Friday, 29 June 2012

Sod's law for babies.

Following weeks of Rukai sleeping through a full twelve hours at night, the one night I go to bed ├╝ber late he awakens after eight.  I arise after my own scant four hours and lo and behold he is a non-stop action man, like GI Joe on Red Bull and Laffy Taffy.  Like Bear Grylls at the top of a cliff with a buffalo carcass draped over his shoulder and ready to rappel.  The usual nap times fade into no more than fantasy, like the shat-in sleepsuits I've washed fourteen thousand times.  I am on the run all day. 

Where did I put that wine?

Also.

'Oh you are SO lucky!  February is the perfect time to have a baby.  You will be able to go out and about all summer.' 

This is what they said.  What they could not predict is that we'd have the worst June since records began and once we did get out, I'd have one of those kids who cannot handle big wind just yet and squirms around like a greased eel when I take him outside.  Then he lines up the 'air raid siren' shriek and fires away, clearing a path for 200 feet in every direction, felling trees, de-feathering pigeons.  I turn around and race back inside, lest the neighbors think I am torturing him.  I can only hope he grows out of it before it gets cold again.

Oh wait, that may be tomorrow.  It IS England after all.

And to hell with curry, it is WIND that surely is Britain's favorite food.  I say food because you really cannot help swallowing the debris that is constantly flying around in it.  So while lucky bubba gets packed up in his 'baby Ferrari' with the swizzy rain cover and enjoys a debris-free, mellow ride, I end up covered in small bits of bark, takeaway menus and week old copies of Metro.

But as you do, we have to go out sometimes.  Not really because we need to be anywhere but mostly because going out is the only way to get him to nap.  I tell you, that big spend on a swish pram was the best thing we did.  In fact, I may see if we can special order an adult sized one.  I'll hop in that sucker and get T to take me around this weekend cos I could sure use a nap of my own.

And.

The magic formula has turned 'le shit' the most remarkable shade of green.  Time to upgrade the wardrobe again since that will be disastrous if scattered across all those yellow clothes.  But then too, maybe it would turn into camoflauge.  Wait, not a good idea, particularly in THIS house.  I haven't bought the Lo-jack yet.

Finally.

Why is it that just when you've taken him out of the bath, applied spackle...er...cream, lovingly dressed and prepped for a cuddle, that a full day's worth of baby constipation decides it's time to make an appearance?  Followed by the most beaming, delightful grin imaginable from up the other end.

I'm pretty convinced he's laughing at me, I'm sure of it.  I must locate the baby phone where he's receiving the texted 'play book' from his pals.  They're in it together.  It's a plot.  It's got to be.

Somebody call the SAS, I think I'm going to need commando training for this.

Wednesday, 27 June 2012

They're just boobs again.

They're just boobs again.

Now, despite how appropriate it would be to apply that statement to the English national football team, I'm afraid I really am talking about boobs.

After our failure to breast feed and my only solution to express a bit, I'd been cursing the pump since day dot.  I went through three different pumps trying to maintain or increase my supply.  I sat in different rooms, different chairs, trying different food / drink combinations, all the while feeling like a methane-filled farm animal named 'Bessie' whose sole vocabulary word is 'moo'.  Not pretty.

Even uglier was as the supply kept dropping anyway, I started dwelling on the anger I had for all the tunnel-visioned midwives and postnatal nurses who were so eager to push breastfeeding on me when they should have been promoting breast MILK - any way you can get it.  Had they bothered to tell me to start expressing every three hours from the beginning we would have had a much better go of it.  Not to say I didn't try - good lord did I try.  But they all need a swift foot in the ass and a nice round of re-educating to identify where they again went wrong.

Anyway, although the pumping came into play late, it worked for four and a half months so not too shabby at all.  Unfortunately the supply started to dwindle and after trying to increase pumping frequency which was near impossible, plus trying the Fenugreek 'eau de maple syrup' fiasco I decided to throw in the towel.  When you work an hour at something for so little reward it becomes almost a joke.  Kind of like a mathematically challenged person doing a Sudoku.  Or doing crunches without cardio.  Or trying to pluck your own eyebrows into a nice arch.

Digressing again.  How unusual.  Or not.  These days it's all I can do to remember my name, where I live and that my teeth need regular brushing, let alone follow a train of thought.

But back to boobs, because that's really why you're still reading, right?  Yes, it was taking me an hour of pumping to express some measly 20 ml, which needed about 4 or 5 friends in the fridge before it was even remotely close to enough.  Then the trouble started.  The small amounts were starting to mess with Rukai's belly so much that he'd start off a feed completely stopped up, before the laxative effect of the breast milk would get his innards churning and gas bubbling away.  But it wasn't enough to finish the job, which made him rip into a shriek so loud it quite probably shattered space junk, after which he'd pass out on my shoulder and fart for the next half hour in his sleep.  My poor chicken.

He'd be ok when he woke up, blinking and grinning and oblivious and hungry and wind free.  But we'd spend the next two hours trying to recover our hearing and feeling so shit that there didn't seem to be any clear way to help the situation.

I tell you, it's a wonder I have any wine glasses left.  I mean from the shattering caused by a high note, but then again the drinking of wine has also been in play here.

In all truth, I do count us seriously fortunate that he hasn't been an incessant screamer from birth - the screaming out of our wee bubba has actually been so infrequent that it startles us into a frenzy when it does happen.  Combine that surprise upset shriek with his 'joy scream' that comes out during play - every one is like an alarm that keeps our 'fight or flight' reaction on red alert 24/7.

So we are freaking exhausted.

But the good news is, we've tried a new formula that for the past 24 hours has been a small miracle.  Rukai is content and napping, and I am able to sit still and observe all the housework I have been putting off while trying to solve the gas-plosion problem.  I am not typing one-handed with my Spectra 3 churning away beside me.  And I'm able to think clearly.

I clearly deserve that glass of wine.  You know, while I still have a glass to put it in.

Monday, 18 June 2012

Baldylocks and the three pills.

The crusty boo boo scalp invasion was getting too extreme, so our little man has had his first buzz cut.  The good news is, this enables me to apply Oilatum to his head and not simply wax his hair down like the Pringles guy.  The bad news is, old bubs isn't keen on head massage so he's becoming expert at a scream we have lovingly named the 'air raid siren'.

I can't seem to clear the cradle cap living in his eyebrows so I mentioned it to the nurse when he got his jabs last week.  She recommended - of all things - a specific nappy rash cream.  If that's the case I think I'll try one we have to hand first and see how we go.  But it's seriously getting to the point I have to apply so much cream to this poor child I may as well slop it on with a trowel.  I can hear it now: 

'Gee, for a half Asian kid his skin's really pasty white.'
'That's not his complexion, that's spackle.'
'Aha.  Well, you do great work.  If you get some spare time, you can come over and patch up the walls in my living room.'

On that same visit I mentioned to the nurse my C-section scar was a bit sore yet so she hunted down a couple antibiotics prescriptions for me.  Superb.  Just add those to the vitamins and supplements going in already and I can safely estimate a quarter of my daily caloric intake is in pill form.  And thanks to the Fenugreek I am starting to smell like waffles smothered in maple syrup.  I expect a pack of dogs to follow me down the road next time I go out.  Maybe I'll give Lady Gaga a call and ask for the meat dress just in case.

As for my own hair, well it's still falling out nicely (or not so nicely if you were to ask the drain how it feels about it).  The stuff that remains goes so quickly greasy you could quite probably wring it out and fry up some chips.  I haven't had greasy hair since puberty, so the mysteries of motherhood just keep on weaving their magic.  For my next trick, I'll grow a beard and four dozen skin tags.

Oh wait, I think that already happened.

This week's top challenge is sleep regulation.  Rukai loves to have a huge nap just before what we hope would be his last bottle of the day.  Of course this means he's wide awake when it's time to go to bed.

So I've tried twice today to put him in bed when he gets dozy mid day.  So far so good half hour ago - no sirens, just two servings of a half-hearted whine that faded when he jigged I wasn't coming back for a while.  Must be practicing for his first day of school already.  I swear he plots this stuff when hanging out with his little pals.

So while my squidge rests I'll keep one eye on the baby monitor and celebrate this quiet time just enjoying the silence.  Not much of that around here these days and it's a complete slice of heaven.

The proof, the whole proof and nothing but the proof.

We finally had our genetics appointment.  Four months waiting, expecting that all-important proof, expecting to see something on paper that leveled us out, stopped us spinning, gave us direction.

Instead we got more of the same shit, different day.

I really am beyond flabbergasted and haven't had the heart to report back.  My faith in human decency is officially in shreds.  I don't want to be hard but...well, it's getting too hard NOT to be.

So no proof, but what did we get?  A first question of 'how did you reach this point?'  Delivered with a false smile and a hefty dollop of full-fat pity.

Um, if you don't know I'd really like to have my morning and our four month wait back; we have better things to do than dilly dally with you when you clearly do not give enough of a toss about us to have done a little research.

She gave us much more nothing.

The offer to view a chromosome map but not that of our son.  The patronizing instruction to 'just keep loving  him and caring for him like any other child'.  The look down her nose when we expressed our optimism that Rukai would be breaking boundaries, exceeding expectations.  'You poor, deluded, sad bastards,' she was thinking.  We both felt it.  Felt it hard. 

I wanted to clump her.  I raised an eyebrow, smashed my lips together, crossed my legs and folded my hands in my lap instead.

I asked her how many of his cells they tested, wondering if they could have realistically ruled out Mosaic (no, in case you're wondering).  I asked where the proof was.  She handed me the single sheet of paper we'd seen before that contained little more than a line of text summarizing the actual evidentiary test result.  It was like being told you need a hip replacement and not being shown the MRI because 'you wouldn't understand what you're seeing anyway, you're just an ordinary person and we are doctors practicing medicine.'

Indeed you are.

One lousy line of text, shorter than the entirety of this post, to define the condition which will shape our son's life.  She told us they probably don't keep these records because 'the doctors wouldn't find much use for them.'

What part of 'it-isn't-about-the-fucking-doctors'-needs-it-is-about-the patient's' are they still not getting?  I can not believe she used this as an excuse for discarding a test result which - on any plane of existence - should be made available to the person on whom the test was done.  How is this unreasonable?  I despair.

'They may not have found any use for it, but we would have wanted to have it,' says I.

'Most parents don't ask for it,' says she.

I couldn't even say 'but we are not MOST parents.'  I couldn't say it because at that point I realized that the true path we are on now cannot be shown to us by someone who's read a lot of books and hung a certificate on the wall.  Rukai will show us the way.  There is no other.

So instead I chose to walk away.  In my head we'd already left but still we kept conversing with her.  Still we finished up the meeting.  Still we left with a cordial goodbye and that lousy line of text.

She promised to ask the lab if they happened to keep the records so we could get a copy.  I won't hold my breath.

She asked if we had any further questions and T summarized the situation so perfectly: 'the only questions we still have can't be answered.'  Time is the only thing with answers and for it, we must wait.  And chase.  And hope.  And live.

Tick tock.

Monday, 11 June 2012

Fangs for the mammaries.

We heard a persistent alarm going off the other day.  It sounded a bit like unnh-nnnhh!  Unnh-nnnhh!  Unnh-nnnhh!  I looked outside, thinking some cats may have been shagging in the garden but it turns out the sound was coming from our son.  Wait a minute - a whiney baby?  Who stole ours and left us this one?  Bad enough it's been pissing down rain for a thousand years, now this!?

We frowned at each other and went through the baby emergency checklist:  check nappy, check feeding schedule, check when he last shat, check if he needs a burp or fart, check body temperature, check the house temperature, check whether he's bored, check if he needs a cuddle, check them all again.  Check that we checked everything needing checking.  Check that we checked them all again.

Nothing. 

Unnh-nnnhh!  Unnh-nnnhh!  Unnh-nnnhh!  It was the infant equivalent of 'Arewethereyet? Arewethereyet?'  But we couldn't manage this one with a juice box, a handful of Goldfish and a Disney DVD.  Damn.

We were baffled, until...hangonaminute, there is drool.  There is drool, and there are bubbles.  There is a fist constantly being chewed.  There is a history in the past week or so of chewing on the bottle instead of slurping from it.

Ok, let me check that lower gum and see if - wot hey, there seem to be nubs!  Man the torpedoes!  All hands on deck!  Full speed ahead and get the teething gel!  And Daddy's magic pinky took action and lo and behold the alarm fell silent and bubba went back to gurgling and cooing and staring at the fan, giggling.  Phew.  Magic stuff, that Bonjela.  I wonder if it works on headaches?

Anyhoo, I guess this means the likelihood of Rukai ever officially taking to breastfeeding proper is now pretty slim.  So it's back to the pump for me.  (Damn the pump!)  Breast may be best, but we're growing teeth in there.  This is a whole new ball game.

Teeth.  Hmm.  Teeth chew.  Teeth require brushing.  Teeth hurt whey they push on gums.  And wouldn't you know it, mommies really hurt when they hear their living baby alarms going off.  I'm such a softy when I see him upset - this will not be easy.  Let's hope they aren't bothering him on Wednesday when we go for Jabs, part III.  If so, I may have to buy some earplugs, a carton of Kleenex and a twelve pack.

Also.

Our little weed last measured at 60 cm and seems to have grown significantly since.  That's two whole feet long.  That's too long for the 3-6 month sleepsuits we bought about ten minutes ago, so I've had to stretch them to within seconds of popping.  I'd cut the toes off and leave him in socks but the weather is so bleak I want to keep him a bit bundled up.  This is really cramping his summer style and efforts to chew on his toes.  He still can't master the leg lift but lo and behold we keep practicing.  Then too, if the weather doesn't change soon he may forget he has toes.

The 'Great Big Toe Grab' goes hand in hand with his other new favorite game, which I think is called 'Sit me the hell up already' but is far more difficult with neck muscles that don't quite cooperate.  He lasts about five minutes doing tummy time - hates it like I hate the rain - so he hasn't mastered the upper body essentials.  But he damn sure is trying.  You can take that particular 'trying' and define it in any way you'd like.

So every day for about three weeks now, we practice.  He grabs my thumbs and when he pokes his head forward and gives a tug, I sit him up.  He bobbles around looking ecstatic like he's just won Olympic gold and I lie him down to rest.  Lather, rinse, repeat.

Let go of his fingers to give him a rest too early and he screams bloody murder until I hold his hands again.  And sometimes he wants to go straight up to his feet - those legs are powerhouses compared to the upper body and by God he wants to use them.  Miss that cue and whaddaya think?  He screams bloody murder.  Do it right and he's the world champion in the Gummy Grin event.

At this rate, when he grows up he's either going to be a cheerleader or the lead singer of an ACDC tribute band.  Better keep those earplugs handy.

Friday, 8 June 2012

Perception and conception.

Let us reflect.

After a pregnancy made difficult and unenjoyable by a slew of rubbish medical professionals, our only child was born with Down's Syndrome.  Throughout the better part of that nine months, a diagnosis of gestational diabetes put me under such close scrutiny by these people that it felt impossible to breathe without condescension and interference in my life.  Where most pregnant women have about 3 antenatal visits in the UK, I believe my final tally was somewhere around 19.  Following the birth, not one of these people called to check up on how we were handling the diagnosis but they did send their midwives around to badger me about breastfeeding and fill in more forms.  Guess they don't have a checklist for 'giving a rat's ass about your patients'.

Amongst the stupidity, they fault my son's low-ish birth weight on DS yet haven't ever bothered to ask about my diabetes diet, thus taking into account the very relevant fact that I only put on 5 pounds during pregnancy and ended a stone lighter.  They made errors in case notes that will go into permanent files uncorrected, particularly because I have to beg them for copies of reports.  And still they continue to look and speak down their noses at us.  One genetics appointment left next week and hopefully we can wash our hands of them indefinitely.

Unless you have been through this you cannot begin to imagine what it was like.  It has been particularly agonizing to a free spirit like me who does not accept being told what to do on any level.  Despite how well meaning people may be, I really don't want advice unless I ask for it, quite simply because I have the sense to actively seek out all the information I need.  I am 40 years old with a long list of experience behind me.  I am well read.  I am well educated.  I am well informed.  I have common sense and I deserve to be treated with respect and allowed boundaries.

If you don't, watch me get very angry.

I have been angry for a long time and frankly I'm sick to the back teeth of being angry.  It doesn't suit me.  I wish people would back off already and just let me heal.  But now with this diagnosis our poor boy is in for medical scrutiny.  We are in for a life under the microscope - 'are you doing a good enough job?', 'will you raise your child properly?', 'do you need some extra help?'

We are and we will and we don't.  Not just now.  If we do, we'll ask.  Please give us some credit.

Beyond us, Rukai needs LOVE, not help.  Beyond that, we need people to understand what a shitty hand we three have been dealt in that medical bods are forcing our entire extended family to worry about a ghost.  Because as you recall, Rukai is healthy today and DS 'symptoms' are not guaranteed to appear.  He is developing incredibly well and I'll get back to that on a day I'm feeling a little more upbeat.  Today is blustery and so is my heart.

Now anyone who has children (and probably most who don't) know that new parenthood is difficult enough without all of this additional crap piled on.  Of course my husband is going through the same stress, so after we talk to each other, where do we turn next?  He can switch off.  I haven't got that ability.  But I CAN write.

I've been writing since I was 8 years old.  Back then it was mostly about who I had a crush on but now, it's my lifeline.  Now it's the only way, barring exercise, to get this stuff out of my head.  So as a means of working through this pent up stress, worry, anger, frustration - but more so as simply a way to COPE with our son's diagnosis - I began to share tongue in cheek musings with friends and other new mothers from my antenatal class on Facebook, all of which I've transferred here after those who'd had a good laugh reading it encouraged me to blog.

I began posting in this very public forum with the hopes that the conversation will continue to help me cope, continue to help my new mum friends laugh and perhaps someday help someone else out in the world who may be facing a similar experience.  God, I wish I had something to read that made my belly quake with laughter much earlier.  So I post with humor because humor is what makes me tick.  Humor is what heals me.  I post with humor because my own mother who is 4000 miles away when I need her most taught me that sometimes it's better to just laugh when you most feel like bawling your eyes out.

All that said, aside from heartfelt comments about the worries we are having as parents, this blog is intentionally satirical.

If anyone reading takes offense to anything I have said to date, I am truly sorry that you clearly do not know me well enough to know it means nothing.  I am not sorry for poking fun at my own life and having a laugh with my friends.  I am not sorry for what I have said here.  And I hope that never in your own life will you have to directly face something this difficult and have to try and find a way to deal with it.  The shock of being given such a diagnosis without your husband at your side.  Seeing the look on his face when he finally came into the room.  Standing in the hospital bathroom after your first shower having tried to scrub off the pain, head spinning, wailing with grief and lost dreams and denial and fear.  Trying desperately to grasp what it all means, what you will do next.  I am only sorry I did not see Rukai's possibility at that point as it's only now with that knowledge and the written word that I heal.

I'm afraid I cannot censor my feelings and because I share them, you will find them here, warts and all.  Some may see this as foolishness, others as courage.  I see it as survival.

_____

On a much lighter note, I believe our sweet boy was conceived a year ago about now.  So I will end this post by turning my attention back to celebrating him.

Friday, 1 June 2012

This thing starts with 'ick'.

The zebra book won me a full out giggle today.  And here I thought it was pricey when I bought it - seriously, nine quid for a seven page cardboard book?  But great googly moogly, I'd have paid nine grand for that giggle.  I think I 'get it' now.

So it seems Rukai's love of black and white firmly charges on, which means dalmatians and pandas are very much next in line.  Now that I think of it, I suspect Ansel Adams photos and old movies would fit in there somewhere.  Then too, so would prison uniforms.  And Michael Jackson.  And Goth.  Good lord, all this from a zebra.  Maybe I should return it and just wave a copy of War and Peace at him.

Anyhoo, I thought I'd start setting up an evening routine by showing him the book just before his pre-bed Oilatum greasing - thanks to our local pediatrician we now know that 'crusty boo boo' has a name: Ichthyosis, which should be manageable by keeping the skin well oiled.  Grand.  Just what I wanted - something else to research.  I should get a fellowship or something, no?  Nobel prize?  Free scratch card?  Ok, at least a cold pint?

And how appropriate this thing starts with 'ick' - a skin condition named after the scales of a fish.  Peely brown patches caused by a build up of cells that don't flake off as they should do.  Although looking at it, I'm really thinking less Nemo and more giraffe or lizard.  Still, I have to laugh.  How appropriate for a kid from the dirty water pool, a kid who we call our little dragon baby, to have scales.  You couldn't write this.

Oh wait, I just did.

And here I thought it'd clear up over time, but it seems more likely to be something that will stick with him and ensure he's constantly in a state of greas-ed-ness.  I guess the bright side is I can stop trying new laundry detergent now, since that doesn't seem to be the cause.  And of this, I'm truly relieved.  I can imagine I'd have eventually run out of name brands and resorted to trying crazy potions off ebay made from croton oil and hydrolized yak butter to nil effect.  Appears as if this doctor visit malarkey has its benefits.

The good news is that, aside from dragon-itis of the skin, our wee man has once again been signed off with a smiley 'he's doing fine'.

Yes, he is.  Crusty boo boo, fire in the belly and all.