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.

Friday, October 5, 2012

For Cranio Parents, Intro

I've been getting a steady trickle of emails from people who have had a child either  diagnosed or put on a watch list for craniosynostosis.  So, in the next few weeks, I'm going to dredge together the common questions I've been getting, and tag them all together.

So, THAT'S a project and a half.  But--I am so grateful for the random internet strangers who did the same for me.  As I told someone else today, the only way I can pay it back is to pay it forward.

Thursday, October 4, 2012

How To Decide Which Home Improvement Project Comes First


Yesterday, we babysat for our friends.  They have two children, one who was born in May and one who is three, but is severely disabled.  So, it was going to be Vor and I v. three babies.  I knew we were outnumbered, so I tried to prepare the battle ground. 

I washed every dish I could find, and put away all dishes.  The dishwasher was cleaned out, and everything put away.  All toys were relocated to their proper locations, and all dog toys were removed from all baby toys and relocated to their proper locations.  The activity mat was re-set up for the three year old; the swing was brought down from upstairs for the 5 month old, and I set out a blanket for Lis to play on.  I filled up a shoebox with toys for Lis to sort through and dump; I placed the exersaucer in an optimal locations; I placed Lis’s runabout on the hardwood.  The changing station was fortified with extra diapers and wipes; all potential harbors for the enemy (re: things that are not SUPPOSED to be toys) were removed; diaper creams lined up.  Floors were swept, pack and plays were lined with soft blankets, beds were made for non-mobile children to sleep on.

I ventured into the bathroom and noticed the toilet paper was low.  I ventured to supply closet, where diapers, papers towels, wipes, toilet paper, the vacuum cleaner, etc is kept.  The toilet paper was on the bottom, under a huge box of diapers.  I tugged.  Stuck.  I tugged some more.  Still stuck, but the vacuum cleaner moved a bit. 

With a final tug, I freed the toilet paper.  The bag shot towards me and all 36 rolls of toilet paper exploded from the bag, no doubt as a result of my awesome muscles from my time at the gym.  They bounced into the bedroom, into the laundry room, down the hallway, into the kitchen.  Some unraveled.  The vacuum cleaner tipped violently, which knocked the box of diapers over.  They in turn spilled out all over the hall way, since of course, all the bags of diapers were open. 

At this point, the dog fled upstairs.

As I flailed about, trying wildly to keep the diapers and the rolls of toilet paper from escaping, I bumped the top rack, where the wipes and the papers towels reside.  Packages of Target wipes came raining down on me, hitting me with crinkly thuds, and rolls of paper towels bounced lightly off my head, arms, and shoulders. Hangers dislodged themselves from the rack and clattered down, intertwining as they went.

When it was all said and done, about 30 seconds had passed, and I had created 30 minutes of work for myself.  I was standing in a sea of diapers and wipes, toilet paper and paper towels, hangers and a vacuum cleaner in my hand. 

What I’m really trying to say is that the supply closet just moved up to the top of list for the plan to remodel areas of the house.  I want organizers in there before I ever open it again. 

Wednesday, October 3, 2012

To Pile On The Balance Beam


There have been a bunch of posts of work life balance in the MILP world recently, so I thought I would come join the party.  I can’t talk about mine, though, without including my husband’s, since he is an attorney too (GASP two attorneys in the house marriage is doomed failure imminent yadda yadda yadda, you think I haven’t heard people say that before? Shut up).

My work/life balance is about as good as you can get for a lawyer, and to prove it, I have a craptastic salary.  That would be part of the balance, folks.  I work for a not-for-profit/public interest company.  I am in court 85% of the time, so my schedule is very dependent on the court’s schedule.  While sometimes that means I am at the whim of a judge scheduling a last minute emergency hearing, or deciding to stay as late as possible to finish the hearing, 95% of the time, it means that when the courts close, there is not too much for me to do.

While my work day itself is very varied—I am always bouncing back and forth between the office, the courthouse, other attorneys’ offices, meeting volunteers in random places, helping with home visits, getting records from random places, and occasionally on a REALLY fun day, going to the jail and having them make me remove staples from all my documents OMG—my usual daily time at work is not.  I am pretty much done by 4:30, and I take maybe an hour of reading home with me.  Yeah, there are some days where the judge leans over the bench and is like, “Hey, all of you can find someone else to pick up your kids/let out your dog, RIGHT? Because I am going to keep going until we finish.”  Those days don’t happen often, and even when they do, I (1) have a husband and a MIL nearby, and (2) I can usually predict that is going to happen the day before, when the lawyers and the pro-se people start blowing up my phone with chaos. 

The balance part that is tricky with my job is the emotional aspect.  I am appointed to help represent children who are suspected of being abused or neglected.  I don’t work for the state—remember, private not-for-profit.  It can be very draining, drama filled, sad, shocking, appalling, etc., etc., etc.  I’ve seen some really awful stuff happen.  There have been days when I’ve gotten home and dissolved into tears because what I dealt with that day was just that bad.  I’ve had to learn how not to take that home, how to leave it at the office, and how to make sure I don’t dredge it up while I am in my of hours.  It’s not something I’ve perfected, but I have gotten better. 

Balance in the traditional sense is more of a problem for us when it comes to Vor’s job.  Intellectual Property is his area, and he works at a big law firm with the big law hours.  When we get to the last month or two of his billable year, I generally expect to not see him until at least 7pm at night, having left at 7am, with him working at home, and then working both weekend days.  It’s not a “make your hours” thing either—it’s just that the clients’ end of year stuff coincides with his end of year, and everyone just wants THINGS DONE NOW.  Makes for crazy making.

That’s pretty normal for life in IP big law—long hours, with periods of intense craziness, followed by times of less crazy but still more work than can possibly be done by the people that are there.   The problem we are encountering is that they truly don’t have enough staff and they don’t pay comparable to other markets to attract people.  There is too much work, not enough people, and they aren’t paid anywhere near what they could be paid if they went somewhere else. 

That part is really frustrating, and it’s the part that is making us less than content right now.  It makes us wonder what life would be like at another law firm, in another city, in a smaller town, in a different state, in a smaller firm, in-house, or maybe, in another sector, such as the government sector.  Of course, the problem with any kind of movement out of this town/state is my job—my bar license is state-specific, while his is federal.  I’ve only been practicing three years, and almost every state that lets you waive in requires five years of practice.  And I like my job and the people, and they like me. 

One of my friends was talking to me last weekend, and I suddenly lost her call.  She texted me a minute later—“sorry lost reception—biking in mountains will call later.”  I showed it to Vor, who said, “I wish I had time for hobbies.  Like mountain biking.  Or yard mowing.  Or something.”  I blamed it on the presence of the very cute tiny human in the house, but Vor shook his head.  “Now, it was like this before Lis.  It’s like this because of our (my) job(s).”  It’s true.  We work, we come home, we eat, we talk to each other and baby, we walk the dog, we (try to, fail to) sleep.  We repeat.  Maybe that’s just how life has to be for awhile, until Lis is older or we rethink the job situation or something.  

In the meantime, we sneak in things that we enjoy.  I still managed to keep my vegetable garden going this summer, though it was more unruly this year than last.  I get to the gym, and I read books.  Vor reads books too, and his does that thing men do when they make their cars pretty.  We take our daily walks together and we go out to dinner with friends.  We just don’t have time for other things—like going to the nearby trails to take a longer walk/hike, or planning the landscape for the backyard, or any DIY house things we would like to do, or for me, work on my little work in progress (that book that I really have no plans for, other than its fun), and so on.  Sometimes, even necessary things get pushed aside, like mowing the yard, because that’s just not the priority (you know, until it becomes the priority). 

So, there’s balance for us.