update

Christmas was wonderful.

All is good here.

Had a quick trip to the hospital earlier in the week because Kaylee pulled her tube part way out (why do these things always happen at 10pm or later?) but other than that we were pretty much home.  A few more weeks of that and we may start climbing on top of things around here.

Andrew is walking at last.  Anna is besotted with her baby doll we got her for Christmas and makes good use of the bottle, cups, clothes and other accessories that came with her.  Christopher has turned a nice golden brown for summer (yes, we do hats and sunscreen but he is naturally dark skinned anyway).  Billy is champing at the bit to do some school work.  Erin is so grown up it startles me.
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Here are a few snaps of our Christmas day.  I'm afraid I don't have the crazy mad aesthetic skills that some of my other bloggy friends have and few of these pics show the kids faces (hard to get them to look at the camera when they have presents!).  But this is us: 

 Christopher waiting for present opening Christmas Morning

 Billy checking out his new pencil case and pencils

 Erin helping Kaylee open her presents

 

 THE swing set

 a-swingin'and a-jumpin'

And one little boy who thinks ladders are for wusses.

 yes, he can make it to the top!

And my best present this year?

Being home with my family.

And one fat....

 Fluffy....

Baby.

update

Well, there is another week done.

Fantastically, we didn't go to the hospital once this week.  In fact, Kaylee and I didn't even get in the car this week which was fantastic.  Jon, however, had to go out three days in a row this week for various unavoidable reasons which proved to me beyond a doubt that I NEED him home at the moment!

We have been making various Christmas preparations and I am looking forward to seeing the kids open their pressies.  We got the a swing set which my Honey will set up tonight!  Not the whizz bang spectacular one he'd like to design and build one day but a fun interim measure.

It is HOT today and Kaylee has been refluxing all day.  She is finally asleep in my arms completely naked (or as Christopher says - nekid).  I have a feeling we will be seeing a bit of the nekid-with-mittens look from Miss Kaylee this summer as the heat seems to make her itch under her tube tape.

Andrew has had his first haircut and is sporting a nice, short, tennis ball style, as is Billy.

We had a huge toy cull yesterday in preparation for Christmas.  Quite a few unsentimental soft toys are moving on.  A shape sorter (we still have three!), a toy with many-small-parts-that-HURT-when-you-step-on-them and a very cool toy that we had two of will also be finding new homes in the New Year.  The company Jon was working with sent home Christmas presents for the kids, most of which are great but I must confess we replaced the doll that "really cries!" with a quieter doll for Anna!  I have a suspicion we will be drowning in toys again by next week.

Andrew, Billy, Christopher and Erin hosed each other down as I shelled peas in the sun with Kaylee asleep across my knee this week.  It was a perfect, blissful moment with amazing blue summer skies dotted with fluffy white clouds and a gentle breeze. I am so blessed.

The Babies and Birth Control Post

Occassionally I get asked why I have so many kids aged so close together.

More often people make assumptions about why I do.

Usually I just give a short answer or leave people to their assumptions because, well, it isn't really anyone else's business really.  Plus, I think the philosophical, theological and personal reasoning behind family planning is a very rich, meaty pie to bite into and I could write several volumes on it and still not cover all the implications.  The problem is most people's eyes start to glaze over after the first few paragraphs so I don't think it'd ever be a best seller and I am too busy raising all these kids to ever get around to writing a complete treatment anyway.  Also, like many big stances, the reasoning behind this action may change as I grow in knowledge and wisdom so I don't really like to tie myself down too closely.

But because this blog is a place where I share quite a few things that are my business and because it is my little place in cyberspace to make people's eyes glaze over, and because I can put little disclaimers on here that say *I may change my mind*, here goes a short mini-treatment on why I have so many kids so close together in age.

So......Why?

Because Jon and I wanted to.

I always wanted a bunch of kids and I slowly won Jon around to the idea by producing such excellent specimens (that's what I like to think anyway!).  We love the lifestyle and dynamic of raising a large family.  My pregnancies and births have all been relatively easy and previous to Kaylee all of our babies have been horribly healthy and easy to manage.  We were happy to make the financial choices involved in having a bunch of kidlets like ours.

So we had 'em - and kept having 'em!

There are some people who have assumed that we did this because we felt the Bible says we shouldn't use birth control and this is not the case.

I believe when the Bible talks about children being a blessing it is right on the money and it is as true and relevant today as it was thousands of years ago.

However, I believe people who have just one or two children are equally blessed as those with larger families and I believe that those who are childless (through their own choice or otherwise) are just as blessed in a different way.

I do not believe that having more children will make me holy in and of itself (although God certainly uses my kids to polish my character if I let him!).

I do not believe that I am less holy or blessed if I choose to actively manage my fertility.

Personally, I do have qualms about the potential abortificant effects of hormone based birth control and do not like what they do to my body - but there are many other barrier and natural family planning options out there that are quite effective**.  I do believe that if I did not actively manage my fertility right now I would risk bringing the gospel into disrepute. 

If someone knows that I am a Christian the choices I make will often shape their view of Christians, God and the Bible.  What I do has the potential to soften or harden their heart to the Holy Spirit.

1Thessalonians 4:11, 12 urges Christians to "Make it your goal to live a quiet life, minding your own business and working with your hands, just as we instructed you before." so that those who are not Christians will respect our lives and we will not be dependent on others. 
 
If I were to keep having lots and lots of babies while dependent on government allowances I would not be making these things my goal, I would be making having lots of babies my goal.  While I can find a lot of places where the Bible talks about having kids as a blessing, the only place I can find a direct imperative to have children is in Genesis when Adam and Eve were given the command to "go forth and multiply" - a command that speaks in general terms to humanity.  If I were to take this command and ignore the multitude of urgings in the Bible to be wise, owe no man anything and live a life that brings the Word of God into good repute also in the Bible, it would be legalism and selective verse-picking.

I don't believe God was telling each individual that they MUST go forth and multiply in this verse and  even if I did, "obedience" to this could be achieved with one child anyway - and would not exempt me from the other guidelines for living in the Bible.
 
One of my main hesitations in putting this post together is, well, babies happen.  I personally know of more than one post-vasectomy baby and many other pregnancies that have happened in spite of pretty much every type of birth control.  While I am not planning any more babies at this stage and am actively taking measures to manage my fertility accordingly, I still COULD fall pregnant.  And I do not want to chance any child I have feeling less that totally loved and wanted.  ANY child that enters our home, planned by us and God or only planned by God, IS loved, wanted and considered a blessing.

Right now I have more work in each day than I can really effectively manage without my husband at home working with me*** which makes us dependent on others.  We are privileged to live in a country whose social security systems do provide for us.  One of our goals at the moment is to not be dependent on this help again as soon as we are ready.  So for now we are not planning any more babies.  If I were to keep having babies right now and keep saying that "God will provide" for them, the hard-working taxpaying atheist would be justified in pointing out that they, in fact, are providing.  I had my babies because I wanted them and we could provide for them and I am thankful for a million different reasons for those choices we made.  I have no regrets and I am thankful for my children and enjoy having them so young all together.  God has blessed me with a "fruitful" womb, six fantastic kids, and placed me in a rich country where all my needs are provided for.  He also blessed me with a brain, common sense and the ability to reason and make choices.

And I pray that whatever I do, whatever I choose, the glory will be to God.

And that, in a nut shell, is why I have so many children aged so close together.

** No, I am not going into what I use because frankly, my parents, grandparents and in-laws read this blog and there are some things I think we just don't need to know about each other.


***yes, I know I am on the computer and not doing that work but I am pumping milk as I type.  It's called multi tasking....and I may be a LITTLE bit defensive.

In the interests of full disclosure....

Back when Kaylee was first admitted to hospital the outpouring of love and generosity was amazing!  I would ask for something and it would magically appear.  Luxuries that eased my way through some of the darkest days seemed like gifts from heaven.

Fast forward to now.

We are home and while we have our tough and stressful days and weeks, we aren't doing too badly for the most part.  We have discovered that Jon going to work is not sustainable - Kaylee's needs are just too time consuming for me to do everything that needs to be done and take care of her properly on my own.  So once we finish sorting out the MOUNTAINS of paperwork he and I will be on centrelink allowences.  Once we have that sorted out we will have a steady fortnightly income which will cover all our needs and a couple of our wants.  We are buying a special Christmas present for the kids which is a little more extravagant than our regular Christmases.  We have never once had bare cupboards or wondered how to pay for a tank of fuel - a combination of the generosity of others and our own careful savings and modest lifestyle choices took care of that type of thing.  We are expecting that some back payments and some generous fundraising by my Ravelry friends will pay for ALL of us to go over to Melbourne for Kaylee's surgery next February.  Some dear friends have watched 5/6 of our kids while we attended appointments.  Friends have offered to help out with jobs around the house.  Honestly, we are doing pretty well.

But the generosity continues. 

The local charity group has dropped in two boxes of groceries this week.

I'm not exactly sure how to tell them that we don't actually NEED it.

Another charitable group has asked us what funds we need.

But it doesn't seem quite right to ask them to fund that live-in maid named Alice that I always wanted or pay off our mortgage or pay for a new roof to add value to the house before we sell.

So dear friends, just so nobody's feelings get hurt and in the interests of full disclosure, we are doing OK right now.

If Kaylee needs a feed pump long term, we may need to raise funds to buy a better one - but Kaylee could start drinking bottles, or even direct from the breast, next year.

If Kaylee still isn't walking by the time she outgrows prams we may need to buy a decent wheelchair - but she could up and walk before her first birthday and given CDLS growth rates she will probably be fine in  a pram for at least another six+ years - and most kids with CDLS walk long before then.

If our centrelink paperwork gets messed up, mislaid or refused we may need a bit of help - but we could have that completely sorted in a couple of weeks and have all our financial needs met.

In the mean time, if you really want to help, donate some blood or donate some funds to one of the charities listed on our wishlist.  Or, by all means, get me that live-in maid named Alice I always wanted!

An attack of the I'll-Justs

I have had friends and family speak with envy about my ability to fall asleep anytime, anywhere.  Personally, I find it a little inconvenient when I am out visiting someone and doze off on their couch - but there ya go.

Source: dielectric-m.deviantart.com via Hanna on Pinterest

I have decided to share the secret.

I suffer from the "I'll-Justs"

Many people have a mild form of this condition - the "I'll just read one more chapter" form which can render the sufferer dopey but well read.

My form, however, I believe to be extreme.

Take, for example, this morning.  I woke up to Kaylee's feed pump at 5am and, doing the math and discovering I had only four hours sleep, decided to sensibly go back to bed.  I thought "I'll just take this empty bottle out to the kitchen"


Once out in the kitchen I looked out the window to a beautiful early morning and thought it would be nice to go for a walk but I knew I needed sleep so I thought "I'll just express first, it will make the day easier and I need to build up my supply a bit"

Fast forward 45 minutes and I was definately on my way back to bed.  "I'll just put a load of washing on and have a drink."

I needed to go outside to get some water from the tank to drink and it was sublime outside so I thought "I'll just make it a SHORT walk.  I do need the exercise."

Source: pinterest.com via Aleah on Pinterest

As I walked I realised just how out of shape I have gotten so I thought it would be a good idea to do a work out DVD when I got home.  But then I thought the better of it.  I had only had four hours sleep and I needed to go back to bed..."I'll just do the 15 minute work out."

After I did the work out I thought "Aaauuuurugh!  WHY!!!  Why did I do that to myself?  WHY!!  I feel...I feel....I feel pretty good actually.  But I smell like an old sneaker.  Why is it that activity that is supposed to make me alluring and enchanting to my husband makes me smell like an old sneaker?  I'll just have a quick shower."

As I had a shower I contemplated why the scuzz that grows in showers is always orange and seriously contemplated changing the whole bathroom decor to this colour so it wouldn't show up so much when I haddn't had a chance to clean the shower for two and a half weeks.  But I was strong, I was good, I did NOT say "I'll just clean the shower.".  I was firm with myself.  I contemplated making Jon a coffee to wake him up but said to myself "No!  You must sleep!"  So I went to my room to climb into bed.  As I walked through the door Kaylee threw up all over herself.  Unavoidably, "I'll just clean up and settle the baby"

Source: thecreativemama.com via Linda on Pinterest

I cleaned up Kaylee and Erin got up to use the loo.  I was tempted to spend some special time with her instead of going back to bed but I was firm with myself (and her) and sent her back to bed to read until the rest of the household awoke.  As I rocked Kaylee after cleaning her up I switched the kettle on to make Jon a coffee - bribery to get him to kid wrangle while I got an hour or so's sleep before I got up to express.  I snuggled Kaylee close, using the pressure of holding her to hold up my towel I was still wearing.  That counts as skin-to-skin therapy, right? I started dozing on my feet until the forces of gravity woke me up.  Stupid gravity.  I took Jon's coffee in to him, slid Kaylee into her bed and restarted her feed pump and stumbled into my bed.  I snuggled in to my lovely hubby's side and thought "I'll just have a snuggle and a chat for a little while...then I will sleep"  After a while he got up and had a shower and I dozed off...for ten minutes before Kaylee's pump alarmed again, the kids started getting up and I needed to express....

So there you have it.  The reason I fall asleep in odd places is because my body has trained itself to get sleep wherever it can get it!

Source: bippityboppityboo.tumblr.com via Arezu on Pinterest

Our Journey to PICU part 2

It took a while for me to get back to this and much of this time is a blur in my mind but as part 1 is the most viewed page on my blog, I think the rest of this story needs to be told.

You can read part 1 HERE

All day I was talking to people and trying to take in what was happening.  I was striving to do everything I could to make milk for Kaylee and asking repeatedly to see the lactation consultant so I could just make sure I was doing everything I could but whenever I asked she was away at lunch or busy elsewhere.  Kaylee's read outs, features and symptoms were causing interest and cardiographers, radiographers, registrars and the odd medical student were all coming in and quietly, respectfully, asking questions or performing tests.  By mid-afternoon there was a tentative diagnosis of her heart condition - Tetralogy of Fallot with transposition of the major arteries.  The scariest of these was the transposition of the major arteries.  If this diagnosis was confirmed, it meant that without surgery Kaylee would probably die within the next 24 hours.  So arrangements were being made to fly Kaylee to Melbourne.  It was gently explained to me that Kaylee would need some very heavy duty drugs, sedated and intubated for transportation to Melbourne via. air ambulance and that I would have to go by commercial flight the next morning. Previously, I was rarely in a different room to my newborns.  Now, Kaylee was going to be in a different state.  Across a body of water.  With strangers.

I had kept in touch with Jon by phone during the day and when I got confirmation that Kaylee was flying out that night, he was on his way in with the other children and his parents.  When they arrived I explained the situation to Jon over the heads of the children before I ferried them in, two at a time, to meet their sister.  They all gently touched her and said a few words to her.  I hugged them and they went home.  I found out that the lactation consultant had seen me taking the children in to meet their sister and decided that speaking to her was not priority for me - and gone home.  To say I was furious would be the understatement of the century.  While the lactation consultant would probably not have told me anything I did not know I needed to hear it all said by someone with that official title so I knew I had done everything I could do to protect my milk supply.  At that moment, I could do three things for my baby:  touch her, sing to her and make milk for her and I was determined to do all three of these things in an exemplary manner.

Trying to describe what was happening inside and out that day is like trying to describe Niagra Falls using a glass of water collected from there.  I could write for days and still not encapsulate what was going on in its entirety.  The ache within me was my daughter was leaving without me.  I would not be there to protect her and advocate for her.  At this time there was no place in my heart and mind to even consider anything outside loving her, keeping her breathing, keeping her heart beating and getting nutrition into her.  There were a thousand things to take in and think about.  Vicky, the young registrar who had first seen Kaylee, put her arm accross my shoulders as I sat at Kaylee's side told me that the doctor who would be transporting Kaylee was a friend of hers who was excellent.  She started to get Kaylee ready for me to have a quick cuddle.  Someone asked if I was "allowed" to.  Vicky shot a withering glance in their direction and stated simply "She is her mother." I cradled her in my arms for a moment and tried to push every ounce of my strength through my skin into her frail little body.  We placed her back on the warmer.  Over and over again I sang to Kaylee.  When I was pregnant I had been given Psalm 121 and the hymn "When He Cometh" to hold in my heart and I quoted the verses over and over to myself and sang the hymn to Kaylee over and over. 

The picture in my mind was that people would arrive and shove a tube down my baby's throat and take her away.  when the doctor and nurse for transport arrived they wheeled in a monstrous looking contraption strapped on a stretcher.  I cringed inwardly at its bulk and harsh appearance.  Then the swivelled it around and in the midst of all that bulk and technology, there was a little nest for my baby girl with a sweet, pink, bunny rug.  The doctor was sweet and funny with long dark hair and she joked around with the nurse who was tall with short curly hair and was equally sweet and funny.  I left the room while Kaylee was being intubated.  Some twins down the hall bellowed their displeasure and I wished fervently that my daughter could be that loud.  After an age I could go back in to see Kaylee and I saw something that meant more to me than words can express.  The doctor, Katherine, had wiped Kaylee's eyes.  In amidst all the urgent medical stuff, she had taken time to make Kaylee comfortable.  As I sat there she fiddled with Kaylee's long, thick hair and crooned to her lovingly and within me I felt something relax.  I chose to trust her with my baby.

I have since talked to Katherine about this and tried to convey to me how much that small act of wiping Kaylee's eyes meant to me.  I don't think I fully did - I am not sure it is possible to.

Jon arrived just as we were transferring Kaylee over into her little pink nest and we both said goodbye.  They wheeled her out and onto the lift.  We got downstairs a few minutes later in time to watch the stretcher load into the back of the ambulance.  The image of Kaylee - tiny, naked, frail and intubated - laying in her little warm, pink nest in the middle of all that equipment being loaded onto the ambulance against an inky black backdrop of night sky will forever be etched into my mind.  As they closed the door and drove away we got into the car and sat for a moment.  We held hands.  We prayed.  And then we drove home.

I may need a nap....

I just had the most INSANE few days.  On Sunday I took Kaylee over to the Royal Children's Hospital for her Cardio review. 

* I missed the plane because I got distracted when Kaylee had a bit of reflux and I had to suction her just before I got in the car and forgot her feed sets (which I can't feed her without) and turned up at the airport 15 minutes after booking had finished.

* The nice Jet Star man took pity on poor little blubbery me who was lugging a suitcase and three bags of designer-baby paraphernalia and changed my flight totally free of charge then let me into the EXECUTIVE LOUNGE and told me to help myself to the free drinks and nibbles for the next four hours!  And best of all there was a chair the PERFECT size and shape to put my skein of yarn around while I wound it into a ball.

* On the other end I totally forgot what colour my suitcase was and watched my blue case go past me three times before I realised it was mine.  I was about to go and have firm and business like words with someone about my "lost luggage" when I realised.  Thankfully my chauffeur thought it was funny.  In order to get a car with a baby seat I need to hire a chauffeur to take me to and from the airport and hospital in Melbourne - meaning I have the pleasure of leather seats, very polite drivers who hold a sign with my name on it and a $70 bill!  My driver was a very nice, funny guy from South Africa who was one of 11 siblings.


* Kaylee and I stayed in a nice hotel.  I had room service, a long hot bath and woke up to Kaylee vomiting stomach juices and needing suctioning 4 times.  I think she has a touch of a cold and the snot goes through her cleft into her stomach causing her to reflux.  Yes, you can thank me later for that lovely image.

* We went to the new RCH hospital building for the first time and it is SERIOUSLY like disney land with doctors.  It is AWESOME.  While we waited for the cardiology people we were watching meerkats play in their enclosure!

*  Kaylee's surgery is set for next February which is great.  I had talked myself into the idea that they were going to admit her and not let me go home so I packed for three months....just in case.  I may be a teeny weeny neurotic at the moment.

*  Kaylee's (insert unsavory adjective which I would NEVER use) feed tube kinked while I was in having the cardio assessment so rather than spending a few leisurely hours catching up with some cardio pals and checking out the new hospital before flying home late afternoon I spent 7 hours in emergency waiting for them to get a new tube in and didn't fly home until after 9pm eating mainly food from vending machines while I waited.

*  Emergency has a TWO STORY aquarium in it.  It was fantastic.  And I had some beautiful yarn which I happily cast on and knitted to my hearts content.

* I was secretly highly amused by the little boy in emergency who had put a potty seat over his head and gotten stuck.  The fire department had to be called in to cut it off and the poor kid screamed blue murder while it was happening but the whole waiting room burst into applause when it was all done.  The poor mother looked like she wanted the ground to swallow her up - I was struggling to keep from snorting I was laughing so hard

*  I got to educate a doctor, a nurse, and four radiographers about CDLS.

* The insertion of Kaylee's tube was a bit of an ordeal involving tubes coming out of clefts and causing gagging and vomiting and a poor young radiographer freezing like a bunny in headlights.  I am  considering getting my own lead apron I spend so much time wearing them and the hospital ones make me look a little wide in the hips.  The senior radiographer got the job done in the end.


* I got time for a 20 minute fly-by visit with one of our favourite roomies from our RCH stays - a fellow Tassie kid who is heading home THIS WEEK!  Yay for them!  And I got to sticky beak the new cardio ward which is BEAUTIFUL.

*  I got to my plane in the evening with time to spare and tried Krispy Kreme donuts for the first time.  I can't say I will be doing that again.  I slept the majority of the flight back to Tassie.

*  By the time I got home, administered meds, expressed etc it was past 2am.  Then the SODDING tube kinked AGAIN!!!  ARUGH!!!!

*  We called an ambulance because neither Jon nor I would have been safe to drive we were so exhausted.  I slept the whole way in to hospital with Kaylee laying on her right side on my chest.  Which jiggled her in such a way that the tube un-kinked itself before we got to hospital!  Yay!!  Inserting the blasted thing is an ordeal that involves a radiologist who doesn't start work until 9am, a temporary NG tube and continuous cardiac monitoring until the radiologist comes in and, in Launceston, me repeating Kaylee's diagnosis and treatment plan approximately 345 times before things get done so I was ecstatic when we got to the hospital and the tube was OK.

* I was then stranded in Launceston General Hospital at 4am.  Thankfully they took pity on me and gave me a fold out bed in the parents room and the lend of an IV pole and a pram for Kaylee.  I got to sleep somewhere around 5am and woke around 8am to a room full of parents making themselves a coffee.


* I decided to take advantage of the situation and do some paperwork at the hospital  and ended up getting home mid-afternoon.

I have got the first significant amount of knitting that I haven't had to frog (undo and start again) done since I had Kaylee and it feels great!  I just wasn't in the headspace to knit before now and whenever I tried to cast on I ended up having to frog only a few rows in.  It is so lovely to have something growing on the needles again!

Yesterday we had to go into town for a speech therapist, occupational therapist and physiotherapist assessment.  They have given me a little wedge type thing to lie Kaylee on, recommended a pillow to help with her head flattening and told me I am doing everything they would recommend and more so I will see them again in March.  We had a lovely day with picnics in the park and I am looking forward to not going anywhere for two days now.  I'm very tired.

Ch-ch-ch-ch-ch-changes

In the last few months my character has experienced some changes.  Contrary to the belief of those who constantly call me INSPIRING, in spite of THIS post, not all the changes are for the better.

A friend was talking to me on the phone the other day and complaining about her toddler's antics.  All I could think was "If I ever catch Kaylee climbing on the dishwasher I am going to take a photo and give her a lolly.".  Where once I may have offered supportive comments, I just felt like yelling down the phone "SUCK IT UP!!!  Your kid is being a KID!!!  BE THANKFUL!!!!  What were you expecting when you became a mother?  An accessory?  You have a little human being with a will of his own - dealing with this stuff is your freekin JOB!"

Thankfully I bit my tongue and when I got off the phone and calmed down I was able to remember being the mother of one very lively toddler Erin and - at times - feeling exasperated and confused by behaviour which I know now is completely and utterly normal and would be thrilled to see Kaylee engage in.

I also spoil my toddler now.  Not just "Oh here have a lolly before dinner" spoil but "Oh you're having a tantrum, have WHATEVER you want plus a few other things you didn't even ask for!  And while you're at it, kick me in the head and pull my hair and I will tell you just how smashing I think you are and kiss your neck" spoil.  Yeah, I know.  I'm working on it.

I gripe, talk behind people's back and hold grudges too.  There are a few nurses at the local hospital who would probably be a little taken aback if they heard me talking in the privacy of my own home about them.  When they came on shift the last time we were there it took a LOT of self control to be nice to them at all.  As a rule I think nurses are rock stars....but there are exceptions to every rule apparently.

I am highly critical, controlling and possibly a teeny weeny bit sarcastic.  When we went into hospital on Thursday and had a temporary NG tube placed I wasn't sure about how it was taped but didn't say anything straight away.  I went down to say goodbye to my other kids then came back to find that lo and behold, Kaylee had pulled out her tube.  I said to the nurse "Hmmm, yeah.  It's all in the taping." and proceeded to instruct this poor nurse (who probably had fifteen years experience) how to tape a tube properly.  When Kaylee had a new tube she ended up being taped up enough to look like a mummy because the nurse wanted to escape further "instruction" from me!

Yeah, they love me in there.  I promise.

Readers who have been friends of mine for years will be snorting with laughter about now.  Not because of my incredible wit, but because they know a secret.  These aren't ACTUALLY huge changes.  I've actually always kind-of-a-little-bit been sarcastic, mean, judgemental, critical, controlling and over indulgent with toddlers (not so much Erin, poor kid, but the others, yeah, little bit).  I could get away with it more if I had a British accent but alas I grew up in Regional Central Victoria, Australia.  It turns out that I am still me - but more so.

It turns out that I didn't get a kid with special needs because I am some kind of saint or martyr.  It also turns out intense life experiences are a little like a furnace with silver - they bring the impurities to the top.  In spite of the social expectation that we are saints and martyrs, many mothers of kids with special needs are, as one particular blogger puts it, weary women.  Many of whom do not tell it like it is because they don't want their frustration with the situation, illness or condition to be interpreted as not loving their child.  Many of whom do not share their load because the reality is most people would prefer to keep an untarnished image of the saintly version of "that inspirational woman with the special needs child" rather than get involved in the marvellous, messy, painful, tragic, exhausting and often-covered-with-bodily-fluids world raising special needs Kids.

Dear Lord,


I know that I haven't got it all together.  Help me to let go and let your Spirit shine through me with love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control.  Help me to get people to understand that anything good they see in me is because You created it within me and are shining through me.  And most of all Lord, help me not to kick the next person to call me inspirational in the shins.


Amen

A short update

Just writing to let everyone know we're alive!

This week was a week of organising, mess shovelling and handing out meds.  Other than a family trip to the park, Kaylee and I haven't gotten into the car this week at all which is refreshing.  The week itself however was as insane as ever.  Kaylee is doing well.  We are getting ready to fly out to Melbourne tomorrow for her cardio review.  I am hoping that will mean we fly in Sunday and fly home Monday but I am all too aware of how things roll with Kaylee. Unfortunately we have had colds hit.  I have a feeling the cold was picked up at the hospital in the playroom when we were waiting to have Kaylee's tube changed last week.  Christopher spent a night in hospital with asthma and he and Anna both have their own regime of drugs at the moment which means that Jon and I are playing nurse to someone for a major part of everyday.

We have decorated our Christmas tree though.  I was going to squeeze in a bit of Christmas Cheer if it was the last thing I did!


Making it a short one today though, I still have to pack for tomorrow.

Etiquette

Some people have told me that they find it hard to know what to say when they meet the parents of a special needs/medically fragile kid.  I can't speak for all in this situation but I thought I'd put together a few do's and don'ts.


Do...

...notice and comment on something other than obvious 'defects' or medical paraphernalia.  As a mother of  a child with a tube taped to her face, I love it when people notice her eye lashes, hair and cute clips and clothes before her other differences.

...feel free to ask respectful questions about Kaylee's differences or medical bits and bobs.  I do understand people's curiosity and I want people to understand Kaylee better.


...just say hi and chat!  About the weather, any of my six kids, the price of cheese - whatever!  Kaylee's differences do not define us or occupy our every waking moment. 

Don't say...

..."Wow, she gets her food through a pump?  It must be great not having to feed her all the time, you must get lots of sleep." Um.  No.

..."Oh, at least you have five other normal kids."  Kaylee wasn't the booby prize at the end and it is a stretch to call anyone in my family normal.



..."You are an amazing, brave, wonderful, inspiring person.  I could never do what you do." I am just a Mum doing what many other Mums in this situation do.  I realise this is intended as a complement but it does make me feel a little like a fraud and a bit uncomfortable.  Other Mums of special needs and medically fragile kids have said they feel the same to me.


..."Oh, I know exactly what you're going through.  My kid was born a few weeks prem and was tube fed at the hospital/was in PICU for a week with an infection/broke an arm and needed surgery/insert other scenario here." Anyone who has experienced this world knows you can only imagine what other parents in this situation are going through.

..."Kids with syndromes are always lovely." This is kind of like saying all fat people are jolly, all short people are insecure and all dark skinned people are musical.  It's called stereotyping.  Kaylee will have days where she is lovely and days when she is a right royal pain in the butt - just like my other five!

..."So are you going to have any more kids?" Right now I am not making any life long decisions, I'm just living day to day.  I am also trying to fit 36 hours worth of work into every 24 hours (the only reason I am writing this is because I can type while expressing or calming a grumpy baby) so another baby is definitely not priority right now.  It's really not a decision that I choose to share with the world at large anyway which is why I usually answer with wisecracks.

While all the don'ts are taken from real life, I do realise that the people who make those comments are genuinely trying to be nice!  I always try and look to the sentiment BEHIND a comment, even if the comment itself is less than appropriate.

Things said with love, compassion and friendship are usually welcomed with open arms.

Not so much easy

You know how last week was easy?  This week - not so much!

Not disastrous.  Not terrible.  Not even bad.  But definitely not easy!

Sunday we got our morning's work done then spent the afternoon getting ready to head out to an evening church service....only to arrive and find out that church started at 5pm not 6pm and we were 1 hour and 10 minutes late.  Doh.

Monday we were home and flat out just doing the normal stuff.  Trying to climb Mount Fold-more, getting some school work done, pumping, meds, laundry, cleaning etc.

Tuesday we dropped the kids off with some dear friends for the day and took Kaylee into Launceston with us to try and sort something with Centrelink.  An exercise in smacking one's head against a brick wall.  We kept sending the place into a panic because Kaylee's feed pump kept alarming making the same noise as their duress alarms.  But we did end up with half the women in the office crowding around Kaylee's pram goo-ing at her.  Kaylee cracked a HUGE grin at a light fitting there.  The kids had a fabulous time with their Aunty Nola and Uncle Ced (their honorary extra grandparents) playing non-stop. Nola gave the kids stacks of books and movies that her grandchildren no longer use - not to mention a gorgeous doll house which I kind of love (I may have spent a little time playing with it today).  We didn't get home until well into the evening and it was late nights all around.

Wednesday we were in town once again for a weekly weigh and measure which went BRILLIANTLY.  Kaylee is now 3.6kg and is doing so well my paediatrician is happy to meet every two to three weeks rather than weekly!  He is very impressed with the improvement in the range of motion in Kaylee's knees and elbows.  We went to the library and ran a few errands then we went home.  Late.  Again.


Thursday I was looking forward to a quiet day where we would celebrate Billy's unbirthday (we have a special "half way" celebration between birthdays called an unbirthday - Billy turned five and a half) with cake and cuddles and get some practical things done around the house.  Unfortunately, things did not go to plan. We had a visitor for a few hours in the early afternoon and then Kaylee's tube blocked.  We loaded everyone up and headed into town to hospital.  Again.  Of course we got there after business hours when the radiographers had gone home so we needed to place a NG tube (into Kaylee's stomach) so we could get medicines and nutrition into Kaylee but we needed to monitor her continuously until we could place the NJ tube (into her intestine) the next day so Kaylee was admitted overnight.  And one very sad little boy had to put off his unbirthday cake until the next day.

Friday we spent nearly the whole day trying to get a new tube placed.  First simply FINDING one in the hospital was a bit of a feat.  NJ tubes in babies aren't very common in Launceston apparently.  I spent most of the day getting ahead on paperwork (or getting a little more toward treading water with paperwork!) and working to get Kaylee's tube placed.  We finally all got home about 7pm when I made spaghetti and we decorated a cake at the unbirthday boy's request.  It is safe to say the kids were wacky.  Mum disappearing into hospital with Kaylee brought a lot of big feelings that had been simmering to the surface so we had a little bit of emotional triage to do and chocolate cake was deemed necessary.

Today was like a drink of cool water.  Thank the Lord for Sabbath!  Guilt free I ignored the work and focussed on resting with my husband, my kids and my beautiful in-laws.  Poppy got to hold his little girl for the first time ever and lay eyes on her for the second time ever - the last time was just before she flew out to Melbourne for the first time. 

This week was full on and exhausting.  I miss the peace of weeks on end at HOME. I would love to spend a week just hanging out with my kids doing nothing but the ordinary.  Between having a large number of children and having an adorable tiny baby with a tube taped to her face, anonymity in public places is impossible.  I have had the "Oh, was she very prem?" conversation at least fifteen times this week, once at 4am with a nurse.  Not a horrible conversation, but every now and then I would like to go out and blend in rather than give spontaneous tutorials on CDLS, genetic syndromes, heart defects.  I get tired of saying "No, my daughter is not 'normal' and she is unlikely to be in this world as we know it.  But hey, normal is totally overrated."  Getting everyone in the car had been streamlined but now with various pumps and meds to be taken into consideration it is a bit logistically challenging.  It can take us a good couple of hours to get everything ready and everyone out the door now.  Even if we get this next week at home (which I am hoping we will for the most part) ordinary will take a little while to kick in as this week we were only home long enough to make messes, not clean them!  My house looks a little like someone picked it up and shook it.  At least three days of shovelling mess is needed.  

HOWEVER

We had wonderful times at the library, read chapters of our read aloud, spent time with each other and people who we love, Kaylee made progress, Billy turned five and a half and the whole week has been dotted with beauty and love and comfort and wonderfulness amidst the crazy.  I think once you have had the PICU experience it changes your outlook completely.  For me any week where my kids and husband all breathed, had their heart beat, stayed the right colour and got nutrition into their bodies is pretty OK.  A week when we are all together is pretty terrific.  A week when a doctor looks at my baby and says "Wow, that's great!" is freaking brilliant.


This week was challenging, exhausting, full on; but it was also pretty brilliant.

Ginger Bear goes to Hostible

Ginger Bear has a piece of yarn taped to his nose.

The other end is taped to a small ziploc bag which is topped up regularly with a toy baby's bottle.

Ginger Bear has a 'lion' (line) on his 'test' (chest) - so I am reliably informed (I can't see it, the ginger hair seems to be blocking my view).

Ginger Bear is a little bit sick and needs to go to hostible (hospital).

Ginger Bear is now in the hostible with his mummy taking care of him with the help of nurse Erin who is dressed in scrubs and wielding various syringes and other medical implements.

I think I will let them have their game for a little longer, school work and chores can wait.

Easy

This week was so.......easy.

Don't get me wrong, it was still busy.  Crazy busy.  But those two adjectives have described my life for a good few years now so there is a degree of familiarity there.  There was the odd mini-disaster.  For example the cap came off the medicine port on Kaylee's tube this morning and the pump spent a while feeding Kaylee's rocker instead of feeding Kaylee!  There were challenges.  We got Kaylee's pram this week.  I gave mine away last year because it's been years since I used it, my newborns usually just get put in a baby carrier.  The pram itself is fabulous but getting the pump hooked up and hanging the bag so it ran without alarming was a bit of a logistical challenge.  We got it going though and spent the a good couple of hours in Kmart.  There were no crises, no traumas, no disasters.   Our paed is very impressed that we have had two weeks at home without her tube being pulled out!

We are finding our groove, our rhythm, and for the most part I have been pleasantly surprised how like our old normal our new normal is.  While I am expressing I have someone or other on my knee or sitting beside me going through their school work or reading with them.  We have celery on the kitchen bench drinking food dye (our current science project - the kids have managed to make some fabulous multicoloured celery), home-made Christmas cards half finished and aside from Mount Fold-more on the couch and a disaster area that is my bedroom the house actually has some form of order to it.

And the kids are pretty fabulous.

I do some range of motion exercises with Kaylee twice a day and at least one of those times we do them in a warm bath (she loves her bath!) so when I get her ready for her bath I often talk to her about her 'aqua-aerobics'.  Today Christopher asked her if she wanted to do her 'aqua-batics'.  That kid cracks me up.

Anna sings Kaylee songs of her own composition.  My favourite has to be the 'Settle Down Song'.  It consists of two lyrics - 'settle' and 'down' sung at a very high pitch.  The thing that cracks me up the most is that it works.

We went to Kmart this week so the kids could spend some money that they got.  Billy found a toy dinosaur left on a random shelf and fell in love with it.  The thing was meant to make noise but did not so we found them on the shelf and found one that worked - no joke it sounded like an evacuation siren.  Billy opted to buy the one that DIDN'T work!  He was quite upset when we got it home and a few days later it started working again and cried until I told him I'd take out the batteries for him.

We've been learning a bit of sign language so we are familiar with it if Kaylee needs it as she grows (a lot of kids with CDLS have speech difficulties) and Andrew is already picking up a few signs the smarty pants!

Erin and I watched Bambi 2 for our girls night (her choice, not a cinematic masterpiece but we had a great night) and we bought a big bag of marshmallows.  She spent the next few days making hot chocolates for the other kids and floating her special marshmallows in them.

Kaylee has started reaching out to touch her toy Mr Flutterby and is becoming more and more interactive.  She is utterly precious.

We have had our emotional and clingy moments to but they are the exception rather tan the rule.

Having a full freezer has definitely helped (thanks Anita and Christina especially!) and having my fabulous hubby home for a time has been wonderful.  He went back yesterday to work for a day and we all missed each other lots!  I did heaps of tidying and organising before Kaylee was born and it is paying dividends now.

Things may change even from day to day but right now it is all so easy and good I can hardly believe it.

Top Ten For PICU

I know there are a couple of readers who are facing the PICU experience in the near future so I thought I would share what has helped me.  Here are the top ten items I will be taking with me for my next PICU experience:

1.  My Hospital Bible.  When Kaylee was in hospital I would read two psalms, a chapter of Proverbs, Matthew chapter 6, John chapter 14 and Romans chapter 8 every day (I still do most days!) and it carried me through.  There are all sorts of underlinings and comments in the margins of that Bible.

2.  My breast pump.  I have a small, portable electric breast pump that I bought from Nursing Angel.   Being able to use it anywhere is a big bonus as I didn't always want to use the expressing rooms and seeing as Kaylee is now permanently hosting a colony of antibiotic resistant bacteria thanks to one of her hospital grade infections I can't use a hospital pump at her bedside or anywhere else where she has her nappy changed.  Being able to pump in my room just before I sleep and just after I wake up also makes life easier.

3.  My MP3 player.  Being able to listen to music such as Josh Garrels was a huge lift to me.  Especially on days when I had loud room mates to contend with or I just needed to zone.

4.  My netbook.  Writing is my therapy and being able to plug in to the internet for research and communication with a wireless broadband stick (I bought mine from Family Resources at the hospital and paid much less than retail) was a great boon.

5.  My mobile phone.  I hate mobile phones and didn't own one until the night before I flew out with Kaylee for the first time.  I still hate them, but I recognise they have their uses.

6.  My drink bottle.  It is hard to remember to eat, drink and sleep in this situation.  Having my drink bottle with me meant it took slightly less effort to stay hydrated than it would otherwise be.

7.  A go-to guy.  I think it is vital to have someone to be your contact with the outside world.  Bek played that part for me during that first Melbourne stay and it was invaluable.  People will be curious and want to help, I think it is necessary for ones own sanity to have a central point for everyone to get their information from to prevent the phone ringing non-stop.  It is also helpful to have someone close by to act as gopher to go and get anything you need.

8.  Comfortable and presentable clothing.  Lots of sitting, lots of strangers, not a lot of time to choose outfits or do laundry!

10.  My leather journal.  I use it for journaling but mostly for writing down things like the nurses name, things I want to research

If you are a reader who has a friend or family member going through the PICU experience the things that helped me most were the fruit basket I got sent, some home made soup, SMS and email messages of encouragement (often I had the phone off when I was with Kaylee and when I was away the phone ringing would make my heart stop a little) and practical offers of help directed to my go-to person.

Hopefully there is something that will help someone else going through the experience to make the trip a little smoother.

An update and a Thankyou.

Kaylee is doing everything she should and nothing she shouldn't.

Her feeds have gone up to 25ml per hour over 22 hours which gives us three hours a day disconnected from the feed pump which is awesome.  I have a love-hate relationship with the feed pump and breast pump.  Kaylee spends 22 hours a day hooked up to a pump, I spend 6-8 hours a day hooked up  to a pump.  We're all about the pumping!  I love that we can feed her this easily - not so long ago Kaylee would have had to stay in hospital until after she got over needing continuous feeds because she would have had to have a nurse sitting by her bedside 24 hours a day pushing in her feed.  I love that my milk is going in to Kaylee and that it is helping and protecting her.  Right now it is all Mama milk with no alterations.  It is sort of like having a really close friendship via e-mail.  I am constantly swirling her bag and poking it so as much cream as possible will go down the tube rather than stick to the inside of the bag.  We have worked out how to hang feed in the car and my breast pump also plugs into the lighter socket in the car which makes us fully portable.

I put her to my breast about twice a day for some 'oral play' so she can pretend to feed.  This helps her mouth muscles to keep working and helps her associate good and happy things with having things in her mouth.  Many kids who are exclusively tube fed develop oral aversions where they hate anything going in or near their mouth.  This gets to be a bit of a problem when it comes time for them to actually start eating.  I have a vague hope that perhaps after her surgeries she may start to feed direct for at least some of her food intake but it's a long shot and we will have to see how we go.  Seeing as Kaylee is being constantly fed she never feels hungry.  This means she sleeps a lot with no hunger pangs to wake her for feeds and cuddles.  I make the decision several times a day to let her sleep (which she needs in order to grow and get big enough for her surgeries) or wake her for cuddles and play (which she needs for cognitive and physical stimulation and development).  I check her tube about twenty times a day to make sure it hasn't moved and I tend to fret about it first if she is upset for an extended period which is silly because it doesn't hurt her and is unlikely to move unless someone moves it.  But a tube is a tube and while we are positively minimalist in the tube department compared to the last couple of months it is a yellow reminder lying across her face every time I look at her of the road we have travelled and some of the big hills (known and unknown) that are yet to come.

Kaylee herself is delightful.  Her eyelashes go on FOREVER!  She found her hand last night and I spent a good ten minutes or more just sitting watching her watch her hand.  Her brothers and sisters adore her and it is rare that she isn't the centre of someone's attention.  She is still in size 00000 clothes but there is one garment that she has grown out of.  She is quite the fashionista and the big kids love to choose her hair clips and clothes whenever they are allowed.  I would swear that sometimes she is smiling although it is hard to tell because the corners of her mouth naturally turn down and often when I think she's smiling she has her dummy in her mouth.  She also farts like a champ much to the delight of her brothers.

The bigger kids are wonderful.   We did a science experiment this past week where we put celery into food dye solutions and the four oldest had a blast.  Unfourtunately a couple of the kids had explosive diarrhoea this week which made things.....messy.  But through copious use of hand sanitiser etc.  Kaylee, Billy and I managed to avoid it and everyone is recovered. We are getting into something resembling a routine now.  We have started a new read aloud (Danny Champion of the World by Roald Dahl).  We watched a couple of movies yesterday but for the most part their screen time has been infrequent simply because the rest of our life is so full and rich. 

It has been odd finding a new normal.  Life BK (Before Kaylee) saw me changing 95% of the nappies (yes, I was that possessive over changing nappies) and doing the bulk of the cooking and cleaning while Jon worked ten hour days four days a week.  When he was home we would all spend time together working on projects or going on road trips.  At the moment Jon is home all the time and is changing at least as many nappies as me (more during the explosive period) and doing as much if not more cooking and cleaning.  As we settle in more I would like to take more of my old job back.

To be honest, when we were in the hospital I missed cooking and cleaning a lot.  I regretted not spending more time doing it when I was home.  I have come to realise all that time I spent putting off those tasks then being frustrated because my home was less than pleasant was so wasted.  The effort taken to just get in and do it was insignificant compared to the reward.  I have come to appreciate the small comfort of a tidy home, clean clothes and a hot meal so much more than I thought possible and I resent the wasted opportunities in my past where I could have had these things with minimal effort.  There is a saying "you don't know how strong you are until you have to be strong".  It could also be said "you don't know how hard you can work until you have to work hard".  When we were in the hospital I worked 14-16 hour days most days and I worked harder than I ever have before.  And it didn't kill me.  The effort to get up and wash the dishes or fold a load of washing seems so small in comparison.  Now days amid the strange mix of pumping, meds and normal life I am usually up somewhere between 5am and 6am and falling into bed somewhere between 10pm and 11pm on a good night (at times, later) and although my baby sleeps through most nights, her feed pump doesn't!  Compared to what I am doing now, what I was doing was a cruise.  But my day is full of cuddles, smiles, conversation and impossibly long eye lashes - and all of us together again.

I need to take a moment to shout out a big thankyou.  To be honest, I am not totally sure who I am thanking for what because during the blur of those weeks when Kaylee was in hospital we experienced a huge influx of generosity.  People blessed us with gifts, some I asked for through the blog but most were totally unasked for.  Much of what we have I have lost track of who gave it to us.  My freezer is full of food (two dear friends in particular went above and beyond the call cooking us up a storm!).  Kaylee is the best dressed baby about.  We are about to drown in clothes for the other kids.  I have the most beautiful shawl and crochet layette that my Ravelry forum sent me as well as yarn and needles dropped off for me at the hospital by friends who I am yet to meet.  People from my Homeschooling forum also poured out generosity over me while I was in Melbourne with food and other practical help as well as prayers.  The lovely Bek was a super pit crew chief during that first Melbourne stay when my world was imploding.  Friends and family watched my kids and helped Jon out in practical ways.  Jon's old work collegues passed the hat around to send us gift vouchers for Mother's Direct and cloth nappies which has enabled us to save huge amounts of money by having Kaylee in cloth nappies for the majority of the time (a bottom that small requires teeny tiny nappies!) and helped us buy some practical items for Kaylee's day-to-day care and some literature to help inform us.  Many, many people surrounded us in prayer.

We have also had a number of people give us money.  We are doing OK with our day-to-day expenses for the most part so we are hoping to be able to keep the majority of the monetary donations to help pay for our whole family to stay in Melbourne together during Kaylee's next heart operation.  This feels like an unspeakable luxury.  Leaving my other kids for an indefinite period again seems like an almost impossible thing to do and having Kaylee and I disappear would not be good for Jon or the kids either.  The Royal Children's Hospital will be in their new building by the time we get over there again with a two story fish tank, meerkat enclosure and fabulous set up to entertain sick kids and their siblings.  We also have family and friends over there who will be happy to help us out if we need it so it makes sense for us all to be in Melbourne and I pray that it is possible to do this.  I am certainly not asking for people to give us money, but I did want to let those who have given us money know what we plan to do with it and express my appreciation.

So thank you all of you.  Those who have prayed.  Those who have chipped in practically.  Those who have simply sent a few words of encouragement at the right time.  I am glad to be sharing our journey with such an amazing bunch of people.

My Arms Are Tired

A poem I wrote while Kaylee was in hospital.

My arms are tired

from holding on to you

It's been seven and a half weeks now

since you were born

since I have slept in my own bed

since I have eaten a meal with your brothers and sisters

around our table

since I have scolded them to pick up their toys

or finish their dinner.

or tucked them in with bedtime stories and prayers

For seven and a half weeks

I have slept in strange beds

on couches

and on chairs next to your warmer

the beeps and bleeps of monitors

weaving through my dreams

I have seen a world I never knew existed

and though you hardly way a thing,

my etherialy beautiful daughter,

my arms are tired

from holding you

I am pressed in at every side

by the pained souls of others

as we watch our children

struggle and fight for life

I have prayed until my voice was just

a solid lump in my throat,

I have sung with my voice cracked

my hand touching your hair

wondering if you could hear me

I have tried to breathe for you

just to keep you going.

My arms are tired

from holding you

and though my arms are tired

and my heart is breaking

and my soul has shattered

into a thousand shards

and the world is now viewed through

the prism of my tears

I have never felt stronger

and the world has never looked

so beautiful