baleful eyes.  “Must we?”  We’ve had this conversation before—we want to limit Lis’s exposure to x-rays, etc, since she needs lots of CT Scans for her head.  Her doctor is totally on board in wanting to limit this as well, since she is going to need an awful lot in the first few years of life.  “Yes. We must.”  I know she would not make this call without truly needing it, so we head to do it. 

I am beyond anxious about the scan, first for the radiation.

That anxiety turns out to be nothing, NOTHING compared to panic I felt during it.  She was essentially in this vertical clear plastic tube, with her arms locked above her head, immobile.  I’m holding onto her hands, singing to her to keep her calm, and the tears are running down my face.  Not because she’s upset, not even because the x-ray is so bad, it’s the freaking flashback.  I’m there, but suddenly I’m back for that CT scan, then I’m waiting for her surgery, then I’m staring at stitches all across her small head, and I’m back in the x-ray room again, crying. 

The nurse is suddenly in there with me, putting Lis in my arms and patting my arm, saying, “Are you okay? She did great!”  I nod and manage to choke out that we’ve spent some quality time at Riley, and she nods sympathetically, then sends us back to the room. 

Pneumonia.  Scans.  Flashbacks.

Her doctor comes back in to look at the x-rays, and then pauses, looking at Lis’s head.  I feel like I am going to pass out when she reaches out and runs her hand over Lis’s old soft spot, and over the new surgically created ones.  I point to the still evident ridges on the side of Lis’s head, and ask—is it just because her skull fused so quickly?  They said her case was rapidly getting worse, and it was complicated.  I just assumed that she would have small ridges like that…?  Her doctor hmms at me, remarks that they are much easier to see than last time.  Maybe it’s just because all the swelling is totally gone now. 

I make a half hearted joke about how it would be just my (bad) luck that we would be one of tiny percent of people that needs the second surgery.

She doesn’t respond.

Lis’s next follow up is Dec 14.  Vor, in the meantime, has talked me out of my terror, out of my paranoia, and into just dealing with the pneumonia.  Let’s leave it to the experts, eh?  I know the chance is small.  I know that I am a worrier, and that I latch on to things, sometimes irrationally, and obsess.  But.  But.  Last time, I was right.  Last time, I stared at my daughter's head shape before the doctor even mentioned it, and I knew.  Last time her doctor ran her hands over her head like that, it all happened. 

So, I think I can forgive myself for being a little paranoid this time around.  It ain't my first rodeo, you know.

Friday, December 7, 2012

For Cranio Parents, Part The Sixth

Intro     Part 1     Part 2     Part 3     Part 4     Part 5

At Home—The Following Weeks

Lis stayed in her inclined pack and play for a couple weeks to help with the swelling.  Her heavy duty Tylenol lasted about two weeks (we alternated with regular Tylenol), and she ran out in time for her two week appointment, which is when they should just be on regular Tylenol anyways.

The sleep thing is going to suck for a long time to come.  First, they’re in pain; then they’re messed up from the drugs; then, they’re messed up from withdrawal; then, they’re messed up from having no schedule.  Now, Lis is messed up from night terrors and OMG.   Just deal.  Accept help in the form of sleep or breaks or overnights with grandparents whenever possible.  Have a friend come babysit during the day while you sleep for three hours.

Don’t be afraid to call the doctor for anything regarding the incision.  Call about fevers; call about weird colors; call about weird smells; call about oozing things.  Some of it is totally normal.  For example, about three weeks about, Lis got this weird white pockets of what looked like whiteheads all around her incision.  Some were tiny, some were…not. I called, in a panic, thinking there was infection.  Nope.  That was the dissolvable stitches breaking down, and Lis was just having a minor reaction to their breakdown.  But it was good to call. 

Lis went back to daycare three weeks after surgery.  She could have gone back two weeks after, but her daycare was closed for summer break.  By then, she was pretty much off Tylenol totally.  I just instructed them on how to put on the antibiotic ointment (gently and everywhere), and showed them where her new soft spots were.  [NOTE: Bonus! Now instead of no soft spot, you get multiple ones!] I let them know about changes in her sleep and scream type (Lis learned that the new “I’m in pain” scream was really effective at getting attention and began using it all the time).

Keep a hat cover the scar on your baby’s head.  Make sure it doesn’t rub against the incision.  The best ones we found were youth under armor skull caps from Dick’s Sporting Goods.  They were big enough to not rub on the incision, and we could actually get the elastic band down around her ears.  They are light, but warm.  You need hats for two reasons: (1) It’s super important to keep the sun off the scar—it helps the scar heal better. (2) It reduces the funny looks you get and the gasps and the “what did you do to your baby!” comments.  Believe me, after the stress of surgery and the stress of not sleeping, the first time someone says that to you or gives you a dirty look, you will lose it. 

Also, DO NOT LISTEN to the idiots who tell you to put whatever vitamin cream on the scar, because “it will reduce the size of the scar!”  No, MORONS.  You want it to scar over.  Those creams work by thinning out the scar, which can REOPEN the scar, and leave you and your baby open to infection, which in this case, can be life-threatening.  This made perfect sense to me.  I cannot even count how many people tried to tell us to do this or even tried to give us whatever vitamin cream it is.  Eventually, I got hostile, and it stopped. 

The Follow Ups

We’ve had two follow up visits so far.  So far, all is well.

There's the two week follow up, which is when you are still shell-shocked, your baby is still swollen, and the incision still looks nasty.  It was at that point that Lis was totally off Tylenol with Codeine, and she was down to (maybe?) two doses of Tylenol a day.  She tapered off fairly quickly--she just seemed to do really well, expect at night.  

The neurosurgeon and the plastic surgeon checked us (Lis) out and declared her to be Doing Great, instructed us to keep up with the ointment, told us not to be afraid of washing her hair and head, and sent us on our merry way.

At this point, it looked like her swelling was gone, though we know now that no, her swelling was nowhere near gone.  She just looked so much better that we thought the swelling at least was gone.  I would say it probably took until almost two months before the selling was really, truly gone.

We had a two month follow up appointment where essentially the same stuff happened.  They encouraged us to scrub at her scar a little bit to get the lose scabs off, since those can harbor infection.  Other than that, we were in and out.

Also, at that two month mark, I had the depressing/reassuring experience of having the doctor inform me that it was TOTALLY NORMAL for Lis to be on a complete sleep strike.  Here's the reasons she gave: (1) All the narcotics will mess them and their sleep up for quite some time; (2) Their sleep is really disrupted in the hospital; (3) They were in pain for quite some time when they came home, messing up their sleep further; and (4) By the time all these other things fade, BONUS! You have a baby with crappy sleep habits.  Good luck with that, was what our doctor essentially said to us.  I growled at her, and she laughed.  I love that woman.  

Thursday, December 6, 2012

For Cranio Parents, Part The Fifth


Intro     Part 1     Part 2     Part 3     Part 4

The ICU—The End Days

If you notice, all our time was in the ICU.  Most people get moved to a regular recovery room.  That part of Riley was under construction while we were there, and they had no open beds, so we spent the entire time in the ICU, which was awesome.  Seriously.  They downgraded our status from ICU to regular, which meant visits every four hours instead of every hour or two, but we were still in a very small ICU unit where there was basically one nurse for every baby.  They were wonderful.

Around late Sunday (surgery was Thursday), we noticed a decrease in the swelling.  This meant we could unhook her for long periods of time, and we would put in her in the ICU’s stroller and take her for very long walks around the hospital. Around and around and around and around.  It’s a huge hospital, and we covered all of it. [Side note—this is another reason I loved being there, in a hospital for children.  No one looked at us funny, walking around with this baby with this awful incision all over her head and swollen up like a balloon.  No one looked at us even twice, because they were all carrying or pushing or wheeling their own kids around with IVs for chemo, or covered in bandages like a mummy because of burns, or in a cast from head to toe for whatever.  In contrast, in public, even now, I get funny looks when people see Lis’s scar.]

The decrease in swelling coincided with an increase in alertness, which meant that by Monday morning, she was royally pissed off at the fact she couldn’t see.  The only way to calm her down was to keep her in motion, which meant packing her into the stroller and walking forever and ever amen.  I think this was because (1) it was familiar (we walk every day), and (2) motion let her know that someone was with her, especially since I would talk to her as we walked, or play music on my phone for her, and (3) there was a low buzz of different noises, and (4) she liked the change in “scenery.”

In short, the stroller was a godsend, and if your ICU doesn’t have one, bring one.

On Monday, I was awakened from my sleep at the hotel by Vor, who sounded like he had been crying.  I panicked, because I only heard the tone, not the words and I was flying out of the bed and to the hospital before it registered what he was saying—that she had opened her eyes.

When I got there, she was still awake, and went I went over and put my face close to hers, she squinted her eyes open just a slit, and put her hands on my face.  I will never forget that moment either.

We went home late Wednesday.  They needed both of her eyes to open enough that they could perform some basic tests.  She passed with flying colors.

The downside of Lis opening her eyes was that she didn’t want to shut them and she got really REALLY pissed off about not being to open them all the way.  She went from a low whimper to being a scream fest baby because she was angry about the thing.  BRACE YOURSELF.  The night after she opened her eyes, she did not want to sleep.  She was a mess, she wanted to be held, she wanted to open her eyes.  It was a long night.  The next day (Tuesday) was like that too.

The night nurses forever earned a special place in my heart on Tuesday night, and if the nurses should ever offer this to you, YOU TAKE THEM UP ON IT IMMEDIATELY NO QUESTIONS ASKED NO SECOND THOUGHTS.  Do you understand me?  Good.

They told us, “Look, you’re going home tomorrow.  You don’t get to take a  nurse with you.  You’re going to be on your own, and you are exhausted.  Let us take her for the night.”  I hesitated, and Vor clamped his hand over my mouth and said, Yes, thank you.  So, we slept in Lis’s ICU room, while the nurses paced the floor with her in a stroller, and fed her, and medicated her, and finally, got her to sleep in a swing.  We slept from 10 pm until almost 7 am and it was glorious.  I am forever grateful to the night nurses. 

Going Home—The First Day And Night

I’m not going to lie, it was scary to stick her in that car seat and take her home.  I felt even more overwhelmed than I had bringing home a new baby.  Here’s what we did to make things easier:

First, my parents came into town and stayed with us.  I took night shifts, they took day shifts, and Vor went to work.  [NOTE plan on at least one parent off for at least a week after the week in the hospital.  I didn’t go back into work for a week post surgery].  Vor’s mom came by every day to relieve whoever was on duty for a little bit.

Second, I got a notebook where we all METICULOUSLY logged when she had her last feeding, and when had her last dose of medicine, and what kind it was.  This is REALLY IMPORTANT since they are most likely sending you home with something stronger than Tylenol and you don’t want to screw it up and over or under dose your kid.  Either way is bad news.

Third, we set up the pack and play just outside our room in our hallway/dining room.  We set it up with lots of towels and blankets to make it soft and on an incline like she had in the hospital.  This way, we could get some sleep and not listen to her snore, but she was right there so we could hear her if she even began to moan.  It was also easier to sit by the pack and play in a chair and soothe her or dream feed her than it would have been in her crib (her bedroom is upstairs; the master is on the main floor).

Fourth, people brought us food so that we didn’t have to cook.  People also brought us groceries so that we didn’t have to shop.  People came and cleaned the house while we were gone.  People came and did our laundry.  When we came home, the house was stocked and neat.  It made life easy.

Fifth, we (obviously) have a dog.  Telly went to stay with his best puppy friend while we were in the hospital, and he stayed with them the first night we were home as well.  He’s a good dog, but I just couldn’t handle him on the first night home. 

The first night was hell. Lis woke up constantly with bad dreams or in pain.  We were up all the time--I do mean that literally.  We pulled an all nighter.  I can’t even describe how bad it was, because I can’t even remember.  I was that zombie like.  We survived, and that’s all you need to know.  You will survive.

Tuesday, December 4, 2012

For The Win

Pneumonia. Are you kidding me.  Just shoot me now.