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.

Saturday, November 24, 2012

For Cranio Parents, Part The Fourth

Intro    Part 1    Part 2    Part 3


The ICU—The First Night

Lis was not very swollen at first, and she even briefly opened her eyes, wailed, and went back to sleep. 

As far as medication goes, stay on top of it.  It’s really, really hard to wrap your brain around the fact that they are giving your baby Tylenol laced with codeine, and on top of that, morphine as well.  It’s okay.  Lis was in a lot of pain, so we made sure that she got the Tylenol/codeine dosage regularly the entire time she was in the hospital.  At first (the first night and the entire following day) we pretty much dosed Lis with the morphine close to the schedule of when she could get the enxt dose.  After that, we started using the morphine only as needed.  It works fast, so if for some reason her pain spiked, or the Tylenol wore off faster than expected (or she spit out the Tylenol), we would use the morphine.

As far as food for Lis went, we were really lucky.  Lots of babies get sick and throw up from all the drugs.  Lis was in the ICU around 5:30 or 6 pm, and we fed her for the first time around 7 or 7:30.  She took a couple ounces like a champ and never tossed it back up.  Don’t be surprised if they throw up.  It’s okay, and it will pass. 

Over the course of the night, Lis began to really swell.  It happened so fast that you could sit there and watch her balloon up.  Her eye lids turned purple as well, but her bruising was not nearly as bad as some babies’ can be.  They propped up the crib bed—they elevated her head A LOT, so that she was practically sitting up, and they elevated the feet a little, so that there was a nest for her butt to rest in.  We also corralled her in with a rolled up blanket under her butt, and rolled up blankets alongside her.  The nurses gave us was kind of looked like a gel ice pack, but was actually a soft squishy pillow to put kind of under or next to her head so that we could keep her facing forward to reduce the swelling.  During the night, depending on  Lis’s temperature, I alternated a heavy blanket and one of her lighter ones. 

The ICU would let two people sleep overnight with her.  We had a couch that folded out into a bed, which Vor took because he is really long, and a reclining chair that reclined all the way down into a bed.  I took that.  We had tons of pillows and blankets from the nurses, but I really missed my pillow.  I took the night shift.  I fed her every couple hours, and I set my alarm to when it was time for either a Tylenol or morphine dose so that I would be awake for it and I could talk to the nurse.  As it turns out, I didn’t need the alarm, because as soon as the meds started to wear off, her heart rate would shoot up from the pain, and an alarm would go off, waking me up.  The nurses were really good about explaining signs of pain and helping me decide on medication.  The first night and day, they kind of nudged us in the right direction, until we got the hang of it, and then they deferred to us. 

The ICU—The First Day

Having survived the night, I woke Vor up and mentally checked out for awhile.  I went down and got us coffee and breakfast.  Vor’s mom came, and at some point, I went to the hotel, showered, and slept. 

The swelling kept getting worse and worse, and they slowly started cutting slits in her head bandage t make room for the swelling.    She had very brief periods of time where she was kind of awake and obviously not happy.  She had IVs in both arms and both feet (they tend to go bad fast in babies, so it is best to have one in every place, so that when they fail, you can just take them out and not worry about trying to put another in), and monitors hooked up all over the place.  Pretty late in the day, they unhooked her and let us hold her briefly. 

The ICU—The Middle Days

The days were Lis’s eyes were still swollen shut and she was still really out of it were… okay.  I mean, they sucked, but she was really tired and out of it, so she just wanted to sit there and listen to us.  We read to her a lot, and made sure we touched her and let her smell us.  We kept up on the pain meds, and we even gave her bath.  The bath was a disaster—she apparently (I was asleep at the hotel and I am grateful I wasn’t there) screamed bloody murder the whole time and was frantic afterwards.  So, that sucked, and we resorted to washcloth baths for the rest of the time in the hospital. 

At some point, they gave us a stool softener for her, because narcotics make things, um, difficult for babies to pass.  OMFG.  You would not believe the diaper that we received.  Just warning you.

For the most part, I took the night shift, and Vor slept.  When morning came, we would eat breakfast and drink coffee, and his Mom would show up.  When his Mom showed up, I would hang around for a little while, then I would go to the hotel and sleep for about four hours or maybe more.  I would pick up food for dinner on the way back, and his Mom would go home, and repeat.  Visitors did come, but I usually missed them.  That’s probably good, for me, because I tend to not want company when I’m tired and scared. 

Feel free to tell people not to come.  If you are exhausted, or the baby is freaking out and in pain, having an extra person there will only cause problems.  Which remind me, about two to three days post surgery is the peak pain and swelling day.  Don’t have any visitors then.  It’s just an awful day.  Lis looked her worse and just had this low whimper all day.

We played music a lot for her.  She loves music, so this seemed to help.  Music and reading to her.  We read Harry Potter.

Oh! And! Note: During this time, Lis figured out how to game the system on medication.  Lis likes water, and formula.  She does not like flavors—juice, Tylenol, etc.  After awhile, she began refusing formula when we put the Tylenol in it, so we had to switch to syringing it in.  this worked for awhile, until she figured out how to hide it in her cheeks for, I kid you not, up to a half an hour before spitting it back out at us.  The little stinker.  Ask your nurse for what tricks to use to get them to take it and actually swallow it.

Friday, November 23, 2012

Halloween, Late

Well, what can I say.  Sleep was more important to me than this blog, but since the sleep strike is showing no signs of abating... well, life goes on.  Or at least, that's what they say.

The main Halloween costume:

Yes.  She is a Star Trek captain, specifically, the command gold form the original series.  I believe that by the time she is old enough to be the next captain of the Enterprise, they will switch back to gold because it is flattering for her skin tones.

There was also this costume:

Because it was cute, that's why.

In sequence: Finding candy, grabbing candy, results of candy being taken away.




Lastly, greeting people at the door:

She's either going to be just like us, or need years of therapy.

For Cranio Parents, Part The Third

Intro    Part 1    Part 2

Brace Yourself: The Night Before / The Day of Surgery.

Lis couldn’t eat past 1:30 am.  You better believe we made sure that she was sucking down the last drop of her bottle at 1:29:59 am.  When the doctor told us she wouldn’t be able to eat for about six hours beforehand, I laughed at her and said, “So, what you’re telling me is that you want me to transport a wild grizzly bear in my car to you with no tranquilizers?” She laughed, and said yes. 

It actually worked out okay.  We slid Lis out of her bed and into her car seat with a paci, and she went back to sleep for the car and for the walk up to surgery.  [Bonus points if your hospital has wagons, because you will have a ton of stuff with you]  Once we were there, there was so much activity that when she woke up, she was fascinated by all the people and sounds that she never got too grumpy. 

Lis got weighed in, vitals signs checked, doctors came by to check her out, do last minute informational sessions with us, have us sign things, etc.  All that took about an hour or so.  Mama Vor was with us, helping corral Lis while we took care of documents, etc, [NOTE having a third person there is super helpful, but chose wisely! Pick someone who can keep it together and not be an extra burden on you.  Mama Vor was awesome] and when we saw it was getting close to go time, she said her goodbyes to Lis, and went out to the waiting area so that we could be alone. 

I will never, ever be able to erase from memory the moment the head anesthesiologist nurse came and took Lis away.  She was kind.  She stayed in the room for a few minutes, letting Lis get to know her, playing with her, letting her play with her surgical mask and her scrub cap.  After a few minutes, Lis went happily into her arms, we gave her last kisses, and they walked away.  Lis looked at us over the nurse’s shoulder for a few minutes, but then wanted to look around at where she was going.  The back of her little head was the last thing I saw, and I completely lost it.  So did Vor. 

That was the worst moment of my life, and I hope I never find anything to top it.  I think if there is a worse moment out there, it will completely break me.    Just to warn you. 

Waiting Waiting Waiting.

They told us it was a six hour operation.  That’s true, but not true.  Be ready for that.  Perhaps, from the time the knife touches her skin to when they stitch her up is six hours, but she is out and you are away from her for much much MUCH longer.  We last saw Lis around 7:00 am.  We didn’t see her again around 5:30 pm.  She was out for most of that time.  Lis’s surgery took a bit longer as well, because Lis had some minor complications that caused much hmmmm-ing when they opened her up, and plans were revised on the fly.  [NOTE I never again want to hear a doctor come out of surgery on my daughter, and say, “Well, that was interesting.”]

We were in a very nice open air waiting room with comfortable chairs and couches.  There was a nurse we checked in and out with so that she always knew where we were and how to reach us.  That being said, we always made sure that one of us was in the waiting room at all times.  I brought work and book to distract me. People from work made up goodie bags for us that had applesauce containers, spoons, granola bars, trail mix, gum, puzzles, magazines, cards, a stress ball, and lots and lots of tissues. 

There was a nurse solely dedicated to scrubbing in and out of Lis’s room to give us updates.  She came out every 45 minutes to 1 hour to give us updates.  I basically lived and died by that schedule for nine and a half hours.  She would talk to us for ten minutes, I would send texts and make calls to give people updates, and then I would watch the clock, counting down until she would come out again.  I CANNOT DESCRIBE how grateful I was for the constant updates. I have heard some people went hours without an update and I think I would lost my mind. 

Recovery Room, aka, The Cry Fest. 

Eventually, we got word that Lis was in the recovery room, and they brought us down to the individual waiting rooms outside surgery.  Our doctors showed up and gave us the rundown of how it all went, and described the minor complications she had.  They told us again what to expect for the next few days, and then sent us in with the anesthesiologist to see her. 

Bring tissues.  I kept it together, but I could not stop the tears from just falling.  I was okay, but my tear ducts were completely independent of me at that point. 

Lis was asleep, snoring loudly and making the nurses laugh.  She always snores, so that was good to hear.  Her little face was not bruises or swollen yet, though she looked a little pale.  She had only needed one blood transfusion, though, so that was good.  Her head was completely bandaged.  Once the anesthesiologist signed off on her, we wheeled her over to the ICU and got checked into our room.

Wednesday, November 21, 2012

Just So We're Clear

It's 1 am. Lis is screaming, just like she does every night. Not sleeping, still. We're going on 4 months of this nonsense (bonus! 4 months since surgery & she's doing great!). I'm so tired, and I'm angry almost all the time. I have a new case on my docket that is so public and sensitive that I won't even breathe a word of it here, but rest assured I was working on it all night until the screaming started.

I give up. I really do. I love Lis, but something has got to change.

Wednesday, October 31, 2012

All The Coffee Won't Do

Guys. The sleep thing? I thought we had hit rock bottom before. We did not. I fear we are not there yet. Lis woke up at 3 am and WAS AWAKE FOR THREE HOURS. That wasn't the first time she woke up last night, either. I don't know who was crying louder last night, me or her. Or Vor. God save us, because it's going to take a miracle at this point.

Sunday, October 21, 2012

For Cranio Parents, Part The Second

Intro - Part 1

Disclaimer: This is my experience with the process.  It may not be yours.  It may be similar; it may be completely different.  It can be highly specific depending on the child, which type of craniosynostosis, the family dynamics, which type of surgery, what hospital, what doctor.  I wobble back and forth in telling this as a story, as it unfolded for us, and telling you facts and items that helped instead of the story.  So take it for what’s it worth, as just another experience.  File it away for reference as either helpful or not.


Post Diagnosis: The Weeks Before Surgery

The doctor gave us a “prescription” (you need a prescription! Who knew! I guess it makes sense though, otherwise I’m sure you’d get Twilight crazed teens showing up, all “I’d like a pint, please”) for Lis to get blood from the blood bank during the surgery.  Once we had her blood type, we recruit family and friends to donate so that we could do direct donations.  We all donated blood about two weeks out from surgery.  I was deeply touched by the number of people—friends, relatives, and even other attorneys in our legal community—that came forward to help. 

We took lots and lots and LOTS of pictures.  Get some professional pictures, if you can, pretty black and whites with a soft focus lens out in a nice field or in the mountains or whatever.  I told myself, out loud, and I told everyone, it was to document time passing and what she looked like now.  In my head, a little voice constantly said, “just in case.”  I would not advise letting that little voice gain a foothold and become verbal.

Around the time Lis had her two week pre-op appointment, we started being even more diligent about keeping sick people away from her, avoiding sick people ourselves, washing out hands over and over and over, etc.  We did not want to have to delay her surgery date.

Lis had her last round of well-child shots ten days before, which was the absolute limit.  Make sure you check that out, and don’t go getting shots days beforehand without clearance from the surgeons and the nurses.  I think the restriction is no live virus shots, but you really need to check with the doctors and nurses.  There’s also some restrictions with antibiotics, etc. 

We made sure everyone got lots of Skype time, Facetime, and real face to face time with her.  We let Mama Vor keep her overnight one night not too long before surgery, so we could be well rested.  The last weekend and night before surgery, we kept all to ourselves.  We didn’t even really take phone calls, though texts were okay. 

The Things We Carried

For Lis: Her diaper bag, with a few diapers and wipes, though that was more for the time before surgery, since they had all that there for us for our stay.  A few bottles, because I wasn’t sure if she would accept the hospital bottles.  I also brought some of her formula, because they told me to—they said to bring some in case they didn’t have it, and if it was a kind they didn’t have in stock, they would make sure it was there within 12 hours.  Bonus points to Riley for that.  I brought her favorite lovies and blankets, anything that was really soft and had a nice texture.  I brought ditties (pacis), and I brought stuffed animals to line her bed.  I brought a few light blankets, a few medium blankets, and a few heavy blankets.  We brought snap up onesies which made having clothes on her easy-peasy, since we didn’t even bother snapping the bottom [NOTE nothing will fit over their heads, make sure everything is snap up.  NOTE you will not be able to get anything over their hands and feet, since there will be lines and IVs everywhere.  NOTE  long sleeves do not work with IVs].  I also brought some toys that made noise that were easy to grab, and since she loves music, we had our ipads and phones to play music to her. 

For us: Life was made easy for us because Mama Vor got a hotel room within walking distance.  She stayed there at night, and we would take turns crashing during the day.  We kept all our crap there, and kept minimal things in the room.  Pack whatever clothes and essentials you need for two overnights; at that point, for the love of all that is holy, go home or to a hotel and shower and swap the dirty stuff for clean stuff.  There is not much room in an ICU room to keep a week’s worth of clothes and work and whatever.  I rotated between jeans and yoga pants, and a comfy slouch sweater that I constantly rotated tank tops underneath.  I also had a sweatshirt.  Fuzzy socks for sleeping in and wandering hospital hall ways at night.  Slip on shoes or flip flops to do the same. 

Wish I had brought my own pillow and warm blanket, but the hospital stuff was adequate.  We brought water, mostly ate hospital food, though friends stopped by and brought us stuff from Trader Joe’s, which we kept in the common refrigerator. 

What the hospital had for us: diapers; wipes; formula; nipples to attach to the ready to use formula; bathtub for Lis; baby body wash; wash cloths; spit up cloths; blankets; pillows; a swing for Lis; a stroller for Lis.  The swing and the stroller proved invaluable later in the stay when we could unhook her.  She screamed bloody murder unless she was in motion.

Friday, October 19, 2012

For Cranio Parents, Part The First

Intro Here.


Disclaimer: This is my experience with the process.  It may not be yours.  It may be similar; it may be completely different.  It can be highly specific depending on the child, which type of craniosynostosis, the family dynamics, which type of surgery, what hospital, what doctor.  I wobble back and forth in telling this as a story, as it unfolded for us, and telling you facts and items that helped instead of the story.  So take it for what’s it worth, as just another experience.  File it away for reference as either helpful or not. 

Pre-Diagnosis: Suspicions.

So, your doctor has just said to you, “Hey, that funny head shape?  It’s not just a newborn thing.  I think it might a problem that we’re going to watch and see if it gets any better, and oh by the way, your kid might need surgery.  KTHXBAI!”  Or maybe your doctor has been silently watching your baby’s head shape, running her hands over your baby’s soft spot, and finally, at one well-child visit, said, “The soft spot seems to be closing.  We’re going to refer you to a specialist for some scans.  It may be nothing; it may be something that needs surgery.” 

All of this means you’re freaking out, trying to figure out what the hell craniosynostosis is, when you can barely remember how to spell it, and sure as hell can’t say it. You’re waiting for the referral to get the scans; you don’t know anything, and that is the biggest problem.  You just don’t know.  So you Google.

Don’t Google.

Okay, you did, and that’s how you ended up here.  You probably did a Google image search, and saw los of scary pictures of severely deformed children, and then saw one—mine!—who had just a kind of funny head shape with indents in the side.  Not too bad, just a little goofy, something hair would cover later in life, right?  Wrong.  If we had let her head shape go on, she would have been severely deformed, and that would have been the least of our problems.  As her intracranial pressure increased, so would her risks for brain damage, blindness, seizures, etc.  But, it won’t, and now her little head is nice and round, with plenty of room for her brain.

If you insist on looking at images of children who have had this surgery, I suggest these websites: lissables.comcraniokids.orghttp://wilhelmupdates.blogspot.com;http://milesandmems.blogspot.com/2011/02/craniosynostosis.html ; http://sagittalcraniosynostosis.blogspot.com/

My husband went through all the medical journals and articles that he could find.  Here are some of the ones he found helpful: [okay, they are lost on the hard drive somewhere and I will put them up when I find them]

As you are Googling, you’re going to come across information indicating that there are two kinds of surgeries: endoscopic, which is touted as “less invasive,” and cranial vault reconstruction, which is what we had.  File it away for questions for your doctor at the appointment.  More on this below. 

Diagnosis: First Appointment.

Our doctor referred us to the local children’s hospital, Riley.  I HIGHLY recommend going a children’s hospital, because they specialize in CHILDREN.  You don’t  need to worry about what kind of patient the anesthesiologist took care of last, because the person drugging your child is someone who specializes in kids.  They have tools that are kid sized.  They are familiar with all the kid specific issues.  They are used to handling frantic parents.   In fact, if you are all in the area of Riley, even if it means getting a hotel, I recommend Riley.  It’s a children’s hospital that does some of the most of these kinds of surgeries. 

The waiting between the referral and the scan is hard.  Try not to Google to much or get too worked up.  You know there is A Thing you need to deal with, and The Thing is being addressed, and in the meantime, The Thing is not hurting your child.  You are acting in good time.  Personally, Vor and I did not tell anyone about it, because we felt we just could not handle the emotional response from other people, the questions we couldn’t answer, the demands for information we didn’t yet have.  Make your own choice. 

The scan, diagnosis, information dump, and surgery date setting happened all in one swoop.  The nurse came in, took a quick look, and said, “Well, we need the scan, but her head shape is a classic head shape for sagittal craniosynostosis.”  She sent us down to the scan.  The scan was done in five minutes, though Her Ladyship Lis did not appreciate being restrained for even a short period of time.  Vor stayed with her (as he does for medical procedures—I get woozy) and I paced the hallway.  They sent us back to the neuro team and we waited in our room. 

The good doctor was in within minutes of seeing our scan, gave us the brief “Yeah, I saw her scans.  Yeah, her skull has fused shut.” diagnosis, and sat down to talk.  The neuro NP followed her in a few minutes later. 

This is the part where you need to have a second person there with you.  Don’t do this appointment on your own.  The whole part had been hard emotionally up to this point, but it got really hard here and there was a TON of information.  Bring someone who is good at shifting gears and becoming a data collection device and asking good questions, if that’s not you.  The doctor walked us through what the diagnosis meant, and showed us the scans.  She showed us what normal would be, and how we weren’t.  She walked us through the risks of the conditions, and what surgery entailed.  She went through the entire surgery procedure, recovery, and risks.  She talked about the other endoscopic alternative for surgery, and why that wasn’t good choice in her case.  She answered our questions patiently.  She gave us every bit of information we needed, and some we probably wished we didn’t need.  She was, in short, amazing. 

Here’s where we talked about the endoscopic versus the cranial vault reconstruction.  Given Lis’s situation, we were not in a position to even consider the endoscopic approach.  We still asked about it, because obviously, anything that is less invasive sounds better, right?  I don’t know.  Even if Lis had been a candidate for it, I think we may not have chosen it, and here’s why: (1) It’s newer, and has not been practiced as often. (2) It really is not that much less invasive—they are still opening up your kids’ skull, for pete’s sake. (3) the levels of pain and swelling afterwards are the same [other cranio parents have told me this, ones who had two kids and did both ways, one on each kid, as did the doctor].  (4) A helmet will be necessary for about a year afterwards.  (5) A bigger deal to me than the helmet is who is controlling the helmet.  A technician works with you on shaping the helmet over the course of the year to make the head shape round.  This means that the technician is in control of the head shape, not the doctor.  That really bothered me. [NOTE see the disclaimer above.  You need to make your own choice.  These were our thoughts and reasons].

We set the surgery date.  The surgery sate will be dependent on your child’s age, how old they want the child to be at the time of surgery, the stage of the fusion of the sutures, and yes, insurance.  For us, we were precleared for the surgery, because I called as soon as we were referred to Riley for a diagnosis, so we were set to go within six weeks.  We needed to wait for Lis to hit six months, for various medical reasons dependent entirely on her specific issues. 

We took Lis down to get her blood drawn for her blood type.  GO TO THE PHLEMBOTOMIST.  Do not let anyone other than the professional blood drawers (who draw blood all day long from tiny children’s veins) take your child’s blood.  Vor calls them the professional vampires.  They had that needle in and out and all the blood the needed and Lis didn’t make a sound.  They were excellent.  Every time we had to do this, they were excellent.  After one disaster with a regular nurse (who was very kind), we would not let anyone other than the professional vampires take her blood. 



Wednesday, October 17, 2012

Eyes Wide Open

This past Sunday, I admitted defeat.  After Lis finally stopped screaming and went to sleep, I sat in a chair for almost an hour, silently crying and staring straight ahead.  When I finally got a grip, Vor made a comment about how we need to do a better job of vacuuming the floor (“I can’t believe you let her run around on this floor”) (which sounds like a real jerk thing to say, but I know that by you he meant we, and yes we have a dog who sheds, so there you go), and I took everything out of context, and I just stood there, crying, unable to say a word.  I basically stared straight ahead for aloes to two and a half hours that night, not speaking, not moving, just crying.  Vor was baffled.  I was not.

Sleep, people.  We all need some here.

Usually, when you see someone post about how they had this breakdown, its followed by, “Oh, but that night, she finally slept,” or, “She slept better, and I got some sleep,” but no.  It only got worse.  Before it was just waking up.  Since last Friday, it’s been hysterical screaming, shaking, eyes wide open but not seeing, must be in constant contact with one of us.  Night terrors.

I took her to the doctor yesterday.  Hand, foot, and mouth, AGAIN, which is undoubtedly not helping the sleeping.  And night terrors.  For which you can apparently do nothing. 

Vor and I are falling apart because of the lack of sleep, the constant screaming, the stress, etc.  I can’t stop crying at every.little.thing., and he is losing his temper.  We are deliberately (subconsciously) taking everything the other person says the wrong way, and becoming offended at every word out of each other’s mouths.  We’ve lost all patience with each other, because we have to lose it with each other, and not her.  In an effort to keep as calm as possible with Lis, we are directing all of our frustration and angry and hurt and lack of sleep at each other, because, well, I can take if he gets mad at me, and vice versa. 

Is it always like this?  Are all kids sleepless like this?  Do all new parents never ever sleep and watch their relationships disintegrate because of sheer lack of sleep?

I’m at a loss.  I don’t know what to do, how to help Lis, how to help ourselves.  I feel like we just can’t catch a break.  It’s just NOT FAIR, DAMNIT.  I have a baby who went through massive surgery for something that could have severely injured or even killed her.  It was terrible, awful, and now this, too?  Now I also have a baby who can’t sleep, who wakes up every hour screaming? 

I just can’t.  I just can’t.