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


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.