Thursday, July 29, 2010

Some good news for a change

In the midst of insurance wrangling and new specialists giving new names to things Acorn has always had (but, you know, naming them makes for more leverage to get what Acorn needs), we've had a few bright spots this week.

Acorn is working on getting rid of diapers. It's slow, and he needs a lot of reminders, and he's still learning to get those training pants off and on, but most days we are down to 1 soiled pair of trainers and a couple of diapers. It's an interesting switch for us, after more than a year of a dozen or more diapers every day.

He's also quickly weaning off his oxygen. Not at night yet, where we're often still running 1/4 liter or more at times, but during the day he can go at least an hour without (that's the longest we've tried so far). So most of the time, he's on 1/16-1/8 of a liter of oxygen now when we're out and about, which means a tank lasts forever.

The small windows of tubelessness open up a world of possibilities...going to the park without getting tangled, for one. Going to some of the local indoor play areas, which are sooo not child-with-tubing-and-tank-as-leash friendly.

And maybe, just maybe, a toddler gymnastics class starting in a month or so - he so wants to learn to do summersalts, and he's nominally at the low normal end of gross motor skills development for his actual age, so it ought to work. Especially if we don't mention any of those big scary medical words that might make them think he's not well enough to attend.

Because, thankfully, he's certainly well enough to do normal kid things - it's taken 2 years, but we're getting there.

Tuesday, July 27, 2010

I think my job is eating my brain

I need a new job. Or something. Because I think this one is slowly killing me. Or maybe it's the schedule. Or the 45 minutes each way commute.

There are days where my job is perfect - where I am very comfortably me, in my element, doing my thing. Creative, organized, insightful, and inquisitive, solving problems, figuring things out.

There are days when my job is soul sucking and painful, where I can't imagine enduring another day of it.

And there are days it manages to be both at the same time.

Don't get me wrong - my job is important to our family.

I have health insurance, which Big Oak only sorta-kinda has access to at his job (his boss likes to change the coverage from month to month to lower costs). At this point, Acorn wouldn't have insurance if we were dependent on Big Oak's employer for it. And it's turned out that having really amazing insurance (one of those "Cadillac" plans you hear about on the news) makes getting the waivers Acorn needs a lot easier - they know they aren't going to have to pay out more than the copays on most things, and paying for 40 therapy visits a year after the 60 our insurance allows is far far less expensive than paying for 100 visits.

And I make half again as much money as my spouse. We're still paying for some things we did early in our marriage that, in the grand scheme of things, were not the wisest choices. I used to say we were paying off "young and stupid" but it's more accurate to say that we were chasing a dream of a life that didn't require these crazy day jobs, and just didn't quite get there. Having a day job that pays more money than your parents ever made combined makes the risk analysis on business opportunities look a little different.

And Big Oak's job isn't all that stable. Yeah, he's worked there longer than we've been married, and yeah, he hasn't missed a paycheck yet....but there was that time that the electricity at the office got turned off because paychecks went out. And the boss is talking about cutting everyone to 30 hrs a week if sales don't pick up this summer. Which isn't such a bad deal (other than the 10% of our family income lost, though we can do that without giving up anything other than massive debt reduction), if Big Oak gets to choose which hours he works (which he probably will), since it'll mean he can take Acorn to appointments and I can save my last 6 vacation days for Acorn's hypospadius surgery this fall, and anything else that comes up.

But - and of course there's a but - I wish I had more time at home with Acorn. I wish I had more time to write and create. I wish I had more time to just enjoy life, rather than running from thing to thing all the time. I wish I wasn't spending so much time on the road.

It makes me contemplate taking the option my employer offers to work 75% or 80% of my hours for a similar cut in pay. But I wonder if one day a week would get eaten up in household chores and scheduling Acorn's doctors and therapies.

Or if it'd be just the thinking space I need...

...or if it would just be a better mirror to show just how badly I need to do something else with my life.

Tuesday, July 20, 2010

inchstone achieved

Janis (@sneakpeekatme) wrote a while back about inchstones - those little achievements that never show up on any charts.

Well, this week we reached one of those inchstones.

He'd been getting (since around February) the following as his basic minimum calories for the day:

  • 2 8 oz bottles of whole milk with Carnation Brekfast Essentials (2 x 280 calories = 560)
  • 1 8 oz bottle of milk with 1/8 cup baby cereal (190 calories)
  • 1 10 oz smoothie (approx 350-400 calories)

total: 1100-1200 calories.


Now, since we started this, Acorn has improved his eating. The most he's ever eaten is a whole 4 oz container of yogurt, but he's gotten more consistent about eating 2-3 ounces of food of various sorts in the morning and at lunch. It's not quite enough for me to really start counting all the calories, but I'm guessing it's around 50-100 most days, so we're getting there.

He's also been requesting more milk - at least one full bottle, sometimes two. That milk alone is 150-300 calories a day.

So. since he's getting consdierably more calories than he really needs, we're going to cut the volume on his midnight feeding. If we split that into 4 feedings instead of three, we'll lose about 100 calories there, and it'll be 7.5 oz instead of 10, which should be easier to digest, allowing more hunger during the morning...which hopefully will result in more eating.

This is the first time we've reduced g-tube feedings in a good 10 months or more. One step at a time towards getting rid of the g-tube...and that's without any help from the feeding therapist!

Sunday, July 18, 2010

Making Peace with My Period

subtitle: Aunt Flo, who visits most women monthly, doesn't call or write, and sometimes I think she's writing me out of her will

*******

Today, Acorn broke a glass soda bottle. Big Oak had put it in the top of the pop bottle bin (we have a bottle deposit here, so you save your bottles up to take them back). I'd mentioned before that putting it in the top of a full bin was asking for trouble - Acorn likes to pull bottles out and play with them - but it fell on deaf ears, and when Acorn did exactly that today, he dropped the glass bottle on the floor and it shattered.

I try very hard to be the kind of parent who doesn't yell. I know when Acorn is getting into things like this, he really needs more attention - when I give it to him, he's less likely to cause mayhem and destruction.

Today I failed. Actually, most of this week I've failed.

I knew it was coming - I took a medication to try to kick-start my menstrual cycle, which last made an appearance in January with the help of an expired package of birth control pills. Before that, it was the January before.

Taking hormones makes me crazy - super edgy, super moody, achy, and likely to snap at anyone.

Today it was Acorn.

*******

I have a primary diagnosis of PCOS, and I take a metformin and synthroid to manage the easily handled contributors, but even at my lowest weight, with plenty of exercise and a reasonable diet, my cycles have never been regular.

For someone like me, who can go years between cycles without medical intervention, medications like this throw things way out of kilter. And for me, the side effects are more pronounced because they're so out of the ordinary. I cramp, a lot, because I'm usually clearing out far older blood than is normal, for example.

My first gynecologist was a jerk who wanted to give me either speed or the now infamous phen-fen because I was too heavy (at my strongest as an adult, and my lowest weight as an adult) for his personal taste in women. I was 18 and a virgin, and he had a problem with that, lecturing me on how sex was ok, as long as it was serial monogamy. He said I'd probably need clomid to get pregnant, but a monthly script for someting to keep my period regular was needed.

At that point, I hadn't had a period in 4 years.

He put me on progesterone, which made me nauseated (little did I know, but it causes me to have unpleasant blood sugar swings), and then put me on birth control pills.

If there had been such a classification back then, those birth control pills caused symptoms that would easily have been classified as pre-menstrual dysphoric disorder - I was not functional 2 weeks out of every 4, and I hemmoraged with each cycle - bleeding often continued 15 days or more, and I was filling a super strength tampon plus a heavy/overnight pad in about an hour for the first 4-5 days of each cycle. The cramps were so painful that I often didn't leave bed for days.

My doctor back then told me there was nothing wrong with my reaction - that I needed to give my body time to adjust, and then that it was all in my head.

My doctor now shakes his head and says that even then, ultrasounds were available, and no self-respecting sane doctor should have prescribed pills without an ultrasound (or a D&C) given how long it'd been since I'd had a period at that point.

*******

The story of getting pregnant with Acorn is long, and not really for this post, but let's just say that fertility drugs leave me feeling awful.

And Goddess help me, I want another child.

I've tried, over the years, to make peace with my cycle - and when I don't have a cycle, it's pretty easy to do just that. Out of sight, out of mind. When I've had cycles of hemmoraging, peace comes through giving in and sleeping - not that this is a helpful thing in terms of keeping the rest of life in balance. The cycles where I'm cranky...we all just keep our heads down, which is definitely not a peaceful way to be.

While some women find cloth pads and menstrual cups empowering, giving them insight into their cycles and helping them live more in harmony, for me they're a reminder of things that feel broken (the whole fertility process) and a necessity - I can't carry enough tampons for one of those hemmoraging cycles, but a cup can be emptied over and over again.

And if we want another baby, we have to do it all again. So there isn't much choice.

I dunno. I want to find a way to accept this as the way it is, to make peace with this whole menstrual cycle - to get back in Aunt Flo's good graces.

But when it feels like she's suckerpunched you in the pelvis, it's hard not to think about finding her in a dark alley and beating her senseless

Tuesday, July 13, 2010

Who knew eating was so hard?

Welcome to the July Carnival of Natural Parenting: Let's Talk About Food

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Code Name: Mama and Hobo Mama. This month our participants have written about their struggles and successes with healthy eating. Please read to the end to find a list of links to the other carnival participants.

***

When I got pregnant, we had these grand plans. Cloth diapers. Baby wearing. Exclusive breast feeding. Baby led weaning - none of those store-bought processed containers of questionable food, we were going to  make our own.

Not that we're perfect at eating well. Oh, sure, we talk a good talk. And we have made improvements - drastic improvements - over the fast food and boxed food world we grew up in. We've had a CSA membership in the past. We mostly eat pasture fed beef and free range chicken. We now have a service that delivers fresh fruits and veggies every week, and though they're not organic, they're local when it's in season. We've cut HFCS, and most pre-processed stuff, we eat out once or twice a week instead of eating in once or twice, and it's rarely fast food. We're actively choosing healthier options most days, which is not something I could have said even 3 years ago.

But all the ideas of what we were going to do with our child flew out the window when Acorn was born prematurely. Pumping is not the same as breastfeeding, and by the time he was 3 months old we were supplementing with formula - I gave up pumping at 7 months in favor of uninterrupted sleep. Cloth diapering might work in the postpartum unit for that first overnight stay...but not when your child's urine output is being monitored to adjust diuretics.

And child led weaning? I guess that's what you'd call this mess we're in, other than the fact that we have a child who doesn't eat enough to sustain his own weight, due to oral dysphagia and oral defensiveness.

When we brought him home from the hospital at 9 1/2 months, he ate about 10-12 ounces of formula a day....and the remaining 20+ went into his feeding tube. When we started trying to get him to eat solids, it was on his terms, or nothing, and involved him vomiting more often than not - I was thrilled when we got him to eat 2 Cheerios in a row without gagging and puking all over the table.

These days, at two years old, he drinks 3-5 bottles of millk a day, some of them with cereal or with Carnation Instant Breakfast added. He eats some finger foods - pepperoni, Cheetos, anything "cheese flavored." He eats yogurt (hey, at least I can buy that organic, if I know where to shop). 


We still have one overnight feeding through his feeding tube. At least there, I threw out the pre-packaged stuff (it made him vomit) and we're mixing smoothies. Fruits and veggies and almond butter, good oils and protein powder and milk - all the good stuff he's not getting during the day. And even that is sometimes made with store bought "name brand" non-organic baby food purees, because there are only so many hours in the day, and sometimes cooking isn't on the priority list (though we do try to prep ahead several weeks worth of veggies at a time).

He started feeding therapy this month, and they've already given him lollipops and beef jerky and Pixi Stix. And while I cringe at all the junk food...I'm glad that he eats at all. I'm glad that we see progress every week on what he will try and what he will devour (well, ok, we're talking half a jar of baby food, or about 2 ounces in a sitting on a good day).

One of these days, when he's older, we'll talk about making good choices...and one of the choices we'll talk about is this choice we've made: Eating is important - whether it's by mouth or by feeding tube. Choosing what to eat is a privilege that not everyone has. I'm hopeful that Acorn will eventually have that ability.


***

Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Code Name: Mama and Hobo Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:
(This list will be updated July 13 with all the carnival links.)

Monday, July 12, 2010

This life of ours is complicated

I understand that some people don't get our life with a special needs child - that the day in and day out realities are just too far from their experience for them to grok the situation.

You'd think my mother wouldn't be one of those people.

I mean, she's been a therapist. She's been here more than once to visit, and for more than a day or two at a time. She's been a foster care worker, and had caseloads that involved organizing services for special needs kids.

But from the very beginning, she's been incapable of really understanding what we live with. In the NICU it was "oh he's fine - what are you upset about?" when Acorn had a bad blood gas, went back on CPAP full time for the second time (downgraded from a nasal cannula of oxygen), and started lasix to help prevent heart failure.

Last year it was, "oh, don't worry about germs, all kids get sick" and "oh, he'll figure out eating when he's ready - not all kids eat solid foods right away" Yes mom, but not all kids end up in the ICU when they get a cold, not all kids are home on ventilators and in precarious lung status before they get sick, and not all kids have had tubes in their mouths for months at a time, missing the developmental window for breastfeeding to be a reflex, and then have a trach to deal with.

This trip...this trip's failure to understand involved time.

Between Acorn and I, we had 9 appointments during my shutdown week (ie, forced vacation) - while I totally respect the concept, I'm hurting for days to get doctors appointments in this year, and giving up 4 days of vacation because my employer demands it is painful. She followed us to Acorn's appointments, sat and graded assignments for the college class she teaches while I ran to my appointments.

She's on a quest for "spirituality" (and as a Pagan, I totally respect that, though as a priestess, I wonder about her choice of timing and her reasons for looking now). Now that some political things are out of the way, and my brothers and I (and Acorn) are enrolled members of the Native American tribe she and her family belong to, she wants us all to have a naming ceremony together. A cousin of ours will do it, and is known for his ability to ask Great Spirit for the name for the person he's naming. I think it would be very nice - a nice rite of passage, and a memorable thing for us all.

Now, these things take planning. Lots of planning, because a give-away is required, where you give gifts to everyone who attends, and have a feast. So, she gets it in her head that we should do it this fall, or maybe next spring. And a part of me thinks she wants it this way because (a) she knows her mother won't support her in providing anything for the ceremony, and (b) she's a college student, so spreading the responsibility for paying for the giveaway is a benefit to her.

I explain (for about the 10th time this week) that I do not have vacation days available to travel to South Dakota this year, and may not have them next year (given that even if Acorn is decannulated, we'll still have follow up appointments for some time). The only time I would have available in the next year is Winter Shutdown (i.e. Christmas Break) and Summer Shutdown (i.e. 4th of July break). And that I didn't think winter travel was a wise idea, given the weather in South Dakota. That it's a 2 day drive (minimum) for us, or 9 hours combined flight time (including layovers, and not including security, getting the rental car, etc), so it's not really a weekend trip for us either.

Oh. Well, that puts a damper on things - it really limits her options, and complicates things.

Yeah. Her life is soooo complicated.

Sunday, July 11, 2010

It's a Good Thing He Likes Fire Trucks

Last night we had a rather unwelcome sort of excitement. Our smoke detectors went off around 1 am...but only for a few beeps. Of course, all of us (me, spouse, my mom who was visiting, and Acorn) were sleeping - well, ok, the nurse wasn't sleeping - and then weren't. Luckily Acorn slept the whole time.

We walked the whole house, and found nothing, so we went back to bed.

And just as we were settling in, Big Oak was going to tell me about the really bizarre dream he was having just before the alarm went off, the alarms went off again. Just one set of beeps this time.

Now, I don't know how it is at your house, but our house was built with the alarms pre-installed. They're all wired together, so if you set one off, they all go off. So...it's loud. Really really loud.

We walked the house again, top to bottom. The nurse is getting paranoid by this point. We turned off the dryer and went back to bed.

I ask Big Oak about his dream, and he says that he was having a dream, and heard a man's voice calling his name, completely unrelated to the dream. It woke him up, and he had actually just opened his eyes when the alarm first went off.

And, of course, now I'm feeling a bit paranoid. But, we decide sleep is important because the nurse is leaving at 7 am, and as we finally drift off to sleep, it happens yet again.

Anyway, I decide that this calls for drastic measures, and I call the police/fire dispatch line (not 911) - the alarms go off twice more while I look up the number. I explain that I probably sound nuts, but the smoke alarms keep going off for a few seconds and then stopping. He askes how many times, and I look at the clock, and get ready to tell him five times in 40 minutes, when they go off again.. He says, "wait, was that your smoke alarm?" Yes, yes it was. "ok, how many people are in your house?" Four adults, one toddler. "Ok, I'd like you all to wait on the porch."

Um....I have a sleeping toddler (and yes, he slept through all of it) who has a trach and is on oxygen. This is going to take a bit of organizing. He asks if we need a paramedic unit to come evacuate the house, and I said no, just that it was going to take a couple minutes.

So, out the door we go, alarms still going off randomly. We decide to put Acorn in his car seat so we're not worrying about him getting trampled. He of course wakes up, rather panicky that we're out in the dark.

Within a minute or two a pickup truck pulls up into the next door neighbor's drive. A man gets out with a radio and says, "so, you're having smoke alarm problems?" We start to explain, and the alarm goes off again, and stops just as quickly. He blinks a few times, says, "right. I see. You don't have a security alarm? No? Ok, I need one of you to go in with me, and we'll walk through everything."

While the rest of us are sitting there, fire trucks start arriving, with lights and no sirens, along with pickup trucks full of guys and an ambulance.

Acorn grins his biggest grin, and claps and cheers.

The neighbor comes out to ask if there's something wrong with Acorn, and we explain the problem and she commiserates....her dog got tagged by a skunk when she came out to see what the commotion was all about.

The whole time, Acorn is having a ball watching the trucks and the men in their suits.

The firemen check the whole house, top to bottom, inside and out. They find nothing....but the alarms quit going off. They suggested that we might have a detector going bad, but they're sure the house isn't in danger of burning down. They tell Big Oak that we might need to start taking the batteries out of the detectors one by one if the problem returns to discover which alarm is bad...that, or there could just be dust in one.

We all trooped back inside, but it apparently took over an hour to get Acorn back to sleep - he kept going to the window to see if the trucks were there.

I totally should have had my camera.

Thursday, July 8, 2010

Potty Learning!

SO.....

I know what I'm about to say will horrify some parents on various sides of the whole issue of moving your child from diapers to independently going to the bathroom like us adults usually do. We started early, and we're at a point where we're moving ahead full steam on Acorn's request, even though he just turned 2, and has developmental delays.

We've been having Acorn sit on his potty chair after nap time and after waking in the morning for about a year now (yup, we started at 13 months actual, when he started waking up from naps mostly dry). Not in a stressful way, just a fun time, sitting, watching a movie, playing with toys, and when he was ready to get up, he could. It didn't take long for us to successfully get at least 1 a day in the potty, sometimes 2.

Now, we'd left it at that, really, waiting to see what Acorn did - dragging him and his ventilator to the bathroom really wasn't an option if he said he needed to go, so we were first waiting until that was done. And then there was this whole hypospadius thing, needing surgery and all, and we were told that kids usually regress after that sort of thing, so it "wasn't worth potty training" before it was fixed...and then his one surgery turned into two, and that puts us into this fall, and if he's going to go to preschool the following fall, we'd need to do something about it this winter/spring....

But, you know, this kid is smart, even if he does have some delays in his physical development. His therapists and psychologist all say he has amazing problem solving skills. He hates wet diapers (and ours are all cloth, so he knows when he's wet). And now he also knows that you can go potty in the potty chair, because he's been doing it successfully for a year - and that people clap and cheer when you do.

And last Friday, he proved me right.

He'd gone in the morning when he got up. While he was playing, during our before-leaving-for-work routine, he went over to the potty chair and started messing with it. We all looked at each other, and Big Oak said, "do you need to go potty?" Acorn's response was to open the lid, so we stripped his barely-damp diaper off, and sat him on the potty, and a minute or two later he got up, and sure enough, he'd gone pee in there again.

Of course, we all clapped and cheered.

During the course of the day, the nurse reported 5 potty attempts, all instigated by Acorn, and all successful...and 3 wet diapers.

While it's been sometimes more successful than others, we've got about a 60% success rate going in the potty over the course of a few days. We've had one miss on the floor, where he got up from the potty before he was done, and went on the floor instead.

So, our plan at this stage is to get some training pants (I've purchased 2 brands locally, and have 4 others on the way - I'm thinking I may write reviews on these) and to teach him to put them on and take them off by himself. Here around the house he's usually t-shirt and diaper anyway, so it should be fine. Given his control issues, anything he can do all by himself is more likely to be successful.

Once we've got him going about 80-90% in the potty chair and signing (or saying) that he needs to go, we'll move the chairs out of the main rooms (one in his room upstairs, one in the livingroom downstairs) and into the bathrooms, and then we'll move to putting the ring on the toilet instead.

I'm a big fan of the term potty learning instead of potty training - we're not putting him on every hour, we're not fighting about it, we're just giving him opportunities to figure it out.

Wednesday, July 7, 2010

If not the NICU, then where?

Welcome to the July 2010 Carnival of Nursing in Public


This post was written for inclusion in the Carnival of Nursing in Public by Dionna and Paige at NursingFreedom.org. All week, July 5-9, we will be featuring articles and posts about nursing in public ("NIP"). See the bottom of this post for more information.


***



So, if you consider the NICU as being "in public," then my entire breastfeeding relationship with Acorn (all 3 weeks of it) was in public - every session, every day (well, ok, the two times a day he was allowed to breastfeed).

I considered it nursing in public - we were in a pod that housed 10 infants and their families, plus 4 nurses, and a never-ending stream of doctors, residents, and nurse practitioners, plus a lactation consultant.

I always found it funny that the nurses rushed to find screens to put up around the nursing moms - we were in a hospital, for goodness' sake, in a room where all of us were encouraged (sometimes to the point of badgering) to pump a the very least for our tiny babies. Every woman there had a pump set; every woman was expected to at least try to breastfeed...and yet it was still seen as a time and place where we needed to hide and cover ourselves, when every other part of our lives there were so very public.

I was the odd woman out, nursing a 4-month old who was still more fragile than the other 3-week olds in our pod. I was the only one there who had started with the intent of exclusive breastfeeding - although by this point we were already supplementing my exclusively-pumped supply. I was the only one there who didn't go looking for screens when we sat down to breastfeed - I sometimes turned my chair away from the rest of the room, but that was as much to keep my child's attention as anything else - besides, we had a window space, and I liked the view.

Our breastfeeding relationship ended when Acorn's respiratory status went downhill. I held out hope for another 3 months, pumping every 3 hours round the clock, with my supply decreasing weekly, but reached a point where he was not going to be able to eat (possibly for years) and I needed sleep more than I needed to make breastfeeding work. He's much better now, for which I am grateful.

But if we can't even nurse openly in a hospital, in a room full of mothers and babies who are all learning to breastfeed at the same time, what hope do we have for nursing out in the rest of the world?



Art by Erika Hastings at http://mudspice.wordpress.com/


Welcome to the Carnival of Nursing in Public


Please join us all week, July 5-9, as we celebrate and support breastfeeding mothers. And visit NursingFreedom.org any time to connect with other breastfeeding supporters, learn more about your legal right to nurse in public, and read (and contribute!) articles about breastfeeding and N.I.P.


Do you support breastfeeding in public? Grab this badge for your blog or website to show your support and encourage others to educate themselves about the benefits of breastfeeding and the rights of breastfeeding mothers and children.




This post is just one of many being featured as part of the Carnival of Nursing in Public. Please visit our other writers each day of the Carnival. Click on the links below to see each day’s posts - new articles will be posted on the following days:

July 5 - Making Breastfeeding the Norm: Creating a Culture of Breastfeeding in a Hyper-Sexualized World

July 6 – Supporting Breastfeeding Mothers: the New, the Experienced, and the Mothers of More Than One Nursing Child

July 7 – Creating a Supportive Network: Your Stories and Celebrations of N.I.P.

July 8 – Breastfeeding: International and Religious Perspectives

July 9 – Your Legal Right to Nurse in Public, and How to Respond to Anyone Who Questions It