Monday, August 30, 2010

Radio Ga Ga, Radio Goo Goo

Over the weekend things felt a lot better for me.  We met up with some friends on Saturday morning to visit the Milwaukee Zoo (seeing the orangutans is VERY important for Little O, you see), and the weather was just gorgeous.  Because these friends also have a little one, they completely understood when we needed to stop and change a diaper, or set up Little O's feeding pump, or whatever.  The difference between going on a day trip with these friends and going on day trips when my Mum was out here was astonishing.  Just so much more relaxed, and we had plenty to discuss.  I really, really like L.  She's so 'with it' in terms of her career and her relationship with her husband, but sometimes asks for my advice regarding her baby.  It makes me feel fantastic to reassure her about a minor detail, or to suggest she asks her doctor about this or that.  And by the same token, I call on her to reassure ME that I'm not going crazy when I fuck things up at home or with my own husband.  She's just a really cool lady.

After the zoo we went home and took a family nap.  It.  Was.  Awesome.

Saturday night I stayed up late preparing for my radio interviews.  Butterfly Charlie, who reads this blog, told me afterwards that she'd listened in and thought I was an excellent guest.  :)  This is good to hear: partly because she works in the media, and partly because I was shitting bricks when I did them.  The first was in Leeds and I thought I sounded really stupid and nervous, but after Manchester, Sheffield, Derby, and West Midlands, I think I had the routine down pat and did a good job.  I felt incredibly energised afterwards, and even though I slunk into bed at 3.30am I was wide awake for another hour or so, just running things through my head again.  I listened to the shows the next day to reassure myself I hadn't made a complete arse of myself, and they weren't too bad.  You can actually still listen to them for another few days, but as they give out my full name I'm not going to link to the sites on this blog.  If I'm friends with you on another site, ask me for the links and I shall oblige.

Oh, and one last thing.  My husband and I had unprotected sex for the first time.  (Well, not the FIRST time... obviously... Little O is proof enough of that.)  Watch this space, and keep your fingers crossed I'm not up the duff YET.  Christmas would be just fine.


Friday, August 27, 2010

I'm so tired I could...


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'.


Thursday, August 26, 2010

I'm going to be on the radio!

Got an e-mail this morning asking if I'd like to be part of a discussion on baby names in the UK.  It's going to be broadcast on local BBC stations around the country on Sunday morning, so tune in if you're able to.  The main programme is focused on faith, so I'll start by focussing on religious and spiritual names (Rachel, John, Mohammed, etc), but after that it's going to turn to Samantha Cameron's new baby girl and why parents chose the names they do.

I am WELL EXCITED!  Shame I can't get local broadcasts over here, but hopefully at least some of my friends and family can listen in.  BBC London should be a good one, if they're using me (I won't know until the day which stations I'll be talking to, but I'll be 'on the phone' for two hours and spend about ten minutes with each interviewer).  Listen in 7am-9am this Sunday!

World domination begins here...


Monday, August 23, 2010

My Pookie Bear II

(First section is here)

So, Little O was born on Sunday, 17th May 2010.  After we got settled in that night and I'd been escorted to my post-partum room (no wheelchair for ME!  I am a big brave warrior and wobbled my way there on my own two feet), I allowed my brother-in-law and his girlfriend to come in to my room and discuss in some detail how the birth had gone and what we were expecting to happen next.  After they left I learnt how to express milk for my new baby (WHAT a palaver) and spent the night visiting him in his special care nursery, using the breast pump, and trying to get some sleep - which wasn't easy, given I was incredibly hyper, overtired, and sleeping on the hardest bed known to mankind.

Anyway, the next day I got up and toddled down to the nursery again, only to find there was a middle-aged woman with grey hair peering at my son over spectacles.  She introduced herself as Dr. B, a geneticist, and talked my husband and I through her 'findings'.  Seeing as I'd never even heard of a geneticist, much less asked for one to analyse my beautiful baby, I was a little surprised and offended by her assumptions that Little O had a genetic condition.  She discussed the fact he kept his fists closed, had an ear tag, inguinal hernias, a grade-II intraventricular haemorrhage, funny little feet, very small eye openings (and didn't open his eyes until he was a week old, although we didn't know that yet), a small mouth, cleft palate, wasn't coping very well with feedings on his own, and the fact he was five weeks premature.  Slowly my husband and I took all this in, but the more she talked and the more I thought about my own family's history, the more I came to understand that she might be right.  We agreed to have our own blood tested to compare to Little O's once I was discharged, and returned to a flurry of excited visitors and concerned phone calls from far-flung family members.  I also got to hold him that evening for the first time since the birth.

The next day I went down to the special care nursery to drop off that morning's expressed milk, and found a number of doctors and nurses surrounding Little O's incubator.  Someone pointed out that I was the mother, and someone else (a doctor, I think, although I can't remember who) told me to sit down.  They told me something about Little O having seizures, and all I can remember is looking at this tiny creature I was no longer allowed to touch (that nurse bitch Debbie - I'll never, ever forgive her for denying me this basic human right when I was so distressed) and praying to God that I wouldn't lose him.  I went back to my room when they ordered some tests for Little O and I called my husband, bawling down the phone.  He legged it up there, and we spent the rest of the day talking to specialists, nurses, and the hospital chaplain about our son's condition.  I will forever be indebted to the kindness of that chaplain.  Her name was Beth and she was the most wonderful creature to the two distraught parents in her care; patient, kind, not pushy with her faith, and she spent time every morning for the next week visiting Little O and praying at his bedside.

I was discharged on that Tuesday as I was healing very well.  I'd only had one really wobbly moment: the day before.  I was showing some friends our new baby in the special care nursery, and had been standing up for far too long and trying to do too much.  I had to call out for a chair before I fainted, which was rather dramatic at the time, but I lost very little blood overall and felt well enough to walk out when I was released from hospital.  After kissing my baby's hand over and over again before we left, I think a nurse took pity on us and arranged for a separate room to be available opposite the nursery that we could use as a 'base' while we waited for developments.  We could sleep overnight there if we wanted to (which we did, only once) and it was a private and peaceful place for us to eat, recuperate, and for me to express milk and put my now-hugely-swollen ankles up. 

The next week was a complete and utter blur.  We went to the geneticist's office to have blood samples taken and were told the results would take a little time; and we spent many, many hours meeting with new doctors and talking to family about Little O's condition.  My husband had to go back to work on Thursday, so I spent the rest of the time expressing milk (an arduous process, and one it pains me to remember), demanding to hold my baby, putting my ankles up, and watching Nancy Grace on daytime-TV (eugh).  By Sunday morning things were looking up, and people were telling me Little O could probably go home by Wednesday or Thursday; however, that evening his seizures got worse.  He would spend over an hour just shaking and jumping at a time, and for a tiny premature body that's incredibly wearing.  The doctors looked very serious and ordered more tests, and the nurse in charge suggested we stay the night in case things got worse.

You can imagine the effect a statement like that had on us.  We COMPLETELY freaked out, thinking we were about to lose this perfect-looking person we'd only known for a week, and we spent the whole night either in tears or waiting for news.  At 3am a nurse knocked on our room door and told us Little O's oxygen levels had dropped dramatically, and that they'd had to put him on a nasal canular.  By 8am they'd given him so much phenobarbital (an anti-seizure medication) that he was woozy and not very responsive, and by 10am it was decided that he should be transferred to another, more capable, hospital.

They sent for a specialist paediatric ambulance to transfer a week-old-baby to the new unit, and while we waited for it to arrive I just sat there by his tiny bed, rocking him and singing to him and crying my fucking eyes out.  I was absolutely terrified.  The nurses were incredibly supportive (except Debbie, bitch) and allowed me to spend as much time with him as I needed to, but when the ambulance crew arrived with their horrific-looking portable incubator I just lost it.  I cried like you'd never heard a woman cry before, and I refused to let my baby go.  He was so tiny, and so beautiful, and giving him away to strangers felt absolutely barbaric.  I'm normally very capable and very calm under pressure, but they say you don't know love until you look your first child in the eye, and they're right.  My heart just broke.  The new hospital, St Joseph's, had sent over a senior nurse to accompany Little O, and she must have seen how distressed I was because she began to mother me herself.  She became very calm and comforting, and yet she also took charge enough of the situation to allow me to feel secure in putting Little O into that yellow machine.  (Later on, when my husband and I arrived at St Joe's, the same nurse told me she thought I hated her for taking my baby away.  She wasn't far off the truth...)

I hate the fact that my child's first experience of being in the outside world was being driven to another hospital in an ambulance.  I hate it, but there wasn't a lot that could be done.  He needed more intensive care, and the only way to achieve that was to trust strangers to drive carefully while they moved him.  I still shudder and give myself nightmares thinking about if there'd been an accident on the way; I would never, ever have forgiven myself.

Regardless of the how, why, or when, Little O's new home was at the St Joseph's Hopital NICU.  He transferred there on Monday, 24th May 2010, and would stay there for the next two and a half weeks.

More to come...


Monday, August 16, 2010


As ABBA once said, "I have been waiting for these visitors..."

I'm going to come back to the My Pookie Bear testimony soon, but there are some other things we must discuss first.

My Mum is out visiting at the moment, with D.  It was also my birthday last week (27... sigh...) and I was embarrassingly disappointed with the whole affair.  Since I was little, right up until recently, I have looked forward to my next birthday right after I got done with the last one.  However, for the last four years I have felt absolutely nothing.  No excitement, no anticipation, no nothing.  It's going to be incredibly selfish of me to say this, but ever since 2007 something has kind of stolen my thunder.  In 2007 I was forced to live in the UK while we waited for immigration paperwork to be processed, but my husband had no legal right to work over there so we spent the whole year (our first year of marriage) living in two different countries.  On my 24th birthday, therefore, I was sleeping on my sister's couch working as a credit-control temp for a food company, and it SUCKED.  In 2008 I was happily living in WI and took a week off in the summer for my birthday and for my family's visit, but I go so excited about them coming over that I completely forgot about my birthday and felt a bit weird on the day itself.  Same story in 2009, and exactly the same in 2010.  I'm so lucky that my family wants to come and visit me, but I wish we could spread things out a little.  I'd love for them to come over every year, but perhaps they could make it a week or two later next time?  I'd really like to celebrate with just my husband and Little O, and feel special about my birthday again.  I want to DO something... not feel like I have to entertain guests or watch my alcohol intake in front of my parents.  Maybe next year if they're back again, they can look after Little O for a weekend and my husband and I will bugger off and get pissed at a hotel somewhere.  I'm really not looking forward to asking my family about that though...

It's weird having my Mum here with D.  Admittedly he's helping to diffuse potentially hazardous situations, for which I am very grateful, but it's still strange watching their relationship.  For example, my Mum stopped kissing and hugging us goodnight when we were teenagers, but with D she makes sure they say a 'proper' goodnight... every night.  It's sweet and not inappropriate (he's gay, remember?), but it just strikes me as odd that she'll give him a hug and peck on the cheek before bed, but then turn to me and wave goodnight as she goes up the stairs.  I dunno.  Maybe this is all at D's request: not her's.  Maybe it makes her feel weird doing it in front of me too.  It's just that I don't have a great relationship with Mum on my own, and seeing her be comfortable and motherly to someone who isn't her child is... hmm... uncomfortable.

Another thing that's making me feel uncomfortable is how my Mum is around my son.  She clearly adores him and has frequently demanded to hold him or play with him, but she's never once offered to HELP with him.  I know he's a lot of work and that learning how to take care of him is a bit of a minefield, but even if I turned down the offer of help I'd still appreciate the gesture!  She has never once offered to feed him, change him, put him to bed, give him a bath, get him dressed, hold him while I deal with another crisis... nothing at all.  As far as she's concerned, she's his Grandma and her prerogative is to enjoy cuddles and playtime.  My in-laws, however, offer to do EVERYTHING.  They have been the most helpful, supportive grandparents for Little O, and I feel more confident in their abilities to take care of him in an emergency than anyone else.  Yes, they've seen him more often, and yes, they live considerably closer, but that's not it.  They're better with Little O because they WANT to be.  When we visit them they make sure we have everything we need to get comfortable, and they will happily and without complaint rearrange anything at all to fit around us.  They want to administer medications, feed him via g-tube, change diapers, give him his nebulizer, bathe him.  They're happy to do it because not only do they love him, but they realize how much pressure my husband and I are under and they want to help relieve it.  My Mum, on the other hand, wants to be treated like a guest.  So I have to run around cleaning up after her and D as well as all my usual Little O-related business.  It would just be nice for her to offer to change him when he's dirty, or feed him something tasty... just once.  That's all.  Because that's the kind of Grandma Little O needs.

Thanksfully my Dad is coming to visit in October and he's more like my in-laws.  He's happy to get stuck in there and help out as much as possible, so I'm looking forward to seeing him and trusting him to take care of his grandson.  I think he's a wonderful father and a brilliant Grandad.  I miss him a lot.

In other news, I got offered another copyediting project!  Thank FUCK for that!  I was beginning to think my publishers didn't love me anymore...


Tuesday, August 10, 2010

My Pookie Bear

I've been reading some incredible books lately, including two written by parents of children with special needs.  They are so much more helpful than the tripe my therapist lent me, and they've inspired me to write my own testimony.

So, here it is.  The first draft of my testimony to what being a parent to Little O is really like, right from the very beginning.  This may take some time, so buckle in...

My Pookie Bear

My husband and I decided to try for a baby in the late summer of 2008.  A naturally realistic person, I was concerned that conceiving a child would be very difficult, and prepared myself for several months of waiting and frustration.  My son, however, had other plans.

We found out I was pregnant in September 2008 and immediately visited the ob/gyn to get started on the merry-go-round that is pre- and post-natal care in the USA.  I read up on the subject of pregnancy as much as I could, researching all the things I should and should not be doing, and generally becoming very excited and proud.  At about eight weeks gestation I began to have hyperemesis gravidarum, which meant my work schedule and household chores became a daily battle against nausea, vomiting, and keeping anything other than water down.  I was eventually prescribed medication for my extreme sickness and things began to look up in early 2009, when my husband and I excitedly went to the L&D ward at the hospital for my 20-week scan.

It was at this scan that we were first introduced to the notion that all was not well with our baby.  A neonatologist trained in sonography scanned my belly and announced two things: 1) that we were having a boy; and 2) there was a possibility our son had a heart defect.  To be honest, I was still reeling from the shock of being told my baby's sex - I was absolutely convinced we were expecting a girl, and I remember my stomach dropping just a smidge when a tiny set of genitalia was pointed out on the monitor.  I was still shaking my head in disbelief, therefore, when the doctor told us he was referring us to a foetal cardiologist for further tests.  I came away from the hopital absolutely numb.  I had to get back to work, so my husband and I talked on the phone as we drove our separate ways, and I remember being so confused and so upset that I took a wrong turn and ended up at Milwaukee General Mitchell Airport.  Frustrated at the lack of accurate signposts and terrified at the thought of losing my baby, I had to stop the car to sob hot, angry tears.  Looking back, the feeling of utter helplessness and lack of specific knowledge about my son's condition was actually excellent preparation for that confusing period of time following his birth.

When we visited the foetal cardiologist (which we did, twice), she assured us after lengthy scans and pokes at my baby that all was in fact well.  She saw no evidence of a heart defect, and thought that the first doctor must have seen a shadow, or a rapidly-moving baby too fast to guarantee a clear picture.  Still, despite her reassurances, I continued in my pregnancy to feel as though all was not right.  My mother had experienced peaceful, trouble-free pregnancies with her first two children, and then an astonishingly distressing one with her third.  And that third baby ended up having such serious disabilities that to this day, at the age of 22, my younger sister requires 24-hour supervision.  I was fearful that this pregnancy would have a similar outcome, but to the world and to my husband, I just put on a brave face and knuckled down to the job of waddling about with a beachball attached to my stomach.

At six months, I was made redundant from my job.  It was a Thursday.  I looked my employer straight in the eye and walked out of that building with my head held high.  The next day we signed contracts, closed on our new house, and moved in to our baby's first home.  On the Monday, I sat on my couch and filed for unemployment benefits, then continued working on the manuscript for my second book, Baby Names 2010.  After all the stress of the previous week, I was content to just sit and relax and maybe take a nap or two.  A few weeks later, my Da died.  I was too heavily pregnant to fly home to the UK for the funeral, so I mourned the loss of my baby's Great Grandfather from afar, writing a dedication to him and including it in the service sheet.  Eleven days after his death, I went into premature labour.

Labour is a funny thing.  At 35 weeks I wasn't expecting it, although I knew the signs to look for.  The weekend before, I had stood in my baby's new nursery and yelled at my husband for not working quickly enough to get the room ready.  At the time he laughed at me and called me mental, but now we look back and realise I was 'nesting' - my body knew the baby was coming but I had no idea.  On May 14th, 2009, I was at home and working on the computer when I felt hip and back pain.  Assuming it was just pregnancy aches, I attempted some exercises on the floor to encourage the baby to move about, and then spoke with a friend online.  She warned me that I might be in labour, so I called the doctor and sure enough...

Over the next 55 hours I worked harder than I've ever worked before.  I was not a strong or courageous woman in labour until the last hour, when I became incredibly focused and determined, and pushed my tiny son into the world in 45 minutes.  He was born at 5.12pm on Sunday, 17th May 2009.  When I remember the feeling it brings tears to my eyes.  I was just so relieved he was here.  I didn't care that he was early, or that I was bleeding on to the bed.  I didn't care that I was experiencing a life-changing moment:  I was just so glad he was here.

But if I am to be totally honest, then I have to be brutal.  And blunt.

When Owen was born, I was not surprised that he didn't breathe.  I was not surprised that he was pale, and floppy, and had a massive bruise covering most of his scalp.  I was not surprised that they rushed him to the bed warmer and stimulated him to cry.  I was not surprised when they announced he had inguinal hernias, blood in the meconium, or an ear tag.  I was not surprised that he didn't open his eyes, or that I wasn't allowed to hold him until they had worked him over.

I was not surprised, because I knew already.  I just knew.  I knew something was wrong at that 20-week scan, and I knew something was wrong when I compared my pregnancy sickness with my mother's.  I knew something was wrong when I went into premature labour.  It's hard to describe, but I just knew.  I listened when people told me everything would be alright, but I didn't really take it in.  I listened when my sister told me of her own pregnancy sickness and how her own scans had been normal, but I didn't really take it in then either.  I just knew something would go wrong, because I had been preparing myself for so long for the worst.

But you know what?  When I was finally allowed to hold Owen, I cried and cried and cried.  I cried, not because of all his 'wrongs', but because of all his 'rights'.  He was astoundingly beautiful.  He was pale, with creamy skin just like his Mama and two tiny rosy cheeks that bloomed across his face when he cried.  He had the smallest and pointiest chin I've ever seen on a baby, and it is still my favourite part of him.  That tiny little chin was so cute and perfect and smooth, and I would run my finger along it over and over again to feel the sharp little curve.  He had small and slender lips, and tiny starfish hands, and curly toes that we would later identify as coming from his father's genes.  His wrist was the size of my thumb and he had no hair at all.  In fact, his head was so round and smooth and white that the nurses all told me he was nicknamed 'Cueball' in the nursery.

In short, he was gorgeous.  Like any newborn baby's mother I thought he was stunning, but another, more rational part of me also thinks so.  He was just a lovely looking baby.  Perfect and tiny at only 19" long and 5lb 14oz, but strong and breathing by himself.  I decided there and then that he was a superstar, and the first book we read to him was called Baby Brains Superstar, because the baby looked just like him.

More to come...

Saturday, August 7, 2010

The weekend for getting shit DONE

So last week was pretty horrendous.  This new feeding schedule is supposed to be freeing up time for me and Little O, but it's actually become a little more taxing.  On Thursday for example, Little O woke us at 5am for a throw-up and scream fest, but then did settle down again until 7.30am... for another throw-up and scream fest.  He basically hasn't gotten all his PediaSure overnight since we started this routine a week ago, so on Thursday morning I just dumped out the remainder and put it back in to the fridge so I could give it to him later in the day via a bolus gravity feed.  (I hate that term: bolus gravity feed.  It makes me think of bowels and space and Newton and, for some reason, balloon catheters.  It's just a really irritating phrase.)  So that day I had to give him his remaining PediaSure at 9.30am because he got fussy and I correctly interpreted that as hunger, then water and an oral feed at 11.00am because his speech therapist came over, and finally set his pump to run at 12pm for his regularly-scheduled nap.  It meant I spent allllllll fucking morning feeding (or fretting about feeding) my son.

It's been pretty much the same story all week.

Anywhoo, my husband and I weighed him tonight before bed and Little O has gained three ounces!  Yay! He was 23lb 3oz last Thursday (July 29th), and weighed 23lb 6oz today (Aug 7th).  It's not a great gain, but I WILL TAKE IT!  We're still not jumping up and down, but hopefully this is the start of a better journey.  The more weight he puts on and the bigger he gets, the more his stomach will be able to tolerate (in theory, I stress), which means we can up the pump rate and he'll hopefully keep more down.  It's all a matter of biology I suppose.

My Mum is coming to see me next week!  She'll be here for my birthday, which makes it the third year in a row I've had family out to Wisconsin on that day.  It's rather remarkable and I feel incredibly special, but it is helped by both my parents working in education and August falling during the UK schools' summer holidays.  She'll be bringing over D, who is a lovely young chap who lives with my Mum and Dad, and who has had a rather interesting start in life.  It's not my place to discuss his affairs online, but I'm looking forward to seeing them both.  (Worth noting is the fact he's openly gay, before anyone raises an eyebrow at a 52-year-old woman and 22-year-old man going away together on holiday.)  Hopefully D will help break some of the inevitable tension that accompanies those times my Mum and I get together.

Mmm... they're bringing some Cadbury's Dairy Milk too...

In anticipation of their visit, my husband and I have been madly preparing the house for guests.  Normally this involves washing the sheets on the guest bed and cleaning the bathrooms (both done far too rarely), but we've gone a little mad this time.

On the list this weekend:

1) Go to the DMV for the Ford's MOT/emissions test
2) Vacuum carpets
3) Clean carpets (we bought a fancy carpet cleaner machine for this, seeing as Little O gets our house rather filthy, and it's already paid for itself after four months)
4) Wash all bedding (yup, all three beds)
5) Tidy and organise the basement (a rather big job, which we're excellent at avoiding)
6) Clean oven inside and out (again, a job done too rarely, but I seem to have fallen in love with the self-clean programme and I fancy this will be done more often now)
7) Clean microwave (ditto... sigh)
8) Clean both bathrooms (I refuse to do this.  It's gross)
9) Wash all non-carpeted floors
10) Clean upholstery in living room (our fancy-pants carpet cleaner has a gizmo for this, and Little O's goo gets EVERYWHERE)
11) Mow lawn (I actually really love doing this)
12) Stain the deck (we did this earlier today and now it's a rather startling shade of orange.  Oops)
13) Replace batteries in kitchen clock (cheap piece of crap)
14) Go grocery shopping
15) Dusting
16) De-flea Bob (all done now!  He shrieked like you wouldn't believe, but that shampoo is awesome.  And now we have clean carpets and anti-flea stuff down too, so those little buggers better find somewhere else to live)
17) Finish toy box (my husband's job.  He started making Little O a toy box for his birthday... which was in May... sigh...)
18) Put up curtain tie-backs in guest room
19) Replace air filter in heating/air conditioning unit (it's been well over a year, and who knows how long it had been there when we moved in.  We changed it today and it was black)
20) Clean kitchen top to bottom
21) Laundry

There are others, but we've either done them already and I've forgotten them, or we're clearly never going to do them and I've also forgotten them.  But at least five of those items on the list are BIG JOBS and it took us all day today to get them done.  Tomorrow we're going out for brunch at the Botanical Gardens, thanks to our lovely friends J&G, who gave us a voucher for free babysitting and two paid-for brunches to use whenever we chose.  I'm trying really hard not to stress about leaving Little O for a couple of hours because I know he'll be safe and loved, but I'm such a control freak when it comes to my son.  It's really hard to spend all day looking after him and then hand him off to someone else, no questions asked.  I feel guilty and a little bit lost.  I need to work harder at letting go... but I don't really want to...

This post is a little bit of a ramble, I know.  It's probably very boring to read about the chores we're getting done this weekend, but I felt a bit absent after my last post and I wanted to write about something utterly mundane.  And chores are pretty fucking mundane.

I still miss Anthea.  She moved in to a new flat a few weeks ago (they OWN it!  In London!  How cool is THAT?) and hasn't had any internet since then.  She also works in education so it's not like she can nip in to work and get online for a few hours.  It means I haven't chatted to her for aaaaaages, and right now she, her husband, her son, my other sister V, and my Dad are all on what sounds like a rather hilarious canal boat holiday.  My Dad's always wanted to go on one but my Mum prefers city breaks so we never did it as children.  Now Mum's flying over to see me, and Dad's taking the initiative and cramming four adults and a one-year-old on to a narrow boat for two weeks.  It will be absolutely fucking hilarious and while I miss them like crazy, I also can't wait to hear about how much they got on each other's nerves and how my Dad nearly capsized a 30ft-long canal boat in some random lock.

Good times, man... good times.


Wednesday, August 4, 2010

From good to bad to worse

Yeah, so I started today out feeling better about the 'situation' and even got as far as to write a post about the good news.  Then the rest of my day took over and now I feel desperately unhappy again.

I'm just not getting a good grip on Little O's feeds.  I've been trying for so long to adapt and persevere, but it seems like there's a constant wall up ahead that I can't climb over.  Since he came home from the hospital on June 10th, 2009, my husband and I have battled and battled to make sure Little O has been fed properly and makes gains in his growth and development.  We've tried so hard to offer him a variety of foods; changed formulas three times (four if you include breastmilk); worked with gravity feeds, pump feeds, bottle feeds, spoon feeds, safety-feeder feeds; and all along we've had experts in our ears telling us to 'switch this', or 'stick with that'.

I'm exhausted, and I've spent a great deal of today in tears.  Last week we weighed Little O on our home scales and were dismayed to see he still hasn't gained any weight since April.  April!  I took him to Seattle in April.... it seems a very long time ago.  After noticing this problem I called his nutritionist and suggested to her we try feeding him his PediaSure when he's asleep ONLY.  He's generally a very good sleeper and will sleep for about 11 or 12 hours at night and another three or four in the afternoon, so the idea of slowly pump-feeding him while he naps seems like a good solution.  The theory is that he'll not only stop throwing up (because the rate is so slow on the pump), but it will also free up large portions of the day to concentrate on oral feeds.  If I'm not having to force liquid nutrition into him while also forcing a spoon into his mouth, it means he's less likely to throw up solids, AND he'll hopefully enjoy oral feeds more.  And then, the more oral intake he has, the less liquid nutrition he needs.

IMAGINE!  Imagine this glorious world where your baby boy doesn't live in constant pain.  Imagine packing the burp cloths and wipe-up rags into storage because you don't have to mop up sick five times a day.  Imagine feeding your child like any other family, where dinner time isn't battle-time and you don't have to mentally and physically gear yourself up for war.  Imagine putting your child to bed knowing they've felt no discomfort all day and that they can look forward to a tomorrow where eating is a nice, enjoyable activity.  Just imagine...

Today I can't imagine this world.  This world seems very far away.  My baby boy is nearly 15-months-old and his reflux is still the hardest challenge he faces.  He woke up several times in the night to throw up or just scream, and even when I went in at 7.30am, the pump still had nearly 100ml left to go.  I don't know what to do.  I can't set the pump to go any faster because he'll just throw it up, and I can't leave the food in the bag because he needs the nutrition to grow.  I can't run the pump for longer because he needs to be asleep, and I can't let him sleep for longer because then he won't nap in the afternoon...

Yesterday I was so pleased that Little O went down for his nap at 12pm and slept right through until 3.30pm.  I was pleased, because it meant he got all his PediaSure and I didn't have to worry about a thing.  That was, until I went to wake him up and saw that the med-port on his extension tube (the tube that clicks into his stomach) had popped open during his nap, and he was laying in a large, wet pool of pink PediaSure.  So after three and a half hours of pump operation, Little O had digested exactly nothing.  Nada.  Zilch.  And this morning I went in at 7.30am because he was yelling his head off, only to discover that he'd thrown up a large volume of goo, and was now laying in a large, wet pool of chocolate PediaSure.  And that brown stuff STAINS.  So, for the second time in two days I had to change his bedclothes, comfort a soaking wet little boy, and fret about the fact he's not getting enough food digested.

I am just SO DONE WITH REFLUX!  I cannot, cannot keep fighting this battle.  I just can't do it.  I don't have the patience.  I certainly don't have the energy.  I cannot keep explaining to experts how horrific our lives have become only to have them dismiss my words.  I'm so sad and angry and frustrated.  I need for this to go away; I need a Fairy Godmother to come and visit my house and whisk us all away to that lovely other world where Little O doesn't cry out in pain in the middle of the night and where bedsheets aren't stained to the point of embarrasment.  I need for someone else to take care of us.  I need to be able to focus on something, anything else but whether my son is growing and eating and comfortable.  I need a break.  A real, honest break. 

I need to see to my sister.  I really miss her.  I miss both my sisters, but sometimes you just need a hug from your big sister and you get the energy back to fight another day.

God, I need some help.  And I need to stop crying.


Panic over!

It's all okay!  Now I can stop being distracted and dropping stuff and forgetting what I'm supposed to be doing, and concentrate on not flipping out for the umpteenth time this week that Little O's food pump keeps leaking PediaSure all over his bed.

So, it's good news... but wow.  That was close.


Monday, August 2, 2010

Uh oh...

Something's going down.  It's a long shot, but if I'm right then oooooooohhhhhh shit.

Update to follow later this week.