Saturday, December 31, 2011

Books for Pagan Kids

I recently ran across a neat website, paganchildrensbooks.com - they're an online indie bookstore that specializes in, as their name says, books for Pagan children. While they don't have every book I've found for Pagan kids, they have a ton of books I'd never heard of, which is quite cool, along with games & other Pagan-y things.

It's nice not having to try to figure out what might be Pagan and what might be overtly Christian, which is frequently what happens when I'm looking for books for Acorn and Leaf online. I don't mind a few minor references here and there, but clearly we need opportunities to teach our kids our beliefs and values, because so much of the mainstream world (most caregivers, teachers, playgroups, and the like) is going to teach them about Christianity - at least, the generic version of it.

There still aren't many books for the 0-3 age range here, but I'm having a hard time finding those anywhere. Sigh.

*****

Obligatory disclaimer: affiliate link here, but the opinions are mine. I get money if you buy stuff following that link - given the amount I'm spending on gas to head to the hospital every day, every penny helps!

Wednesday, December 28, 2011

New Digs - Not So Wordless Wednesday

Oh, there's so much to say, and I haven't been at a real computer with a real keyboard in days, and I don't even know where to begin.

Last Friday (Christmas eve eve) at around 8 pm, I got a call from our hospital that the transfer for Leaf to a bigger hospital had been sorted out...and was happening within the hour. Thus began a whirlwind of helicopters and new doctors and nurses and new rules and new places and just...chaos.

At any rate,  we've moved to University of Michigan - CS Mott Children's Hospital. The hospital is brand new - they moved from the old hospital on December 4th. The hospital is nice - really nice - even the public bathrooms on the PICU floor are nice - showers are included in each unisex bath for parents who are staying with their kids:


The way they handle breastmilk makes me happy. The family lounge is well stocked and set up for people to actually use. The elevators talk, which Acorn thinks is the funniest thing ever. The cafe has decent food. Parking is inexpensive ($2/day max for patients and visitors with validated parking tickets). The views from most of the patient windows are stunning - here's ours:



Leaf got to ride in a helicopter, because they figured moving a ventilated patient from a PICU to a PICU was not something to do on surface streets. The flight crew brought her a pair of wings and a bear dressed in a UofM flight suit:



We're just waiting for a bed on the vent unit now, which they're hoping to have for us on Monday. We are also planning a meeting with the vent team for next week to get things lined up and a plan to get Leaf back home. Until then, we're just hanging out in our nifty high tech corner of one of the PICU bays:


At the rate we're going, I'll likely not be posting much the next few weeks. It's an hour drive one way, and while we're still in the PICU, Acorn and I will be out there most afternoons. We're debating how to handle things once we move to the floor, because I suspect Leaf will need more parental involvement. Our friend K has graciously offered crash space at her house, just a few minutes away, and has offered to come keep Acorn busy from time to time, since she works just a few blocks away in a research lab on campus. We still have to clean out her bedroom at home too, and take care of Acorn's appointments and a ton of paperwork for both kids, and getting to a computer that I can actually type on has been a heck of a challenge.

Hope you're having a wonderful holiday season!

Friday, December 23, 2011

Prompt: Winter Holidays and Family

From Pagan Blog Prompts:
This time of year, there are many different celebrations going on, most often ones that bring family close together. While it can be nice to see everyone again, it can also be stressful, when your family doesn't feel the same way about things as you do.

So, how do you deal with them? Do you simply avoid all talk of religion, even though the holidays can be very religious? Or perhaps it's just easier to avoid family all together....

If your family actually believes as you do, then perhaps these holiday gatherings aren't tough at all. Please, share with us how your Pagan winter family gathering go...

We generally try to avoid discussing religion no matter what the occasion for a family gathering - we have several older relatives who we've been told never to tell anything about anything.

What to do with the family is complicated here not so much by religion but by our kids, since most of our family gatherings are on the secular end of the holidays. We haven't been out of town to see my side of the family for a holiday since 2007, because we felt travel with Acorn was too difficult (and too likely to expose him to germs). We had been meaning to travel this year, but Leaf's stay in the PICU pretty much brought that to a halt. Whether we will travel with her now that she has a trach remains to be seen, and is dependent on her stability.

You'd think that after 11 years of marriage (and 15 years together) we'd be comfortable with each other's family's traditions ,but we're still working through that as well. What gifts people choose, what foods they have, how they plan for a holiday dinner - all of these things are things we're still trying to get the hang of.

And then we have to add in sorting out our own traditions...and it just makes it a complicated mess.

Thursday, December 22, 2011

Blessed Solstice, One and All

Happy Yule! Today is the solstice, and though our celebration here has been pretty minimal, I hope you've all had a great time.

For those not reading http://www.janetcallahan.com, I've posted over there this week on Zen and the Goddess, and on using magickal workings on one's inner critic - pop over there and check it out.

One of my projects for January, assuming life settles down finally, is to put together an ebook on planning family Sabbats. I'm also working on a submission for Pagan Writers Press's Pagan Birth Stories anthology.

Enjoy the rest of your holiday season - I'll be doing battle with hospitals, doctors, and the state's department of human services. No rest for the wicked, I guess.

Tuesday, December 20, 2011

Frame of Reference

Talking with others about how people see kids like mine - kids with substantial medical issues, medically fragile kids, complicated kids - it's been clear that part of the problem is just that the rest of the world has no frame of reference at all.

Here's the reason. People think in very simple terms - 3 boxes. You're either healthy, sort of sick (fever/cough/rash, lay around on the couch a couple days), or sick enough to be in the hospital. If you're sick enough to be in the hospital, you're there a couple days, and then home to lay around on the couch for a few days, and then you're healthy. That's how modern medicine works.

Kids like mine...well, let's talk about Leaf, because Acorn is getting closer to fitting that version of normal than he's ever been...close enough to fool people most days.
Leaf is in the hospital right now. She's been there going on 6 weeks, which is way longer than most people can wrap their heads around, much less the 5 1/2 months she was in the NICU, or the 9 1/2 months than Acorn was.

A freakin cold landed her in the hospital for 6 weeks and counting. Who goes to the hospital for a cold?

There's no going home and laying on the couch a few days in order to be normal for her after this either - we're coming home with 100 lbs of medical gear (and a car battery!) that will go wherever she goes.

No matter how happy, smiling, and normal she looks (other than the tube in her neck for breathing and the tube in her belly for eating), she's not healthy per se. She's at risk. She's likely to end up in the hospital for most illnesses. The ones she doesn't won't be a couple of days of chicken soup, they'll be the kinds of things most people go to the hospital for - oxygen (more oxygen than normal), nebulizers running round the clock, multiple meds....the only thing we can't do at home is an IV.

Even EMTs will stop and stare if we ever call 911. The best they can do is scoop us up and run to the hospital - their oxygen tank is bigger, which is about the only reason we'd call anyway. When Acorn had RSV, we called 911. The paramedic in the back with us told the hospital dispatcher that they were doing nothing for him - we'd already done more than they could think to do.

And none of that fits into one of those 3 little boxes up there.

So...schools, daycares, friends and family....all these people have a hard time knowing how to work with our kids, because they just don't get it - they can't find a way to categorize our kids if they don't fit into one of their three boxes.  So they pretend our kids fit (or shoehorn them in, like the old version of Cinderella where the sisters cut off their feet to fit in the slippers).

And that's where it fails. Our kids aren't going to fit into those boxes, and a one-size-fits-all solution isn't going to work for us.

Monday, December 19, 2011

Follow-up: Antsy Pants Review

A little over a year ago I wrote a bunch of reviews of training pants. One of them was for Antsy Pants. In the end, given that the plan was for Acorn to go to daycare and we weren't really sure how long it would take him to be diaper free, we went ahead and bought a dozen Antsy Pants.

We bought them new - at the time, buying a dozen new trainers was the same cost as buying used ones. We also bought the 4T size - Acorn measured just within the sizing for them, and we figured that way he could wear them as long as needed.

We've been using them for the last year, and I've got a few things I want to follow up on. We've used these in rotation when we're out of the house, and used them at daycare along with some pockets for the few months he was there. The last few months we've used them at night too - without nurses to change him in the middle of the night, we've been trying everything we can to keep from having to get up with him.

Sadly, he's actually refusing the potty completely right now, to the point of screaming if we try to set him on it....but he'll happily pee in a cup if it means not having to get out of the bath, so it's clearly an issue of he can do it, but he won't. Here's hoping the potty is more appealing in the new year.

On to the review:

First, we did have one snap go bad within the first couple months. Of course, I was in the hospital on bedrest at the time, and my husband never sent it in for repair, so I will eventually (in my copious spare time) have to replace the snap.

We notice that the stuffers they provide (microfiber towels) fit better in these 4Ts than the 2T sized ones. We've used them at night with the stuffer and a cotton doubler for all-night wear....when Acorn actually sleeps all night. That said, be prepared to change first thing, because when completely soaked, the side panels start to wick, and then you'll have wet jammies.

Acorn is now wearing mostly 3T clothes - he's about 37 or 38 inches tall and around 35 pounds, so pretty skinny. The 2T one we originally bought still fits him, though it's starting to be pushing it at night or if he poops. The overall fit of the 4Ts varies widely among the 12 diapers we have (well, 11, plus the one with the bad snap) - some fit just right, some are still loose. Also, the side panels have worn somewhat - and unevenly at that - so some of these are really loose on him, and will fall off while walking if he doesn't have pants on that will stay up. Since we frequently still let him run in just a shirt and diaper at home, this can be a problem.

Speaking of fit: these don't mix well with very runny poop. They've been okay for peanut butter consistency stuff, but a bout of diarreha in the hospital proved too much, and we had to change out the whole bed. The previous diaper (with even more liquid poo - it was so bad I didn't even try to get the snappi out of the goo to clean it) had been a prefold and cover, and the cover contained *all* of it without leaking.

There seems to be a learning curve, too, when getting the inner layer flap situated when you're putting these on the child - if the inner layers are exposed, that wicks onto pants (or runs out onto the floor). It might be better if you're pulling them on a standing child rather than putting them on like a regular diaper, but Acorn still won't let us use them that way. We had one nurse who *hated* these trainers because they always leaked for her, but in the last few months, the only leaks I've had have been cases where we were wearing them for the day and Acorn flooded the diaper - we would have (and have) had a leak in any diaper

On the plus side, he hasn't ever taken one of these off, even though it should be easy for him. Pockets with velcro, on the other hand, have been a problem lately in that respect.

One other thing I'll mention: our physical therapist loved these trainers, because she could really see how Acorn was moving his legs and hips.

Friday, December 16, 2011

On Birth and Privilege

I like the idea of various groups that are pushing for more natural childbirth options - more midwives, fewer hospitals, fewer c-sections.
I see something interesting happening though - while they stress that women should prepare for their births, prepare to go into battle if they have to deliver at a hospital, birth plan in hand.....they don't stress having a backup plan. And they're mostly militant that any other option besides what they're presenting is a bad idea.
Must be nice to have the education to know what the options are. And to have health care resources (like being in a state where midwives aren't outlawed). And to be healthy enough, and have a baby healthy enough, to remain relatively low risk (based on Acorn's birth, Leaf and I automatically risked out of any midwife practice - hospital or homebirth - in the area, and obviously that was a valid reason to be required to be followed by an OB). And it must be nice to have support people who support those choices. In some places it's also a matter of money - around here, a homebirth is about $3000, though some have sliding scales. If you're low income and on medicaid, at least here, they won't touch the midwife's bill, but they'll pay most of a hospital birth, so the system is flawed to begin with.

Now, it's probably just my perspective, having twice been through a birth that wasn't what I had in mind, but if knowledge is power, then these groups are nearly as bad as OBs who start scheduling c-sections at 35 weeks. Nearly 1 in 8 babies is born early. Complications happen. And when you've planned the perfect birth and get something else through no fault of your own or the birthing staff you're working with, you're setting up a dramatic emotional upheaval - even moreso if you have no idea what the risks really are when interventions start.

I know women who have left midwives and doctors over something as simple as "we want you to have a backup plan, based on your previous deliveries." I know people who've had complications crop up in a third or fourth pregnancy after no issues in their previous ones who were completely lost when they ended up in the hospital, whose birth experience wasn't all that bad, but for whom the emotional strain of things gone wrong left them crushed, alone, and unable to bond with their child.

Does a c-section interfere with bonding? Well, you wouldn't know it to see Acorn, though I can see how it can make it harder. But what about telling women how to cope with that if it happens? Nipple confusion and breastfeeding issues? Most NICU babies here get both bottle and breast if mom wants, with apparently little or no confusion, and more effort to help women to breastfeed post c-section or while on meds like magnesium would go a long way to eliminating the problems caused by the less than optimal birth. And so on and so forth - I have yet to find *any* group that talks about these things, or provides information to moms who do have anything other than a natural birth.

Yes, we all need choices. Yes, fewer interventions are better. But it seems to me that preaching that no interventions is the only way to go hurts women and babies.

Sunday, December 11, 2011

Trying Something New

I'm struggling a bit with where I want things to go with life, work, and the like. I know I have to go back to work at the end of my leave (at least part time, because OMG the cost of insurance will eat us alive, and if you haven't noticed, we have some medical bills around here that insurance covers, so it's kind of important). That said, I'm mostly enjoying being home with Acorn (and with Leaf when she was home)...and there are doctors and therapists to see, and just a lot to be done that doesn't agree with a full time working schedule. Not to mention that I need to feed my soul - I need to write and create and Circle with others on occasion and do those sorts of things that fill my cup so that I can take care of everyone else.

So....

I've been reading Goddess Leonie's blog for a while, and I love her energy and her approach to life. I love how she manifests things in her life. I've been drooling over her Creating My Goddess Year 2012 workbook too - and debating whether or not to get it because money is tight here, for a few more weeks at least, until insurance money starts rolling in (and hey, at least I got most of those ready to go out in Monday's mail, so I'm making progress, right?).  But I finally decided that it's less than $10, so I'm going for it.

I'm hoping to post some here about it, and likely will post more over on my "more me, less mom" blog, http://janetcallahan.com about how it goes as I work through it.

But first, I just have to say that it's as beautiful in person as the pictures on her website suggest:




Here's to 2012 being a little less complicated, eh?

Obligatory disclaimer: I bought myself the book - putting on my oxygen mask first, as most special needs moms are reminded from time to time. I want to join the Goddess Circle, but that will have to wait for insurance money to pay the bills...unless you all click on those affiliate links in this post and buy yourselves some of the lovely stuff Goddess Leonie does so that I get some spending money :)

Saturday, December 10, 2011

calendar, calendar, who's got the calendar?

Sigh.

No trach yet. Maybe Monday, if the surgeon can work us in, or else Tuesday, probably late, once the ENT comes back from his weekend trip. Or something....there have been so many scheduling issues with this ENT, I'd rather we just avoid him.


There are other things I want to say, but my brain is still uncaffeinated, and Acorn is not napping today, so there's a lot of chaos.

...things about supporting families in the hospital this time of year, and about how quickly it seems the year has gone, and how soon both Leaf & Acorn's birthdays will be. About the "war" on Christmas (and how hard it is being a non-Christian some days), and about writing and what I'm learning about myself during this leave of absence from work....

But I think it will all have to wait for another day.

Friday, December 9, 2011

An Overdue Update

It's been a crazy few weeks here.

Leaf is getting a trach - apparently tonight, based on the phone call I just got. We were planning for Thursday, then Saturday, and now today. Ahhhh!

Then we're probably transferring about an hour and a half away to a larger hospital to have her PDA surgically closed.

And then hopefully home to try to find our groove again, this time with more appointments to shove in the same amount of time.

*****

Acorn has not slept a full night since his hospital stay. We're all exhausted.

He's also on a potty strike....unless it involves running around naked and peeing on the stairs, which makes them slippery. At least he wasn't hurt falling down them.

We're waiting for a spot to have him evaluated for a speaking device. I'm hoping it goes well; we're all terribly frustrated with his limited communication skills

*****

All in all, this stay at home mom thing is mostly working. I'm less stressed, the house isn't a total disaster, and no one has died. Here's to the next 4 1/2 months.

Monday, December 5, 2011

Pagan kids out in the world

There are reports of a boy in Georgia being bullied by his teacher for being Pagan.  This sort of thing is something I worry about from time to time when it comes to my children. Not just at school, but at doctors' offices and therapy facilities, scouts and playgroups, in the hospitals we've stayed in and with the nurses Acorn had.

I like to think it won't happen here - a small-ish city in the suburbs, not in the Bible belt (though there are about 4 dozen churches in town), which boasts about its diversity. A place with a mosque, a Hindu temple, several synagogues, and Christian churches of all flavors (and in a number of languages). A place where within 5 miles, I can find several Asian grocers, a couple of Indian ones, a Pakistani grocer, a Mexican grocer, a Polish market, and a couple of Halal (Muslim) butcher shops which also sell other imported goods. A strip mall up the road boasts an Italian deli, a Jewish bakery, and Middle Eastern, Thai, and Greek restaurants.

And yet... our newly elected mayor is making the news for posting anti-gay statements on facebook.

Kinda makes you wonder whether we'll ever figure out how to all get along, doesn't it?

Saturday, December 3, 2011

21 Days of Yule


Today I'm a guest poster over on The Pagan Household talking about Yuletide Traditons - go read and enjoy, and watch for the other posts in the 21 Days of Yule.

Tuesday, November 29, 2011

Little Bits and Bobs

It's been busy here. I'm still catching up on laundry from Acorn's week in the hospital and dishes from Thanksgiving.

Leaf is still in the PICU and still vented. We're hoping that we're finally making progress in getting her off the vent, but it's really all up to her.

Acorn is home from the hospital as well, and back to his normal self, other than the return of nightmares. It's been a long time since that was a multiple times a night every night thing, and I don't really know how to help him. He's come up with a handful of new words this week though, and has been more actively signing things since his hospital stay (though sometimes he's just signing "yes" when he means "I want that thing over there"

I've been trying to spend my evenings in the PICU writing. Some days it works better than others - but there are projects in the works and things that need to get done. At the very least, it's time to wind down from being "on" all day with Acorn. We're both adjusting, and it's a process...we're not comfortable with it yet, but we'll get there.

I have nothing really deep to say right now - just too darn tired after a night of being up a fair portion of the night with Acorn when he's having nightmares. But I do have a post already written for the 21 days of Yule over at http://thepaganhousehold.com, so be on the look out for that in December.

Monday, November 21, 2011

Worlds Apart

I'm sitting here in Leaf's room tonight, listening to the radio and having a bit of time to wind down after a particularly whiney day with Acorn (and no nap, so no break in the whines all day). It's calm here - quiet; the soft click-huff of the vent makes a rhythmic counterpoint to the easy listening station playing over the hospital's TV.  The furniture is at least as comfortable as Starbucks (which is to say, not very, but I am starting to think that the rocking chair might work better if I use the chair I'm sitting in as an ottoman).

Most people's reaction to Leaf's illness is shock and horror. They assume we must be falling apart, sobbing in the corner or something. Some of them, hearing the word ventilator, assume this is a death watch.

Others are confused by our child care arrangements - namely, they are horrified that my husband is at work every day, and that Acorn and I are mostly going about our normal routine (or what there is of it - we've had less than a week at home to find our rhythm too, and it's just not there yet). But really, there's nothing to be done here, and no one that Acorn is comfortable staying with, and while taking a day or two off for an acute situation is reasonable, there's no company in the world that gives enough days to sit here for a week or two (we'll be at two weeks Thursday), or a month or more.

It's hard to get across to people that we really *are* at a point where this is just a normal day. Ventilators aren't scary - they are wonderful bits of modern technology that keep my kids alive. We had one at home until just recently, even. I have a resuscitation bag and I know how to use it. I know what all of the meds hanging on Leaf's IV pole do; I have given every breathing treatment they're giving and I know what they do. I understand the basics of the cardiology report, because we've read dozens of them before and seen symptoms and results first hand on a daily basis for years.

Some people think hospital stays are the worst thing ever. We've spent more than a third of our last 3 1/2 years with a child in the NICU - 15 months total. We've got another almost 2 months of hospital stays total for our children, and almost 6 weeks for me. The hospital (this hospital) is literally our second home - we spend more time here than most people spend at their cabins up north (or their vacation homes, for those who aren't here in Michigan).

Some people seem to think that I must need someone to talk to.  No offense, but I have people - I have a therapist whom I'm paying a lot of money to...and she thinks I'm just fine. I have other special needs parents who understand, who've been here, who know.....who I can give the whole story to without stopping to translate medical-speak into regular-people terms.

I dunno. Some days I think we're just so far from other parents - on a different planet maybe - that having even a regular conversation is hard.

Wednesday, November 16, 2011

Does the hospital give multi-child discounts?

Last night we took Acorn in to the ER, wheezing and coughing even with his breathing treatments. He's staying there again tonight, with hopes to go home tomorrow.

Leaf is just down the hall and around the corner in the PICU. She's still on a ventilator, still sedated, but they're slowly weanng her vent settings.

Too bad they couldn't throw them both in the same room. I moved Leaf's altar back into her room over the weekend (it hadn't all found a home yet as we were still unpacking from moving out of the NICU), but we only have one altar setup for the hospital, and I have two kids there, in two separate rooms.

Oddly, there was already a chaplain in Leaf's room when I arrived the morning she was intubated. She was not yet intubated when I walked in, and in fact I had only stepped off the elevator. I wonder how they know when to show up?

We're finding the regular pediatrics floor somewhat interesting. People don't know us (well, nurses don't know us - it's still mostly the same respiratory therapists that we've worked with since Acorn was born). There's dismay at all the things that have to be done in particular ways for Acorn - they want a compliant kid who they can do anything they want done on command. I guess the'll either learn, or not.

When I said I wanted my family together, I didn't mean in the hospital....

Sunday, November 13, 2011

This PICU stuff sucks

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain


--Frank Herbert, Dune

It has been a long time since I've truely feared anything. Several years back, the request I finally brought to Big Dark & Scary when I thought I was ready for her was, "I cannot continue to live in fear of so many things, please help me."  The interesting, and somewhat unexpected, result of that discussion, was that I became aware of what things are worth fearing, which has the side effect of putting me back in control of the fear.

The possibilities here with Leaf? The ways this could go so terribly wrong?

Yeah. Those count as being worth fearing.

But not worth drowning in the fear, which is where I was yesterday. Today is marginally better on that front, even after a 3 am phone call letting me know that they drug the attending physician out of his bed at home to come consult after things again got worse yet again.

I've always liked the Litany Against Fear - it may be the only part of Dune I liked, because I really wasn't fond of any of the Dune novels when I read them in high school, and that's saying a lot for me, given my voracious reading of everything, but particularly sci-fi and fantasy.

And in terms of being mindful and present....it's a good reminder that I can be afraid without losing myself in the fear. That in the end, the fear will pass by, and I'll still be standing here, no matter what happens.

Saturday, November 12, 2011

And Back Again

Leaf wasn't feeling well Wednesday, so we went to the pediatrician. Everyone felt it was just a minor virus, and we could ride it out at home; she was cranky and feverish but otherwise unfazed.

Thursday morning she had a cough, but was in a much better mood. Thursday evening, she was getting progressively congested, so we ran some albuterol, called the pediatrician, and headed to the ER, fully expecting to be admitted for observation.

Friday was calm, but still with a lot of coughing and nebulizers.

Saturday morning, they called to say that she was being put on CPAP, and that they'd put an IV in to give IV steroids instead of oral, and to switch her reflux meds to an IV. We finished up breakfast and I headed that way within an hour of the first call, intending to hang out for the morning and comfort her...

...and my phone rang as I stepped off the 5th floor elevator, with news that they were going to intubate because CPAP wasn't working. She'd been just fine overnight, and things had gone downhill over a 2 hour period from "just fine" to "not good."

So, the good news is I was there. I saw her without the vent, and saw how much more comfortable she is with it. I'm not happy about it, but this is exactly why she was in the PICU to begin with - we knew that if she ran out of reserves, or her illness got worse, things would get messy quickly. We can handle a lot at home, but definitely not intubation.

Have I mentioned our life often feels like an episode of House?  This PICU stay is no different.

Her first viral panel was inconclusive - not a big enough sample, which is hard to believe.

Her second panel came back clean....which leaves us all scratching our heads, because everyone was *sure* she had RSV (hey, at least it's not RSV!).  The reflux makes us all think she might have aspirated, but then why would she show no signs of pneumonia from the first sign of sickness Wednesday until just now? Additionally, today she stopped peeing, which makes no sense at all, but there was plenty in her bladder.

So....the plan this afternoon was to take blood, urine (via catheter) and secretions they're suctioning from her lungs and culture them to see what comes up. At this point, they have no real clue what the culpret is, and so we wait.

This is not the quiet week at home we were supposed to be having.

Wednesday, November 9, 2011

An update from the home front

We did, in fact, make it home on Saturday, though not without some bumps in the road. Who knew that the 2 most common meds preemies leave the NICU with are not available at normal pharmacies? And who would ever think that the hospital's internal pharmacy can't look up insurance card detail in the hospital's system for discharge meds?

Anyway, we're here. We're struggling with reflux, and with a stomach bug that Acorn brought home from somewhere (likely daycare) and shared. Leaf seemed relatively unfazed, but today she's amazingly cranky and getting moreso by the hour. Our most recent feeding appears to be the first in nearly 36 hours that she hasn't spit up (though saying that may jinx me). We started reflux meds yesterday, a very mild one, and I'm hoping it gives us a bit of breathing room.

Leaf often sleeps with her eyes partly open, which is unnerving. Other than the last few hours, she's happy, smiling, and what normal people would call a "good baby" - she doesn't cry much, she sleeps well, she's happy to be held or not, she's great in the car as long as it's moving. In special needs terms, she appears to be socially appropriate, and other than her severely flat head and her torticollis (stiff neck), she looks to me to be on schedule for her adjusted age. The therapists will be here Friday and Sunday to evaluate her for in-home therapy for the winter, and it's our two favorites from Acorn's in-home therapy days, who we will be happy to see again, and who I'm sure will enjoy seeing Acorn again.

We are no where close to finding our rhythm - and we're adding more appointments every time the phone rings. Acorn's last day at daycare is Friday, so that'll add another layer of chaos too. But we'll get there.

...at least, I hope so....

Monday, October 31, 2011

Samhain Blessings

This is not the year I have to explain death to Acorn, though I know that time will come.

It is, however, a night for remebering the beloved dead, and though Acorn doesn't know (and never knew) the people I hold in my heart, I'll tell him anyway.

  • A dear friend lost just a week after Leaf's birth to a complication of her own pregnancy.
  • Aunt E, the woman who inspired my spiritual journey, even though her path and mine were not meant to be the same.
  • Grandpa H, who inspired my love of all things mechanical
  • Granny H, who fed my love of music
  • Trach friends who have passed this year, like D, who's adoption was finalized only hours before he passed.

And among the honored dead this year, I hold space in my heart for:

  • those lost in the earthquake in Japan and it's aftermath, particularly those near the nuclear plants. My first engineering job was at a similar plant, and I know the sacrifice they make.
  • soldiers everywhere, no matter what side of the battle they're on. I have good friends in Afghanistan right now; I have family members who have served, and I know the price they face.
Blessings to you all, no matter your faith. If you're out and about tonight, be safe.

Sunday, October 30, 2011

Almost Poetic

I've heard it said
that attachment comes right after birth
that baby needs a mother's touch
that baby needs to be at breast
that interventions should wait
until that bond is formed
that any issue later on
must have been because that bond was broken.

I don't think we give babies enough credit.

If they're right
my kids are screwed
whisked away early
from an emergency surgical exit
with nearly every intervention known to man
not touched by me until days later,
not put to breast until months later.

I think they're wrong.

I'm looking into big hazel eyes
that are looking back at me
checking between catnaps
to make sure I'm still there.
Her smiles when I arrive,
when she hears my voice, are proof enough.
And even when she was tiny,
being in my arms meant fewer alarms.

I'm not saying it's ideal this way.
Just that some let medicine get in the way
of what our brain and heart know are true:
that babies are meant to be attached to their mothers
and we shouldn't let an imperfect start
be an excuse for every difficulty.

Wednesday, October 26, 2011

A scary triggery day

The day before Acorn turned 5 months old, he went to surgery for his trach and g-tube:

Acorn post surgery

They told us it'd be quick - less than an hour, and that we'd have him off the ventilator by the end of the week. He reacted poorly to the medication they gave to sedate him, so he ended up being sedated longer as they weaned him...and then it took a year to get him off the vent.

Yesterday, the day Leaf turned 5 months old, she had surgery to put in her g-tube:

Leaf, post surgery
They told us it'd be an hour (longer than Acorn's surgery to do 2 things), and that they'd extubate her before sending her back up to the NICU.  They failed extubation twice, so they sent her back to the NICU on a ventilator. They gave her the same sedative they'd given Acorn, and it had put her out too much to make the second attempt at extubation a go. They were hopeful that they'd get her off the vent later that day.

It all sounded too familiar. It all looked too familiar.

The good news (as evidenced by the photo above) is that they *did* get her extubated just a couple hours after she went back upstairs, with nurses and doctors who knew her and knew what to expect from her, and just a few hours later was back to baseline.

Of course, I missed that part where things went better. I was with Acorn, off to see the ENT about a suspected infection in his trach incision, which turned out to be the internal stitches working their way out of his skin (which still carries a risk of infection because the blisters keep popping open), which also shouldn't happen.

Still, there are days that this stuff is just too damn hard.

Tuesday, October 25, 2011

The Journey of a Thousand Miles

Lao-Tzu said that the journey of a thousand miles begins with a single step. We're embarking on a pretty monumental journey here at Our Little Acorn, and I invite you too follow along.

I am taking a 6 month sabbatical leave from work (unpaid), to stay home and take care of Acorn and Leaf. I have less than two full weeks of work left right now.  Even as I write it, it sounds surreal. There's so much priviledge tied up in that statement that it scares me - I can afford to walk away from my job, for Pete's sake!

Leaf is getting a feeding tube so she can come home. She eats, but wears out before she finishes any given feeding. She breastfeeds better than she bottle feeds (yay mama milk!) and so we'll be working on that a lot. She's still on oxygen too - more than they'd like, but after Acorn, we're all sure we'll be just fine.

Acorn is leaving daycare. We can't risk the germs this winter. It feels awful to pull him now that he's finally getting the hang of it, but there's nothing to be done for it. We'll be out to some carefully screened low-germ playdates each week, and we'll be doing "homeschool" preschool type things at home too. He's recently discovered coloring, so I'm hoping that will make for some fun afternoons with crayons and markers and paint.

Needless to say, there are some dramatic lifestyle changes involved too. We're losing more than half of our income, and will be paying out of pocket for health insurance (and we can't go without - the kids have too many bills, and won't qualify for any of the low-cost plans; Leaf loses medicaid in May and Acorn in July). We'll have to budget much much better. We'll be eating out less and spending our pennies carefully, trying not to dip into savings during this time. We'll be debt free other than our house, thanks to an AFLAC policy that pays for each day in the hospital....and between Leaf and I, we've had a lot of those days this year. We have 2 cars, one new and the other nearly new, that are in good working condition. We're starting out with a well stocked pantry (if I make it to costco next weekend).  My kids get WIC because they're on medicaid.

And, if things work out that way, I can theoretically return to work this spring without issue (technically, they don't have to hold my job, but since I'm covering 2 people's worth of work, and have been for over a year because they can't fill the other spot, the likelihood of not getting *this* job back, much less any job here at the company, is miniscule).

We're amazingly blessed to have this all work out. When we first started talking about it, I asked my Gods to help pave the way - to make it work out without us losing our house or going bankrupt or anything else awful happening, and it appears that it's all going to come together.

I'm sure the first week will be rough - just me and Leaf. The week after will not be much better - me, Leaf, and Acorn, trying to find a rhythm that works for us. But I'm also hoping to be able to document and write and photograph and bring you along on our journey.

Wish us luck!

Wednesday, October 19, 2011

ch-ch-ch-changes

Welcome to those of you who are following the Real Witches of Halloween Blog Tour! I hope you're enjoying all the blogs that are being spotlighted this month.  (I know you all are stopping by on Friday, but it's likely I won't get another post in by then)

*****

As seems to be the ongoing theme here lately, changes are afoot again. It's an interesting time of year to be starting new things, but then, it's also going to be the end of some things too, so I suppose it's all good.

We have a plan (but not a date yet) to get Leaf home. We have a plan (but no final details) for one of us (me) to be home with her and Acorn - kind of a shame, in some respects, since it seems Acorn is *finally* mostly ok with daycare. I asked my Goddesses for some help making this all come together, and it's working out in unexpected ways.

We will be spending the winter mostly in hibernation, trying to avoid germs. We've done it before; it's no fun. And it will be less fun with an on-the-go 3 year old. But it will leave time for more seasonal activities and work on Acorn's therapy homework, so I think it will be good.

Acorn had his trach stoma closed last week - literally and figuratively closing the door on our trach journey. It seems to be healing ok, but we need another week or so before we can really let him loose in the water without at least some tegaderm over the incision.

Leaf's big challenge right now is eating - she has no respiratory reserves to speak of, so eating leaves her out of breath, which wears her out, which makes it hard to stay awake to eat. She's better at breastfeeding than bottles, so being
able to work on it at our own pace will be a relief.

Mostly, I'm looking forward to having our family all under one roof. I know it'll be less stressful for us all.

Tuesday, October 11, 2011

One of His Favorite Places

Acorn loves escalators - it took quite a bit of practice to get him accustomed to doing them himself rather than us carrying him, but once he got over his initial fear of the moving steps, he was in love. He could spend an hour going around in circles - up one, and back down the one next to it.

One of his other favorite things is water. Besides all the normal water things, he loves fountains. He's learned to throw pennies in, and I think most of the time, he'd really rather just climb straight into the water rather than sit on the sides.

The other day when he was at home and not feeling well, the afternoon was going better than the morning had, so we went to a nearby high-end shopping mall. This place is so big, there are 3 floors on one side of the street, and 2 on the other, with an enclosed walkway over the 8 lane road...and the walkway includes moving sidewalks. They've got several fountains and reflecting pools in the mall, but the neatest one is a computer controlled fountain that spits water straight up out of jets in various patterns.

So...we went in the 3rd floor. We went down 2 escalators. We spent a good while watching the various fountains. We went back up a floor, and across the walkway, then down in a glass elevator to see the fancy fountain, where Acorn sat for nearly half an hour, just watching. We then rode the escalators there a few times, went back up in the elevator, back across the walkway, and then up one more escalator to go back to our car.

Acorn had the time of his life.

For a kid who was only feeling so-so, it was a lot of walking, but the rest breaks to watch the water were well worth it.

Just another opportunity to remember to be fully present and mindful all the time...

Monday, October 10, 2011

Worst Mom Award

I've spent the last few days feeling like the worst mom ever.

Early last week, Acorn got hand foot and mouth disease from daycare. We've been paranoid about handwashing since he started there, but Leaf got it anyway.

Acorn's been cranky, and it seems like the rash is painful at times. He's had trouble sleeping. But other than that, no real issues.

Leaf, on the other hand, seems extra fussy....and won't eat orally (or at least, wouldn't until Saturday morning). Which is a problem, since we've only been working on it a couple of weeks and she was just starting to get the hang of it.

Now, HFM is extremely contagious - so contagious that doctors don't generally recommend keeping kids out of daycare when diagnosed, because they assume the other kids have already been exposed. But I still feel like it's my fault all around that my kids are sick.

I was ambivalent about daycare to begin with. I wanted a nanny, and then was unsuccessful at finding one, and my spouse was unhappy about the cost of a nanny. I was the mom who went back to work when Acorn was in the NICU because we needed insurance and we needed the money.....and I was the mom who wasn't willing to give up things like music lessons for my kids because there wasn't money (which is what happened when I was a kid). So it's my fault he needed care to begin with.

I also felt like there's something we missed in washing or sterilizing or something that resulted in transferring germs from Acorn to Leaf, since he generally stays in his stroller when we visit, and since we all scrub when we enter the NICU.

After Acorn's birth, I needed to go back to work. I needed the mental stability of having responsibilities other than the NICU - I needed that anchor in reality. I was depressed, and running away from my issues (namely, the NICU) seemed like a good idea.

This time around, things are eerily similar at the hospital, but dramatically different at home. Work isn't a helpful anchor, it's a distraction in the way of doing what is important. And that makes a heck of a lot of difference in the way it feels to leave Acorn in someone else's care, much less having to leave Leaf in someone's care when she leaves the NICU.

I'm sure both Acorn and Leaf will be feeling better in a few days - their rashes are already improving, and Acorn is going back to daycare this afternoon. Leaf and I had our best nursing session ever yesterday morning. 

But right now, it doesn't leave me feeling any better about heading back to work today.

Saturday, October 8, 2011

My Xtracycle

Last summer (ie, 2010), we started talking about getting Acorn out on bike rides. He was still on oxygen at the time, which was a problem. We could put him in a bike trailer, but he couldn't talk, so we were concerned about our ability to know if there was a problem with him so far back from the rider. I know parents of typical toddlers and preschoolers who have the same concerns about trailers, so it didn't seem too far fetched to worry that it wasn't going to work.
We did a lot of talking and a lot of investigating, and finally settled on buying an Xtracycle Free Radical conversion kit. This turns a regular bicycle into a long wheel base cargo bike. They have lots of interesting accessories like saddle bags and kid seats. So, here's what we did:


Took the rear wheel off my Schwinn:


Unpacked the Free Radical Kit:


Assembled it to the bike:



Put the wheel back on:


Added deck and saddle bags:



And finally, installed PeaPod seat:


Of course, by the time we made a decision, ordered it, and got it built, Acorn was off oxygen, but at the rate we're going, Leaf will be on oxygen for a while anyway and we'll use it for her instead. Besides, this gives us the opportunity to go grocery shopping for small quantities of groceries too - the store is only 2 miles away; why take a whole car for just a couple of bags?

I still don't have an action shot - Acorn is pretty anti-helmet, and wouldn't sit in the PeaPod with the
front crossbar installed, so it's been a few weeks of work to get him to sit in it. I think that now if we can get him in it, get his helmet on, and get moving fairly quickly, it'll work out ok - once we're moving, he's pretty pleased. I'm definitely hoping to get some biking in yet this fall, assuming the weather cooperates.

Thursday, October 6, 2011

Sensory Bins

So many things to write about, so little time - between work and NICU and daycare woes, it's challenging finding time to sleep! There are more changes afoot here, which I'll say more about when the plan is more clear, but for now, we're just muddling along. I still have to write about finally (after all the insanity this summer) getting Acorn out on the bike, and about pumping and breastfeeding, and about daycare too. Acorn is getting the stoma (hole) from his trach sewn shut next week, so maybe there will be time to write then.

I'm home with Acorn today - he's got Hand, Foot, and Mouth Disease. The pediatrician said he could go back to daycare as long as he was fever free (and since we know he got it there because half the class had it 2 weeks ago, that doesn't bother me), but the daycare said he couldn't come back if he was getting new spots....and with this morning's level of crankiness, there was no sense in even trying it.

Our homeschooling totschool/preschool work ground to a halt without the support of nurses over the last year, but there are still things I want to do with Acorn (and with Leaf),  so we're just going to move forward as time permits.

Over nap time, I put together our first sensory bin (and this post!). I'm hoping to do a theme twice a month for now, to give Acorn something interesting to do other than the TV - he's totally fixated on it, largely because of nurses who played videos instead of doing other things we'd offered up.

Our theme for the rest of October is Halloween?Samhain.

First, since I'm working on a budget, I started with a dish pan I've owned for more than a decade, and the last of our white rice (about 6 cups; we could use more for this in the future - I see a Costco run in my future).


I debated buying birdseed for this, but I'm thinking I'll do that for next month. I also thought about making colored rice, but I can't help but think that one of these days I'm going to want to put 2 colors together, and then what will I do, sort through them all grain by grain to separate the colors again?


I then got all of our little bits and pieces together for this theme:


There's also a pair of big tweezers going in here, and possibly orange and black pompoms if I can remember where I hid them. 

Finally, I threw it all together:


Not bad for a first attempt done with almost no planning, don't you think?

Saturday, October 1, 2011

Take Time to Smell the Roses


Being a parent, I find that my children are one of the best reminders about being present in the moment - not just because they tend to be better behaved when I'm authentically present with them, but because they are absolutely rooted in the moment.

This week I was reminded of how much we miss though, and how important it is to try to stay mindful.

We went to a nearby downtown area to go to a specific shop. It's only been in recent months that Acorn was capable of walking well enough, far enough, to take him to places like this - particularly without a stroller. Because of that, he's fascinated by city streets, sidewalks, and the things that go with them.

My husband is usually quick to move Acorn along when we're trying to get somewhere, but on this particular day, Acorn won out - walking back to the car, he was so fascinated by the flowers planted along side one business, he sat down in the middle of the sidewalk and refused to move.

He looked closely at the flowers, leaning over to practically put his nose on them. He touched them - a big deal, since the sensory issues involved in playing outside have been quite a struggle for him, but he's now at least exploring flowers and evergreens and tree bark; he'll walk across grass barefoot, when at the beginning of the summer he wouldn't walk on grass in shoes.

And we waited for what felt like both an eternity and only an instant, while he explored the flowers. Eventually he decided he was willing to get up and walk the last little bit to the car, and we did just that.

Thursday, September 15, 2011

Teaching Pagan Children

I've been reading Pagan Blog Prompts for a while now, but I'm not sure I've ever actually blogged one of them....but I think I'd like to change that, and try to hit their topics more often.

One of this month's prompts is titled Teaching Your Children - We're asked,

What do you teach your children regarding your beliefs?

Do you chose to home-school your children? Why? How do you think this will affect them as they grow up?

Right now, Acorn is small. Teaching is simple - we thank the sun for his light, the sky for being so blue or bringing us rain, the trees for giving us shade. Acorn has decided to hug and pat trees - interesting, since our maple trees are fairly rough, and textures are usually a challenge for him. He likes to sit outside and watch nature, soaking it up.

Leaf is even smaller. I sing Pagan chants along with Baa Baa Black Sheep in the evenings. She's never been out of her little room at the hospital, and there will be a whole world to explore once she comes home.

I've started trying to get Acorn to help with my altar each full moon, but he's really more interested in throwing the crystals to see if they bounce like his various balls. Depending on the things on the altar, he likes to rearrange them for me from time to time.

I do energy work on/with both children. I started that before either of them were born.

I'm sure we'll do more when they're older, but right now, everything is pretty magical from their perspective, you know?


Neither of my children is old enough for "real" school. At this time, the plan is to go to public school....but both my husband and I had some less than stellar experiences in school, and we'll be monitoring situations closely. If things are not working, we will find some other option. We know that any schooling option will require us to be very actively involved for it to work in the long run, and we're prepared to do that. I suspect the fact that education is important to us is far more of an impact on our kids than where or how they're schooled.

Monday, September 5, 2011

Rites of Passage

I've been thinking today that part of the general discontent that has come with Acorn having no trach is that it was so darn anti-climactic. Nothing in this parenting journey of ours has been all that typical, and this entry into "normal" life should have come with a more defined transistion.

Normal people have a full term pregnancy that goes through certain phases, they have their baby and come home, and life goes on - though obviously, there's a tranistion to be made, it's a socially expected transition, one that everyone knows to expect. Kids have birthdays, they start school, everyone celebrates these things.

We had Acorn (and Leaf) before many people realized I was pregnant. Instead of coming home with him, he stayed in the hospital, and I went back to work. We didn't have a baby shower; our "welcome home" party was his first birthday (and it was not all that enjoyable, really). We've counted up hundreds of inchstones, and a few big milestones, but no one really celebrates them but us. Big changes, all around, rolled up into this one gateway event, but no real celebration of it.

I think what we need is some sort of rite of passage ceremony. I'm not sure what, yet - the various texts I have obviously don't talk about a decannulation ceremony. In fact, most of them don't talk about anything other than the typical birth, coming of age, marriage, and death ceremonies, so I guess some creativity is in order.

Thursday, September 1, 2011

And We Spiral Back Around Again

This blog is not quite 2 years old - September 23 2009 was my first post. The very next day, I posted about bedtime routines and wanting to bring more Pagan influences into Acorn's life...and here we are, 2 years later, and I'm still thinking about the same things, and not making a lot of progress

Bedtime has always been a bit chaotic. We've got something of a routine down, but the past few months everything's been in turmoil, and it's gotten a bit more chaotic. I'm hoping now that we don't have nurses to make it a little more standardized and to include prayers.

Acorn likes sitting outside and just watching things. When he and I are out, we talk (well, I talk, he listens) about thanking the trees for having so many nice leaves to give us shade, and thanking the sun for its warm light, and the clouds for rain, and the grass for being soft under our feet. He's interested in trees, and pats them gently, which is terribly cute, given his limited "pretend play" skills and his issues with textures.

The texture thing must be getting better though - he went barefoot in the grass this week, all the way from the front of the house, and around to his swingset in the back.

There are no Pagan parenting groups here locally. Few people to bounce ideas off of in person, few other kids for him to hang out with who even come close to sharing our faith - most of the Pagan parents I know are online. It's one of the few situations where I really wish there was a community here that we were comfortable being a part of.

Wednesday, August 31, 2011

The End of An Era

Today is our last day of nursing (though our primary nurse has offered to sit with Acorn once in a while, and we've made arrangements with her to do so once a month so we can get out of the house). When Nurse J leaves at 7 am tomorrow, we're done for good. It's rather bittersweet - yeah, I want them gone. I want my house back. But there are all these little details.... nebulizer treatments and one medication that we almost never give. Night time wakings. Child care arrangements. At home arrangements for when he's sick. Lots of little things that normal families do all the time. The list is a little overwhelming, but it should be ok. There's no trach to suction. No g-tube to come out in the middle of the night. No need to turn the pulse ox on at all, really. Thursday, Acorn starts daycare. By himself. When we did daycare earlier this year, it took a whole duffle bag to be prepared for all possibilities, plus a bag for his cloth diapers. Now we're looking at just packing him a kid-sized backpack, plus his bag of diapers. And here we thought getting rid of the ventilator meant less stuff to carry.

Friday, August 26, 2011

What constitutes child friendly?

Recently, Acorn and I spent a little bit of time at our local Pagan Pride Day.

Now, I'll admit to being biased - the event has had several different organizers over the years, and none have seemed all that organized, but this year was particularly chaotic. There was still no published schedule the day of the event; presenters were invited to email or call to find out their time slots, and as a former (and probably future) presenter, that would drive me batty. There's no published vendor list (and I'm betting, based on what I saw, that few, if any, vendors made their table fees), so those folks aren't getting any continuing advertising for their efforts. The combination makes me a bit wary of future involvement - running an event like this isn't an easy task, but these seem to be basic things that ought to be a priority for a festival.

At any rate, I guess you could say this event was child friendly, because it was in a public park, and the playscape was the focal point for the kids. We didn't stay all day, but other than this, I saw no evidence of anything that would interest children, other than the vendor with tumbled stones (who, of course, caught Acorn's attention - she had carnelian, and Acorn is obsessed with all things orange).

I've been approached about running kids activities at other local events. Almost no one wants to do them, and my previous involvement in SpiralScouts marks me around here as someone who does "kid things." And right now, I'm not really up to doing anything....but quite frankly, I do more than just kid things, and I don't want to be stuck dealing with other people's kids all. freaking. day. - especially at a festival, where I'd like to have an opportunity to enrich myself as well as others.

I feel like I've complained about this before, and I probably have. I just don't know where I put the various rants :)

One festival I attend regularly has a kids & families programming track, but the quality and age options vary greatly, and parents frequently seem to feel it's meant as a babysitting service. Many places don't even have that though - kids are discouraged from attending, or there's nothing for them to do at all, so parents are stuck figuring it out themselves.

Would it be so hard to have a kids' area with activities? Little mini workshops?  Are there any festivals out there that do an amazing job of putting together stuff for kids to do? What would an awesome kids' program look like at a festival?

Wednesday, August 24, 2011

Wordless Wednesday: Naked Neck Edition

ok, almost naked - that gauze & tape is in the way of nakedness.
Taken in the hospital's "Children's Garden Library," which serves as part of the play room


Tuesday, August 23, 2011

And it's done

Acorn has no trach - almost 12 hours without now. Took it out, put gauze and a piece of tape over it, and basically that's it, just sitting around now to monitor, and to wait for the stoma to close a bit. He doesn't seem to notice, but he does notice the nurses and doctors and residents and med students.

My spouse has Acorn duty tonight and tomorrow - I'm going to work. Then I have my turn staying at the hospital tomorrow night and all day Thursday.

Can I just say it's a little unnerving to be sleeping alone? I mean, I used to live alone. But it's been more than a decade since I regularly slept without anyone else in the house. And the last 2 1/2 years, there's usually been someone awake all night here, which just makes it more odd to me.

I think I slept alone one night this past spring when Acorn was in the hospital, but I didn't make it home until like 2 am after a marathon of pediatrician, ER, and hospital admission, so it wasn't sleep so much as falling over in exhaustion. Before that....it was the car wreck my husband was in (car vs. pedestrian, and he was the pedestrian) a few weeks before Acorn got his trach. Before that....I think my husband went on a business trip about 5 years ago.

Meh. I should pump and sleep, because it's already been a long week. g'night all.

Thursday, August 18, 2011

Maybe I'm Just Strange

Some of you probably read that title and thought, "no, really? You're only now realizing that?"

Our news this week is that we have a tentative date for Acorn's decannulation: next Tuesday.

When mentioned to a friend, she said, "oh, I bet you're just so excited!"

But I'm not.

Really, it's just another procedure - and a minor and anticlimactic one at that, since we check into the PICU, take his trach out just like any other trach change (other than not putting a new one in) and hang out there for a couple of days to be sure no problems develop.

More than that though, I think my lack of enthusiasm is because the trach isn't the enemy, and never has been.

I know a lot of families who hate that their child has a trach. It's not what they had planned, and most kids with trachs have a slew of other issues to be dealt with at the same time (and believe me, Acorn has his fair share of those other issues). You can't go swimming with a trach, you're supposed to be careful not to get things in it, you have to know how to do CPR if it comes out, you have alarms going off all the time, and you're always worried in the back of your mind, what happens if something goes wrong.

For me, it was always just the thing we were going to do for Acorn to give him a better shot at a life outside of the hospital. The best option in a sea of bad options - the only option, really.

Oh, don't get me wrong, there are challenges. The zillion doctors appointments and follow up phone calls, the personalities and realities of having nursing at home, the equipment to lug around...but to some extent, I don't really feel like these are awful. They are, again, just part of the way things are.

And maybe it helps that we have always known that it wasn't forever. I don't know. I just know that I'm not nearly as ecstatic about this as some people seem to think I should be.

Tuesday, August 16, 2011

Milestones

Today is Leaf's due date.

We're no where close to being home in the "due date plus or minus 2 weeks" that is typically quoted. We are, however, considerably past where Acorn was at his due date - a good 6 ounces heavier, wearing newborn sized clothes right on schedule, off the CPAP 6 hours a day and doing well with it, and there's milk in the freezer to last weeks....and I'm still pumping more.

This dress was really cute, but the nurses insisted she needed long sleeves to go under it:


And without the CPAP, with a hint of a smile:

Tuesday, August 9, 2011

thoughts on nursing

I've been trying to write a post on having nurses at home for months. Not that I don't appreciate them, but it's appreciation tempered with irritation.

Having nursing at home is like a cross between having a roommate and having a houseguest who overstays their welcome. There's no privacy - at least when you have a roommate, your roommate is usually as invested in privacy as you are.

We have 5 nurses in our house each week. Each of them has their own quirks. And their interactions with each other make most polyamorous relationships look sane. Think Jerry Springer material, and you'd be close.

We had a nurse who was marking the equipment with an ink pen, to see if others were cleaning the way she thought they should...except that the pen marks still won't come off. Another is afraid to write anything about the pen marks in the communication book, because she thinks someone else will go off on her and then call and get her fired.

Acorn's nebulizer parts and syringes have migrated from the shelf in his room to the bathroom. His trach care supplies have migrated from the closet to the dresser. He's developed a stack of blankets on the nightstand, when they're supposed to be in the closet...and even if I leave a blanket on him when he goes to bed, and put the others away, there's at least one new one on the night stand the next morning. I keep finding a stack of books over the vent in his room....which has a lever to close it if it's too cold. One nurse puts a new diaper cover on every other diaper...and we only own 7 of them, so he's usually out of covers at the end of her shift. Another refuses to use the prefolds - not that she can't, but she won't, and she won't have him sit on the potty either.

When it's good, it's good - no sitting up all night suctioning, no worrying something will go wrong and they won't know what to do. We have consistent people who show up for their shifts.

When it's bad, it's awful. We've never had someone show up who couldn't change a trach, but I know people who have. Our nurses have never eaten all our food, but I know a family who's had that happen too. I know people who've found their nurse sleeping through their child's vent and pulse ox alarming. In most cases, no nurse is better than a bad nurse.

This past week, one nurse decided that crying and stomping his feet because she didn't put in the video he wanted warranted a time out....in his high chair. That's right - my kid who is still in feeding therapy, even though we're g-tube free, is being punished by being put in the same place we're trying to make enjoyable. Oh, and no time limit on her time outs - if my 3-year-old took 10 minutes to calm down, that's how long he sat there.

Needless to say, we had a long talk.

One night nurse has decided to park in the driveway. Either behind one of our cars, or only half way up the driveway. So...if she gets to talking with the day nurse, we can't get out to go to work, and then she's cranky about being asked to move her car.

You know, I'm sure daycare will have its issues....but I'm so looking forward to having my house to myself and having things stay where I put them.

Monday, August 8, 2011

Blowing Bubbles in the Bathtub

Tonight during bath time, we discovered that the bath paints I bought on clearance didn't work, and Acorn wasn't into painting anyway.

So instead, we blew bubbles and poured water from one container to the other.

I was struck by this - funny, because it's not the first we've blown bubbles in the bath, or even in other parts of the house. But when I was a kid, both would have resulted in punishment. Bubbles were outside toys, so we didn't make a mess in the house.

Rules are funny things. Growing up in a house with a father who has sensory processing issues at best, and some sort of spectrum disorder at worst, we had a lot of rules that, looking back, had little rhyme or reason to them.

The thing is, those rules are so ingrained - so much a part of my psyche - that sometimes it's hard to break free of them even now.

But I do try - when my first reaction to something is "no" I ask myself why - what would happen if I said "yes," what would happen if I didn't yell.

And so, we blow bubbles in the bathtub some days. Once in a while we even blow them in the living room. I hope Acorn learns to blow bubbles sometime soon...and maybe then we can finally take them outside to play with us.

Friday, August 5, 2011

Deep thoughts

I wrote a whole post on this, but it was so stream-of-consciousness complicated that I figured no one would make heads or tails of it anyway.

So, let me sum up this week's insights:

Dark Goddesses have a funny way of showing that they care. Clearly, the one I'm attached to thinks I need to work on some things. Ms Big Dark & Scary had a lot to say in a very small number of words - she's blunt like that.

People who complain about their normal kids and normal lives irritate me - at least in part because while I don't think our little corner of chaos is so bad, clearly if their lives are awful, ours must be worse by their standards, and how dare they judge my life?

how dare they judge my life - see, there we go with things I need to work on again. It's not a contest. Maybe, perspective wise, their life really is awful. They're the same sorts of people who say useless things like "God doesn't give you more than you can handle" and Ms. Scary says, "aren't you glad I think you rate higher than village idiot?"

I wonder sometimes if being open to the possibilities that magick allows makes for a chaos filled life. I still don't know what the answer is, but I know that I ought to sit down a little more often and carve out time to meditate on that and on the guidance of my Gods.

Sunday, July 31, 2011

I feel like we're the zoo attraction

I used up all of my dealing with people points today before my in-laws ever left the NICU, and then I had to deal with them through dinner....

Acorn is 37 months old. That means he left the NICU 28 months ago.

In that time, his grandparents have been out to see us for 3 birthday parties, and to help build his play structure. Other than that, we only see them on holidays. They visited about once a month when he was in the NICU - go to lunch with us, spend an hour or so staring at him, and then head home.

Yesterday they called, wanting to come visit today....because they want to visit Leaf. Their interactions with Acorn are spotty at best - they've forgotten what it's like to have a toddler or preschooler, I guess, because they want him to visit on their terms. Sit in their laps, read a story, and so on - things he doesn't do well, because he wants to be up and moving, but worse, things he won't do with them because he sees them so rarely.

It's a shame that Leaf appears to be the only reason they're visiting - like going to the zoo for the afternoon. Take the tour, stare at the child in her crib (behind bars even!), move on to the next attraction (Acorn), be amazed that he's got opinions and knows what he want (remember, folks, just because he can't talk doesn't mean there's anything wrong with his brain!), then dinner and home.

Wasn't that a nice day?

Sigh.

And guess what? In two weeks we get to do most of it again, when out of town family come to visit (spouse's uncle, with his wife-to-be - a former friend of his now ex-wife - and her two children...there's drama there that I don't want to be near with a 10 foot pole). We've already said we won't drive the hour out to the grandparents' house with Leaf in the hospital - if they want us at dinner they can pick someplace closer to us. What we haven't told them we also won't be letting them all into the NICU. I'm not letting someone else's kids back there - I don't know where they've been.

Thursday, July 28, 2011

inconceivable

Bedtime was a fight. Acorn was wound up, even though we'd gone to the mall for a good long walk. I was frustrated and irritable anyway, and there was no nurse coming in to sit up with him so my already far too shortened sleep was likely to be even less.

And after 45 minutes of flopping around,  climbing out of bed, etc etc etc, I was ready to scream.

He wouldn't answer me when I asked if he wanted milk. So I got him some anyway - straight from the electric cooler currently in my bathroom (the fridge is on its last legs, and a new one comes Saturday, but between now and then I'm not risking my breastmilk in it). He settled in next to me, drinking greedily, and I listened to the rain and thunder outside and felt his breath on my cheek and thought, "you know, this is more how it was supposed to be."

Most of his life, the idea of giving him breastmilk has been inconceivable. First, there wasn't enough milk, then I stopped pumping all together.  And then when Leaf came, I was terrified that Leaf wouldn't have enough either. But I'm hovering right around the 700 ml a day mark - that's about 24 ounces, and is considered a "full supply" - suffient to breastfeed a term baby.

Leaf is getting hindmilk only, and Acorn can easily tolerate the foremilk (and it'll be a long time before Leaf can take the lower calorie, higer sugar-per-volume foremilk). So rather than wasting it, we've been giving it to Acorn. Clearly he can tell the difference - only milk and milk-like things go in bottles as far as he's concerned, and everything else goes in a cup (and milk doesn't belong in a cup at all...that's just plain wrong). But he doesn't seem to mind at all.

I'd like to say that bedtime was a breeze after that, but I'd be lying. It was another 45 minutes of flopping, asking for a diaper, and finally getting up and getting a chair and getting me to sit in it with him to get him to sleep. Even then, comparing his muscular 32 pounds to Leaf's 5 pounds....and comparing both of them to how big Acorn was when he was less than a pound and a half..... It's still inconceivable to me that this sprawling 3-foot-tall boy was once smaller than his head is now.

Wednesday, July 27, 2011

Welcome to our Crazy Life

So far this week:

My car has been in the shop. It's worth ~$2000, it needs 3 different repairs, each quoted by the dealer as being $750. We're going to make one of them (which, according to a late breaking text, isn't actually the repair we thought it would be - dealer's diagnosis and local shop's diagnosis disagree, so this first round is considerably cheaper than anticipated), and get some other things in order to be able to pay all or mostly cash for a replacement vehicle later this year.

The washer started making noise a couple weeks ago. ~$200 later we will have a new pump tomorrow. I do not want to replace this until Leaf is out of diapers - high efficiency washers and cloth diapers seem to have issues, and I like my old washer.

The fridge started making noise last week. The compressor is bad, which is a $750 repair. I think the fridge only cost $780 when we bought it 10 years and 6 weeks ago, as our housewarming present to ourselves. The repair guy said he wouldn't fix it - we're better off buying new.

My great aunt (or 3rd cousin, or something - in this case, tribal kinship rules make more sense than actual geneology) passed away last night. She was my grandmother's cousin of some sort, but she was raised by my great-grandparents because her family was sickened by a cholera outbreak, and they wanted to protect her, so they sent her away. Last year we learned that Aunt E had a sister still alive, back on her home reservation.

Aunt E was the first person I ever met (and I was 10 when I "met" her the first time that I actually remember meeting her) for whom faith was something one lived their life by, rather than just the name of the church one attended. For her, it wasn't about needing to *believe* in something - it was complete acceptance, a quiet knowing - there was a glowing solidness to her faith. I used to pray that I'd be given faith like hers, and in some ways, I have that solidness now....just not in the same God, and not always to the same extent that I always saw in her.

Aunt E was diagnosed with stage IV metastatic cancer of the lymph nodes back in 1993 or 1994, before I even met my husband, and she decided a year or so later that she was going to enjoy what time she had left, rather than go to doctors so she quit all conventional treatments (though she did see a traditional healer)....and cancer still wasn't what killed her this week, more than 1 5 years later.

And that's just the unusal stuff, not anything related to the NICU or nurses or work or the terrible threes (really, two was a good year for us. Three is turning into a disaster of frustration and tantrums, and I really would like my sweet boy back, thanks).

No wonder I feel overwhelmed - that'd be a rough week without our normal chaos.

Thursday, July 21, 2011

Some days, it's the little things

A quick little post for my first day back at work from maternity leave...

If you've read my breastfeeding carnival post from earlier this week, this will make a heck of a lot more sense....

Want to know how to get funny looks from an OR recovery room nurse? Tell her that you have a bottle of breastmilk for your three year old and that it's your understanding that it counts as a clear liquid, so he can have it, right?

Especially since he's only half awake, sobbing, and hasn't eaten a thing in over 12 hours, and won't drink apple juice or sprite from a straw in his semi-conscious sobbing state of unhappiness, and won't drink either from a bottle.

Want to know how to make her sniffle a bit and look ashamed?

Explain (after he's settled in with the bottle, and quieted considerably) that your *other* child is upstairs in the NICU and you're pumping for her...and that you didn't have enough milk for your 3 year old when he was an infant, but that you have more than enough for the little one now to share with your preschooler.

Yeah. That part was good. The rest of the surgery thing kinda sucked, with all the sobbing and not really waking up for several hours, and the obvious pain later in the evening, but I'm happy to report that we're now g-tube free! One stoma down, one to go....

Wednesday, July 20, 2011

sigh

I find myself in this odd in-between space, and I'm not sure what to do with it. Clearly, I'm overwhelmed. Clearly there are bad days. Clearly there are things falling off the table. But I'm not depressed (and my therapist agrees).

For me, true depression steals away my words for weeks - even months - on end. And that's not where I am right now. For what it's worth, antidepressants did that too, so I'm going to try to avoid them for the foreseeable future (and since my therapist thinks I'm not really depressed, they're not really the right approach anyway). Clearly, anything that changes such a fundamental part of me is a problem - normally if I don't write, I eventually feel like words will come pouring out of my ears, and when I'm depressed, there are simply no words, and having tried it before, that's  no way to live.

However....this week I go back to work. This week I give up another 9+ hours a day out of days that are already too full.

And all the things not done sit heavy on my mind - some little, some big, but none likely to be handled anytime soon. I think we're mostly hunkering down and waiting for the storm to pass.

Tuesday, July 19, 2011

Tomorrow is a Big Day

Tomorrow we take a big step towards being less medically fragile - Acorn's feeding tube is being removed. It's somewhat anticlimactic, seeing as how it's only use since December was to keep him hydrated when he had rotavirus earlier this year....other than the fact that they're actually going to put him under in the OR and sew the hole shut (which we were originally told was not generally required, but the surgeon says it's been there long enough that it likely won't close on its own, so why waste time).

We're having a lot of changes this year. New baby, new round with the NICU, no g-tube, and no trach (and no nursing, plus a new nanny) is coming...and that doesn't include things like this week's first ever sentence: "I go round round" when he was told we were going to see the occupational therapist, who lets him spin on her swings.

No wonder we're all stressed.



Thursday I go back to work - not looking forward to that.

Monday, July 18, 2011

Eight Times a Day

This post is part of the July Carnival of Breastfeeding, hosted by Elita, over at  Blacktating - the topic this month is "Breastfeeding the Special Needs Baby" - a topic right up my alley.


*****

Eight times a day, everything else stops and I sit here for a half hour and pump.


Eight times a day, I put liquid gold into little plastic tubes for my now 7 week old, 4 pound baby girl.

Seven of those are at home, without her. The last precious session is almost always at her bedside, with the pump I begged and pleaded to be allowed to leave in her tiny room, next to the plastic box where she spends most of her time.

Eight times a day, I hope that next week she will be big enough, better enough, to talk about breastfeeding from an actual breast, rather than dribbling milk down the tube in her mouth.

Eight times a day, I'm shocked that anything comes out of my breasts at all. Making milk to feed a baby really is a superpower.

Eight times a day, I write down every last milliliter of milk pumped, keeping a tally - at the end of the day, I'm always surprised at how much there was (right now, just less than 3 times the amount she is fed in a whole day).

Eight times a day, I'm reminded of the last time I did this - pumping for my now 3 year old son. He was a little more premature, a little smaller, and a lot sicker...and I had not nearly enough milk to sustain him, no matter how much I pumped.

Eight times a day I think about how much milk is in the freezer - bottles and bottles of 1-2 ounces each - right now, 15 bottles a day. And I'm reminded of the day we used the last of my frozen milk for my son, just 2 days before his due date.

Eight times a day I think about how much I loved breastfeeding my son - all 3 weeks of it, starting at about 3 1/2 months old, just before his lungs couldn't keep up anymore. When he was stable again, 2 months later, he had forgotten how to suck.

Eight times a day, I remember pumping eight times a day and bringing one full bottle to feed him - not even a full feeding by then. It doesn't make me cry every time, but more often than I like to admit.

Eight times a day I dread sitting down with this pump, but it's my only option to get breastmilk for my little girl, which is by far the best thing for her right now. It's also our best hope at one day having something resembling a normal breastfeeding relationship.

And so, everyday, I pump eight times a day to make sure she gets what she needs now, and hopefully long into the future.


*****

Please read some of the other posts in this carnival too:


Kelley @ Navagating: No one told me I couldn't
http://navagating.blogspot.com/2011/07/no-one-told-me-i-couldnt-my-nursing.html

Tanya: They said you can't breastfeed a baby with Down Syndrome http://breastfeeding.blog.motherwear.com/2011/07/they-said-you-cant-breastfeed-a-baby-with-down-syndrome.html

Marla @ A Place to Write Things: Breastfeeding My Daughter, Who Just Happens to Have Cerebral Palsy
http://aplacetowritethings.blogspot.com/2011/07/breastfeeding-my-daughter-who-just.html

Jenny @ Chronicles of a Nursing Mom: Breastfeeding is the Only Way
http://fabnaima.blogspot.com/2011/07/guest-post-breastfeeding-is-only-way.html

Blacktating: In A World of Uncertainty, Boobs Are Certain
http://www.blacktating.com/2011/07/in-world-of-uncertainty-boobs-are.html