Tuesday, March 29, 2011


A lot of my writing time this week is going towards an interview I'm doing for Masery Gaias over at Staff of Asclepius, a blog focused on Pagans with disabilities, major illnesses, and the like. Masery asks good questions, and it's taking a lot of time and thought to put it all together. I think our interview will be 2 or 3 parts, so watch for that in the future.

I'm finally getting over my latest illness, but Acorn appears to be coming down with something again (we're at 5 illnesses in the last 7.5 weeks...if this pans out, it'll be #6). Oxygen at night, while formerly a given at our house, is now cause for concern, and last night was oxygen, multiple breathing treatments, and coughing up a lot of mucous. Preschool germs are killing us, slowly and painfully.

On the plus side, he had a little inchstone moment yesterday: he drank from a straw. He's not controlled enough to only get as much as he wants, but he gets the idea. This is huge.

On a sadder note, another little guy on the trach board passed last night. D's familiy has been working most of the last year to adopt him and bring him home. He was home with them awaiting finalization of his adoption when a week or two ago he went into respiratory distress from aspiration; he was in the ICU and very touch and go. His adoption was finalized yesterday morning...and he passed away last night, with his parents. My heart aches for them, but I'm so grateful that he got to go home.

Wednesday, March 23, 2011

A brief Leaf update

Brief, because I apparently have bronchitis and yet another sinus infection, and there's only so many things you can take when pregnant, so I think I'm going to go take a nap....

Yesterday was our big mid-pregnancy ultrasound & echocardiogram.

Leaf was, for sure, quite the ham for the "camera" - moving and dancing and rolling...even when the tech needed Leaf to just be still for a moment so she could get a specific view or measurement.

And it's apparent Leaf already has a sense of humor - this laugh was caught as ze rolled (yet again) away from what the tech wanted to see

At any rate, Leaf is a hair above average for weight (but still within normal limits), which is a good sign - Acorn was already below average (and likely sliding down the growth curve) at this point in things. There was nothing unexpected or out of the ordinary found in the course of the ultrasound and echocardiogram, which makes me very relieved.

I'm feeling more of Leaf's movements these days - still somewhat random and inconsistent, but again, it's a relief that things are so normal.

Since I can't just look in on Leaf, it's hard not to worry that things might be going wrong, especially after how things went for Acorn. Someone I know had the opposite ultrasound result today, discovering that her baby had no heartbeat. The fact that that's even possible still terrifies me - much of this pregnancy is that way, really - walking a fine line between panic over what might be, and joy at what is.

Monday, March 21, 2011

I used to have a life...

Friday I went to lunch with some coworkers. I mentioned that we were going to the movies - likely our last evening out for a while, since we're likely to be trach-free (and thus nurse-free) at the end of April. He mentioned that with two kids, they didn't get out much. "I used to have a life" he said.

I thought about it quietly, as the topic shifted to other things.

I used to have a life where I worked in a nuclear power plant. Really. It may have been the best job I've ever had, other than the fact that it was the same old same old every day, and likely to end when the existing plants are decommissioned. I watch the situation in Japan with a mixture of horror and profound respect for those workers who have stayed behind - I know the folks I worked with would have done the same. Their families all lived close, so if an emergency arose, it was fix it, or their families took the worst of it.

I used to have a life where I was, primarily, an artist. School was a thing that I did between artwork. The pay wasn't great, but  I was amazingly peaceful.

I used to have a life where I had plenty of spare money to spend on things I wanted. I don't know, looking back, that I was all that happy, but at least I had expendable cash to chase happiness with.

I used to have a life where I didn't worry about oxygen saturations, feeding schedules, high risk pregnancies, or a million other little details that are now an every day thing.

But...I'm not sure that means I don't have a life now, you know? It's just not the same as any of the other lives I've had before.

Saturday, March 19, 2011

18 week updates - can we not have another like this?

Holy cow, I am so glad that we're almost to 19 weeks, because this week has nearly killed me.


Acorn is sick. Again. We're about to begin week 7 of assorted illnesses here. To decannulate, he has to be well enough to go under anesthetic, and we're definitely not getting there this way. We've had 3 (or maybe 4) respiratory infections, and a case of rotavirus. sigh. We have preschool to thank for the rotavirus, by the way.


The week started out even worse, though. While morning sickness has been getting better (better enough that I've actually gained weight instead of losing weight), Tuesday started out with vomiting. And not just any vomiting - it was blood. Lots and lots of blood, and I could hardly catch my breath in between waves of nausea.

I spent the morning in the ER - while we manage a lot of medical things at our house, it's my firm belief that blood is supposed to be in certain places, and if it's not staying there, something needs to be done about it. Since I was too nauseated to actually keep my anti-nausea meds down, the ER seemed like the place to go.

On the plus side, it turned out to be rather straight forward. My blood work was all very good - better than it's been this whole pregnancy. The working suspicion is that I have some combination of reflux and vomiting causing erosion of my stomach and/or esophagus. An IV dose of anti-nausea meds, a script for prilosec, and a few days of being sure to take my anti-nausea meds first thing in the morning, and I'm doing much better, but I'm completely exhausted. I slept almost 11 hours last night, and here it is not even 12 hours later, and I'm ready to fall over.


This week we're also reading nanny applications. It's so hard to know what to do on that front, but we have to try. School is just not working out all that well.


My mother messaged me to say my step-grandfather is in the hospital again. He's got severe emphasema, and last fall was hospitalized with pneumonia. They sent him home with hospice care. While I'd told her we'd make every attempt to go to his funeral...the truth is, I can't go. Not allowed to travel that far, due to fears of pregnancy complications, and frankly, it's too far from anything resembling a real hospital for my own peace of mind. Especially after this week.


We went resale shopping this morning, and found a play kitchen for Acorn for $25. Now to convince the family to buy him dishes & food for his birthday.

I think we're also asking for some sort of sprinkler toy. I want him to have swimming lessons, but we need to be sure his trach scar closes completely first.

It's funny how many toys he has. I remember all of mine fitting in a large box...


All the complications of the week are overshadowed by last night. Yesterday Leaf decided to hang out, sprawled against my abdominal wall. *Very* heavy for being such a little thing, when cantilevered out there like that. All afternoon, there was kicking and wiggling....we went to the movies last night and I was often distracted by more kicking.

How amazing that, as crazy as this all has been, there's this tiny living being in there?

It makes me smile - how great a reminder of how fleeting this time is, and how important to be present and mindful, each and every moment.

Thursday, March 17, 2011

Living with Fear

I don't know about all special needs parents - I only know my own experiences, and those of the support groups I'm active in.

But I suspect most of us, particularly kids with medical issues that leave us dependent on technological gear and little pieces of plastic, live with a secret: we're terrified.

Oh sure, most days we go about our lives, living them just like everyone else (or as much like everyone else as it gets when you're hauling around a kid with wires and tubes attached to beeping boxes covered in lights). But burried deep in our hearts is fear.

Most of it is fear of what if:

What if the power goes out
What if we're in a car accident and no one who comes knows how to suction
What if we can't get our supplies
What if I lose my job and thus our insurance
What if my child stops breathing...or worse, what if they stop breathing and I can't get them started again.
What if this formula doesn't work for my child either
What if this procedure doesn't work. Or the next one. Or the next.
What if we've missed something.

Many of us live with the knowledge (which I've written about before) that children die. Children like ours, with the same diagnosis as ours, and the same equipment. And we're sometimes not sure why our child lives, while others so similar don't.

This week fear came home to roost for some of us. Someone we know, with a child with a trach, lives in Japan, though the mother and children are Canadian citizens. They lived between Tokyo and the damaged nuclear reactor. They can't get reliable power, don't have a suction pump capable of making the flight to North America, and can't get to anywhere else that's any safer.

And we're all living this experience vicariously - knowing that (hopefully) we've planned for every possible natural disaster known to us....and yet, clearly, it's not that simple, because this family can't stay in their home, can't afford to fly to Canada, and can't seem to get enough help to get out.

This week we're watching someone we know live some of our worst nightmares. It hits far far far too close to home for comfort.

As close as we are to decannulation, I can't help but think "what if it was us" - and I know a lot of other parents thinking the same things right now. I can only hope we're all lucky enough to never find out first hand.

Wednesday, March 9, 2011

Dear blog...

...it's confession time.

In the last two weeks, I haven't checked my blood pressure or my blood sugar.

I've stopped taking my metformin (as planned), and I'm hoping that stops some of the crazy hunger issues (but not counting on it).

I haven't been to karate, taken a walk, or done much of anything physical, other than carrying my toddler (31.5 pounds a month ago, 28.5 now) out to the car, into doctors' offices, back to the car, and then back to his room.

I've eaten out more than I should.

You've all heard that we're supposed to put our own oxygen mask on before assisting others, right? Well, around here, all the self care I've managed in these 2 weeks has been sleeping and eating (because not eating leads to blood sugar instability, which leads to major issues), and taking my meds. And I haven't even been all that good with the eating bit, given the intersection of the schedule we're keeping right now and a need for dramatically more calories than I'm used to consuming.

Acorn has been to the pediatrician 5 times in the last 24 days, and to the ENT once. He's had some unknown minor respiratory bug, an ear/sinus infection, some sort of horrific stomach bug (we're down to diapers that smell like something died, which is an improvement over that plus vomiting - he's eating again, which is a plus, having lost fully 10% of his body weight in the last month), and now another ear infection. He's on round two of antibiotics, and he's had a shot of antibiotics too.

Leaf is still hanging in there. Heartbeat was good at last check, and I've felt a few tiny kicks a few times. My belly is growing, which is good - I am bigger now than I was with Acorn at this stage, which seems promising to me, given that Acorn was more than 2 weeks behind on growth when he was born.

I'm supposed to be looking for a nanny. The preschool thing is still somewhat iffy, and a nanny would mean that Acorn could go to speech preschool this fall, which he will love, because his SLP is one of the teachers (and they get amazing results). But the whole concept is overwhelming - shoot, I thought I was doing good to find the daycare center/preschool that I found. Hiring a housekeeper was stressful, and I don't have to trust my kid(s) to that person, just my laundry & dishes & toilets.

Anyway. I'm behind on sleep, behind on calories, and I have to set an alarm to make sure I leave early enough to get Acorn and get him to his psychologist's appointment. And I need to get some actual work done for work, so I guess I better get to it.

Thursday, March 3, 2011

stream of consciousness

If you could call this consciousness.....

I'm tired. So amazingly tired. I could take a day off and sleep, but that'd only fix things for the next few days, and we'd be right back here again.

I'm tired of being sick. Tired of sinus headaches.

Tired of snot.

Which, you know, is not going to be fixed by having another baby. But still. Not having to suction Acorn's trach, when his trach comes out, will be nice. He  appears to be over the sinus ick, but my husband was going back to the doctor again today, because a week of antibiotics haven't touched the color of his snot, and he still sounds like crap.

I think I'm having an existential crisis some days - I think I know what I want to be when I grow up, but I can't figure out how to get there from here, without losing important things like our house and our health insurance.

In case it isn't already obvious, health insurance is pretty darn important here.

Our nurses are driving me nuts. Lots of catty back-stabbing crap - I've almost sent people home in the last 2 weeks over drama that shouldn't be my problem. I sent an email to the nursing manager yesterday asking for some help with an across the board, "check your attitude at the door" warning; I don't want to fire anyone right now.

Have I mentioned that we have a plan for decannulation? This spring? probably within the next 8 weeks? No sense in trying to train a new nurse now.

It seems that the morning sickness is winding down somewhat, although the sinus headaches aren't helping. I'm at least eating normal amounts....as long as it's spread out, a bit here and a bit there, every hour through the day.

Somewhat fittingly, or at least typical of this life of mine, my stream of thought was interrupted by an emergency phone call from home.

Acorn started vomiting, and then nearly passed out - he went sheet white, then gray, then sort of floppy, though he never lost consciousness.

The upshot (other than a dozen bouts of vomiting in less than a dozen hours) is that his throat still looks raw, but his ears are better, so the throat thing is likely viral...and some of the virus strains running around right now come with vomiting for little ones.

For all our work to get to no feeding tube...tonight I think we'll be glad we have it, because all he wants to drink is milk, and he cannot keep milk down thus far. In an hour or so I need to go give him a little bit of pedialyte and see how it goes.

I am desperately hoping for a sound nights' sleep for all of us.

Wednesday, March 2, 2011

An energy work observation

I've never thought of myself as being very good at Reiki. Sure, I've done classes and attunements for I and II. Sure, I've practiced - on me, on Acorn, and even on Leaf. I've practiced on a few other friends, but they haven't been impressed. I've done energy work for a long time though - longer than I've known that Reiki existed - and it's always been useful, at least for me.

I've been doing a lot of the more generic sorts of energy work on myself lately - holding space for a very very boring high risk pregnancy takes work, and it helps a little with things like blood pressure and hip pain and muscle aches and such.

With Acorn, I always saw him as a glowing green ball. No matter how big he got, that's what he looked like.

With Leaf....it's different. Last night, I saw Leaf's chakras, clear as day - like a little string of glowing colored pearls.  It surprised me, because it's so different from my previous experience. I'm not really sure what to make of it.

Ah well. Just something I noticed.