Monday, December 21, 2009

Big, adult decisions.

I took Owen to the eye specialist this afternoon to get his eyelids assessed.  When we went to the opthamologist a couple of weeks ago she mentioned that in addition to his optic nerve pressure there was also a possibility of his eyelids obscuring his vision.  His eyelids have never opened very far, known as a condition called Blepharophimosis; it's indicated by small eye openings horizontally as well as verically, a low nasal bridge and some other stuff.  Apparently it's quite rare.  How lucky for us to have won THAT lottery.

The surgery involves putting in a small piece of silicone tubing into each eyelid crease, then attching these to the muscle above the eyebrow which controls the opening and closing of the eyelid.  Apparently to do this in both eyes will take several hours and he'll have black and blue eyes when it's over.  Whooopie.  He'll also have to stay overnight at CHOW.

Now the big, adult decision we have to make is whether the major benefit to this surgery is going to outweigh the major drawback.  Owen will certainly be able to see better and he won't have to tip his head back all the time, but on the othe hand... he will no longer be able to close his eyes all the way.  Ever, unless we completely reverse the surgery.  So while he will still be able to sleep, whoever is looking after him will have to make sure they put ointment on his eyes during the night to stop them drying out.  Yes, it's inconvenient for us, but what isn't these days?  No, my concern is him having infections in eyes that can't blink properly and in his general appearance as he ages.  Can you imagine sleeping next to your boyfriend for the first time, only to discover his eyes don't close?  Freaky.  Apparently his eyes will be fully open immediately after surgery and will then learn how to close partially as time goes on.  They won't ever close all the way though.

It's at times like these I feel at a crossroads.  I want to ask Owen what HE wants, but that isn't possible.  When he was tiny we made the decision to place a G-tube, but I've regretted this ever since and have wondered if his oral aversion to bottle-feeding was a direct result of it, not in spite of it.  And now we have another decision to make that could affect his development.  We're being told it will help him, because the head-tipping is so acute it's preventing him from learning how to sit and stand, but how do we know this?  I mean, we were told the G-tube was a must-have, but now I'm not so sure... what if this is the same thing?

Even though Mike and I talk about this stuff, because he's not at these appointments with me I often feel very alone.  Very pressured, very alone and sometimes very unsure.  I can't wait for the day Owen is old enough to tell me what HE wants.


Thursday, December 17, 2009

The Truth About Online Anorexia

So I sat down by myself tonight as Mike had his work Christmas do, and I stumbled across this documentary on BBC America. (It was an ITV programme originally but BBC America likes to mess with my mind like that.)  Called The Truth About Online Anorexia, it was presented by Fearne Cotton and followed her investigation into the world of online Pro-Ana websites.  I daren't link to any here for fear of prompting someone else to actually visit one, but rest assured they are a grim sight.

I'm sure countless other feminist bloggers have already written about this documentary as it was aired in the UK back in April, but I just feel I need to put something down about it too.  Imagine the scenario: here I am, sitting on the couch having just battled for the last two hours to get my son to initially take his food, and then to assist him in keeping it down.  I'm scoffing a rather scrummy frozen cheese pizza (I like to add sweetcorn, personally, although I do get rather strange looks when I do it in public) and I'm sipping on a caffeine-free Diet Coke (I like the taste, and I do acknowledge that this makes me odd).  Then I turn on this show about how eating is BAD BAD BAD and being thin is GOOD GOOD GOOD.

To say I was upset is an understatement.  After half an hour I looked at Owen, and I just burst in to tears.  I looked at his chubby little cheeks and his lovely fat arms, and I thought about how so much of his life is completely and utterly controlled by food.  He is at his happiest, like nearly all children with GERD, when he is not eating.  When he is eating, he's miserable.  He feels gassy, over-full, uncomfortable, nauseous, like he has heartburn, and I imagine it stings like hell when the contents of his stomach are violently projectiled out of his mouth and nose.

But we battle it, he and I.  I work like hell for three out of every four hours to make sure his food stays put.  It is a tribute to my own perseverance, grim determination and sheer bloody hard work that he is exceeding every single doctor's expectations and has grown as much as he has.  He has gone from losing weight as a newborn and dropping off the growth charts, to an astonishing 50-75% percentile placement.  And that's if you don't even account for his prematurity and knock five weeks of his age.  It's the hardest, most draining job I've ever had and I consider it a successful feed if he keeps down at least three quarters of his food.

So for me to watch this documentary and to hear about women denying themselves food to try and reach some unattainable perfection was so, so sad.  I felt many things.  I felt, initially, sorry for these women.  Then I got angry and I felt that I'd never heard of anything so fucking selfish in all my life.  You don't eat DELIBERATELY?  You starve yourself?  You are so ungrateful that there are people working hard to put food on your plate that you consider it to be disgusting to put it in your mouth?  I've never heard of anything so repulsive.  Don't you know that there are children out there who don't HAVE food to eat?  That there are children out there who have all the food they could want, but who can't or daren't eat it because of the reaction their little bodies have to it?  Don't you know that when your child can't or doesn't want to eat, it is one of the most frustrating, upsetting, guilt-ridden emotional rollercoasters a parent can go through, and they go through it every moment of every... single... day...?

This train of thought continued until the show was over, I'm sorry to say.  The idea that you would work so hard as a parent to feed and nourish your child, only for them to deliberately damage their body and make themselves ill - even to die from it - just made me sick to my stomach.  I even ate my pizza more quickly because of it.  Then, after a while, I just felt sorry for them all again.  And I thought about my own issues with food and eating, and how nothing is ever as simple as it seems.

I've put on A LOT of weight since my pregnancy.  In part it's due to a lack of exercise (I'm stuck on the couch feeding Owen so much that it's really hard to get out), partly with what I eat (see the pizza example, above), and partly the depression.  So in way, I'm damaging my own body by not giving it the healthy, nutritious stuff it really needs - is this worse?  I might be eating, but I am also sticking two fingers up at the work my parents did when I was a child to keep me healthy and growing.  I came to the conclusion that the only way to be a positive role-model to Owen as he grows up is to have a healthier relationship with food.  I need to stop using it as a crutch when I'm angry or sad, or when I feel as though I deserve a "reward".  I need to use that hour before the next feed to walk around the house, or to stick the Wii on and jump up and down.  Hell, I need to stop going to Target and buying candy just to get out of the house.

So, starting tomorrow, one week before Christmas, I'm going to eat healthily.  We already have many, many healthy items in the fridge and I think it's time to eat them.  I cannot let my depression or any other excuse rule my life.  If I want to change, the only person who can make it happen is myself.


Tuesday, December 15, 2009

The way we think.

The other half and I got into a major, major fight on Sunday over something so small and petty I can't bear to think about it.  What I do have to remember though, is how completely irrational I was and how, even though I could hear the words coming out of my mouth, see how much I was hurting him, and know I probably looked and sounded like a teenager, I wasn't able to do a single thing about it.

It's mad, this depression.  It makes you do and say things you'd never have dreamt of doing before.  After the fight, when things were calmer and we'd agreed to talk about what had happened, I asked Mike whether he liked me anymore.  He said no.  He told me he loves me still, but he doesn't really like me much these days.  And who can blame him?  I'm a complete misery and I pick on him mercilessly.  I'm on a deadline with a copyediting project at the moment, so I asked him to take care of Owen and a few things around the house on Sunday so I could work in peace upstairs.  At 1pm he was still playing video games, so I sat on the stairs and reminded him of our agreement: he works during the week, I work weekends.  He apologized and once I'd gone back upstairs he got to work.

The thing is, Mike's brain works differently to mine.  In my mind, the things we needed doing were for the benefit of our Book Club guests coming over that night.  That meant clean bathrooms, vacuumed floors and tidy rooms.  In Mike's mind it meant ripping up the rest of the kitchen linoleum because he was embarrased it was still there.  Which created more mess, which meant everything was still in transition at 5.30pm when I needed to be in the kitchen preparing food.  So we fought.  And I was irrational.  In fact, I was completely off my fucking head because he asked me to get something out of his car (a shop-vac, brought home from work to vacuum large splinters and particles safely), and I STORMED out to get it, STORMED back inside, threw the thing on the floor and slammed the door behind me.  The reason?  I was cooking and even though he was shirtless and shoeless and it was below freezing outside, I didn't want to be interrupted.

If I weren't depressed, I would never, ever have behaved that way.  Getting something out of the car to help out my partner would have been second nature, and once everything had blown over and we were like old times yesterday, I would have done it for him again in a heartbeat.  But when I'm in that moment, and the cloudiness is fogging my brain, it's really, really hard to see and behave clearly.  I have no idea how to change things, either.  It's like I'm watching myself on a screen somewhere, half the time.  I know I'm hurting Mike and I know I'm simply terrible to live with, but I just don't know how to stop it.  How do you stop a runaway train?


Thursday, December 10, 2009


Well, the kitchen's halfway there!  All the cabinets are in, so now we have to have the countertops people round to take the final measurements (why they couldn't just take the specs from the cabinet order, I don't know.  It's not as though anything's bleedin' changed) and get those ordered.  That should take another couple of weeks, but Mike cunningly kept hold of the old wooden tops so we can balance them for something to chop our veggies on.  We are still without a sink in the meantime, but at least it's something.

The cabinets are SO PRETTY!  I love them, I do.  I think I might have chosen to sleep in the kitchen tonight if it weren't for the state of the half ripped-up floor with its dangerous spiky nails everywhere.  Seriously, I love the design that much.

The nurse came over today to give Owen his RSV shot and to take his vitals.  The boy, at six and a half months, is 27" long and weighs 18lb 11oz!  He weighed 5lb 14oz at birth, so it's quite remarkable.  In fact, since his last weigh-in less than a month ago, he's put on nearly two whole pounds.  What a superstar!  He has also learnt the "L" sound and is currently rolling happily around on my floor under the Christmas tree practising it.  It truly makes my heart sing to see him so happy, because for so much of the rest of his life he's so damned uncomfortable.

I took him to the neurologist today but he couldn't tell me much as we're waiting for the CT scan to happen tomorrow.  He seemed surprised that Owen's myoclonic jerks were under control, given that he has optical nerve pressure and restricted head growth.  Apparently seizures and seizure-like activity should actually increase with inter-cranial pressure, not the other way around.  He had no idea if my theory about pressure = migraines = extra vomiting could be accurate, as there are lots of ways pressure can manifest and until we see the results of the scan we won't know whether the brain's control site for vomiting is affected.  So we'll sleep on it and find out what's happening tomorrow.

OH!  And I feel very good about Owen's growth because a few times since his last weigh-in we took him down to four feeds a day (when we were travelling, for example), and I was very concerned that he wouldn't be getting enough nutrition if we did it too often.  But he did, and that makes me feel good.  I think the extra solids are really helping in that respect.



Tuesday, December 8, 2009

Snow, kitchen and nails

It's snowing.  Again.  It looks pretty, but it's a bastard to drive in.  And this is the first year we've had to shovel our own driveway clear of it, which is only slightly less extruciating than digging your car out of the two feet of drift the snow plough just pushed up against it in the apartment building car park.  While pregnant.  And it's -30F.  And there's been an ice storm, which has stuck said ice to your windscreen an inch thick.  And no-one sells de-icer, so you have to scrape it off in two minute bursts, broken up only by warming yourself up in your car for another ten.

Ah yes.  The famous Wisconsin winters.  At least this year I don't have to wake up two hours early to get the car prepared to leave for work on time, and thanks to my insistence on purchasing a house with an attached double garage, I never have to scrape my car again.  I do, however, have to think about Owen and whether valet parking at Children's Hospital is truly a lazy girl's game or a stroke of genius.

Speaking of CHOW (I love that acronym), I took the babba up there today for his CT exam.  He was a perfect angel and slept all the waaaaaay... until they switched on the machine and strapped his head and arms down.  Apparently that's not very comfortable compared to my left shoulder, and he let us all know about it.  He screamed so much they've had to postpone the test until Friday, when he can be sedated.  So, what should have been a half hour scan has now turned into a full day in the surgery clinic.  Naughty baby, but I can't blame him for being scared.

In other news: our kitchen is being installed tomorrow!  Yaaaaay!!  Cannot.  Bleedin'.  Wait.  I HATE our old kitchen and I said when we moved in that other than Owen's nursery, the kitchen was the first room I was going to work on.  It's just such an eyesore, which its orange (ORANGE!!) cabinets, ivy print wallpaper and fake wood laminate countertops.  Eugh.  At least from tomorrow we'll have beautiful cupboards, even if we have to wait a bit longer for the sink and countertops to arrive.  In the meantime I consider ourselves very lucky to have a downstairs bathroom to wash Owen's stuff in.

And finally:  I must be getting a bit stressed at the moment because I've had to resort to painting my nails with Stop 'n' Grow for the first time since I was sixteen.  I'm so ashamed. 


Friday, December 4, 2009

So tired... so very, very tired...

Well, it seems as though life is out to bite me in my abundantly-sized buttocks, because we've had some more bad news about Owen's eyes and brain.

Ok, so here goes:

Owen's eyesight is actually okay. He's long-sighted but apparently that's common at this age and he'll outgrow it. No, the problem is a little more difficult than that. Firstly, his eyes only open a tiny amount because the muscles in his eyelids are underdeveloped. He's now learnt to compensate for this by tipping his chin up, which is very bad for his neck, back and shoulders, and if we don't sort out his eyelids he may develop a permanent disability because of it. He needs corrective surgery between now and May to insert silicone tubing into the upper eyelids to strengthen them and help open the eye up further.

In addition to this, the doctor carried out a refraction on his pupils and found something very, very scary. The optic nerves in both his eyes are so inflamed that if we ignore the problem it could become an emergency. Owen's skull is fusing prematurely, which means it has essentially stopped growing and expanding. His brain seems to still want to expand though, which is putting an extraordinary amount of pressure on the skull and the backs of his eyes (hence the inflamation of the optic nerves). Now, normally I would just sigh and think, "Oh, yet another hurdle to get over", but today the doctor frightened me by the stress and importance she was putting on his condition. She seemed frightened herself.

Owen will almost definitely need surgery to open up the spaces in the skull he's supposed to still have, but he may also need a shunt put in to the brain cavity itself to drain excess fluid and relieve pressure in between surgeries (he will need several over the course of his life, until his head is adult-szed). If we do nothing and the pressure continues to grow he could either lose his sight, experience brain damage, or in some severe cases, even lose his life.

So it was not a pleasant way to spend my morning and I got very upset about everything.  This poor little boy is experiencing headaches as a result of all this, which makes me want to just pull him into my arms and cuddle him very tightly forever.  I'm not even sure I'm allowed to give him any pain relievers as they don't routinely recommend giving them if there's no cause.  Sigh.  What on earth am I supposed to do?

Thankfully we have managed to get his CT scan moved up a week, so if they find anything on Tuesday that's serious enough to need action immediately, we'll be ahead a week.  Today I've been making phone calls left, right and centre to push appointments up, get reports faxed to new specialists and generally try to make life easier for Owen sooner.  I think it's going to be a bumpy road, folks...

Oh, and I think I'm anaemic again.  Booooooooo.


Wednesday, December 2, 2009

A few new ideas

We went away to Minnesota for Thanksgiving last week and it was really nice for Owen to spend time with his extended American family (the fact they can occasionally drive me bananas is neither here nor there).

While we were out there I basically stopped wearing make-up.  For Friday, which was when Owen got baptised, I put on some warrior paint again and I actually enjoyed it.  It's made me stop wearing it since we got back (except for a touch of concealer, because I'm still vain and embarrased about my teenage-style spots) and I'm determined to keep it up.  I like to think that while I may be plain under my eyeliner, actually it doesn't matter to anyone but me.  And then, when I do put some slap on again for a special occasion, it feels like a treat and I'm happy to devote some time to it.

I think the thing that bugs me the most about make-up is taking it off again at the end of the day.  I absolutely HATE getting ready for bed because I have to use the loo, take off my make-up, take out my contact lenses and clean them, brush my teeth, put on lip salve because the teeth-cleaning dries them out, put on hand lotion because washing my hands after everything else dries them out, and finally get into my pyjamas.  This all usually takes place shortly before midnight because I forget to do everything before Owen's last feed of the day... SO... if I can skip taking off the make-up because I didn't put any on in the first place, all the better.

It's incredibly emancipating and I reckon I'm going to save a few pennies too.  :)

In other news, I spent many an hour talking to my brother-in-law last week and we got into a very interesting discussion one night about Catholicism.  As we were talking about the concept of Original Sin (it having been Owen's baptism earlier that day), a theory occured to me.  Forgive me if someone else has already come up with this, but it really did enter my head entirely on its own.

Before women's reproductive systems were really understood, women were considered "dirty" and "the other" because they bled once a month.  (Misogynists still believe this today, but that's because they're idiotic trolls and not necessarily because they're uneducated.)  Now, the process of childbirth is also very messy.  It's often primal and the experience reaches into the very core of a woman in labour in a way that no other experience can.  It's animalistic and private, and when your child emerges they are covered in white goo, or blood, or even their own bowel movements.  They snort and they drool and they cry, and if you've never watched a birth before you'd probably be very surprised that babies don't emerge all clean and dry and swaddled in a receiving blanket.

So it occured to me that because children come from a place that is traditionally misunderstood and unclean - being the inside of a woman - the founders of Catholicism decided that not only did the outside of the baby have to be washed when it was born, but also the inside needed cleansing too.  Hence the idea of Original Sin.  Seeing as humans cannot reach the inside, or the soul, baptism serves that purpose.  Yes, Jesus may have been baptised by John, but the concept of Original Sin didn't emerge until hundreds of years later, when the women of the Bible had been all but erased (see the virgin/whore dichotomy throughout) and men could really get to twist its words.

Well, that's what I think, anyway.  Original Sin is essentially misogynistic and I'm not buying into it.  Owen's baptism was NOT Catholic and it had no mention of such nonsense.  My beautiful baby boy would have gone to Heaven whether he'd been sprinkled with holy water or not, but now he gets to embrace his faith fully and celebrate it with his family.

Original Sin can kiss my arse.