Tag Archives: stress

So that’s what relaxed feels like

10 Nov

Since Nugget is still tucked away and my mom is here and all up to speed on Jade’s routines, I thought it would be fun to accompany Michael to the weekly Big Band rehearsal tonight.  I stopped going to rehearsals at the end of September and I’ve really missed it.  Every time an update e-mail would go out to the group regarding set lists and stuff we should listen to on YouTube, I’d feel a pang of envy.

Well, I’m not sure if it’s because tomorrow is Remembrance Day and lots of folks are taking today off to make a four-day weekend, but there were quite a few players missing from the rehearsal.  We were down to two saxes, and had no drums, no piano, and no vocalist.  One of the saxists (is that the right word?  It doesn’t look right…) had invited a guy out to listen, and he gamefully took on the drums.  I can’t improvise worth a darn, so without music to read I couldn’t take my old place at the piano.  But the vocal charts happened to be there, so I got to sing!

I know I’ve blogged before about the high I get from singing with the band, so I won’t go into it again, but man… I haven’t felt this good in months!  The band is currently rehearsing for a Christmas gig, so I did a couple of Christmas tunes, and then a couple of jazz standards.  I don’t have my full vocal range at my disposal at the moment, what with Nugget squishing up my diaphragm and lungs and stuff, but I was able to do a pretty good job of most of it, and that’s when it really feels good.

After rehearsal, Michael and I joined the rest of the band at the Kopper King for nachos, wings, and beer (orange juice for me and ginger ale for Michael).  I was kind of wilting by 10:30, but having to much fun to leave.  We have such great people in the band, and I really missed them.  It felt like… home.


Sorry for the lapse…

9 Nov

… but wireless Internet in Whitehorse hit an all-time low yesterday when apparently all of Navigo / NorthwesTel / Bell’s customers went without service for the entire day.  Sorry to leave you in suspense!  To summarize:

  • No Nugget yet, but when Heather came to do my prenatal checkup yesterday, she said his/her head was so low that she couldn’t even feel it!  Also, she says her practice tends to go crazy around new moons and full moons.  There’s a full moon on Wednesday, so…
  • After a couple of great days, Jade seems to be kind of crashing again, with lower ketones and more seizures.  Michael and I are actually wondering if she’s not getting enough calories.  There’s still so much learning to do.
  • Medicine and vitamins continue to be a huge challenge.  I try to coax and wheedle as much as possible, but we’ve had to resort to physically holding her and forcing them in a number of times.  I can’t even express how much I hate doing this, especially on nights like tonight when meals are also a battle.
  • The house is slowly being tamed as my mother works her awesome super-organizing-machine powers in between Jade-watching and cooking shifts.
  • We moved all of Jade’s things into her new room today and she’s spending her first night in the big-girl bed.  She’s had a few naps in there already, so we’ll see how tonight goes.
  • I am exhausted.  But I REALLY wanted to try baking a low-carb almond bread for Jade tonight.  But it takes an hour to bake.  Argh.  Hmmm, maybe I’ll just weigh out the ingredients and bake it tomorrow.  Then it will be ready just in time for Jade’s morning snack…
  • I am SO ready and yet SO not ready for this baby to arrive.  And, um, no, we still don’t have names picked out.

Home free

31 Oct
Ready to go out

Ready to go out

God, it feels good to be home!  I was discharged from the hospital on Wednesday afternoon, having apparently passed the kidney stones (and also, apparently, averting the desire of one of the OBs to INDUCE LABOUR — he must be INSANE to think I could go through childbirth without first recovering from the kidney stones!) and spent the rest of the time in Vancouver running around to grocery stores and hospital appointments and cooking fiddly recipes full of cream and butter in which each ingredient must be weighed to within 0.2 grams.  So this is the first time I’ve had a chance to get back to the blog, even though I originally fully intended to keep it up to date during the whole diet initiation phase.  Yeah well, the Universe had other plans.

[Paranoia aside:  I worry that those of you who don’t actually know me in real life will start thinking that we’re making up all this stupid drama in order to get attention and sympathy.  Because I hear there are people out there sick enough to do that.]

So, I missed half the training at the hospital because of the damned kidney stones, but since we’d done so much research ourselves before going down, it really wasn’t a big deal to catch it all up in the one session I got to go to on Thursday.  Plus I got a chance to ask the questions I had.  The whole week became more about making sure Jade got a good start than it was about teaching us.  The keto team was pretty darned impressed with Michael.  (Sadly, it seems they don’t have much faith in fatherkind.  They said they get nervous when dads come without mums to keto initiation, but they didn’t say anything about mums coming without dads, which probably happens a lot more often.  Lucky us that Michael is such an awesome dad.)

As for the kidney stones, I hope to hell it’s something I never have to go through again.  Besides the joy of having to pass all your urine through a sieve (to look for stones), staying hooked up to an IV (to pump the body full of fluids), and spending your time in one of those gorgeously fashionable hospital gowns with your ass hanging out the back (because who has time for underwear when all you’re doing is sleeping and peeing?), there is the pain.  No two ways about it, the pain is awful. I spent a whole night and day on morphine — I’ve never slept so much in my life.  Every time I asked for a shot, it was after struggling with guilt and fear and going for as long as I could stand it.  If I get morphine, it means Nugget gets morphine, and I really don’t need another drug addict baby around here, yanno?  But let me tell you, I needed something to stop the pain, if only to stop all my other muscles from tensing up (my abs were very sore by the time the kidney stopped hurting).  People, I tell you solemnly, I WOULD RATHER BE IN LABOUR!

Tail dragging in the snow -- I love that this costume allowed Jade to wear warm clothes underneath!

Tail dragging in the snow — I love that this costume allowed Jade to wear warm clothes underneath!

There were some nice things about the hospital stay.  I met some very nice doctors and nurses (I LOVED the admitting doctor at Emerg).  And the hospital was close to the New Westminster waterfront, so I got to hear train whistles blowing, a romantic sound when it’s just heard from a distance.  And they did an ultrasound to check out my kidneys, ovaries, and appendix (couldn’t see the appendix because of the baby in the way), so I actually got to see Nugget’s face!  Being so late in pregnancy means there’s a lot more detail, and my sister got to see it with me.  We even watched Nugget make sucking motions with a hand in front of his/her face.  Nope, still don’t know the sex; I specifically told the tech I didn’t want to find out.

This whole week has been such a roller coaster, it’s left me extremely hormonal and emotional.  I will cry about practically anything.  The idea of other kids being sick like Jade.  The idea of other families being normal and not having sick kids like Jade.  Watching Jade hit her head yet again with an ill-timed drop seizure.  The fact that Michael had a Nanaimo bar dessert on the plane even though Jade was awake, because I really wanted one but it wouldn’t be fair for both of us to have one and not give one to Jade when she can SEE them and is asking for them.  Somehow losing my coat in Vancouver, even though I never actually wore it there.  Jade not finishing her meals, when it’s so important that she does.

I really hope a good night’s sleep will fix me up.

In the meantime, it did my heart good to watch Jade out trick-or-treating.  The neighbours were great about giving out our special non-food treats, and one of them even bought her an extra gift that Jade absolutely loved — a kit containing an activity book, paints, brushes, glitter glue, and other crafty goodies.  Plus, one of my bloggy Whitehorse friends went out of her way to find us some of the harder-to-find ingredients that are important to Jade’s new diet (36% cream, coconut oil, old-fashioned-no-sweetener-added Kool-Aid) and she’s dropping them off tomorrow morning.  And Crook and Nanuq were both well looked-after while we were away.  And my girlfriend down the street reminded me again to make a list of people to invite to a food shower she wants to organize to fill up our freezer for when Nugget arrives.  People are so good to us.

It took a few houses before Jade got brave enough to actually say "Trick or Treat".  Notice Michael's clawed face.  What a vicious lion.

It took a few houses before Jade got brave enough to actually say "Trick or Treat". Notice Michael's clawed face. Vicious lion...

Finding Jade

19 Oct

Can anyone tell me where my daughter has gone?

For two weeks now, Jade had been waking early in the morning with clusters of seizures we’ve had to break by using emergency medication.  Up until last week, that was Valium.  But that drug has to be administered rectally (not fun for any of us, least of all Jade) and we’d been noticing that it was becoming less effective.  It used to be that once administered, she’d go for a whole day with no seizures at all, since the Valium was still in her system.  Now it still seems to stop the clusters, but she continues to have seizures.  All day long.

While we were in Vancouver, we asked about an alternative and Dr. Huh gave us a prescription for Midazolam.  That’s the same drug they tried to use for Jade’s first spinal tap, the one that didn’t sedate her but made her loopy, instead.  The good thing is it can be given orally, so we’ve tried it a few times.  Who cares if it makes her loopy if it stops the seizures, right?  Since we’ve gotten home, she’s had the Midazolam about five times, including twice today, the first time we’ve ever used emergency medication twice in a day.  In fact, she’s supposed to be sleeping right now, but she’s so wired from the Midazolam that she’s upstairs with Michael, who is trying to feed her since she’s hardly eaten all day.

This whole cycle scares the crap out of me.  There’s a very real and very scary chance that she could suffer brain damage if we let her seizures go on for too long.  That fear tortures me.  But the more we use the emergency meds, the less effective they are.  We have a two-year-old whose body is already addicted to drugs.

For the past few days, it feels like Jade has been disappearing.  She spends a lot of time tired and emotional and asking either for a bottle of warm milk (she has gone through 8 litres this past week!) or asking to sleep. When she tries to sleep, she has seizures that wake her up.  Sometimes she seems to be in a fog (Michael describes it as being “drunk”) and other times she just collapses on us and cries and can’t verbalize what she needs or wants, as if she’s forgotten how to talk.

When she’s actually alert, she’s been getting into everything and testing us, like pulling Crook’s tail repeatly after being told not to.  Granted, that could be her being a toddler, but to me, it’s just not like the child I know she is.  I can’t explain it, but it’s just not her.

Every once in a while, we get a glimpse of her real personality, and it’s like a burst of sunshine in cloudy weather.  I think, “Hey, look, there’s Jade!” and I wish I knew how I could keep her from slipping away again.

The breaking point

19 Oct

When I was in junior high, I read a book about a girl whose father had a mental breakdown.  I’d never heard of mental breakdowns before and found the topic rather intriguing.  My parents are extremely hardworking people, and I remember asking my dad, “What if you had a mental breakdown?”  I still remember his response clearly, delivered with a dismissive snort: “That’s not my style.”

I don’t think it would be too contentious to say that there are people who really are mentally tougher than others, some who are more prone to panic, some who are more stoic.  I also think that if you put anyone under enough stress for long enough, there will be a breaking point.  But I am thankful that I seem to be cut of pretty sturdy cloth.  Like my dad, I’d rather hope for the best, look for solutions, research, analyze, whatever it takes to get through things.  (Unlike my dad, I’m a lot more likely to actually express my emotions while I’m doing it — but then, I don’t have the burden of a Y chromosome.  Ha!)

Over the last couple of months my standard response to, “How are you?” has become, “I’m hanging in there.”  I can’t lie and say things are great, but at least it’s true that I’m doing what I can.  The standard response to, “You are so strong!” is, “You do what you have to do.”  What else can we do when we have no choice but to live the life we’re given?

Well, my friends, the truth is, I have reached a breaking point.  Maybe not the breaking point, but I can feel my strength ebbing.  The last couple of weeks have been pretty nightmarish (more about this in another post) and I am starting to crack.  I was on the brink of tears all day today.  I am bitter and angry and even resentful of well-meaning remarks, which is totally unfair.  A few days ago I thought wryly that maybe we’re going through this now so that when we finally get to start the keto diet — and we immediately see miraculous results, of course — it will seem easy to deal with by comparison.  But right now, I don’t know how we can possibly go through another month of this.