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!

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....

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!

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.

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?

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.

Maybe Preschool isn't going to work out

Preschool is a challenge.

Acorn participates, but only with 1-on-1 attention from a teacher or an aid. When they switch people (like for a break) it's 20-30 minutes to get him back in the groove. There are typically 4-6 adults over the course of the day who are his shadow, and they're not the same people the 2 days he's there, because most of the aids are part time.

About once an hour, he looks up to make sure the nurse is still there, and starts crying. She tells him he's doing wonderfully, playing with his new friends or doing art or whatever. He continues crying for a few minutes, but keeps participating (though how much of that is because there's someone right there hands on is hard to say).

When we show up, he runs for the door. He's gotten better at home about getting his coat before he goes out, but if he could get out their door without a coat he would. He won't eat breakfast for them; lunch and naps have been spotty at best.

*sigh*

Suggestions so far have included to try switching days - one of the aids is there Tues and Weds and if he went those two days, she could be his main shadow person. Which is great, if it gets him more comfortable, but doesn't solve the issue of us having this problem all over again in a few months when we switch to full time.

They think he'd do better if he was there more often. I'm not so sure - we do lots of other things once a week, without it being a huge deal for him. He's always had a different schedule for different days of the week, with different nurses, therapists, doctors appointments, etc.

I don't know what to do. I don't want to leave him there if he's miserable, but I don't want to pull him out before giving him a chance to figure it out and work out how to navigate it, and I'm not sure 3 weeks is enough time to have figured it out.
 
I'm wondering if this is a transition he's just not ready for. Which is fine, but still leaves me figuring out what we do about child care when we lose our nursing. I really wish there was a simple answer.

At least some changes can be slow

Yesterday I toured a local daycare center.

It's something I never intended to do - before Acorn's birth, we'd talked about a nanny, or maybe having a family member watch him.

After his birth, when we thought he was coming home at 4 pounds with an oxygen cannula, we chose an insanely expensive private Montessori school that took infants through kindergarteners. They took cloth diapers, they didn't mind oxygen, they didn't mind the 3 month delay in skills. They santized obsessively, and had a culture where kids didn't come to school when they were sick. Our only complaint was the cost, but what could we do? It was certainly something we could afford to pay for, although it was going to require some budget adjustments.

And then came the trach. And nursing. And dozens of appointments.

And here we are - we can see an end to the trach, and with that comes and end to nursing.

Acorn is not the kind of kid you can leave with someone he doesn't know. He's had far too many bad experiences in his sort life to be comfortable with that. His primary day nurse has been with us since he came home, 19 months ago. To take away caregivers he's completely comfortable with, and thrust him into a completely unknown environment full of other children (which he has very little experience with) would be a disaster.

Actually, that lack of social experience is a big part of why we're doing this instead of a nanny. We have a Montessori elementary school in mind, which has a preschool program...but right now there's no way he'd be ready to do that next year without some experience between now and then.

So....yesterday I went and toured the best daycare we'd found in over two dozen calls. It's not Montessori based, but it's attachment-parenting friendly, cloth diaper friendly, low kid to teacher ratios, and close to home. It's a place where everyone works together, and teachers and children alike are expected to treat each other with respect no matter how different they are. It's a place that already signs with their toddlers, so signing isn't a problem; it's a place that routinely has children who come in speaking only a foreign language, no English - so the speech delay doesn't phase them. It's a place that has had challenging behaviors before (2 different kids who were eventually diagnosed as Autistic) so Acorn's quirks aren't going to seem like a big deal. It's a place that's very open to parents sticking around, and who wasn't phased by the statement that he comes with a nurse. They happily challenge kids academically, don't mind 3 year olds who aren't potty trained (though I hope we'll get there in the next 6 months), and treat each child as an individual.

It's a place that will work to figure out Acorn, complications and all, and give him some experience with what normal kids do. And they have no problems with him going 2 days a week from January until decannulation, and then switching to full time without a nurse, because by then he'll be comfortable there, know the routine and the kids and the teachers, and removing the nurse shouldn't be an issue.

Or at least, that's the plan...not that he's been all that reliable about doing anything according to plan, but it's the best we've got right now.

changes

All changes, even the most longed for, have their melancholy; 

for what we leave behind us is a part of ourselves; 

we must die to one life before we can enter another.  

~Anatole France

It's looking like 2011 will be a year of change around here. There's a lot going on behind the scenes - big big changes are afoot. Big changes, and even some little ones, can be scary.


The most obvious change heading our way right now is that Acorn will be getting his trach out. He's capped all day except for his nap (and he's catching part of his nap with his cap on too). He has to go all day, including his nap, with a cap, before they'll schedule decanulation, but they won't schedule it until the spring anyway (to avoid pulling it during cold and flu season and then having him end up back in the PICU with a severe illness).  They told us to expect it to take a long while to work up to wearing it all day - a couple minutes at a time, even - but within a week he was wearing it all day without any issues.


When we started capping him, we also downsized his trach, and that has meant he's not sleeping on oxygen either (which shouldn't happen, logically, but it seems that kids with BPD/CLD are super picky about pressures, and the difference matters to Acorn). It's so amazingly quiet in here without the oxygen concentrator running - not that we hadn't realized that during the day, but during naps, and at night, it's almost eerie -there's not a sound through the baby monitor, and that's so amazingly different from a year ago, when we listened to him breathe with the help of the ventilator.


But decannulation also comes with some down sides. We lose nursing, and we need to find Acorn a daycare situation. We lose the ability to treat hard-core illnesses with the equipment and supplies we have here at home. We lose the security of knowing that if anything does happen, we already have a guaranteed airway - our recussitation bag doesn't have a mask, just a trach adapter. 


Not that we've bagged him in the last 18 months, but I've got a friend whose child recently had a febrile seizure and stopped breathing, and the panic in her voice even a week later was horrifying; here we have dealt with a child not breathing and turning blue enough times that it isn't such a shocking thing anymore, especially since we have all the equipment that an ambulance would have.


Anyway. There are other changes coming too, and I know I'll be talking about them in their own time, but if one big change is scary, think of how several all at once must feel. I keep reminding myself that it really is a light at the end of the tunnel, not just a freight train.