9. I is for Idea

I have an idea: I should go to bed, instead of making up some drivel no-one wants to read.

Night night!

Tina.

I'm so tired I could...

thump.

That's the sound of my head hitting the pillow this afternoon for a well-deserved nap... or rather, it would have been if Little O hadn't been such a godawful ratbag and woken up time and time again to scream the house down or throw up.

I bloody hate Fridays.  Traditionally Tuesdays were my least favourite day of the week because while you can get a good nights sleep over the weekend and charge your batteries for Monday, there's no such opportunity for Tuesdays.  You've still got to get up and have a day of misery at work, but you're running on less sleep and more angst than the day before.  It's traditionally been a bit shit.

But now Fridays are a bit shit.  I'm just so tired and fed up with being forced to be stay-at-home-mom that I spend the whole day watching the clock and waiting for my husband to get home.  I had to get my sorry arse out of bed early this morning to take Bob to the vet for some vaccinations, so I prayed Little O would do the decent thing and let me sleep as long as possible... no such luck.  He woke up AS SOON as my husband left for work at 5.45am (a common theme, and I feel the two aren't entirely unrelated) and threw up, did a poo, then yelled at me to come and clean both messes up.  And of course I couldn't get back to sleep after that, so I was all kinds of moody at the vet and have continued to simmer and seethe ever since.

Little O is just driving me mental.  He's my favourite person in the whole wide world, which is why when he acts up I get a bit demented.  I feel like he's deliberately pushing my buttons( which of course he isn't), and sometimes when he cries or coughs or poos and MAKES himself throw up it feels really personal.  It feels as though I'm failing him somehow, and he knows it.  We have a procedure next week to try Botox injections into Little O's stomach.  And an endoscopy.  And a contrast study.  And anaesthesia.  And all kinds of other bollocks that I'm too tired and miserable to discuss.  I just want something to change.  I want the doctor to point at a screen, go, "Oh look!  That's the problem!", and fucking fix it.  Little O and I have been dealing with this for 15 months now.  It isn't fair.  MAKE THIS REFLUX GO AWAY.

I was at the gym yesterday doing a Zumba class, and right slap bang in the middle of some kind of ridiculous twisty move, two things happened.  One, I felt a rib go 'pop'; and two, it struck me how pointless everything else in my life is until this reflux gets sorted.  Why the hell am I investing my time and energy into an extremely camp exercise class, when my child is at home throwing his guts up every two hours?  My mother wants me to go and visit the UK in February with Little O.  By myself.  For 'a break', as she put it.  Yeah, right.  Because travelling for nine hours on a plane with a baby who won't stop throwing up will of course be 'a break'.  That's it's very definition.  Don't get me wrong: I don't mind going to the UK and taking a small child with me, but I don't want to do it alone.  It took all the strength in both of us to keep calm and carry on when my husband and I flew over at Christmas, and it took even MORE strength in me to do the same in Seattle.  It's just different when you're by yourself, and it's hugely different when you're dealing with a baby with special needs.

Still, Sunday beckons, and with it the enticing invitation to appear on BBC Radio.  I'm naturally a night owl so I'm actually really, really looking forward to drinking loads of Diet Coke and staying awake until the wee small hours.  And I'll have a fantastic, legitimate reason for poking my husband to get out of bed in the morning to deal with Little O's vomit/poo/screaming, because I'll have been working until 3am.

It's amazing that I consider that 'a break'.

Tina.

Clingy... like cling film...

No idea where this has come from, but Little O has officially decided he's a Mama's Boy.  Well... yes, actually I do know where it's come from because I spend almost 24 hours a day with the chap, but this latest desire to be-with-you-Mama-all-the-time-where-are-you-going-don't-leave-me-waaaaaaaaaaaaah! is somewhat unexpected nonetheless.

Little O has never shown any signs of being clingy towards either me or Mike until recently.  I have always attributed this good fortune to several factors: a) he was in the NICU for three and a half weeks, so apart from the 10-12 hours a day I was up there by his bedside, he had to get used to not being around his parents pretty quickly; b) he spends a lot of time with therapists, doctors, nurses, and other 'important' people, so being handled by strangers seems very normal to him; and c) I'm always with him!  He has never HAD to be clingy, because he's always been assured that even when I leave him to shower or make some lunch, I'll be back very quickly.

I've been a member of the local gym for two weeks now and I'm starting to get a bit fitter.  One of the reasons I keep going back (been six times in ten days so far) is not that I'm immune to being lazy or sore, but that you have to book childcare 24 hours in advance.  They organise their staffing ratios around how many kids will be there, so if you fail to show up they charge you anyway.  It's only $1 a time, but it's MY $1 and I want to make use of it!  So I've started scheduling gym sessions for 10am fairly often, and Owen has been attending childcare every time.  Recently he's begun to cry... not when I leave him... but when I return.  It's as though he's just figured out I've left him for a period of time and he wants to let me know he's annoyed at me.  He's also started crying when I leave the room he's in at home, even if it's only for a few seconds.  I think being separated from me at the gym is started to affect him, and he's getting concerned that I'll be leaving him for longer and longer.

While I think it's rather nice to be needed (and I do enjoy the fact that a kiss and a cuddle from me can calm him instantly), this has had a rather unpleasant side-effect.  Little O has started to nap during his lunch, which means he's tube fed for a few hours while he sleeps.  Now, putting him in to his bed at nighttime is never usually an issue, because he's tired and it's dark, and I sing to him and talk to him before closing the door and going downstairs.  It's exactly the same routine, every night, and he's reassured and comforted enough to just lay his head down and send himself off to sleep.  Naptimes, however, are sporadic and stressful, and he's awake enough to think, "She's not coming back.  It's daylight and I don't want to be alone", so he's started a pattern of sleeping for ten minutes, then waking up and yelling, then being soothed back to sleep by me, then sleeping for ten minutes, then waking up and yelling, then... you get the picture.

I swear upon my bar of Cadbury's Dairy Milk lurking in J's suitcase that this is all, ALL, to do with putting him in childcare.  But the kid has to get used to me not being there at SOME point.  It might as well be for a few hours a week while I'm getting healthier not 30 feet away.  I do wish he'd start napping properly though.  It's very hard to keep his lunch inside him at the moment, because he usually yells hard enough to make himself throw up, but I can't just stop the pump running and let him go without.  I just hope the extra few mls we're adding to his overnight feed are enough to compensate for all this nonsense and he starts gaining weight again soon.

In fact, he can gain all the weight I'm losing!  That would be awesome.  Freaky, but awesome.

Tina.

Continuing my rant, followed by birthday fun

Right.  Got a bit sidetracked the other night and forgot to finish my post, so I'll do my best to finish up what I can remember.

I was all angsty after Thursday's SS appointment, and one of the reasons was the fact I was up there for THREE HOURS.  I obviously hadn't accounted for this and so I hadn't brought any of Little O's food with me.  I'd fed him at 8am that morning, and didn't leave the clinic until 1.30pm, which meant he didn't start his lunch until 2.30pm.  He's also developed this incredibly annoying habit of wanting to nap at EXACTLY the wrong moment, so that instead of being hungry and wanting to enjoy some PediaSure (mmm, banana flavour-y), he basically yelled the whole way home until I put him in his crib.  I figured I'd just hook up his feeding pump and let him get as much as he could while he was asleep, but Little O is having none of that at the moment and as soon as he starts to feel something entering his tummy, he wakes up again and yells.  Yells until he chokes and throws up anything I've just spent the last half an hour trying to put in to him.  It's completely maddening, and I just get so frustrated sometimes.

All I ever try to do is keep my son healthy, happy and growing.  I do my best to make time for appointments and specialists, but it's infuriating to have to reschedule Little O's life around THEIR office times.  It's worse when an appointment takes three sodding hours, Little O won't sleep, and then basically misses an entire feed because he's all out of sorts.  I hate other people sometimes.  They make our lives very difficult.

Today was a better day.  I was utterly exhausted last night (it was Friday, after all, but let's not go down the ol' Spoons route again.  I don't have the va va voom for that right now), and started falling asleep on the couch at 6pm.  Mike ordered me to bed, and in bed I stayed... until 9.30am this morning.  I was so startled when I woke up and the clock said 9.30 but it was light outside.  It felt WONDERFUL to get that much sleep and really recharged my batteries.  We even had sex to celebrate.  :) 

Feckin' miracle, that is.

We took Little O to his friend's first birthday party this afternoon at the zoo.  She is such an adorable little princess, but that child LOVES to get messy!  She had a massive pink giraffe birthday cake, and when she was given a slice she tore in to that thing like she'd never eaten before in her short little life.  She was absolutely covered in cake, crumbs, and icing, and I think I wasn't the only one who found it hysterically funny when she pressed her sticky pink hands against her mother's clean white shorts.  I'm still chuckling about it now.  I got some beautiful shots of Little O and his birthday-girl friend sitting on the grass together, but I think Facebook is as far as they'll be going.  Sorry about that.  Of course, you can always befriend me on FB and share in Little O's gorgeousness instead.

Tina.

Spoons aren't just for sick people

Came across this today: Spoon Theory.

It's definitely worth a read if you have the time.

As I was reading it, I was struck by how much I could relate to this woman.  No, I'm not sick in the traditional sense, but I do have a mental health issue and I do take care of a chronically sick child.  I too feel as though I only have a certain number of spoons in my hand at any given time, but for me they're weekly allowances, not daily.

Mike was late getting home today because we had extremely violent thunderstorms which knocked out some traffic lights down by his workplace.  Plus, people always drive bananas when the rain comes and it takes you three times as long to get anywhere.  Anyway, he called me while he was stuck in a traffic jam and to me it was the last straw.  By Friday, I'm absolutely exhausted.  I have no energy to feed my son, to cook (or even think about) dinner, to tidy up the house, or to run errands in the evening.  I feel bone-tired, even though Fridays are usually my least-busy day of the week, and sometimes I just don't have the energy to get off the floor - which is usually where I am on a Friday afternoon.  When Mike calls me at the end of the week, he's always so excited to be done with work, and every single time I manage to crush his buoyancy like a particularly annoying mosquito.  I just can't bear it when he's so energetic and ... just ... MAD.  He's like a small child on Fridays, and after an entire week of taking care of one of those, I just can't face another.

When I'm tired I can't make decisions.  I find it hard to function normally, and as my 'normal' involves feeding Little O, I'm often driven to the point of desperation when Mike is late and can't do his Friday 5pm feed.  Today I nearly cried when England drew against Algeria because Owen REFUSED to sleep at his usual time, which meant he cried and cried and cried, which meant his stomach muscles contracted like mad, which meant I couldn't get his feeding tube to drain properly, which meant I couldn't get his lunch inside him, which meant he didn't eat his entire lunch, which meant I felt extremely guilty, which meant I was exhausted after two hours of battling reflux and guilt, which meant when England didn't secure a win I was VERY upset.  And very, very tired.  I could NOT face another round in the ring for Little O's dinner, and I was almost catatonic on the floor when Mike told me he would be late.  He came home to me still on the floor, propping Little O up on my arm while his automatic feeding pump whirred in the background.  Sure, it takes three times as long to get a meal in him, but when you just don't have the spoons left to fight another battle, it sure as hell makes do.

Today, my spoons are all gone.  But tomorrow, thank God, I get a fresh supply.

Tina.

Unexpected challenges

There are some typical things about being a new mother I've found very challenging, such as getting enough sleep and trying to cope with tiredness when that isn't possible, but I've also discovered parenting Owen has some rather unexpected challenges too:

1. Keeping up with laundry is sooooo hard sometimes. Owen's reflux means he changes outfits at least four times a day, and we get through burp cloths and blankets like you wouldn't believe. I can usually attribute the mood I'm in as to whether we have clean burp cloths or not, as I feel a thousand times happier knowing there's a clean stack somewhere.

2. The bickering and constant arguments with my husband. Mike and I have always had a fiery relationship and fighting for us meant we got to make up afterwards, but these days we spend more time bickering and sniping at each other than smiling and laughing. We still talk, but it's always either about Owen or how one of us is failing at some aspect of the housework, and it can be completely exhausting at times.

3. One thing not every parent has to endure is the feeding routine we have with Owen. Feeding him with a pump every four hours, followed by at least an hour and a half of continuous, hand-held venting, is monotonous and time-consuming. I've said it before and I'll say it again, but if he ate from a bottle or the breast and didn't have reflux, I'd have so much time on my hands I wouldn't know what to do with it.

4. I wrote in my last post about how I've found it difficult accepting my new title in life. I'm still finding that hard.

5. Keeping the house clutter-free. This is SO tricky! Mike and I have a policy of doing at least ten minutes of tidying-up and/or cleaning every evening so that the chores don't build up too much before the weekend, but the CLUTTER! I spent time last week purchasing a couple of wheely carts with drawers to organise Owen's medical supplies and the kitchen is now a lot neater, but the rest of the house just gets overwhelming sometimes. How does a small boy generate so much mess?! Between dirty laundry (there are those burp cloths again), small toys, feeding supplies and the crap Mike and I seem determined to litter the living room carpet with (currently new kitchen brochures and bill stubs), I can count on one hand the amount of square feet of tidy space I can see from here.

6. Leaving the house. As with any small baby, this is a challenge, but it was very unexpected nonetheless. Owen used to screeeeeam whenever we went in the car and he's got a lot better now, but he still throws up the minute we go over a bump and organising a time to actually get to an appointment is bloody hard to start with. I have stopped making appointments for the morning as the earliest feasible time I can get out without drama is 12.30pm, but it's so limiting and I do miss that freedom to just jump up and go.

7. The sheer boredom and loneliness of having a baby was very unexpected. I won't go into too much detail, but I believe they have really contributed to my post-partum depression. I try to get out as much as I can to visit friends or attend baby groups, but as I said before, leaving the house isn't always easy...

8. I think finding time to be myself without being Owen's Mama is kinda tricky, too. Don't get me wrong: I love my little one and the thought of everything we've been through with him and how at any minute things could have turned out very differently scares me half to death. But there existed a person before Owen Henri and when he's grown up and left the house that person will still be here. I just have to make sure I don't lose her in the meantime.

9. The guilt! Goodness me, this is a big one. I feel guilty ALL THE TIME. I feel guilty that I resent getting out of bed to attend to him; I feel guilty when he's asleep and I'm relaxing with a book instead of washing the dishes. I feel guilty that I don't sleep with my husband enough and when we do get down to business, I feel guilty that I'm not looking after Owen. I feel guilty when he spits-up (irrational, but true) and I feel guilty when I spend money on new clothes for him. I feel guilty that my body doesn't look the way it used to; I feel guilty that I indulge in cookies and ice cream when I should be eating grapes to shift these last few pounds. I feel guilty for disturbing him and taking him to all his medical appointments even though they're for his own benefit and I feel guilty if I cancel one because one of us simply isn't up to the challenge of fighting a medical institution that day. Most of all, I feel guilty that my body make Owen the way he is. I feel guilty that my egg gave him those crazy chromosomes and that my body pushed him out when he wasn't ready. I feel guilty that I couldn't breastfeed him and I feel guilty that I had to leave him at the hospital for so long. I feel guilty ALL THE TIME.

10. The last unexpected challenge I've found (although I'm sure I'll think of more before my next post) is how much love I have for this little boy. You may not see that as a challenge, but can you imaging having so much love in you that it breaks your heart? If we have one, how on earth will I find room to love another baby as much as Owen?

Tina.

Reflux and more...

Somewhat of a sombre post today, as life has been throwing every challenge under the sun at us recently.

Last week, little Owen was checked by the doctor for his four month check-up and his lungs were declared clear, despite a small cough he'd developed. Then on Tuesday his cough got a lot worse and his voice became very hoarse. On the same day, I took him up to his Neurologist to have an EEG machine stuck to his head for 48 hours so they could assess whether his jerks are true seizures, myoclonic jerks or summat else. Well, I REALLY wish I'd postponed this procedure, because by Wednesday Owen's cough was just awful and his temperature went over 100F. Considering he's always been a cool baby (in more sense that one, arf arf) this seemed alarming, so off we trotted to the local ER to have him checked out - EEG monitor 'n all.

Apparently the boy had pneumonia. Blah. The doctors suspected it was a result of his difficult intubation during surgery last week, where it's likely some saliva got pushed down into his lung and festered for a few days. I felt just dreadful that I hadn't taken Owen to get it checked out earlier, but I wanted him to have the EEG study done. Ho hum; can't win 'em all. Anyway, on Wednesday he just screamed and screamed all night with the jerking, coughing, refluxing and the EEG machine all keeping him awake, and by Thursday morning he'd clearly had enough because he pulled that sucker off his head by himself. Now, those electrodes were GLUED to his head, so it must have hurt him quite a lot, but after I took the rest of them off he slept soundly for the next 24 hours. Like a baby, in fact.

So, he's been recovering nicely from the pneumonia, but he still has a very bad cough. I'm taking him back to the doctor next week to make sure he's all clear, but the antibiotics run out tomorrow so if he's no better I'm not sure what we'll do. His reflux has been just awful since his illness, too, as whenever he coughs he brings up tummy fluids and makes such a mess. It's driving me to desperation and I feel very sorry for this little lad. I wish I could have his problems instead.

All his issues and my pretty-much solo care for him has led me to develop post-partum depression. There. I said it. I have depression. I started therapy this week to try and get some help, but I'm not mad keen on my therapist just yet. As my sister put it, "So, she's had two strikes. One more and she's out?" Yup. I said very clearly to her that my writing/proofreading/copy editing career was just starting to really take off and I didn't want to make it a low priority, but she didn't seem to take any notice. She told me that essentially, in order to battle this depression, I'd have to let some things slide, and writing ought to be one of them. Uh... no. The other thing she did was hand me the stock leaflet they hand out to all post-partum women and told me to make sleep a priority. Yeah... I would, but I have a BABY!!

The thing I find it very hard to convey to people is exactly how much work Owen's feeds are. For weight gain, this child has to eat every four hours, whether he's hungry or not, and each feed takes one whole hour. There are then two hours of battling reflux, during which he will routinely bring up 1/2 to 2/3 of his food, and then I have to give him supplemental water (and usually one or another medications) one hour before his next feed, over half an hour. So essentially, I'm only able to be in a different room to him for that single half hour before his next feed. Sure, I could take a nap then... but what about getting dressed? Or having a shower? Or eating lunch? Or preparing his next sodding feed? Sleep? Pah!

So, I'm going back next week for another session, but if she wants to prescribe me medication I might just boot her. I've told her I just want to be able to talk about the things I can't talk to anyone else about (scary, PPD stuff that I never imagined would ever enter my head), so if she wants me to start popping pills, it means she hasn't really listened to me at all and it'll have to be goodbye. Fingers crossed it doesn't come to that though.

Plus... it would have been Da's 82nd birthday today. I miss him.

Tina