Life and Times of Jess

The plan WAS working

2012-01-30T08:18:00.001+08:00

Well, it's that time of week again and I guess you are all dying to know about the state of my fat cells.

Not good.

I have officially gained back some of the weight that I lost.

98 kg as of last night rather than the 97kg weighed in at the week before.

I completely lost track this week. I didn't even print out my little plan which does show me that it WAS working. I feel like I spent 95% of my waking hours in the last week sitting in an arm chair pumping breastmilk or trying to calm a very sad baby and I did not take time to keep myself on track - which is silly.

There is a reason they recommend you put your own oxygen mask on first before helping others if they come down on the plane - it is so you don't end up useless on the floor while those less able suffer from not having you take care of them.

So yesterday, I took a walk - only 15 minutes, but a walk none-the-less. I have printed out my plan and I have signed up at www.sparkpeople.com so I can track my calorie intake.

And I still have time to reach that goal of 95kg before Kaylee's surgery.

Update

2012-01-28T11:19:00.000+08:00

This week has been tough. On Wednesday Kaylee upped the ante and went from vomiting yellow with a brown tinge and flecks of a coffee ground like substance through it (stomach juices with semi-digested blood) to vomiting what looked like coffee made from dirty water without a filter in the peculator (lots of semi-digested blood). The good days took me off guard because most days she has been upset and vomiting most of the time. We started her on a new drug last night to help her gut motility - to keep her intestines moving things a long. The docs thought perhaps things were backing up and creating pressure in the intestine against the valve from the stomach causing her to become nauseous and reflux. This does make sense because she does get worse just after I give her meds which puts a larger volume through her tube but at the same time she didn't really seem to worsen when the feed rate was put up so I do not think we have a magical fix - but I am willing to give anything a go at this stage. I read the possible side effects before giving it to her which was kind of horrifying (the words "may become permanent condition" beside a particularly debilitating - but thankfully rare - neurological side effect almost put me off) and gave the drug to her anyway. So much of what we do with Kaylee is choosing the lesser of two evils. And this morning DID NOT wake up to the sound of her vomiting and choking for the first time in I don't know how long. It is too early to throw any parties yet, but I am allowing myself a glimmer of hope.

There is still no word on what date we will have the surgery but we will get the call sometime in the next two or three weeks. I have a love/hate relationship with the surgery. I love the thought of it being done and being able to focus on some of the other issues - I hate the thought of doing it with a passion.

We have had good moments and fun moments too. Friday is cleaning day when we focus on life skills rather than academics. Anna came up to me at about eleven in the morning and said "We forgot to do history! We have to do history." She is quite taken with the tales of British and Scottish Royalty. I'd say it was because of all the crowns and princesses but the fact that "Bloody Mary" is actually one of her favourite royals is a little disturbing and she got far too excited about tales of the Gunpowder Plot and Guy Fawkes being tortured and beheaded. There is a little element of "off with her head" about that girl.

I have put a cupboard in the girls room to keep craft stuff in - a LOCKED cupboard with a condition that if I find craft elements strewn over the floor I will be confiscating Erin's key! So the girls room is a whole lot more usable now. As I type Erin is painting her paper maché ladybugs she started making before Kaylee was born with Christopher as her apprentice and they both seem to be loving it. It is good to have all her craft stuff organised so perhaps now we can get some project completed.

Billy has graduated to the next reader and has exploded academically. I find kid usually have a moment when they "click" and it all starts falling into place. It is great that he has had that moment as he has been DESPERATE to read for about a year now and discontent to just plug away at it slowly with so many of his favourite books waiting to be read.

Andrew is now well and truly walking and his vocab is exploding. We are getting more than just "Dog....woof-woof" now. The opinionated child had decided that he is feeding himself and outright refuses to eat if someone else tries to feed him. Messy for spaghetti, fried rice, sandwiches...pretty much messy all the time at the moment!

Christopher is now painting Erin's aphids for her (the ladybugs needed something to eat). He has gotten Erin to give him "school work" a few times this week, being discontent with the simple letters and numbers stuff I was having him do. He adores his older siblings and wants to join in on this school work caper.

Here's praying that this week Kaylee will be able to start healing from the damage the reflux was doing to her body, that we will get a call with a date for this surgery, that we will continue to have all the good times we've been having and we will find even more along the way.

Have a good week all!

Perspective

2012-01-28T10:21:00.001+08:00

This past four months has given me a gift.

I'm not talking about the adorable Kaylee Grace, as deliciously wonderful as she is, I am talking about a different gift. Lovingly wrapped in heart stopping terror and topped with a quaint bow of grief and trauma.

It's called PERSPECTIVE.

Source: piccsy.com via Sandi on Pinterest

And it pervades every aspect of my life.

I thought I was a person who would tell a friend what I thought but I now realise I too often shut my mouth, pretending it was because I was open minded or cared about their feelings.

The truth is, it was often because I was afraid of what they would think of me if I disagreed with them.

Now, I pray I will always have the strength, wisdom and fortitude to lean over, place a loving hand on their arm and say with a voice filled with love and compassion, "Dude, you are totally screwing up your life", when the situation warrants it.

Because when you have seen birth and death brush so closely, you realise that stuff matters and life is short.

I thought I was a person who realised what really mattered in life. I thought by being thrifty and not buying nice clothes or nice things even when I had money to do so I was being good and righteous. I thought that by quashing the little thrill of joy that simple pleasures gave me I was earning my place and not being any trouble to those around me.

The truth is I was still carting around baggage that told me that I wasn't worth the cost of those small pleasures.

Now, I pray I will drink deeply of the joys of simple, pretty things. That I will sip a mocha without feeling guilty because it cost money. That I will spend a few dollars on things that serve only to bring me joy occasionally without beating myself up over it.

Because when the only thing you can do for your baby is put a bow in her hair, you realise bows matter.

I thought I had a good grasp of what it meant to be a good friend. I thought I realised the importance of friends in my life. I thought I had a pretty good idea who was and was not a true friend in my life.

But the truth was I had no idea.

I had no idea that a friend from halfway around the world who I have never met, or even spoken to, in real life could carry me through hell with a hand full of eclectic love tokens she had tossed in a box months before - and that the weekly-ish emails we exchange filled with the sweet and sour nothings of every day are actually an elixir to my soul. I had no idea that people were so kind. I had no idea of how much those prayers, words of encouragement and the time people put into ministering to me and my family could mean. That a fruit basket from a stranger would help me put one foot in front of the other when my world was falling apart.

Now I pray I will always be there for those I love as much as they will allow me to be. Even when they are not fun. Even when their drama is no longer exciting or new or thrilling to be a part of - I will recognise that they still need to live it. Every. Single. Day. And that a kind word, a few moments of my time, a touch, a look, a gesture just might be the fuel they need to keep going.

Because when you are falling apart, the people who are there to pass you back pieces of yourself matter.

The word "crisis" comes from a Greek root word meaning to sift or separate. This is what the last few months have done for me. They have distilled my life. Forced me to let go of all of those things that did not truly matter and hold hard - FIGHT for - those things that do.

And the dream is back on....

2012-01-23T06:30:00.004+08:00

I have lost 1kg. I've gone from100kg (220 pounds) to 97kg (213.4 pounds)

60% of the way to my February goal so if I get into gear maybe it will still happen.

Even with the cake/PMS brain, horrendous reflux from Kaylee meaning I spent most of my time in an arm chair and lack of time meaning I defrosted meat pies for lunch or ate chips on more than one occassion - it's progress.

So, Olympic dreams aside, why do I want to loose weight?

* I need to be in decent condition to cope with the physical demands if raising my beautiful brood.

* I will handle stress better if in reasonable condition and I anticipate a little stress in our future!

* I want to feel good about myself and catch the eye of my darling hubby.

* Seeing as Kaylee may be dependent for her whole life I need to be as healthy as I can for as long as I can.

* I want to be able to help my kids out when they are adults - either with my grandkids or whatever other endeavour they choose to pursue - and I need to be fit in order to do that!

* I am cheep and finding decent quality clothes, in styles I like, in my size is expensive and time consuming

So eyes on the prize.

No birthdays this week.

Perhaps I will even get to go for a walk??

cake-brain/PMS-brain

2012-01-21T11:53:00.000+08:00

OK so on Monday I blogged that I lost 2kg.

After that I felt fantastic.

I felt invincible.

I felt FREEKIN' AWESOME.

"Pffft," I thought "This weight loss thing is so licked.

Hey I may even be down to my pre-ERIN weight by the end of the year at this rate. I am going to run a 10 Km race this year. And maybe a MARATHON next year.

After that I should totally go in the Olympics. I would rock the Olympics.

If I win a gold medal in the Olympics I should totally become a writer and motivational speaker.

I am sure that the fact that when people call me inspirational I crack under the pressure of living up to their expectations and become a quivering mess in the corner will in no way impede my success as a writer, motivational speaker and Olympic Athlete.

And when I am a writer, motivational speaker and Olympic Athlete I will give my testamony and thousands, nay, MILLIONS of people will love Jesus and the world will be a Happy Place. There may even be world peace. I should have started loosing weight YEARS ago."

And then, just when I was figuring out my training schedule for my Olympic dreams around my mothering commitments etc. TUESDAY came.

And with it came Anna's third birthday.

And cake.

Now I think I have mentioned before that I am a former bulimic. While I haven't actually done anything actually bulimic for over ten years now, I still have traces of food obsession and compulsive eating....just to keep me humble. This means that when there is cake/chocolate/sweets/anything remotely yummy-treat-like in the house a part of my brain gets like this

Source: hyperboleandahalf.blogspot.com via Jess on Pinterest

(by the way, if you are not bothered by the use of one four lettered word - which is technically a six lettered word because it has -ed on the end - click through to the blog that pic is from. It pretty much describes that part of my brain in detail and it makes me laugh so hard I snort)

But I figured that seeing as I was practically an olympic athlete now and on the cusp of winning the world for Jesus I would be fine with a little cake in the house - right?

I took Anna to the shop to choose the lollies she wanted for her cake. I used to think that I should make cakes like this

Source: familyfun.go.com via Jess on Pinterest

But I actually make cakes like this

Source: dailymail.co.uk via Jess on Pinterest

and so now I just let the kids choose a bag of lollies and decorate it themselves.

Which meant I had half a bag of Jelly Beans AND a vanilla cake, iced and covered with Jelly Beans.

The cake-obsessed part of my brain was going into overdrive and my olympic dream was starting to look a little shaky.

I would be working away, minding my own business and cake-brain would say "Cake?"

"No, we are going to the OLYMPICS we will be FAMOUS and HELP PEOPLE. You do not need cake."

Then five minutes later.....

"Cake?"

"No."

...

"Cake?

"WE HAVEN'T EVEN SUNG HAPPY BIRTHDAY YET!!"

...

"Cake?"

This went on for about two hours.

But I was good, I was strong.

I waited until after we sung happy birthday then dutifully ate onlyone piece of cake with the children to celebrate Anna's birthday. Then got it out after the kids went to bed and ate another two pieces.

All week I have been contending with the harassment of cake-brain which, toward the end of the week, was joined by PMS-brain. I lothe PMS-brain. I lothe it so much, I stay pregnant most of the time to avoid it. If PMS-brain was a person, it would be a hard-drinking, chain smoking, sarcastic, bitter woman with a drive to get what she wants, whatever it takes. And when cake-brain and PMS-brain get together, the result is scary.

It starts out wheedling and 'nice'...and very tricksy.

"You know, you have had a really hard day today. Kaylee needed you heaps, the kids were ratty. You deserve the simple pleasure of a piece of cake."

Of course it doesn't mention that once I have one piece of cake, cake-brain will take over and there may be no cake left for the children the next day.

Then it gets really nasty.

"You have no self control you know - here are fifteen ways you failed to be perfect today. Why don't you just go and eat cake - it's what you're good at. Then you can just resign yourself to being a big fat, fatty failure the rest of your life."

Hmmmm, nasty.

So PMS brain does the nasty and nice thing while cake brain provides a background beat of:

Cake cake cake cake CAKE cake cAKE cAkE CAke cake caaaaake Cake cake cake cake CAKE cake cAKE cAkE CAke cake caaaaake cake cake cake.......

and after a while I kind of start to melt down

Source: en.wikipedia.org via Jess on Pinterest

So at the end of the day - I did manage, with some prayer and a stupidly huge amount of self control (so much more than I think one ought to have to use in order to not eat a child's birthday cake), to not consume every crumb of cake and jelly bean in the house this week. The last piece of cake was given to one of the kids yesterday. I do not know what the scales will say tomorrow but with the whole cake-brain/PMS-brain thing and Kaylee's needs meaning that I spent most of the week in an arm chair holding her or attached to a breast pump, I am not expecting the result to be mind-blowing.

And the Olympic dream and World Peace may have to be put off a few weeks.

Please pray for Kaylee

2012-01-21T10:08:00.000+08:00

She is vomiting old blood again.

Her reflux is irritating her stomach and oesophagus to the point where it bleeds a little bit. She is on the maximum dose of the drugs she can take now, after her cardio op she can start taking a more powerful drug and/or have a surgery to attempt a fix. Today, however, she started vomiting at 4:30am and has been vomiting on and off until now. She is still blowing spit bubbles and is unhappy which tells me that she is still silent refluxing - but she has finally dozed off in her rocker - restless sleep though it is. Cardio surgery is still at least 2-4 weeks away. Please pray that she get some relief and also that she does not asparate - if she inhales some vomit and gets sick from that, it could mess with our cardio surgery plans and longer term plans to relieve her reflux

Money can't buy me love...or time

2012-01-18T16:53:00.000+08:00

Last year a friend was relating her "busy day" to me and it included three hours sewing while her children napped. I think I managed not to snort. For the past few years, I have said it is not a busy day unless it includes a tough choice between sleep and basic hygiene.

Some dear friends have asked us many times if we need any money at the moment and we may take them up on the offer one day in the future if we need to, but right now what I am running low on is time.

Unfortunately most of our friends and family:
work full time and have a million other commitments
are exceptionally busy with their own family and other commitments
live many hours drive away/on the mainland/on a different contenant
or
ALL of the above.

So time is a much harder thing to give than money.

The other week a dear friend came and helped Jon clear out a whole heap of his workshop so we could fit a new freezer and some kitchen cupboards we got second hand for a fantastic price in there. The time he invested in us is as greatly appreciated as the other types of support people have shown us.

I think back to the days when I THOUGHT I was busy and I realise what a precious commodity I used to regularly waste. I wish I had been more generous with my time back then.

I wish I had used it more wisely to serve my family and keep our home more comfortable and our tummies pleasingly filled.

I wish I had cooked meals or muffins and dropped them around to people who needed them - or even just to people who would be given a boost to have someone think of them.

I wish I had offered to take a basket of ironing for someone who was busy or under stress.

I wish I had offered to clean the bathroom or kitchen of a friend who was pressed for time or energy.

But I didn't do those things.

I didn't offer to do things for others because I was worried about offending them by implying they couldn't cope and I didn't realise what a true blessing it would be to have someone come in and non-judgementally give a hand.

And I thought I was SO busy.

I spent so much time worrying about the BEST way to do something in my home or with my kids, researching, checking blogs, collecting resources, that I ended up DOING very little.

Instead of just getting in and doing stuff I let it pile up until it was overwhelming and then rushed around being "busy".

And I missed the opportunity to be generous with my time.

If I could write to myself five years ago I would say:

Relax....and get up of your backside and do stuff.

Stop stressing about getting it right and just do it.

Source: Uploaded by user via Jess on Pinterest

There will never be a perfect schedule, routine, resource, moment to do all those things you are planning so just do them anyway and you will be amazed what happens.

Don't worry about being the best, just worry about doing better than you did yesterday.

Source: Uploaded by user via Jess on Pinterest

If you make a compassionate offer to help someone without judgement - it will rarely offend. And if it does, you can always apologise. It is rare that it will loose you a friend.

Quit filling your time with fancy things you think will impress others or trying to instigate big, fancy traditions you think will make memories for the kids.

It is better to do small things with your children than big things for them.

Source: gather.tumblr.com via Jess on Pinterest

The fancy cakes you stress over and fail to make every birthday are insignificant; the simple, round cake with lollies smushed into the icing by little fingers build far more memories and joy. They will be your tradition and you will not feel guilty about that.

Big birthday parties, dinner parties, fancy schmancy craft projects are great, when done in moderation and during the right season. If they stop you being available to your family and friends they are not worth it.

Source: sueswink.tumblr.com via Jess on Pinterest

Quit the computer for six months and you will be amazed how much time you find.

LIVE your life to the full.

Pick up your Bible, read it daily with your kids and to yourself.

Memorise chunks of it.

Learn that the fact that you like steam punk, tattoos and Dr. Who does not make you less Holy - but your stinkin' judgemental attitude and selfishness kind of does.

And you will find you have time to be kind.

To show love.

To help.

And that is priceless.

The slightly less fatty boombah post

2012-01-16T19:46:00.000+08:00

Last week I mentioned my fabulous new weight-loss and health strategy.

I turns out it kind of works.

Now it wasn't a great week for me keeping with the plan. There was one particular day where the only thing that I ate that wasn't from a vending machine, service station or fast food restaurant was one banana. I did not exercise once - Kaylee's reflux was REALLY bad for most of the week and seemed to sense when I was about to walk out the door or put the exercise DVD on. Yes, Jon can handle it but (a) I am a control freak and I'm OK with that and (b) he is wrangling five other kids so sitting tethered to a feed pump while trying to calm a cranky baby isn't really a fun prospect for him. Over all I managed 195 points out of a potential 245+ - which isn't wonderful.

HOWEVER, 40 of those points are because I lost 2kg - that's 4.4 pounds for you imperialists out there (by the way, I highly recommend this clip to you if you still work mainly in imperial measurements - just sayin')

I have gone from 100kg (220 pounds) to 98kg (215.6 pounds).

And I am calling it a start.

The points kept me motivated to keep doing SOMETHING, even on the days when most of the things I wanted/planned to do became impossible. Knowing that I was going to come on here and bare my flabby soul to the world motivated me to refrain from making 3 PB&J sandwiches as a before bed snack. Having a concrete and attainable goal gave me the strength to grit my teeth and say NO to the emotional, compulsive urges that would try and entice me to eat everything not nailed down every time I thought about broken baby hearts and Other Sad Things.

Over all I am drinking more, taking my supplements and eating a little more of that Sometimes Food that the Cookie Monster sings about.

I am now 40% of the way to my pre-Feb goal.

And I am feeling pretty good about that personally.

Mini-crashes happen.

2012-01-15T18:43:00.000+08:00

The road of parenting Kaylee, I have found, is fraught with emotional fender benders.

The other day Jon and I were talking parenting talk and I melted into tears because I missed out on two months of my children's lives. My youngest son was a different person when I came home.

And it will always hurt, just a little bit.

So I took a moment to grieve, exchanged insurance details with my psyche and asked it to use its indicator to give me a little more warning next time. And I moved on.

Kaylee started vomiting old blood last week. As gruesome as this sounds it was not totally unexpected and it just indicated that we needed to adjust some medications, which we did. However, it does indicate that Kaylee's reflux is getting worse. The old blood and the fact that I am spending approximately 1/3 of my time settling a tired, sore, Kaylee. If I hold her she relaxes which helps things calm down. If the reflux hits and I have to leave her she tenses against the pain and stresses, which makes it worse, which makes her stress and tense more which sends her into a spiral of pain, stress and ultimately, usually, vomiting stomach juices.

You don't hear much, she is so quiet you could be forgiven for not noticing, but I do hear it and I feel it in her when I pick her up. I have been watching her for four months so I tend to know by the crease in her brow and the way she is holding herself how bad it is.

And sometimes I get tired, weepy and fed up on her behalf, and my own behalf, and on behalf of my husband and other children who are also robbed of time and energy by the curse of Kaylee's pain.

I back up, forgetting to check my rearview mirror, and bump into grief. I check the panels and wonder if anyone will notice the damage, then move on.

As much as I try not to borrow worry from the future, there are moments. Moments when I imagine a scalpel slicing down the thin mauve zipper scar on Kaylee's chest and the terrible destruction those gentle, skilled hands will have to wreck in order to fix that tiny pump.

I remember seeing the machines helping my daughter breathe and having to suppress the urge to tear them off her. The IV lines dripping medicine into her veins and her splinted arms waving in the air as she struggled against it all. Listening to anaesthetists tell me all the ways a procedure can go wrong then signing the paper for them to do it anyway - because if I don't, she will die. And I know that we will have to do all that again in the near future.

And after her heart, comes her cleft.

And after her cleft, perhaps gastro surgery.

And more tubes, different tubes, the same tubes - who knows?

And whatever those tiny little monkey feet present as she grows - therapies, more surgery? Who knows.

And before I know it I forget to hit the brake and rear-end grief and anger and helplessness.

The cleft palate people from Hobart sent me information on how to introduce solids to my cleft palate baby. I had to suppress the urge to scream in frustration and tear it up. Solids are not even on my radar yet.

I have defect envy.

There are people whose children have 'just' a cleft palate, OR a heart problem, OR potential intellectual issues, OR feeding issues, OR digestive issues, OR potential developmental issues etc.

There are people child's heart condition is fixed with an overnight stay in hospital at age five, or one quick surgery with a ten day recovery and no infections or complications.

There are people who take their CdLS baby home from hospital drinking under their own steam.

Screeeech, CRASH, tinkle.......sorry officer, I didn't see the light.

And on days when I am tired, pressed for time, frustrated or sad, I feel every ding.

Kaylee is snuggled into my lap. Her soft pudgy thighs showing a faint sheen from the cold sweat raised by her latest encounter with the reflux monster. She is asleep and most people would think that she is peaceful but I know by the furrow of her brow and the way she holds herself, she is just too exhausted to fight against it any more and resting against my soft chest is the most comfortable she is going to get.

And I type because I can do that without disturbing her.

And I see the soft folds of her plump, perfect baby arms.

I see her crazy, wild, untameable locks pointing in every direction like a dark, silky sparkler.

I see her beautiful long lashes, her sweet pink lips, her tiny little monkey feet that look so weird - and so beautiful.

And I am thankful.

Thankful that I get to hold my little girl.

Thankful that after this surgery, which is a comparatively simple one for our brilliant surgeons, Kaylee's heart will beat every day without medicine or concern. And that silvery mauve zipper will be allowed to stay healed forever.

I am thankful that through that tube there runs my milk with no supply issues or concerns, helping her get strong and working to prevent a million different problems and issues that we COULD have but don't.

Thankful that my daughter is likely to live and grow, not wither and slowly die like so many beautiful children, loved children, who have "genetic issues".

I watch my tired husband cleaning up the dinner time mess from a meal which he cooked with our children sleeping in beds he tucked them into so that I can sit and hold our sleeping baby.

And I am thankful.

A wise man once said:

Source: weheartit.com via Jess on Pinterest

OK, perhaps a writer wrote those words and an actor pretending to be a wise Time Lord (who isn't actually a man but an alien who is shaped kind of like a man but has two hearts and is very, very smart) said those words but...........sorry, geek babble, moving on.

and it's true. The bad things are bad. Very bad. And the good things don't make the bad things go away. They don't even always soften the blows of the bad things. Sometimes the best the good things can do is provide a nice distraction from the bad things.

But the bad things don't steal the good things.

No amount of medications, procedures, heart break or frustration can steal from us the small, perfect moments that we share.

Some times my days look like this:

Source: kidsstuffworld.com via Jess on Pinterest

Some days they look like this:

Source: sarah-loo.tumblr.com via Jess on Pinterest

Other days they look like this:

Source: gotopublicschool.com via Jess on Pinterest

And on far too many days, I look like this:

Source: thinknice.com via Jess on Pinterest

But the bad, it doesn't kill the good. The good is good.

And day by day, I pray I will remember this:

Source: ariansstudio.blogspot.com via Jess on Pinterest

Enquiring minds and homeschooling

2012-01-14T18:37:00.000+08:00

We are busy here in the Guest household.

Like CRAZY busy.

We are starting to get a rhythm to our days . We will probably get it sorted just before we need to go to the mainland for Kaylee's surgery and then we will have to start all over again, but anyway.

Enquring minds want to know if/how we are going to homeschool still.

The short answer is: Yes, for now - the same way we always have.

The long answer you really don't want to hear unless you are having trouble sleeping. No, seriously once I get going I can be REALLY boring. I use phrases like "The cultural transferability of the Finnish, American and Asian educational principles..." and "The political bastardisation of the purpose of NAPLAN in response to cultural demand driven by unscrupulous popular 'journalism'..." and using acronyms like OECD and PISA and giving really LONG detailed definitions of words and phrases like "socialisation" and "academic success".

After a while it just kind of sounds like this "BLAH BLAH BLAH ...RANT... BLAH BLAH BLAH... ACRONYM... BLAH BLAH BLAH ...REALLY LONG WORD THAT I MAY OR MAY NOT HAVE MADE UP ....BLAH BLAH BLAH".

But the medium length answer is this:

We don't homeschool our kids out of a fear of what's "out there". We don't homeschool our kids because we believe homeschooling itself is perfect. I have met people who attended school AND people who were homeschooled who have passionate relationships with Christ, are successful in their chosen field and are genuinely nice people. I have also met people from both modes of schooling who do not have a relationship with Christ (in spite of a home which was, from all appearances, deeply Christian), do not experience success in their chosen field and/or are really not nice people to be around.

We homeschool our kids because we believe it's the best choice for us right now and the choice that God is leading us to make. It allows us a huge degree of flexibility - giving us the freedom to take all the kids with us to Melbourne without fear of interrupting their academic progress. It allows us to tailor the children's academic program around their individual needs which supports them in progressing at their own rate through the material rather than struggling to keep up or waiting for the rest of the class to catch up. It allows us to spend time together as a family nurturing, passing on values, explicitly teaching our faith and generally having a jolly good time.

But enquiring minds also want to know: how do we find the time in our crazy busy day?

I think most people vastly over estimate the amount of time needed to school a child. Yes, at SCHOOL school, kids spend 6 hours a day being taught.....or do they? Take away all the time children spend at lunch and recess, lining up, waiting for assembly to start, waiting for the teacher, walking to special lessons, attending special programs, on excursions etc. and it starts to look substantially less than 6 hours. In fact, at uni I was told that the majority of students average about two to three hours a day actual school work. And of that time, less than an hour is spent under direct instruction by the teacher.

Do you know how many hours a day I spend hooked up to a breast pump? About a bazzilion (well, at least 4-6). And guess what? I can listen to kids read, teach math, play phonics games and supervise bookwork while I am hooked up to the breast pump.

Do you know how long it takes for us to eat lunch and breakfast? About an hour. And I can read aloud, discuss and ask questions while we eat.

Do you know how much time Jon and I spend preparing meals and cleaning the kitchen? Neither do I but it's a lot. And we can do it while someone perches on a chair in the corner and reads to us, or while supervising someone at the table who is completing an assignment or even while teaching someone how to cook and clean.

Measurement and basic maths is a huge part of cooking and Erin can already double and treble recipes in her head - including doubling and trebling fractions. Billy, Christopher and Anna can all count out the number of onions, carrots or potatoes we need. Chores require sequencing, self organisation, fine and/or gross motor skills and have many other educational benefits. Many schools are now taking part in a program to grow a kitchen garden and teach the kids to cook....just like we already do except we don't really call it school, we just call it life.

And the majority of actual school work does not need myself or Jon to give our undivided attention.

I strongly believe that if a child cannot do the work without an adult prompting them they cannot do the work so our schooling program has always been organised so that the kids are largely self-sufficient. Only requiring occasional standing over with a big stick (it's a figure of speech.....the stick is actually quite small) to get the daily stuff done.

Socially, the kids are getting even more time with people outside our family now that Kaylee is a part of our lives. They also still make it to pretty much all the things we were participating in before Kaylee was born. There are also about a million articles and studies available online which explore the question of socialisation and the homeschooled child so I am going to let enquiring minds do their own googling and leave it at: "we have thought of it, are aware of it and aren't planning on making our children into socially inept individuals who can't hold a polite conversation or maintain meaningful relationships....thank you for your concern."

So for now, we are planning to continue homeschooling, it is actually the high point of our day.

This fits with my high tech plan of "do what works while it works and when it stops working, change it".

Hopefully, enquiring minds will now be satisfied ;)

The Fatty Boombah Post

2012-01-09T13:45:00.000+08:00

OK so it turns out that medicinal mochas have a teensy weensy side effect when combined with donuts and large amounts of inactivity.

I am hugemungous.

No, seriously, in some cultures they would worship me as a symbol of fertility.

I have been trying to work out what I could do about this and I kept hitting a wall. I'd start exercising, then things would get crazy for a while and I'd not find the time. I'd start eating better then I'd be stuck in an ER eating out of vending machines for seven hours or spend two hours on hold/getting cut off with Centrelink and need to self medicate with chocolate before my head exploded.

Now I could wait until things settle down....but I figured about two or three kids ago that things probably weren't going to settle down and Miss Kaylee Grace's special features just add to the mix.

What I need is a flexible plan to help me recreate good habits and loose some of the bad habits.

The hitch was I don't have time to actually formulate said plan.

So I was pinning on Pintrest while expressing and sitting on hold (again) and I came accross this:

Source: sixsistersstuff.blogspot.com via Jess on Pinterest

I checked it out and the link took me to a great little blog that had done the hard work form me called Six Sisters. They had a really good little weight-loss/fitness plan which I took and tweaked for my own use. You can check out my tweaked version HERE. The idea is I can keep track of those good habits I am trying to re-establish and if one or more slip for a few days, I can still keep focusing on what I CAN achieve - even if we are in hospital or things are crazy at home. My short term goal is to loose 5kg before Kaylee's cardio surgery. My long term goal is to loose 10 - 15 kg and run a 10km race.

I will be keeping myself accountable by blogging.

So you get the lovely priveledge of reading all about it.

Aren't you glad?

update

2012-01-07T18:37:00.000+08:00

Happy New Year!

It has been a crazy busy week in which I went exactly NOWHERE.

That is nowhere as in not to the hospital, not to the doctor, not even getting in the car once.

BOOYAH!!!

Very, very happy here.

Kaylee's reflux has not loved the hot weather and we have spent a bit of time cuddling, rocking and cleaning up vomit. Lot of vomit. Lots and lots of vomit actually.

It is heart breaking to see her retching and choking but in between all that she is happy, content and even occasionally giggling! Or making a funny honking noise that I am pretty sure is her version of giggling. She got a new rocker a few days ago which makes her sit up more and that helps the reflux a bit.

Unfortunately there is no way to stop Kaylee's reflux right now. She is on some medication to reduce the acidity to make it less painful and reduce the harm to her body. Reflux is likely to be our longer term adversary. I don't often think much past February and the big heart op (which scares the pants off me but not the surgeons thankfully) but really once we get past the heart op that is when we start changing Kaylee's feeding regime and trying some new things to help her reflux. Unlike her heart problems, which have a definate fix and not much of a long term day to day effect on her life, reflux may have a pretty huge say in how we live our lives from here on in. The fictional conversation in my head goes sort of like this:

Me: Soooo, lots of people with CDLS have major life long issues with reflux, is that right?

The Other Me: Yep, according to my research.

Me: So Kaylee will have major life long issues with reflux?

The Other Me: I don't know.

Me: OK, well, let's say she does. There are things we can do about it right?

The Other Me: A few things.

Me: Like surgery, medications, diet?

The Other Me: Yes

Me: And that will fix it right?

The Other Me: I don't know.

Me: So worst case scenario, how bad can it get?

The Other Me: Really? You really want to put the words "worst case scenario" and "Kaylee" in the same sentence? Have you learned nothing? That never ends well. And anyway, there is no way to know right now.

Me: Right. So you know we MAY be battling this demon for the rest of our lives but you don't know that we will be for sure. You know there are some things that help others in this situation that we may be able to try if we need to but you don't know that any of them will work well for Kaylee. You know that it may not be a problem or it may be really, catastrophically bad or it may be somewhere in between but you have no idea which it will be.

The Other Me: That's right.

Me: You don't know much do you.

The Other Me: I know I love my daughter. I know that together with God and our amazing little family we will fight whatever dragons lie before us. I know she has long lashes, fat rolls and a smile I'd walk over hot coals for. And I know I love my daughter

Me: You said you love your daughter twice.

The Other Me: Yes, I know. That's how much it matters.

Me: Right, well. I guess that you know something then.

The Other Me: I know what matters.

Disclaimer: I don't actually talk to myself ....Oh....Wait....Hang on....Yes I do.....Carry on.

The other kids are all fantastic.

Erin is completing a project on germs and microbiology (school holidays this year will be February and whenever Kaylee's cleft gets fixed - love the flexibility of homeschooling) and is doing a great job. She has really blossomed in the past year and has a confidence about her that is wonderful to see.

Billy is doing great with his reader and is now halfway through the grade 1 readers we have. He is streaking up and seems to grow before my eyes.

Christopher is doing great too and is still Kaylee's biggest fan.

Anna is all of a sudden tall and beautiful and almost three. I can't believe her birthday is in ten days. What happened to my baby girl?

Andrew is joining the ranks of the walking. He is now total BOY and goes at approximately 100 miles an hour whenever awake.

I have a new sewing machine that I am planning on trying out tonight. I bought it to fill in all that spare time I have - HA! I made a funny!

update

2011-12-31T13:33:00.002+08:00

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.
.
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

2011-12-24T14:04:00.000+08:00

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

2011-12-22T11:26:00.003+08:00

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....

2011-12-21T16:44:00.000+08:00

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

2011-12-20T13:50:00.002+08:00

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

2011-12-18T20:35:00.002+08:00

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....

2011-12-15T07:20:00.003+08:00

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

2011-12-14T15:16:00.000+08:00

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

2011-12-10T11:32:00.001+08:00

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

2011-12-07T20:46:00.000+08:00

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

2011-12-03T19:53:00.001+08:00

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

2011-11-28T09:37:00.001+08:00

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

2011-11-26T13:35:00.001+08:00

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

2011-11-23T13:01:00.000+08:00

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.

2011-11-19T09:11:00.001+08:00

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

2011-11-14T19:49:00.001+08:00

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

We're home

2011-11-12T14:58:00.001+08:00

Coming home was like waking up from a bad dream. We are already carving out a new normal with feed pumps, breast pumps, medications etc. playing a major part. Today we had pancakes for breakfast and I am still in my PJ's at close to tea time - taking a day out for rest on the Sabbath. Yesterday we had a picnic in the backyard complete with Kaylee in her rocker with her feed hanging from her IV pole. We only have two chapters of The Chronicles of Narnia left to go and then we get to close the books and savour the memories as we move on to another world to visit.
There are adjustments - the kids are learning not to touch Kaylee's pump and tube or my breast pump. Jon and I both go full pelt every day from the first moment of waking to when we fall into bed at the end of the day (Sabbath is a very big hit here at the moment!). There are also a thousand different false alarms and starting at rabbits in the bushes. Last night I was administering Kaylee's meds and felt a bit of resistance. Inside I heaved a big sigh and pictured Kaylee's tube being blocked up with her 6pm med because I didn't flush it well enough. It's a tight rope act to flush enough to get it all out of the tube, but not so much that Kaylee ends up with too much going in to her small intestine at once and making her tummy sore and diluting the capsule contents can be tricky so I thought, perhaps, I had got it wrong. The idea of having to go into hospital that night to have a new one inserted (a rather uncomfortable procedure that can take an hour or more) did NOT appeal. I checked everything and tried again - it turned out the syringe had just stuck a little. Little events like this can get a little tiring!

Her little snore sounds like a cat snoring and it is quite comforting to hear. We are going to get some foam wedges for her to have tummy time and nappy changes on. We discovered that nappy changes on a flat surface makes a small ocean of yellow stomach fluids rush out Kaylee's mouth and nose. Not attractive. We don't need a mobile, there are always a couple of faces hovering over her. She is totally doted on by everyone - other than Andrew who ignores her or tries to steal her dummy.

Jon has done a fabulous job with the other kids and home. Andrew and I are getting re-acquainted. I left a 14 month old with about four teeth, only just pulling himself up on furniture with 0 vocabulary. I have come back to a 16 month old with a mouth full of teeth (he's been teething non-stop since I left) who has taken his first steps already and can say a few words. I need to check with Jon to see what he likes and doesn't like now. Anna is fragile and very cuddly and plays peek-a-boo with Kaylee. Christopher stays as close as he can and often asks "Can I touch Kaylee?" like he thinks she may float away. Billy constantly wants to know if he can help (he laid out Christopher's clothes for him yesterday unasked) and really wants to get in on the practical side of things. Erin has lost a tooth and grown two more since I left. She adores Kaylee and would administer meds if I let her!

While Kaylee's needs have provided a different beat to our life right now (and most likely forever) we still add our melody. Pancakes, picnics, story time and worship are still woven into our homelife. The meandering conversations between Jon and I that have been the staple of the last 11 years still provide veins of gold to our days. Cuddles, kisses, stories, discipline, changing nappies and wiping noses all pepper our days with their own unique colours.

And I love being HOME.

Blogging will likely be a once a week-ish affair now I am home. Life is taking all my time right now

I have more to say than ever but I need to be with my family right now.

The biggest thing left unsaid to all of you out there is THANK YOU.

But I have six kids waiting to be tucked into bed so that will have to wait for later.

But rest assured, I will get back to it.

Somewhere amid living this amazing, crazy life I have been blessed with.

No Place Like Home

2011-11-09T07:53:00.000+08:00

We are going home today.

Touchdown!

2011-11-08T07:32:00.003+08:00

We left the Children's hospital at 10:30 yesterday. In order to get a taxi with a rear facing infant carseat we had to hire a chauffeur which meant I had the door opened for me, got called "Ma'm" and sat on leather seats....at got to pay $101 - ouch! Our plane got delayed (of course, JetStar) and we got to hang out at the airport being all ordinary and stuff. Well, as ordinary as you can be when you are syringing milk into your baby at a rate of 1/2ml every two minutes for an hour. Kaylee's ears hurt a few times on the plane but other than that she was a gem and seemed to like being in her sling.

About ten times over the course of the day I had this conversation:

*gasp* "Oh my goodness she is so beautiful! And little!"
*smile* "Yes, she is"
"How old is she?"
"Two months."
"Ahh, she was very prem then."
"No, actually, she was born at 41 weeks"
*confused look*
"She has a rare genetic condition called Cornelia De Lange and as a part of that she has a heart condition. We are on our way home from our first heart op."
"Oh poor little thing!"

It is not a bad conversation to have (and one I have had any time I take Kaylee for a walk, even on the wards) and the general consensus is that Kaylee is beautiful. There are moments I would much prefer just to blend into the background and maintain anonymity but by about the fourth child I realised that blending in was no longer an option! I just have to work hard to make sure I am a good ambassador for large families, Cornelia De Lange, heart kids, cleft palate and all the other exclusive cubs we are a part of. My daily prayer is that through this I can still be a good ambassador for Christ and I find myself having to draw on His strength more and more the closer I get to home. My impatience to get home is bleeding in to a general impatience and I have to work hard to walk that line between advocating for Kaylee and myself and being a shocking bossy boots!

We didn't tell the kids that Kaylee and I were coming so it would be a surprise and so they wouldn't be disappointed if it didn't happen. And also so Jon didn't get five young children electric with anticipation to deal with - Jon and I were bad enough.

Seeing them was like a drink of cold water.

Now there are only a few things for us to sort out before I can go home and I am sure the nurses here will be very happy to get rid of me. I have spent all my time on acute care wards where medication times are kept to strictly, nurses study up handover notes as soon as they are handed over, breast milk is treated like liquid gold and everything is double checked. Here on 4K the nurses are completely overworked from what I can gather so they often have me standing at the nurses station quietly harassing them for the things Kaylee needs! It is very hard to walk that line consistently.

Home sounds good.

Blogging will be less frequent when I get home as life will be for living rather than writing about. I am hoping we will be home for a couple of months. We will be going back to Melbourne for a check up mid-December and having weekly checks with our doctor here in the mean time. We will also have all the early intervention stuff happening.

A new chapter of our adventure.

Kaylee's Whirlwind tour

2011-11-07T03:40:00.004+08:00

Launceston 4N 8-9-11 to 11-9-11
Melbourne PICU 11-9-11 to 13-9-11
Melbourne 7 West 13-9-11 to 22-9-11
Hobart NICU 22-9-11 to 30-9-11
Launceston 4N 30-9-11 to 8-10-11
Melbourne 7 West 8-10-11 to 12-10-11
Melbourne PICU 12-10-11 to 21-10-11
Melbourne 7 West 21-10-11 to 7-11-11
Launceston 4N 7-11-11 to Yet to be determined
Home, Mole Creek Yet to be determined

2 states, 3 hospitals, 4 wards, 4 planes, 1 ambulance, 1 major bypass surgery, 3 general anaesthetics, 3 central lines, countless specialists, nurses and doctors.

I'm thinking of having a tour shirt made!

Inspiration

2011-11-06T11:47:00.004+08:00

When I was teaching there were some words that I would ban kids from using in their stories. "Nice" was one of them. As in "We went for a nice walk to the park and had a nice picnic. It was nice.". "Pretty" was another "I had a pretty dress on and saw a pretty pony, it was pretty fun." Another one that would really get me riled is "awesome". "I played my awesome nintendo, Spiro is an awesome game. Then I made an awesome sandwich, it was awesome." I would teach the kids that by overusing a word, they would decrease its value. If their nintendo, game and sandwich are all awesome, what word are they going to use when they want to describe looking out from the summit of Mount Everest or walking through an ancient cathedral while a skilled choir sings 'How Great Thou Art'? How are they going to communicate “filled me with awe” when “awesome” has been used up on every second weekend? To paraphrase immortal words of Horton the Elephant - say what you mean and mean what you say.

Source: travel.nationalgeographic.com via Cara on Pinterest

Awesome

Source: weheartit.com via Lina on Pinterest

Delicious

There's a difference.

If I had my way, there are some words and phrases that would be locked away from overuse until they regained their meaning. Politicians should be banned from using the phrase "working families" and the word "unAustralian" (although there is legitimate debate over whether UnAustralian IS actually a word). They have been overused to the point of meaninglessness. I can't watch the news at election time without going into a long rant about word usage.

Another word that I think should be locked away for it's own good is "inspiration".

Type ‘define inspiration’ into Google and you get:

in•spi•ra•tion/ˌinspəˈrāSHən/

Noun: 1. The process of being mentally stimulated to do or feel something, esp. to do something creative: "flashes of inspiration".
2. The quality of having been so stimulated, esp. when evident in something: "a moment of inspiration in an otherwise dull display".

Winston Churchill inspires me. He said “When you’re going through Hell, keep going.” At the height of the Blitz when it looked like Britain would lose the war and thousands of young men were dying because of choices a few were making he made his famous “We will fight them on the beaches” speech. Which was the British aristocratic equivalent of standing in the English channel and saying to Hitler ‘Bring it’. When he escaped from a POW camp as a young man as the train he was stowed away on crossed into safe territory he threw back the covers and yelled “I’m Winston Bloody Churchill and I’m FREE”. In all his alcoholic, cigar smoking, pill popping, mentally unstable and long dead glory, Winston Churchill inspires me (mentally stimulates me) to keep going and survive even when odds are stacked against me.

Yet when many people use this word what they are trying to communicate is: ‘it gave me a warm, squishy feeling inside and made me think about doing something. Perhaps. One day. If I have enough coffee and the wind blows right and it doesn’t conflict with any appointments’.

Stories of celebrities loosing 10kg and kittens being rescued from small spaces are pinned as inspirational by newsreaders and interviewers. There are entire sections of book shops devoted to ‘Inspirational’ literature that seem to be filled with funny pictures with cliché captions. People sit around after church glibly describing the morning service as ‘inspirational’ but nothing in their internal or external world changes. People read or witness extraordinary things and they expound on the inspirational qualities of them…then they go on just as before. And the value of the word decreases.

Surely if you are inspired you should have something change at least in your internal world if not your external.

Being the inspiration for someone else rarely changes one’s life very much. Shakespeare had been dead for hundreds of years before I was born and is not touched at all by how his words inspire me. Inspiration is intrinsic to the individual. People have been inspired by rocks, trees, canyons, rivers, and natural disasters. John Newton, author of ‘Amazing Grace’, was inspired to convert to Christianity by a storm that nearly sunk his ship. The storm was left unchanged by their encounter but John Newton was not. In order for a person to inspire another person they do not have to be perfect or even particularly good. Winston, as I mentioned before, was by many accounts an alcoholic, cigar smoking, pill popping, mentally unstable individual who would have been a right royal pain to live with; but he inspires me. What is a catalyst for inspiration for one person may be inconsequential for another. The dandelion in the footpath may be a strong metaphor for life and resilience to one person and an impetus to go and buy some weed killer to another.

I cringe a little when people tell me I am ‘inspirational’. Being their inspiration changes me little if at all but I wonder if it truly changes them. If hearing about what we have gone through inspires someone to get to know Christ that little bit better or change the way they deal with their kids and spouse for the better, that’s great. It doesn’t really change me any but good for them. If they mean inspirational like the poster of a kitten hanging on the wall with the caption ‘Hang In There’ that everyone ignores or looks at and then forgets it’s… insulting.

There have been portions of the last two months that have been like a waking nightmare. There have been portions of the last two months that have felt like my heart was ripped out. There have been portions of the last two months that have nearly broken me. The whole of this time I have been walking with my Shepherd through the Valley of Death – aka, Hell. There have been days where I have had to just take Winston’s advice and keep walking.

Source: 1000notes.com via Jess on Pinterest

So before you tell me I am inspirational, take a good hard look at yourself and ask “How have I changed?” If you have truly changed and for the better then don’t bother telling me about it, talk to the Holy Spirit – author of inspiration. If you haven’t changed and your daily life and thoughts are the same as they were before, please don’t reduce what I have gone through to a kitten poster or two minute youtube clip that gives you a warm and fuzzy feeling.

Again, to paraphrase the immortal words of Horton the Elephant, say what you mean and mean what you say.

Source: bellarinascrafthouse.blogspot.com via Shirley on Pinterest

Or else I’ll give you a detention.

All my bags are packed, I'm ready to go.....

2011-11-04T16:52:00.003+08:00

MONDAY
PLANE TICKET
LAUNCESTON

Never have I typed more beautiful words.

Source: ohmishka.com via Eolyblue on Pinterest

It feels a bit like I gave birth then had a two month labour.

We will be at the Launceston General Hospital for a little while (days rather than weeks I hope) to make contact with our various people (pediatrician, dietician, speech therapist, occupational therapist and all the other "icians" and "ists") and to show off how well we can work a feed pump (we rock the feed pump) and manage meds. Then HOME. I will set sleep in my house for the first time in two months. Under the same roof as my husband and children. In the same room as my baby daughter.

Kaylee's surgery was a finger in the dike measure to buy us time for her to grow bigger and stronger before a full repair. The shadow of future surgery is on our horizon and we need to be ever vigilant in monitoring her condition. It is a spiritual discipline to not borrow worry from tomorrow whilst still planning for future possibilities.

But right now we are winding down this chapter in Kaylee's story.

And starting a whole new one.

Source: google.com via Nicole on Pinterest

A Complex Diagnosis

2011-11-03T12:49:00.007+08:00

Source: thecolorsofmymind.tumblr.com via Hillary on Pinterest

Trying to diagnose someone is like trying to describe purple.

Think of purple. Now think of everything you aren't thinking about that can still be classified as purple. Different shades on a paint chart. Mulberries on a summer day. Velvet. Sunsets and sun rises. Amethyst, mauve, violet, grape. All these things are purple and purple is all of these things but none of them describe the entirety of purple.

Think of Kaylee. Now think of everything about Kaylee that you weren't thinking of. She is a cardio baby, a reflux baby, a special needs baby, a quiet baby, a small baby, a CDL baby, a baby with long eye lashes and beautiful curly hair, a baby who likes being wrapped and sung to, a baby who loves music, a cleft baby, a daughter, a little sister, a grandaughter, a niece, an NJ tube baby, an early intervention needs baby, a cute baby, a baby with hair clips, a girl baby, an ESBL baby, a size 00000 baby, a baby who is gaining weight, a baby who
is loved.

And all of these descriptors only scratch the surface.

It is my Job as Mum to get to know all of these facets of Kaylee and to remind my various medical staff that there is more than one shade of Kaylee - there is a whole spectrum.

It is hard to separate Kaylee from what is essentially her and what is a defect.

Hole in the heart - defect. Don't want it, don't like it, isn't fun, would like it fixed.

But another marker of Cornelia De Lange Syndrome is her beautiful long eye lashes and her thick curly hair.

If I could snap my fingers and remove all Kaylee's problems, how much of her would I remove also?

I read my children a picture book about Ted The Better-Than-New-Bear about a teddy bear who had gotten raggy and old. He was repaired, cleaned and given new overalls and his owner declared him BETTER than a new bear because he was all fixed, but he was still HIM.

One day Kaylee will be all fixed. Not by any particular surgeries - none of them will solve ALL her problems. Not by any particular therapy, drug or intervention. One day she will be healed by God. I have full and complete faith in this. Perhaps it will be tomorrow, perhaps it will be when Jesus returns. Like the parable of the wheat and the tares, everything good in my daughter will be preserved and everything that causes her pain will be cast away. She will be made better-than-new.

And every shade of Kaylee will shine.

Source: weheartit.com via Christine on Pinterest

In the meantime, tonight her central line will be removed. Her NJ tube placement went well. Strong words about planes and Monday are being flung about willy-nilly. A walk outside may even happen tomorrow. Home is on the horizon.

Counting down

2011-11-02T11:29:00.002+08:00

One more sleep and Kaylee's IV antibiotics are finished.

One more sleep until Kaylee's NJ tube goes in and her feeding starts to get sorted.

One more sleep until I can take her outside for a walk for the first time ever.

Two more sleeps and we reach the day - Friday - that has been mentioned in the same sentence as the words "aeroplane" and "Launceston".

I have told Erin that I am hoping to be home in November.

It is November.

Hopefully sometime soon I can take Kaylee home.

And then I am going to have a really big.....sleep.

Route Recalculation

2011-11-01T08:44:00.002+08:00

When we stray from the planned path or take a different turn the GPS in our car announces "Route recalculation!" and it plans a slightly different route which takes into account our detour.

I feel like my internal GPS has been saying "Route recalculation" pretty much non-stop since the start of September.

I am a goal oriented person. I can have slight tunnel vision when it comes to achieving what I see as success and being in control of myself and the things and (to an extent) people under my care is very important to me. When I feel like I am not in control is when things can get a little messy.

When Kaylee went to three hourly bolus feeds I was thrilled. I was back on familiar ground seeing as all my other babies were fed three hourly through the day as newborns and I was finding a rhythm that I could dance to. I was picturing wandering around the house or walking down the street doing our daily life with Kaylee tucked in the sling or ergo. I was planning getting back to a normal life. And then she started having bradys (patches of slow heartbeat) which were obviously due to silent reflux. So Thursday morning she will have an IJ tube placed which will go through her nose into her small intestine rather than into her stomach. This will mean that rather than the three hourly feeds I was celebrating we will be on continuous feeds and when we wander around with Kaylee in the sling, I will have a feed pump in a back pack on my back. Instead of those moments of organic normalcy, she will still be hooked up to a machine. For months, possibly years, maybe even (worst case scenario) the rest of her life.

And I hit a wall.

And I continued to smack myself and anything else I could reach against that wall for about four days.

I agree that the IJ tube is necessary not only for her heart but for her digestive system. Many kids with CDL end up throwing up blood by their first birthday due to severe reflux and Kaylee needs all the calories she can get to help her to grow before her next two surgeries. I have been advocating managing her reflux pro-actively for weeks and openly harassing medical staff to make sure it was taken into account in long term planing as well as daily observations.

However coming to terms with the reality of continuous feeds requires a route recalculation.

The final destination or goal that I am reaching for as a mother is facilitating my children to grow to be as happy, healthy, strong (physically and emotionally) and wise as they possibly can and that they know and love God in a personal way. I also want them to be able to fulfil their full potential in whatever role they choose to pursue and that God has ordained for them in this world. This goal is equally as valid for Kaylee as it is for any of my other children. The route, however, has very different scenery than I am used to.

To a degree I need to mourn the loss of the scenery I expected to see with Kaylee. When all of this started I remembered a piece that was read to me years ago called Welcome To Holland. It describes the experience of having a child with special needs as being like planning a trip to Italy and getting off the plane in Holland. I would encourage you to go and read the whole thing for yourself but it finishes up saying:

And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I cry for three hourly feeds. I weep for breastfeeding my baby directly. I mourn for taking off in the car taking only nappies, wipes and a chest full of milk. I am frustrated that Kaylee, and by association my other children and husband, will hurt because of the bad things associated with Kaylee's conditions, and some of them (like heart surgeries, separation and trips to PICU) are very bad indeed.

But there is a reason why Kaylee is called my Tulip.

And there is only so long you can throw yourself against a wall before you have to recalculate your route and keep moving toward your destination.

It is just a matter of watching the windmills out the window as you go.

Soundtrack to our journey

2011-10-31T21:13:00.002+08:00

This song has carried Jon and I through the last couple of months.

http://

The whole album (which is AMAZING) can be downloaded here for free. I highly recommend it.

Tutorial: Baby Origami

2011-10-30T08:26:00.023+08:00

Things are...let's not use the 'Q' word...LESS NOISY here at the moment so I thought I would take a moment to introduce you to my new favourite pastime - baby origami!

No, that is not folding babies. It is folding things around babies. Silly.

This is a wrapping style that I learned during our first PICU stay. The reason it is so fantastic is it can wrap a baby for comfort and security but still allow easy access (and if necessary a visual line) to their chest.

DISCLAIMER - this wrap is not suitable for every special needs baby in every situation. Use common sense and a nurse - your nurse generally has more of a clue than some chick on the internet. But as a parent in a hospital situation I know how valuable it can be to take an active part in the day to day care of your baby and I have WOWED a few nurses with this wrap...on that note....

We will start with our subject - the beautiful Kaylee

Just for a little bit of perspective, see those green straps next to her shoulders? They go around most babies' waists. I will be using a flannel the same dimensions as a cloth nappy (OK, it IS a cloth nappy) for this demonstration but if your baby isn't fun size you may have to get something a little bigger.

Place the baby slightly to one side of the middle of the wrap. If you are planning to lay the baby on their side, make the short side the same side you will be laying them on. Make sure all leads and tubes are going downward toward bub's feet without any kinks or nasty tangles. Alternatively, you could have the leads and wires etc going upward over your baby's shoulder, it all depends on what and where they are placed. If in doubt, ask a nurse.

Take the corner of the short side and fold it down over the baby's arm like SO.

Then take the straight edge of the short side and fold it across the baby. You may have to hold that first fold down while you do this, it depends if your baby is flailing around yelling blue murder or peacefully sleeping. Be careful to leave the chest exposed.

Tuck the edge you just folded across your baby firmly under your baby's side like SO.

Now take the corner of your long side and fold it down over your baby's other arm like SO.

Then fold the long side across your baby and tuck it firmly under their side like SO.

Again being careful to leave the chest exposed.

Now the baby's arms will be held firmly next to their body which helps calm some babies and prevents their Moro reflex from waking them once they're asleep.

The lower part of the wrap will be like a long tube. Gently flair the bottom of the tube so it looks a little like a mermaid's tail. Singing "Under The Sea" from The Little Mermaid at this point is entirely optional but highly recommended.

Now fold the mermaid's tail up toward the baby's head. If the tail completely covers the chest area you may choose to fold it back on itself to expose the chest. Be careful of leads and tubes (yes, because that is something I need to remind you of I am sure.)

Tuck the corners of the mermaid's tail in and you now have a well wrapped baby.

The best thing about this method is nurses can check respirations, chest wound sites, monitor dot placement etc without unwrapping the baby. Also, it can be used when the baby is under a warmer because the chest and temperature probe can be left exposed.

Now go and amaze your friends at dinner parties! Well, it will work if they are paediatric nurses...

And hence we draw to the conclusion of possibly the wordiest tutorial on how to wrap a baby ever written complete with dodgy, poorly lit pictures (hey, I do words, not pictures!). You're welcome!

20 signs I've been here too long!

2011-10-29T06:46:00.006+08:00

You know your child has been in hospital too long when...

1)....you can tell ten things about a new nurse instantly from the colour of his/her scrubs and style of his/her shoes.

2)....your hands don't feel 'clean' until there is hand sanitiser involved.

3)....you have stopped licking your fingers when cooking/eating because hand sanitiser tastes gross.

4)....you know that a good nurse will stop a mediocre doctor from killing a patient but if a mediocre nurse came on shift you'd be afraid to go and pee for 8 hours.

5)....you know which alarms to worry about and which ones you can switch off and tell the nurse about later and which ones you switch off and ignore.

6)....you know what each "code" means when it is called over the PA system.

7)....the nurses tell the patients of new admissions to ask you if they can't find a nurse and they want to know something.

8)....your family and friends need a dictionary of medical terms to understand you.

9)....you firmly believe your morning mocha should qualify for a medicare rebate

10)....you wonder if the seemingly permanent twitch in one one of the bags under your eyes will burn off the calories from your medicinal mocha.

11)....you know which floor of the hospital contains which speciality off by heart.

12)....you can find your way around the hospital. At all.

13)....you threaten to beat anyone who uses the "Q" word (quiet).

14)....you know which hospital 'rules' you need to obey, which ones you can bend and which ones you can totally ignore.

15)....you have at least three good friends who have children with life threatening conditions.

16)....four or more of your child's doctors know you well enough to tell you that you look awful.

17)....you not only know the names of most of your nurses, you also know their hobbies, favourite books and movies and children's names.

18)....you have ever helped the cleaner as a form of stress relief.

19)....the nurse comes in to see that you have taken full obs and written notes.

20)....you consider 3 tubes and 5 wires attached to your child to be completely manageable, in fact, almost normal!

Here's to going home soon.

And here's a bonus 5

21)....you know which days to avoid the cafeteria

22)....you know what times to avoid trying to get a coffee (the cue between 8-9 weekdays is INSANELY long)

23)....you are on a first name basis with staff from at least five different departments

24)....you consider it a good thing if appointments etc. are running late because you know it means your child isn't the most urgent case.

25)....you have unintentionally memorised the roster of the cleaners, ward clerks and kitchen personnel.

A general update

2011-10-28T17:28:00.003+08:00

Kaylee has been having little spells of her heart slowing down. It isn't terribly dangerous at the moment, it is just something to watch and look into so we've been doing that for a few days now. It seems to be related to her reflux so next week her NG tube is being switched for an NJ tube. That means that instead of going into her stomach her food tube will be placed so it goes into her small intestine. It doesn't require any surgery or anything, just a radiographer so it can be checked properly. On a day-to-day basis it will mean that Kaylee will be on continuous feeds with a "kangaroo pump". It will be interesting having to keep her plugged in once we are home! But it is manageable and it is not an uncommon thing to have to work around.

We are heading into a long weekend and the ward is always delightfully quiet over the weekend. Kaylee and I will be moving into an isolation room tomorrow so rather than having a four bed room to ourselves we will get a one bed room to ourselves. The biggest thing this will mean for us is it guarantees our privacy and guards our quiet which will be lovely.

Kaylee's IV antibiotics finish on the 3rd of November and it will be fantastic to get rid of the central line. It is in an awkward place and I am constantly paranoid about it getting messed up when she fills her nappy or bumped when I change her or pick her up.

Yesterday I ended up leaving the hospital at 1am by the time I had finished everything I wanted to do here and expressed so I am pretty tired today. I ended up going back to Ronald McDonald House to do some laundry and having a nap for an hour or so this afternoon. I am tired and somewhat cranky and completely ready to go home! Soon...

M & D University

2011-10-27T19:11:00.005+08:00

I bet you didn't know I am studying full time at the moment.

I am attending M & D University - that's Moses and David University.

Both these leaders got a rigorous training before taking on their famous roles.

Both of them spent time as shepherds, in royal court (David as court musician, Moses as an adopted son of Pharoh's daughter), David was a guerilla warrior and mercenary while being pursued by Saul, Moses was the son in law of a tribal leader and priest who possessed great wisdom and insight. These experiences prepared them to take on arguably the two most influential positions of the old testament. The skills they learned during those years - about 40 for David and 80 for Moses - served them well as they led Israel and shaped history. One day I am going to write a book examining the skills Moses and David would have learned during these periods and how those skill would have served them in their more well known roles - but for now I will leave it up to your imaginations and go on with talking about me - because this is all about me, check the name of the blog.

One day my role as mother will be less intense in terms of the time and physical effort it needs. I had thought that perhaps when my kids are grown and independent I may take on another job of some type. I change my mind about what kind of job about as often as a five year old does. My top ten at the moment are: lactation consultant, foster parent(perhaps specialising in caring for kids with special needs), play therapist, hospital teacher, special needs teacher, social worker, poly-culture farmer, occupational therapist, child psychologist and writer/poet. Curiously, other than hospital teacher, all of these were jobs I was thinking about before Kaylee arrived.

Almost every day I am learning skills and collecting knowledge that would help me in any and all of these occupations. From the basic skills such as time management, creating working relationships with diverse people and assertiveness to the more specific skills and knowledge set of lactation, hospital life and dealing with special needs children - I am learning more every day than I ever did in a whole semester at university. I don't know for certain what job God has in store for me, I am just trying to pay attention to the lessons being brought to me and pass each course I take.

I think sometimes if we pay attention to the lessons of being a shepherd or a home maker or whatever is going on in our lives RIGHT NOW rather than worrying about getting a piece of paper or promotion, we will find ourselves prepared for much greater thing. Things that have an eternal impact.

That's what I think anyway.

A (part of a) day in the life...

2011-10-27T10:31:00.006+08:00

6:30 - alarm goes off and I drag myself out of bed and prepare for the day.

7am - I check in with the night nurse about how the night went, meet the next shift nurse and express the ocean of milk trying to explode out of my chest

8am - Feed, change, massage and tidy up Kaylee, chat with our nurse and plan my day

9am - hang about to talk to the ward doctor, case manager nurse and any other random people I need to talk to. Listen in on rounds

10am - have breakfast and express a little more then deliver my milk downstairs (it gets delivered back to ward thickened and measured) and find that I forgot to put a sticker on one of the bottles. Take it back up to the ward with me an put it in the fridge until later. Meet up with some other heart Mums in the parent room over the once a week Heart Kids morning tea.

11am - Try Kaylee at the breast with the help of the lactation consultant. She does very well and manages to get 5ml on her own. I set the rest of her feed going through her tube.

12 n - Change the dressing on Kaylee's central line. Sticker the bottle of milk I forgot earlier and deliver it. Pick up my lunch from the basement kitchen. Settle in for some lunch with Kaylee.

1pm - eat lunch while I write e-mails to the kids next to Kaylee's bed.

2pm - Set Kaylee's feeds going and check her over. Talk to our Case Nurse and the ward doctor (our doctor one the pool on what colour the Queen would wear to open the new hospital building! Pink is our favourite colour in Cardio - we encourage the children to stay pink.). Sit and blog for a little bit before going to express again.

Plans for the rest of the day include: Expressing, meeting up with a friend who is dropping off some food for me, putting Kaylee to the breast again, walking to the post office to get some post packs to send my warm tops home (the weather has changed and I want to save luggage space), having tea, changing and feeding Kaylee and more expressing. I usually leave the hospital about 10pm and start it all again tomorrow.

I may have a little nap in the chair at some point today.

Long days, but the view makes it all worthwhile.

2011-10-25T19:12:00.002+08:00

I was standing at the lift this morning and my ward doctor told me I looked exhausted. This confirmed to me that I did, indeed, need a mocha! On the way to get one I passed the stalls that are in the foyer fundraising five days a week for the hospital and I saw it. The same stall that I bought clips from that day a few weeks ago when I found out I was going home to Tasmania. I lost the clips in Hobart a day or two later which had upset me somewhat so I was THRILLED to find them again. Small things. Here they all are clipped on to the card the ward clerk in Launceston made for me. Hopefully we will be going home soon.

Kaylee tried drinking from a bottle for the first time ever. She did beautifully for her first go, considering she had a general anaesthetic yesterday and open heart surgery a week and a half ago! Today was a day when she did everything she was meant to and nothing she shouldn't.

Our room mate left for South Australia today so we have our room to ourselves and I am sleeping here tonight, next to my girl. I am getting her feeds ready and doing all the "Mum" things - and loving every minute!

Perfect ten

2011-10-24T10:54:00.005+08:00

Central line? I poke me tongue out at your central line.

The risks involved in any procedure give me the willies and of course the anaesthetist needs to describe them all to me just before she goes in. As she goes off I am expecting to come back to, at best, a groggy, unhappy baby - at worst another stint in PICU, or worse.

I went down to discover a bright, happy baby gazing around like nothing had even happened with a beautiful, clean and tidy femoral line in her left leg.

Sailed through with a perfect ten.

Just for something different.

Also, if the lovely person who sent me some food today is reading this, can you leave a comment and let me know who you are? In the haze of surgery I didn't quite catch who it was who left the two yummy meals for me!

Always Knock On Wood

2011-10-23T14:20:00.004+08:00

Today we were changing the dressing on Kaylee's central line. For those who do not know, this is a line into a major artery by which we can give Kaylee drugs. I had never been a big fan of this particular line into Kaylee's neck. Put aside the fact that a great hookin' tube was coming out of my daughter's neck, it has been oozing blood, wiggling around and carrying on from the beginning. Today the sutures that were holding it in gave way and the whole thing came out. While there was a bit of blood, there was no immediate danger to Kaylee when this happened however it has made the next bit a whole lot more complicated that it was!

Kaylee needs a central line because her course of antibiotics (which goes until November 3rd) is delivered through it. Getting a peripheral line (a line into her arm or leg) into Kaylee is hard and they stop working usually within a few days and we can't constantly be putting new ones in because that will cause scar tissue to build up and make it even harder to get a line in - seeing as she will need at least two more surgeries before her first birthday we need to preserve all the line access we can get!

So we are giving Kaylee's meds a different way until tomorrow when a cardiac theatre will be available to put in her line under a general anaesthetic - making the third general she has had so far. It isn't hugely dangerous but is also not without it's risks. The fact that she will have oral antibiotics overnight (and NASTY ones at that) also bugs me as it will muck up her gut flora.

So what have we learned boys and girls? We have learned never to say "Tomorrow we will try suck feeds.". It seems to always end in tears! Every time we have said it so far, something has happened to stop it!

My Miss Crazy Hair

2011-10-23T10:36:00.002+08:00

I gave Kaylee's hair a good scrub yesterday thinking I may tame it.

It seems there is no taming that mop!

PICU lag

2011-10-22T13:32:00.003+08:00

The best time to be transferred into a ward or new hospital is a Friday. It gives you the weekend to relax and find your groove before all the five-day-a-week-specialists start lining up for attention.

Coming out of PICU creates PICU lag. PICU has a different time zone to the rest of the world. It is 24 hours a day full-on. Calling out "HALT!" to innocent, fluffy bummed, rustles in the bushes can be exhausting. And the number of times I did the happy dance on the way up has me plumb wore out! I have spent the day sleeping in the chair next to Kaylee's bed in between washing her hair, changing her nappy and playing with her. I am heartsick for my other kids, husband and home. It's been 49 days since I flew into Melbourne for the first time and 49 days since I've been home. But we are on the home stretch now and coming up to 7 West has given me the same boost that passing a mile-marker in a marathon gives a runner.

Now if you'll excuse me, I have a baby to cuddle!

Yay for comfy chairs!

2011-10-21T16:49:00.007+08:00

We are out of PICU and on the cardio ward again. We are doing so well we didn't even get a room near the nurses station. As I type Kaylee is propped on my lap with a pillow watching me avidly. Yes, WATCHING me. Both eyes open. Kaylee did not open her eyes for days after her surgery.

The other day a card arrived that the sender forgot to sign or put a return address on. It contained some cash. Coincidentally, the night before I had thought to myself that I needed to get some cash and considered buying Kaylee a toy to look at in order to get her to open her eyes and interact a bit more. You gotta love those coincidences! So this morning I bought Mr Flutterby the Butterfly. When I brought him in to show Kaylee she had her eyes opened just slightly then I held Mr Flutterby up showing the black and white patterns on the back of his wings. Instantly she opened her eyes WIDE an spent the next 20 minutes staring at him. I get the feeling Mr Flutterby is a hit. She has now spent more time today with her eyes open and interacting than she ever has before. I love Mr Flutterby.

Health wise Kaylee is doing great. She does have an antibiotic resistant infection (one of those nasty bugs that are all around hospitals) but it was caught before she showed any symptoms and it is being treated by some "big gun" antibiotics. This should mean that it gets knocked on the head before she does show any symptoms. Unfortunately it also means we are stuck with the central line for a little while longer as she will probably need to be on antibiotics for three weeks - again! Her heart is doing well though and because we have been proactive with medication and treatment her reflux isn't bothering her either. She has a little bit of redness under her chin where her spit pooled while she was on CPAP but we are treating that with pawpaw ointment.

It's been a good day!

2011-10-20T06:48:00.002+08:00

There are those who see the glass as half empty.

There are those who see the glass as half full.

There are those who see the glass as full - half full of air, half full of water.

And there are those of us who recognise the validity of all the above answers, but wonder what the point of the question is.

I mean seriously, are we wanting to DRINK the water? Why are we all worried about the water? Or is it the glass we are wondering about? What are we planning to do with it? How is it relevant to my needs right now? Am I dehydrated? We have a glass and approximately 125mls of water - where do we go from here? Will this glass of water help me do my job better?

Right now I have the most beautiful tiny baby girl in the world and a handful of diagnosis. There are those who say it is a horrible thing to have spent 7 weeks in various hospitals, watching Kaylee go through painful and distressing medical procedures and having our family separated, and I agree with them whole heartedly. There are those who say it's a great thing that the beautiful Kaylee is a part of our lives and it's totally worth all the pain and distress, and I would agree with them whole heartedly. But the question I sit with is - where do we go from here?

Hopefully from HERE (PICU) we will be going upstairs to 7 West today or tomorrow - yay!

Right now Kaylee is breathing totally without support and has been doing so since yesterday. Once we took the breathing stuff off she started opening her eyes again (since the surgery she'd only opened her eyes a crack occasionally - and who could blame her?). Today hopefully her central line (the big scary drip in her neck) is being taken out and a new peripheral line is being put in (a drip will be put in her arm or leg). The dressing has been left off her zipper (incision site) and later today I am going to put some clothes on her again.

Now we can start to work out how best to start preparing for home. HOME!

Still a while away but a tangible goal now.

So now I am going to gaze in my baby's eyes, strategise and plan, and fill up the glass to take a big drink of water.

A paddle down a stream of conciousness

2011-10-19T11:18:00.002+08:00

I spend a lot of time watching Kaylee sleep.

I am typing while I sit with feet on the edge of her bed base so I can look up into her face and she is sleeping right now, eyes moving under their lids as she dreams. I wonder what she dreams about. Her little life has been a full one so far. I wonder if she sometimes dreams the sounds she used to hear through my belly wall. Anna stroking my belly and telling me her baby was in there. Read alouds around the table. Evening worship and story time. Occasional shouts of "Stop! No! Put that down!" *CRASH* "Oh FAR OUT!". OK, not so occasional. When Kaylee is cranky sometimes I think I should start yelling instructions and directions at the nurses to make her feel like she is in the womb again.

As we start to approach the end of our PICU time (1 week ago exactly my girl was stoned out of her mind and we were preparing her for surgery) my mind is turning to thoughts of when we go home. I asked a veteran cardio Mum if I'm ever likely to relax about Kaylee's health and well being. She told me probably not. Our life will now include hand sanitiser at all the entrances to the house, asking friends and family who pop by if they have been in contact with any illnesses in the last 72 hours and avoiding indoor public gatherings at least until Kaylee's first birthday when the surgeries are finished and she has recovered. This suits me fine. Frankly I think people who go visiting or to public places with gastro should be strung up publicly but nursing a house full of vomiting toddlers will do that to you. Our lives will now include fun trips to Hobart to the Botanical Gardens for sight seeing and the Royal Hobart Hospital for cardio, genetics and palate check ups. Our lives will now include family trips to Launceston which include stops at the paediatrician and early intervention programs. Our lives will work around breast pumping needs and feeding times.

But our lives will also include tiny pink outfits on the clothes line, impossibly long eye lashes and minute shell-like fingernails. We will still be listening to Jon read at the end of the day, children laying on the floor lined up like sausages as we experience adventures in Narnia and beyond and Kaylee nestles in a lap or her rocker, just one of the crowd. We will have trips out bush with a certain boy teasing a certain girl about leeches, fishing and camp fires as Kaylee snuggles into a sling. We will bake and garden and build and study and Kaylee will be taken up in the whirlwind that is our life adding her own special breeze to the mix.

And I wouldn't have it any other way.

47 days and counting

2011-10-18T10:06:00.002+08:00

Today I cuddled Kaylee for the first time since her surgery. It was fantastic. As the nurse handed her to me I set my jaw and said firmly to myself (repeatedly) "DO NOT CRY". I failed at this. It's not that I have anything against crying, it's just when you cry people try and comfort you and I wanted a bit of privacy with my girl. Thankfully, PICU being what it is, people did understand and keep their distance as I discretely wiped at my face with the back of my hand and sniffled into my baby's hair. She is taller now than six weeks ago and there is a solidarity to her form that wasn't there before (IN YOUR FACE over-enthusiastic-dietician-from-Launceston, I told you she didn't need calorie sup yet - HA!). This has the effect of her feeling more real to me, less ethereal in her form and more earth-bound. Her beauty is more of-this-world than it was.

She has a fondness for over-saturating now (which means there is sometimes TOO much blood going to her lungs) and so we are now balancing out her medications, upping some and weaning others, while her body works out how to drive itself with its new modifications. It's a tight rope act, but we are getting there. I know Kaylee is getting better because she sucks her dummy with relish and gets really ticked off when someone does something she doesn't like. If she has the energy to get annoyed, it's a good thing!

I feel a bit like a sentry on guard at the moment shouting "HALT! Who goes there?" at rabbits in the forest.

There are always little signs to watch for which could mean something or nothing. For instance, yesterday she has bubbles of snot going EVERYWHERE. This could mean (a) she is on CPAP and having air pushed into your lung makes you bubble spit and snot or (b) the highly irritating family who constantly filled up the family room this week with their snotty nosed, coughing children somehow managed to get their germs on me and I transferred them to her and she has a respiratory virus and everything is going to go pear shaped.

It turns out that the answer is (a) she is on CPAP and having air pushed into your lung makes you bubble spit and snot. The treatment for this exotic symptom is the use of a tissue.

And there's the feet. Her feet were cold so I started asking the nurse about meds and periphery circulation and shunt sizes and the possibility of another open heart surgery this week etc. Do you know what her profound suggestion was? Put booties on Kaylee. We did and now her feet are warm. Over 7 years of parenting, five babies, and I forgot that booties make the feet warm and cold feet don't always mean crack the baby's chest open.

I am not worrying so much as very alert and like the sentry on duty I am very aware that the next rustle in the bushes could well be the enemy rather than a fluffy bummed distraction.

But for now I had a cuddle. The weaning of the CPAP is going well and once we are off that we can talk about going back to the ward. I like the ward. On the ward we talk about things outside the magic golden triangle of heart beat, respiration and nutrition. We start to talk about Kaylee and make plans like we think that she will be here two weeks, two months, two years from now. That kind of rocks.

Because life with Kaylee is better.

Oh the People You'll Meet

2011-10-17T11:15:00.002+08:00

It is safe to say that I am not an extreme people person.

I can happily go a month seeing only my husband and kids and be very content and my special treat to myself at College was to go a whole week without talking to anyone except when in class or to go out to a movie completely alone.

It's not that I don't like people or that I don't care about them, it is just that I enjoy, crave and am filled up by solitude.

In the last seven weeks, solitude has been scarce and I am often feeling like I am on People Overload.

Even when I am on my own in my room I can hear the sounds of the city - that writhing mass of humanity - outside my window and hear the bumps and thumps of communal living outside my door.

This has not been my favourite aspect of this experience.

However, the people I have met are mostly amazing.

There is a fellow Tasmanian who has been here for almost three months now and will be here for a few more weeks yet at least. We have been room mates almost every day that Kaylee has been on 7 West and have spent much time talking as we express or sit at our respective baby's bed sides.

I have developed a deep respect and love for nurses and doctors in general. I wouldn't even hazard a guess how many I have dealt with in the last few weeks but I could count on one hand the ones I didn't get on with. The majority have been wonderful. Right now Kaylee's room is closed off because another child in there is undergoing a procedure. I have been shut out for five hours so far which is hugely frustrating however I know that the nurse with Kaylee understands that she gets fussy when her nappy is dirty and likes to be wrapped. She cares not only about the "medical stuff" but also about Kaylee's comfort, and that means a lot to me. The night Kaylee flew out without me the transport team showed up. It consisted of a nurse and doctor from Hobart who were laughing and joking - a total contrast to the image I had in my head of no-nonsense, all business, emergency types who were going to whip my baby away. I left the room while Kaylee was intubated and when I came back, Doctor Katherine had wiped Kaylee's eyes and was playing with her hair and "prettying" her up. She will never know what that did for me as a mother. The nurses from Launceston called through yesterday just to see how Kaylee is doing.

There are the long term cardio Mums who have been in and out of this and other hospitals for years. They are often generous with their knowledge and experience and amazingly supportive.

Many of the people I have known for years have stepped up to be incredibly supportive. The visits, phone calls, messages and million other ways they have shown they care have nurtured my heart.

Some people I hardly know or have never met in person have found ways to help make our journey easier.

So while I am still looking forward to long quiet days at home, I am blessed by the ministry of all these people.

Another day of stepping forward

2011-10-16T21:40:00.002+08:00

Today Kaylee had all her drains and things taken out which she sailed through.

She also had her breathing tube taken out which she didn't sail through quite as easily. After a few hours of wondering if we would need to put it back in she did settle down a bit and she is now still on a bit of fancy breathing equipment (CPAP) but doing fairly well.

I had a good chat tonight with another "cardio Mum" who is down here from Queensland. Her little one is 3 now and has had three stints of having an open chest for five days at a time. There is always someone who puts your own situation into perspective. However she did point out to me that "just a shunt op", if it goes seriously wrong, has just as serious a consequence as any of her boy's ops; therefore any pain, distress and angst I am going through is just as legitimate as hers.

I picked her brain about life with a "cardio baby" and plan to catch up with her again tomorrow to do the same.

I can't wait to get out of PICU.

The stools make my back hurt and the family room is continually packed - often with a certain family who has at least two children with respiratory infections (aka colds).

I like the PICU nurses but I miss my 7 West (the Royal Children's cardio ward) nurses. I miss my Tassie nurses even more.

But Kaylee takes the scenic route most of the time and to fret for those things is to miss celebrating taking out the drains and wires successfully and removing the breathing tube. It somehow got late again (waffling up on 7 West does that) but I managed to nap in that overcrowded family room today while I waited for news on Kaylee's tube removal.

It was a full day today and I am tired. I would love to shower but it seems inconsiderate to shower at 1am here where so many people with sick kids are trying to sleep so I will put it off for morning. Right now I am going to crash knowing we are heading in the right direction right now and tomorrow I will enjoy the scenery with my girl.

Slow and Steady

2011-10-15T18:47:00.003+08:00

We are making slow but steady progress in PICU.

She is more awake and alert than ever.

I love to see her eyes open, I hate to see her working hard to move against the tubes and wires.

I wish I could do the same trick as the fairies from Sleeping Beauty and send Kaylee back to sleep until she is all better and there is no more discomfort or pain. But I can't.

We do all we can to keep her comfortable and content and I am looking forward to our next steps forward.

A good day

2011-10-14T16:20:00.002+08:00

Today Kaylee did everything we wanted her to and nothing we didn't want her to.

Her drugs are being keyed back so she is waking up (sort of) and doing most of her breathing on her own. Tonight I will change her nappy and kiss her and sing to her.

Hopefully we will be taking out her breathing tube sometime over the weekend.

In some ways her waking up a bit makes it harder to leave her at all.

But steps toward being back up on 7 West (the cardio ward) are good.

A good day.

Hard Questions

2011-10-13T15:00:00.002+08:00

Often I am asked by my medical staff if I have any questions. I usually have a million - but only two or three that can actually be answered in any concrete way.

Usually the answers to all the rest are:
"There is no way of knowing for certain just yet"
"It depends on how she reacts"
"we will have to wait and see"
and
"I don't know."

And I know exactly how they feel.

When people ask questions I genuinely do want to give them answers they can understand and hold on to but answers that won't mislead them. But the questions they ask are tricky!

Questions like:

"How is she?"

Yes, that is a hard question to answer. I can tell you how she is right this minute, right this SECOND, but it may not bear any resemblance to how she will be in five minutes time. She may be doing fantastically and have been doing brilliantly for days and then twenty minutes later she is navy blue, surrounded by the Medical Emergency Team and on her way down to ICU. She can turn on a dime.

"What, exactly, is wrong with her?"

Do you want the reader's digest abridged version or the Encyclopaedia Britannica version? Kaylee has a complex diagnosis which means she has LOTS of different things which all bounce off each other. Even her heart condition is a little different as only a minority of children with Tetralogy of Fallot heart condition need a shunt and only a minority of that minority require bypass and only a minority of that minority of THAT minority have the clotting complications that occurred with Kaylee. Of those children I have no idea how many of those children have Gastroesophageal reflux disease, a cleft palate and Cornelia De Lange Syndrome! I am guessing not many. So to paint a full picture of Kaylee's health issues is not a small task. And sometimes, at the end of the day, I am a little tired already. Some of Kaylee's diagnosis I am still wrapping my head around. I am an expert when it comes to Kaylee's daily care, I use my knowledge of child development and 7 years parenting experience every day, I am pretty good at advocating for her in terms of making sure that medical staff understand that she has a complex diagnosis and take all her various issues into account, but I still a learner when it comes to describing the medical side of things. While I understand in broad terms Kaylee's diagnosis, there are still some details I am a little fuzzy on. After 6 weeks of medical procedures, 3 hospitals, 4 wards, 2 states, 4 inter-hospital transfers, untold numbers of medical professionals and being separated from the rest of my kids there are days when my understanding is reduced to "Heart broken, doctors try and fix heart. Me make milk and sing.". And I am totally OK with that. I am coming to understand how the reflux interacts with the heart condition and the syndrome issues and cleft relate to her feeding issues etc. but getting to a point where I can explain this fully to others is taking some time. And of course, Kaylee being Kaylee, it all changes on almost a daily basis. So yes, it is a hard question!

"Is she gaining weight?"

Now you would think this would be an easy question to answer! But even within this there are hidden complexities and to give a complete picture usually requires more than a yes or no. While normally a healthy baby gaining weight is an indication all is well, when it comes to Kaylee it can mean (a) she is growing and will tolerate future surgeries better than if she wasn't growing (b) she is growing but her heart condition is still deteriorating and things do not look good or (c) her kidney function has been impaired and she is retaining fluid! I am hoping in future it means (a) and ONLY (a)!!

"Will she (walk, talk, learn, eat normally etc.)?"

There is one and only one answer to this question and that is "I don't know". Unfortunately, it doesn't make the question any easier. We will do everything we can to make sure that Kaylee has as full and rich a life as possible. She may have average intelligence with only a few traces left of her early physical trauma or she may not. We simply do not know. Sometimes the hardest questions aren't hard because of their complexity, they are hard because of their content and the Pandora's Box of emotion they evoke.

These are honest an loving questions which I honestly do not mind getting! But I do need people to understand that if it takes me a while to answer, it is because answering the questions of others is taking second place to doing my job of Wife to Jon and Mum to all six of my kids. I need people to understand that if my answers seem vague and incomplete, it is not because I resent them asking or because I am deliberately leaving them out of the loop, it is sometimes because the answers ARE vague and incomplete! I need people to understand that at this moment simply heart beat, oxygen and nutrition takes up the majority of our time with Kaylee. I need people to understand that chilling with my hubby, talking on the phone to my kids and hanging with my Kaylee take precedence over everything else right now.

And for the most part, people have understood that.

And I thank you for it!

In the mean time, I will keep on asking the hard questions and trying to find good answers for them. And I will spend each day loving my girl and being thankful for the privilege of having her in my life.

The shunt is working

2011-10-13T09:19:00.003+08:00

It's been a long night. And morning.

When I saw Kaylee last night she had an open incision in her chest and there were question marks over the success of the shunt placement. She had bled lots and had been given transfusions and clotting agents and we were worried about clots forming in the shunt.

Today at 12:30pm - more than 24 hours after she had turned navy blue - the doctor rang to tell me that her shunt is working and they have closed the incision.

Still a rocky road ahead but good news is good.

Just a quick update

2011-10-12T23:54:00.004+08:00

Just a quick update before I collapse into bed.

Kaylee experienced some complications with the surgery. She bleed badly when coming off the bypass which the doctors were all set up and prepared to deal with. She did keep bleeding badly though and she was given lots of blood and clotting factors to stop the bleeding and keep her going. Unfortunately this means we need to watch her shunt very carefully to make sure that the clotting factors given to Kaylee to save her life don't cause the shunt to fill up with clots. It is a juggling act for the doctors at the moment. There are a few different options to take if things go badly in the next 24 hours, one being to go back in for another surgery. She is being watched very closely in PICU at the moment.

Jon is here with me, the other kids are with Bill and Kester.

Please continue all prayers.

The earliest we are likely to know more is tomorrow evening, but it may be days.

Melbourne: changable weather

2011-10-12T12:50:00.003+08:00

This morning I got in early and the night nurse told me Kaylee had a good night. We hung out together and I did some computer stuff, taking time to write a long e-mail to one of my favourite friends. We had plans of a test today to look at her reflux some more but other than that, a quiet day ahead of us - I was planning a second attempt at finding a shopping centre later that afternoon. We did normal things like weigh and bath her - a relief to get more ultrasound gel out of her hair. I had a big cuddle then we settled again. The young student nurse was given the job of taking obs (which my nurse thoroughly checked each time) and the other babies kept the nurses moving every minute with their demands. Kaylee had perhaps one dip in her heartbeat the whole time and was generally quiet and happy, opening her eyes to stare knowingly at me at times or sleeping.

Then a friend dropped in a box of my stuff and I went back to Ronald McDonald House to put it away. I was walking back to the hospital when my phone rang. It was Ali, my Case Nurse. I presumed she was ringing to talk to me about the planned test or perhaps tell me that Genetics wanted to talk to me. She was, in fact, ringing to tell me that my baby was navy blue from head to foot. It took an eternity to get back to the ward where the room was full of people putting lines in, bagging, administering drugs etc.

Seeing a baby surrounded by all of this, with tiny blue toes poking out, is gut wrenching and surreal. Two things so totally different, meshed together. Death and birth brushing against each other. Innocence and pain. Love and the crushing effects of sin.

I didn't want to tell anyone.

There is a comic that has a man looking thoroughly bedraggled and sitting in a bar. He is leaning over to the bartender saying "I'd tell you all about it but I don't want to hear it myself"

That is how I felt.

I didn't want to be the bringer of this news to those who love Kaylee.

And each time the words left my mouth it made it all the more real.

When I got down to ICU with her she was stoned out of her mind. The peaceful sleep of the morning now a slack-jawed sleep of the drugged.

I think I mentioned before that I can tell how well Kaylee is doing by what kind of chair I have. Today in ICU I didn't even sit down.

She is in surgery as I write this. The surgery is one that these doctors do often and the odds are in Kaylee's favour in spite of her size....just. It isn't a surgery that will fix her heart but it is one that will hopefully get her through the next few months until she is big enough and strong enough for a full repair. We are hoping to keep it down to three surgeries before her first birthday so hopefully they will get the right size shunt first time.

Jon is on his way over. I can only imagine what he is going through.

I am going to spend some time here in the quiet of my room where I can sit without anyone asking me how I am or if I need anything and cry before I have a sleep, express and eat. The three things I need to do so I can keep taking care of her.

Bittersweet

2011-10-11T18:42:00.003+08:00

I got a room at the Ronald McDonald House today.

I will get more sleep and have a room where I can go to decompress or cry as needed.

And I have to walk away from my daughter to do it.

The choices that I am being served at the moment officially suck.

I am being carried and watched over. I feel God with me every day giving me strength and direction and love... but it doesn't make it easy.

I fantasise about having all my kids in the same room. Sleeping next to my husband. Picking up my baby and putting her to the breast. A day without a breast pump.

And in the midst of this I whisper thanks.

For the two weeks in Tasmania which just "happened" to be at the same time as my wedding anniversary and Christopher's fourth birthday.

For the rest.

For good nurses and doctors.

For comfort.

For beauty.

For an amazing husband.

For beautiful children.

For a million different things.

To say thank you for these things sometimes takes effort. Truly a sacrifice of praise from my heart. The things that suck and hurt and frustrate do not become less because of the beauty of my life but I refuse to allow that pain to eclipse the beauty.

Today I held my daughter's tiny hand as she leaned her cheek against me and fell asleep.

Things suck....but things are also amazing.

Things I love about my support team

2011-10-10T13:21:00.003+08:00

I started blogging our journey for a few reasons. So that friends and family would have a central point to get information without us having to tell the same story repeatedly, so that we would have a record of what happened, so that I could do a bit of writing therapy and also to give others insight into this mad, crazy world of hospitals, special needs and critically ill babies. Before going through this I would have had no idea how best to support someone in my situation. I thought I would write down some of the things that my support team have done for me that I found most useful so if my readers are ever in a place where they can support someone like me, they can get a bit of an idea of what may help.

(1) My support people call before coming around. They recognise that things happen sometimes with no notice whatsoever and even if we had arranged a visit it may not be convenient so they ring and are prepared to leave at the drop of a hat.

(2) My support people listen. I have talked more in the last month than I did in the previous YEAR. I have found that sometimes I would just need to decompress and especially in the first few weeks I would talk non-stop when with people I trusted. Now, I sometimes want to have "normal" conversation. My support people take my lead.

(3) My support people don't push me to talk about things that I don't want to. Some of the things I have seen and Kaylee has gone through literally turn my stomach to even think about and some aspects of Kaylee's diagnosis are very confronting to think about. Sometimes I have seen people before having a chance to talk over a new piece of information with Jon and haven't felt comfortable sharing it quite yet. Sometimes I just want a few minutes where I am not having to talk medical stuff. Also, my whole attention is taken up with working out TOMORROW so while I do have plans at the back of my head about Kaylee's long term care, I don't necessarily want to discuss what we will be doing in five or ten years time. So while my support people ask gentle questions, they do not get offended or push any boundaries if I choose not to share or avoid some topics.

(4) My support people follow instructions. Especially in the early days I felt like I do at the height of labour when I am completely focussed on the task at hand and don't always have my best manners on when I ask for something. My support people do exactly what I asked, exactly the way I ask for it. If I ask for something specific and they can't get it exactly the way I ask for it, they let me know as soon as possible and ask me for further instructions.

(5) My support people are focussed on me. Most of them love Kaylee and love a chance to visit her, but their primary role is to support me so that I can care for Kaylee. So if they don't get to visit Kaylee, it is no drama. They recognise that the best thing they can do for Kaylee is to support me so if our visit is restricted to a cuppa downstairs rather than a visit on the ward they are content with that. Several support people have been happy to drop off stuff and go, allowing me to sleep rather than converse if I needed it. They make it all about me and I love them for it!

(6) My support people do not ask to hold Kaylee. Kaylee's cuddles are precious and sometimes exhaust her so I selfishly prefer to keep them all for Jon, the kids and I. Thankfully my support people have recognised this and don't treat me like I am selfish or over protective or throw hissy fits!

(7) My support people recognise that being sad or angry is OK. They don't try and make me feel differently or "cheer me up". They don't get shocked or upset if I have negative feelings or thoughts. They don't think that I am not coping if I have these feelings. They let me feel it, talk about it, pray about it and move on when I am ready.

(8) My support people don't make their feelings my problem. Many of my support people have been upset about what is going on. Many of them are personally invested in Kaylee and love her dearly as their grand daughter, niece, honorary niece etc. Many of are deeply moved by our adventure and have lots of feelings about their own kids, past or lives that are triggered by what is happening. But my support people make sure this doesn't stop them providing the care they said they would give me. They find their support from others, get the rest and nutrition they need to function and step up to help me the same way I step up to help Kaylee.

(9) My support people don't bite off more than they can chew. They only offer what they know they provide and they let me know if their situation changes as soon as possible. When I am relying on them so heavily if they said they were going to do something then didn't do it or didn't do it in the time frame they promised it is actually worse than if they never said they'd do it at all. It would be if they ran up and kicked a crutch out from under me. Some people get a bit of a high out of making promises of support but drop the ball when it comes to keeping those promises. Thankfully, my support people don't do that!

(10) My support people are very practical! They realise that feeding me, offering to visit me, asking for or simply meeting my needs and feeding my family are important things. They also realise that prayer is pretty practical too!

I have been humbled and awed by my support people and have been blessed by their ministry to me. I hope one day to pass the blessing on to someone else who needs it.

Writing from a familiar place

2011-10-09T19:54:00.003+08:00

It's crazy being back here.

I am across the room from where we were two weeks ago.

I am a more confident Hospital Mummy, pushing buttons on machines, picking Kaylee up without a spotting team, replacing probes and other medical bling and bathing her on my own. I even discuss my observations of Kaylee's condition with medical staff with a reasonable degree of confidence in my own expertise - I am becoming an expert on reading Kaylee. But being here also makes me see her fragility and keenly feel my own lack of ability to make it all better. The nurses here hardly sit down all shift. I look forward to seeing my favourite nurses, lactation consultants and other support staff in the coming week but dread the hustle and bustle of week-day RCH (royal children's hospital). I am made breathless by the amount that is on my to-do list for tomorrow. I miss Launceston. The slower pace and privacy suited me well. I am glad I got to recharge. And when Kaylee starts to go blue, I am glad we are here where we can actually, maybe, do something more to help her.

It has been quite some time since I dreamed of anything but sick babies and hospital procedures. It has a way of getting under your skin, being here.

And if you have stuck with us on this journey thus far you are doing well. Given the choice, I think I would have slipped back into a more comfortable life and shut out this world of baby's blood and wonky hearts. But I have the reward of Kaylee if I stay here, so I stay. You who have walked with me on this journey, who have had the courage and the fortitude to keep walking at my side and encouraging me when you had the choice of walking away, you who have listened to me tell the same story over and over again for a month - thank you. If you had told me six weeks ago I would be on a first name basis with nurses and doctors in three different hospitals in two different states I would have freaked out. But I have found that you are given the grace for each moment. I am sad, tired and apprehensive of what tomorrow will bring in spite of my best resolve. But I am also thankful, blessed and carried. Psalms makes sense in a way it never has before.

The Baby Has Landed

2011-10-08T19:23:00.004+08:00

We finally flew out at 4:30pm.

We were further delayed by the plane being needed for a more urgent case. I was not too displeased by this though because (a) it is always a good thing if they think you're healthy enough to delay and (b) it meant that Kaylee and I ended up flying over together on the RFD (Royal Flying Doctor's) air ambulance with Jackie - one of my favourite nurses from Hobart. Managing not to be separated and avoiding a commercial flight made my day MUCH better than anticipated.

Our next step is to observe for a few days and decide from there.

If Kaylee is deemed to be not responding to the meds sufficiently we will look at having a shunt put in her heart which is a much less complex operation than a full TOF repair and operate again when she is older to do the TOF repair. If Kaylee is deemed to be responding to the meds well enough, we will go back home to Launceston and continue on them - most likely staying in hospital until Kaylee is old enough for her full TOF repair. I am praying for a third option - the miraculous fixing of Kaylee's heart!

The most definite response to the question of how long we will be in Melbourne I can give is 'a while'. More than three days but most likely less than three weeks.

Meanwhile Christopher went to hospital last night with asthma and all the other kids have colds. Never a dull moment with the Guest family.

**UPDATE** Christopher was not admitted to hospital. He and Jon got home in the early hours of the morning.

And the adventure continues....

waiting...

2011-10-07T17:57:00.003+08:00

I can't believe we've been doing this for a month.

We are still in Launceston. We had Kaylee loaded up and literally at the door ready to fly out when the Flying Doctor's Service had a higher priority case take the plane. Then when the plane was available, there were storms brewing over the Strait and Melbourne and they were unwilling to fly a fixed wing double-prop plane through those storms - especially with a sick baby in the back! My nurses were working hard to cancel my commercial flight out at 6am when there was a call from the Flying Doctor's to say they were re-evaluating the weather. As soon as Sandy, my nurse, put down the phone it rang again - the travel co-ordinator calling to say she had cancelled my flight. So there was a mad scramble to rebook that flight only to find out that the storms were too bad for the little air ambulance to fly through and Kaylee would not be flying out after all. At this stage I had a shower and went to bed! It continued all night and I woke up before sunrise with the director of the hospital standing over my bed quite cross that I had not been on the 6am flight that the hospital had paid for. I was too groggy to explain that I was not going on a plane until my baby was on a plane. I have NO desire to fly over, find out that Kaylee couldn't come over for some reason, and then spend the weekend in Melbourne without my baby, unable to use the breast pumps or sleep at the Royal Children's Hospital because Kaylee was not there. So at last check, we are planning for Kaylee to be leaving about 10:30am and hopefully once she is gone we can book me on a 2pm flight. And if the director of the hospital has a problem with that, I will pay for my own darned flight!

While all this is frustrating, I am relieved not to be rushing a very sick baby out the door. NOT being the highest priority case in the state is fine by me.

I am insanely jealous about now of mothers who have healthy kids.

I am sick of travelling.

I want to take Kaylee home to my other kids and my husband and just have a normal day with all of us under the same roof.

Just having all of my kids in the same room for the first time would be amazing.

Kaylee is tolerating her hourly feeds well. Her de-sats seem unrelated to the change in her feeding. She seems to be waking up, spending much more time looking around. She is maintaining her body temperature well which is great. It is easier to go accross this time knowing where we are going and having friends ready to greet me.

I am simply praying for wisdom for our doctors at the moment. There are to many variables to try and speculate what our next step from here will be. The medication she is on is helping, but she can't leave the hospital while she is taking it. Doing the operation now would get it over with but she is still so small and delicate. And there are a whole lot of other options, none of which are much more pleasing than those two. I am kind of praying they invent some miracle pill to fix Kaylee's heart before we get to Melbourne. In the next 45 minutes would be good so they can post it down and we don't need to go at all!

But I will follow the path laid before me.

Not because I am brave or strong, but because I have no other real option.

I will take strength from my God for this journey.

And one day, this will all be a memory.

There and back again...and there again.

2011-10-07T12:43:00.002+08:00

Hi ho, hi ho, it's off to Melbourne we go.

Unfortunately, Kaylee has started to struggle a little with her oxygen levels. We have put her on a medication to help with it but we are on our way to Melbourne to be reassessed and see if we need to move her heart surgery forward or treat her differently. We have no clue as to how long we will be there or what will happen while we are there but we are just riding the train. Thankfully Jon and I got to spend a night together and I got to spend Christopher's fourth birthday with him. While my inner toddler is in the middle of a full blown tantrum, kicking and screaming at the current turn of events, I am pleased that we have this option and glad to leave this decision in the hands of my doctors. Some of Kaylee's episodes of her oxygen saturation levels dipping (de-sats, in the medical lingo) have been a little scary with blue skin and a bit of oxygen needing to be wafted at her. She often responds to what we call the magic pillow - that is, having her cheek against my skin (preferably my breast) when this is going on. Fortunately, she has been responding to her new meds beautifully but decisions regarding this medicine, possible side effects of the medicine, how long we can sustain it's use, how Kaylee may respond to surgery at this time etc. are big complex ones and yes, I am very glad I don't have to make them.

So we are on the road again.

VERY glad we got a week in Launceston to relax and refuel.

I have taken the last two days simply to decompress and soak up my husband and kids and I am thankful for that.

The transport is not quite so scary this time as Kaylee does not need to be intubated or have any scary looking machines and she is being transported by nurses I know to the care of other nurses I know. It is not a huge emergency. I know with a fair degree of certainty that when I get to the hospital tomorrow morning Kaylee will likely be in a similar state to when I kiss her goodbye tonight.

I am thankful for a million things.

I rage at a hundred things.

Through it all, I praise Him.

Standing at a cross roads

2011-10-03T13:54:00.002+08:00

We are constantly standing at a cross roads and I have no idea which way we will go. Today we had our first Kaylee bath and tucked her into an open cot. She is doing FANTASTIC today. Today we are talking upping feeds, trialling bolus feeds later this week, tentative sketches of what we will do when it comes time to transition home (still a few weeks away at this stage) and long term cardio monitoring etc. But we are also concious that if she fails to maintain saturation levels we could well be on an early trip to Melbourne. Things could go one way or the other and I don't really get a vote. I am here for the ride on the runaway train of Kaylee's needs. Except it is not out of control, it is just out of MY control.

So today, I am sitting back. I am munching on some yummy snacks. I am tackling the hefty pile of paperwork that I need to do. I am taking a break to read my novel, have a coffee with a friend (and a mars bar cheesecake!), drink deeply from God's Word, and surf online. I am enjoying my baby's first bath and revelling in her being in an open cot with no needles poking into her.

I will look forward to the blessings to come, and the worries - well - I'm leaving them where they belong.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34

To The Glorious Ones

2011-10-02T12:14:00.002+08:00

Today I was reading psalm 16 and it spoke to me very much.

Verse 3 stood out to me particularly. In the NIV it says:

As for the saints who are in the land, they are the glorious ones in whom is all my delight.

So many people over the last three weeks have been our glorious ones - our "heroes" as the NLT puts it.

Friends who have cared for our children, who have fetched random items, who have prayed.

Because of the Glorious Ones in our life my freezer is being kept full and we have more cake than we know what to do with (seriously, Jon is drowning in cake right now).

Friends who have messaged me to say they were woken by an urge to pray for me at 12:30am - which was just when I had locked myself out of my room while wearing underwear and a towel.

And the Glorious Ones whom I have never met. Friends of friends who have sent us packages of goodies - baby items, little luxuries etc. Online friends who I have swapped only homeschooling stories or facebook status with who have cooked me meals, sent me fruit baskets, nourished me body and soul. Prayed for me.

The silent Glorious Ones who have told friends to tell friends to tell friends to let me know they are praying for me. People whose names are not even slightly familiar who have interceded for us, who I cannot hope to thank in person until we are all in Glory together.

The staff members - doctors, nurses, other - who have let me know in quiet ways that they are praying for me. Who have served us with hands of angels.

I cannot ever think to thank all of those who have been there for us.

But if any of you are reading this, my Glorious Ones, My Heroes.

Thank you.

It's a bright, sun-shiny day!

2011-10-01T10:27:00.002+08:00

[written yesterday but blogger didn't let me post until now.]
I woke up this morning and had to walk all of two metres to touch my daughter - I could see her from where I was laying.

I held her while I was wearing my PJ's.

I did not ride a lift or climb flights of stairs until after 10am - and then only because I wanted to.

Right now if I look around the room I cannót see another single person other than Kaylee and the peace is amazing.

When I go outside, I know which direction to walk to get to a supermarket, bank, restaurant or anything else I may want and I know I will not get lost and miss expressing or changing Kaylee's nappy.

This afternoon I will see my children and they will have travelled for under an hour to come and see me and will be going back to their own beds tonight.

These things are AMAZING.

Tomorrow Kaylee will have her last dose of antibiotics and after that she will be a puncture free baby! The antibiotics, by the way, were prescribed because a blood culture came back with Golden Staph which was probably a contaminant because Kaylee was not sick enough to have Golden Staph! Also her two lumbar punctures came back inconclusive. They got a little bit of blood in them so it is likely that the white blood cells were from that rather than her body trying to fight off meningitis. But we had to treat for these illnesses even though we suspect she did not have them because we simply could not take the risk with her heart issues etc. I am frustrated at the added trauma that this caused however I am also happy that we did not CONCLUSIVELY have these illnesses because that would have made for a very sick baby. Kaylee had her drip re-inserted last night after it "tissued" (poked out of the vein into the tissues of her arm) but the Dr got it in the first time which is amazing (officially the second time ever someone has got a vein first try on Kaylee) and if anything happens with this drip they are not going to put another one in so they can conserve her veins. They will just give her last bit of antibiotics as an injection. As of tomorrow Kaylee's only medical bling will be her NG tube and some monitoring wires - YAY!

Once she does not have an arm splint on for her drip, I will be able to put her in some comfortable warm clothes and she will go to an OPEN COT. Yes, my baby girl in a big girl cot! A well girl cot anyway. This week we will look at changing her from continuous feeds to bolus feeds (every hour to start with, then every few hours etc.) and once she is tolerating that fine (could take a day, could take a couple of weeks) we will look at feeding her partially with a special bottle for kids with cleft palates and other issues. Any food she takes orally is fantastic however we need to make sure she doesn't exhaust herself and use more calories than is in her food when she is using the bottle. She needs to grow and get strong enough for her heart operation.

I am loving my Launnie nurses and doctors so far. I am also getting far more rest here than anywhere else we have been so far which is doing me good. I am a fairly comfortable NICU Mum now because I have started (respectfully) bossing the doctors and nurses a bit and helping myself to supplies from their special cupboards and drawers. The doctors and nurses actually love this and the more hands on I am, the easier the nurse's job is and the sooner we get home. Everyone's a winner!

We are getting so much closer to home.

Thank-you Lord!

A BIG step closer to home

2011-09-30T13:21:00.002+08:00

Today, it was strange driving through the round about where we turned off to the airport three weeks ago. Three weeks ago, the sun had not yet risen and I was babbling at Jon to help keep him awake. Both of us felt a raw hole in our chests where part of our hearts was ripped out and taken to Melbourne. But today, the sun was shining and we turned toward Launceston.

As we backed up to the hospital to unload there was a still frame in my mind of my sedated, intubated, naked baby being loaded into the back of an ambulance against an inky black backdrop of night as I prayed that she would live - at least until I got to Melbourne. It juxtaposed strongly with the pink, healthy baby in a vivid purple grow suit, squeaking her objections over her continuous feeds being cut for the trip and waving her arms around!

As we put her into the humidi-crib in the 2 bed room I remembered standing there, feeling hollow and shell shocked and thinking "I'd do anything to get her out of there". As we gently placed her in and I decorated with teddies and quilts it felt like a triumph to finally be back in there.

Today we are closer to home.

Today I will see all my children in the same room for the first time.

Today I will sleep in the same room as my baby for the first time

Today I will walk down a familiar street to buy shampoo at a familiar supermarket.

Today is a good day.

Here us what I get to see every day....

2011-09-29T18:08:00.005+08:00

Jealous?

Kaylee Grace forces us to notice the abundant blessings we have by slowing us down and making us look at the world closer and in a different way.

Kaylee Grace makes us see and celebrate every good thing about each other and helps us realise the strength of our family and each other.

Kaylee Grace makes colours brighter, sunshine warmer, air sweeter, chocolate tastier, life better.

Kaylee Grace makes me a better person.

Kaylee Grace causes us to have compassion for others who have sick children.

Kaylee Grace makes us grasp each moment together as a family and swear never to take it for granted again.

Kaylee Grace makes us realise how blessed we are with our family, friends and community.

Kaylee Grace causes strangers to show us kindness, compassion and overwhelming generosity.

Kaylee Grace makes us celebrate milestones we never even realised existed.

Kaylee Grace helps us see God in a whole new, wonderful way.

Kaylee Grace was made for us and we were made for her.

Kaylee Grace is a blessing and a picture of God's Grace to us.

Homeward bound again

2011-09-28T20:46:00.003+08:00

Tomorrow they are putting a peripheral line in and taking Kaylee's central line out so that we can go to Launceston to finish the antibiotics. This is FANTASTIC news! Please pray that all goes well and we are able to head up on Friday as planned.

Another step closer to home!

Things are getting busier for me in some ways now that Kaylee is more well. I can be much more hands on in terms of her daily care. The faster I become proficient in caring for her daily needs and understanding the signs to watch out for with her, the faster we can go home. It is all dependent on how well she takes her feeds, how stable her heart condition is and how well I am able to cope with everything and the only one of those I can do anything about is my coping abilities so I am doing everything I can about that! Things will also be getting busy when we get back to Launceston as I arrange various early intervention stuff, set up paediatrician visits and visits with other various specialists to deal with Kaylee's various needs and try and help Jon set up the house for us to come home to.

One thing, trivial really, that has made me a little sad is the loss of Kaylee's special hair clips. I had a little white paper bag with some beautiful hand made hair clips with little strawberries, bows, flowers and various other things on them plus three that had lovely little flowers that were identical except for the colours (red, white and pink) for my three girls to wear matching. Unfortunately, I have managed to loose them somewhere between the hospital and Ronald McDonald house. These were very special to me because in the early days when Kaylee was not able to wear clothes due to the type of monitoring she needed putting clips in her hair was one thing that made me feel like the Mummy. I shall have to save up and buy some more down the track.

All is going well over all. I am exhausted but not quite so overwhelmed as I was.

I am praying that things go well and I am in Launceston for Christopher's fourth birthday!

Kaylee's Diagnosis

2011-09-26T20:11:00.002+08:00

Dear Friends,

Most of you have been curious about Kaylee's diagnosis. We have taken our time with letting everyone know the details in part because we needed to find out the details in the first place but also because we needed time to process this and come to terms with what it would mean for our family ourselves. We’d like to thank you for your patience and for allowing us the space to deal with this as a family.

Kaylee's Heart

The condition of Kaylee's heart is called Tetralogy of Fallot (TOF). It is caused by her chromosomes basically getting the recipe a little bit wrong and making her heart with a little hole between the two chambers at the top of the heart. This means Kaylees oxygenated blood (going away from her lungs to the rest of her body) mixes with her unoxygenated blood (that is going from her body to her lungs). While all heart conditions are tricky in little babies, the surgeons are confident that they will be able to fix this issue. It is one that they deal with fairly often. We are hoping to be able to leave the surgery until she is bigger and stronger, but it will depend entirely on Kaylee and how she reacts to her condition. This is MUCH better than the initial diagnosis of Kaylee's heart which was very grim and I am thankful for the expertise of the doctors here. It is not uncommon for this issue to not be picked up by scans and some babies with this condition do not have it detected until they are days, weeks even months old.

Kaylee's general differences

Kaylee has Cornelia De Lang Syndrome. Before I describe what that is I want to tell you a little bit about what a genetic or chromosomal "syndrome" is. If someone is diagnosed as having a certain syndrome it means that they have certain traits in common. Some may have many of those traits in an extreme way, others may have few in a mild way. It is almost like a buffet called "Cornelia De Lang" from which my daughter has been served certain traits. We do not yet know how many of these traits she has or will develop - it may be many years before we know that. We do not know what she will be capable of as she grows. The "text books" say that because her physical attributes are very distinctive, it is more likely that she will have some of the extreme symptoms or attributes of the syndrome, but as the geneticist says - none of those text books are about my daughter. This is an extreme case of wait and see.

Characteristics of Cornelia De Lang include:

low birth weight (usually, but not always, under 5 pounds) - so we DID have a big baby after all!

delayed growth and small stature

small head size

thin eyebrows which frequently meet at midline (her Uncle Aaron has been rocking the mono-brow for over thirty years now, Kaylee will make it work too)

long eyelashes

short upturned nose

thin, downturned lips.

excessive body hair (hence her nickname, Princess Hairy Legs)

small hands and feet

gastroesophageal reflux

seizures

heart defects

cleft palate

bowel abnormalities

feeding difficulties

developmental delay

Missing limbs or portions of limbs, usually fingers, hands or forearms

Intellectual impairment

Speech delay or absence of speech

Behavioural issues

Hearing difficulties

Vision impairment

Some of these characteristics she displays already - like her beautiful long eye lashes and delicate mono-brow, cleft palate and feeding difficulties. Others she definitely does NOT display – like missing limbs (never have I been so thankful to have a child with ten fingers and ten toes). Still other characteristics we will see if she develops as she gets older and work proactively to try and make sure we can support her in any way that we can to develop as independent and rich life as she can possibly manage. She has already enriched our lives in so many ways.

CDLS (Cornelia De Lang Syndrome) develops with no known cause in one in 10,000 births. As yet, it can not be detected in scans and to be honest, what difference does that make? Kaylee was created to be just the baby our family needs. Our grandchildren have no more chance of having CDLS of any other child unless Kaylee has children which is very unlikely as people with CDLS rarely have children of their own. Nothing we did caused Kaylee to have Cornelia De Lang Syndrome. The geneticist told me that it happens for "for no reason". I smiled and told her I believe it happened for a reason, but neither Jon nor I caused it.

We will be getting to know Kaylee for the rest of our lives. Already she has shown herself to be a tough cookie. She can go from blissed out to full diva tantrum and back again in three seconds or less. Much like one of her big sisters! Kaylee is not "one of those kids with a syndrome". She is Kaylee. Having a diagnosis will help us support and help her better, but it does not define her.

Just a quick update

2011-09-26T06:44:00.002+08:00

Kaylee is doing well. We are managing her gastroesophageal reflux (tendency to get heartburn and chuck!) with thickened feeds and keeping her tilted upright. We are being reasonably successful with that. It has been discovered that Kaylee has a small cleft in her palate which will need repair sometime after her heart is repaired. It explains some of the issues that Kaylee has had with feeding and knowing about it means we can start managing it so while I am sad that Kaylee will now be having two surgeries before her first birthday, I am happy to know anything that means I can help her better. Kaylee passed her hearing test with flying colours which is great. We will have to keep a close eye on Kaylee's hearing as kids with cleft palates do tend to get fluid build up in their inner ear, but the fact that she is starting out with full hearing is great news. I am getting in place a great support team here in Tassie. We are blessed to live where the waiting lists for help are weeks long rather than months, or even years, like on the mainland. We are hoping to take Kaylee's central line out very soon and head up to Launceston.

Over and above all the health and special needs stuff Kaylee herself is starting to wake up and interact with the world! She is reaching that age where she will crack her eyes open and take a long hard look around. We spend quite some time staring at each other! She is content and peaceful most of the time and loves a snuggle with Mum. We are often found curled up together in an arm chair fast asleep in spite of all the lines and tubes. She makes her nurses lives a little bit boring with few diva tantrums but a whole lot brighter with pink and bows and cuteness. She has become a bit of a favourite I think.

I am doing well. The kids came down yesterday for the second time which is great. Health wise I am fit as a fiddle. It takes a great deal of self discipline to take a nap or go to bed before midnight but that is nothing new. It has been a few years since I willingly went to bed. While I do like sleep, I can always think of a million things I would rather be doing. The kids are thrilled with their new sister and now know all about her various machines etc. We play the "glad and sad" game where we think of one thing that we are glad of and one thing that makes us sad. This gives them a chance to talk about all the big and complex feelings that go along with what we are going through as a family. We are working hard to make sure that their needs are cared for as well as Kaylee's.

We are now looking toward a homecoming. We have no idea when that will be as it is entirely dependent on how Kaylee's feeding goes. Thankfully we have many people who are helping us work out the various logistics of running our home once we are all together again. Caring for Kaylee outside a hospital environment is becoming less scary as she gets bigger and stronger and I get more confident.

Thank you all for your prayers and words of encouragement.

We can't wait to be home!

What is not my job

2011-09-24T08:21:00.003+08:00

One day, someone will point at my daughter and call her retarded.

Someone will peek inside my sling and recoil when they see her feeding tube and ask questions about what's wrong with my baby.

We have been thrown into this exhausting and amazing world of children with special needs and have become ambassadors.

Every time people want to know about Kaylee's heart or her differences, I will again be explaining the crazy, heart-rending and unexpectedly delightful world of parenting a special needs child.

I have been "different" for a while now and I know what it is to be stopped in the street to be asked personal questions by strangers. Once you get to about child number four you'd be amazed how often strangers feel the need to comment on the health of your "lady parts" or your bedroom antics. I know what it is to have the same questions asked again and again.

I will be struggling to find words to describe the awesome feeling of when she attempted to feed for the first time and convey the fact that having Kaylee in our lives makes colours brighter, food tastier, music more beautiful, air sweeter and hugs warmer.

I will be attempting in some way to get people to understand that Kaylee is not a "blip" in our collection of healthy children. While the pain we have gone through in the last two weeks or so is huge, it is so worthwhile.

But the knife that turns in my heart, is that one day, someone will call my daughter retarded.

Heaven help me part of me prays that her mental capacity is limited enough that she doesn't notice but I have known enough kids with special needs to know that even the most profoundly disabled child reads the tone of voice and body language and feels the pain of the rejection, fear and judgement wrapped up in those words.

The thought of it creates a feeling in me that is very familiar.

I felt it when I walked into the cardio ward to see my favourite PICU doctor about to give my daughter a lumbar puncture.

I rage at my helplessness to protect Kaylee from the pain that this world holds for her.

I shake with anger that sin creates such hurt for my child.

And I am reminded.

About two and a half years ago we had run out of milk for breakfast so I gathered the children (Erin, Billy, Christopher, baby Anna in the ergo and a belly full of Andrew) and went accross the road to the shop to get some. On our way back Erin darted down the drive way and Billy and I went through the front gate, planning to jump out and yell boo at each other when we met. I thought Christopher was following Erin but he didn't jump out and say boo. He had disappeared. I ran out to the driveway and he wasn't there. He had followed the cat then looked up and, unable to find us, logically went back to the last place he remembered seeing us (even as a toddler, Christopher was smart and logical). The shop. Across the main road that was busy with tourist traffic, log trucks, milk tankers, trucks from the lime works down the road.... Panic filled me. I ran out to see him being ushered off the road by a woman as trucks thundered past. I babbled my thanks over and over to the woman and she said something strange. She said "We wouldn't have let anything happen to him." Unable to register anything I gathered my children and ushered them inside. I plonked everyone around the table and laid hands on my Christopher and praised and thanked God for his safety. I called a friend (Bek, my pit-crew cheif actually) and babbled the story to her.

Later that day God came and sat next to me. I told Him I didn't want to talk about it. I told him I felt afraid of what could have happened. That Christopher would have had to live the rest of his life with huge challenges and pain because of my inattentiveness. That my ineptitude as a mother could have cursed my child. That I could not protect him from everything.

And God said something to my heart.

He said

"Nothing will happen to your children that they and I can't handle together."

It turns out that I don't have to handle my children's pain. I don't have to make it all better. I don't have to protect them from all hurts. I don't have to avenge all wrongs. That is not my job and even if it was, it is not something I am equipped to do. My main task as a mother is to introduce them to someone who CAN do all those things and to help THEM develop a relationship with HIM.

Yes, it will hurt to watch her go through various medical procedures. There will be times when I need to leave the room so I don't tackle the doctors and nurses and beat the living snot out of them for hurting my baby. It will hurt when people judge, fear, shun, stare, point or treat Kaylee like a mistake. I may be forced to beat the living snot out of some of those people. But ultimately, Kaylee has a greater defender than me. He has carried me through the darkest moments of this experience and soared with me to the greatest heights and pleasures.

So Kaylee Grace, my sweet girl, meet your Heavenly Father.

He loves you even more than I do.

And that is a lot.

closer to home

2011-09-22T05:19:00.003+08:00

Another full and crazy day yesterday. There are times I feel like I am directing a big stage production. I was sad to say goodbye to my amazing team in Melbourne. It is sometimes scary taking the next step toward normalcy. Leaving behind the comfort of hourly obs by nurses who specialise in cardio affected babies, lactation consultants who work with NG tubes and syndrome affected babies and cardio affected babies every day, my pit crew chief and fabulous Melbourneites (move to Tassie people!), various support workers who are vivacious, funny, kind, wise, compassionate, knowledgeable or all of the above; friends with whom I have laughed and cried at all hours of the day and night as they helped me care for my baby. And my other friends into whose hands I pressed my contact details with promises that one day we would watch our babies play together while we drink coffee, not an alarm in ear-shot. I am not a crier, but tears welled up in my eyes as I wondered if their babies would make it that far.

But I am taking a step toward home.

It often takes me a little while to warm to a new nurse or doctor but I have found that if you treat them like a super star they often rise to the occasion. There are few people who work in the care of very sick babies who are completely without compassion and humanity. The staff here in Hobart do seem to be rising to the occasion and the doctor who transported Kaylee to Melbourne was on duty last night. She IS a super star!

For now I am in Ronald McDonald house which is lovely (and paid for by the government!) but in five days, depending on what goes on with other families in the house, I may need to find other accommodation. Please pray that I will either be able to stay here. I have a friend who lives close by but Ronald McDonald house does provide me with a breast pump and it is directly accross from the hospital. Plus it has a fantastic playroom for my children to use when they visit me.

I held my husband and children last night. I took them all in to see Kaylee in dribs and drabs. They each sat in the arm chair while I held her out to them to be touched, hugged and kissed with hardly any tubes or wires. Our time together last night was late, rushed and far too short but thanks to the generosity of friends willing to open their home, I got see my family today too. Spending time with the children was wonderful and painful. It reminds me of all that I am missing. It reminds me how forever changed we all are. Each time a child is added to our family, the relationships change. In adoption circles they refer to it as the family "constellation". The addition of another star to an astrological constellation causes all the other stars to change the way they relate to each other slightly due to shifts in gravitational forces. What we have been through in the last two weeks has caused all of us to change and shift. It is like there was a massive supernova in the middle of our family constellation. The children's lives have been forever changed. I am forever changed. I don't want to growl at them EVER again - but sometimes growling is my job. I am brittle in places I was previously strong and strong in places I was previously weak. The few moments I got to snatch with Jon resulted in tear stains on his shirt. I am amazed by him and his strength. We have discovered that we have been both listening to the same album since all this started. An album I downloaded for free by Josh Garrels. Track 3 has been speaking to both our hearts. It is our 11th anniversary tomorrow and it has shown to be 11 years well spent. He is my hero. We went to the Botanical Gardens and spent time together. Kaylee was constantly on all our hearts and I wished passionately that she was nestled in a sling against my chest as we wandered around and talked about the flowers. I am constantly torn.

Kaylee herself is doing well. Her breathing has been pretty good since we got here. She really only de-sats (looses oxygen saturation in her blood) when she is annoyed or upset. The typical Kaylee Princess act where she holds her breath until she gets what she wants - and frankly, at this point, I do whatever I can to get her whatever she wants, when she wants it! She has gastro-oesophageal reflux disease (GORD) which causes her occasional discomfort (bad heartburn, occasional vomiting) but she is in a bed that is tilted up, her magic milk has been thickened so it stays in her tummy better and she is taking medication to help - the same medication that her Daddy takes actually! She is still attempting to feed and doing lots of things with her mouth. My goal is to keep her interested in doing things orally so that when it comes time for her to eat solids, she won't be reluctant after having been tube fed for all of her life. Also I want her to use her mouth often to exercise the muscles she will use for talking and experience the closeness and cuddles of breastfeeding. Any nutrition she takes in orally is an added bonus. I wish I could physically be with Kaylee constantly like I was with all my other babies but at this point it simply isn't practical so we do the best we can. Milk volume is not an issue any more with me expressing 600-700mls per day - far more than Kaylee actually drinks. We are stockpiling in the freezer!

I am exhausted tonight and I miss my babies and my husband. But I am a step closer to home, and that is something.

Is leaving on a jet plane...

2011-09-21T07:37:00.002+08:00

Flying out to Hobart this afternoon. Praise God!! Will probably head up to Launceston when Kaylee's antibiotics have finished (about two weeks). I will see my husband tonight.

Closer to home.

2011-09-20T20:55:00.002+08:00

Well here I am at the somewhat more human hour of 11pm. I am eating some delicious pasta bake which was dropped off by one of my friends I haddn't met yet. Some ladies from my homeschooling forum (http://aussiehomeschool.com/) have rallied around to make sure I stay fed on decent food and have many other comforts small and large. Sisters in the faith looking out for me even though they only know me through the words I write. I am amazed and humbled.

Today was another full day. More specialists. More people on my team. All of them delightful or witty or wise or knowledgeable or gentle or kind or (in many cases) all of the above. I am so blessed to be here with such an extraordinary staff of people. I am such a user at the moment. I meet people and it's "Hi, how are you? Nice to meet you. How can you help my baby? How can you help me help my baby?"

Miss Kaylee Grace was a gem today. She slept for a large portion of the day. She had a go at trying to latch and feed twice and I was SO proud of her. It will be a journey that takes months for her but I have great hope that our feeding relationship will be a good one, even if it does always include an NG tube. She had a good top to toe wash and a new outfit. We have discovered that a few drops of EBM on her dummy (pacifier for my American based reader - Hi Analene!! Love you, will write to you soon as I can) makes for a happy Kaylee. There were no extraordinary set backs and there were little creeps forward.

I rolled up my sleeves today. I washed my baby and changed her nappies. I settled her when I was there for grumpy moments. I picked the brains of specialists etc. I arranged to start to learn about Kaylee's feeding tube - including how to put it back in if it is pulled out. I am scared witless of some of these things, but I am of the opinion that courage is when you are scared witless and you do it anyway. And after watching what Kaylee had gone through, what can I do but be courageous for her? I also went out to lunch with my lovely big brother. It felt selfish to leave the hospital without her but I know taking moments to decompress means I can be there for her when she needs me. Burning myself out trying to work the 24 hour shift, trying to do everyone else's job, would mean that in the moments that she actually needs me, I wouldn't be there for her. And that, to me, is unacceptable.

Kaylee has made the world a better place.

Because of her, when I go outside the air is sweeter. Colours are brighter. Good food tastes incredible and music is more beautiful. This has happened with the birth of each of my children however it is even stronger with Kaylee. I have a lower tolerance for some things - like wasting time, tantrums in adults who know better and ingratitude. However, I have more compassion for others, especially the mothers I see on my ward.

My food is finished and my eyes keep closing.

Here is to another good-news-day.

A full day

2011-09-19T22:42:00.002+08:00

It has been a full and busy day.

We start around 6am with breakfast, expressing and catching up with the night staff before they go. Then we plunge full on into specialists, tests, coordinating future support, learning about the various issues that Kaylee faces, having some time skin to skin, keeping in touch with Jon and support people, trying to remember to eat. I feel like I am running most of the time. I had a moment to sit out in the garden with Bek as we planned various support things and it was heaven. But then we were back into it. As it was, I missed the speech pathologist and didn't get time to give Kaylee her first bath.

It will be at least two weeks before we head back to Launceston. We will not be going home until Kaylee goes from continuous feeds to 3 hourly feeds - which she is not tolerating at the moment (silently vomits larger feeds then chokes) so we are working on a plan for that. I am starting to learn about tube feeding as Kaylee will probably still be tube fed at home. I take moments to write to my children and put photos up on facebook so they can see what is happening. I express and express and express.

Then in the evening, when the elevator crush has thinned and the bustle of the ward has slowed I take my daughter out for a cuddle. She starts rooting around looking for a feed. I offer her the breast and she spent TWENTY MINUTES having a go at latching savouring drops of magic milk and snuggling. I asked my nurse if I could take some now obsolete sticky stuff off her face and did. I changed her nappy and then we removed the drip in her foot. I took photo after photo. I wrapped her all by myself. I put her booties on. I felt like a "normal" Mum for a moment.

So at 1am I am updating you because although the day was full with many things, those are the moments that make it worth while. Gold with diamonds

2011-09-18T19:57:00.003+08:00

People keep telling me I'm strong. I am not. Where some people may use their faith as a crutch mine at the moment is being used more as a wheel chair - no, stretcher.

I have cried oceans of tears. I have screamed in frustration. I have crumbled in surrender. I have wanted to vomit because my body was rejecting what was going on around me so forcefully. When I got on the plane to fly over here there was a little screen in front of me showing the news. There was something on there about the 9-11 memorial parades being cancelled. I stared in disbelief. How could anyone care about that? In the scheme of things what did it matter? My baby is sick, get out of my face. I have been angry beyond belief. Angry at what my baby has suffered. Angry at what it takes away from the other children. Angry at what Jon and I have had to go through. Angry and resentful of the separation and what I am missing at home. Andrew will likely have more teeth and may even be walking before I see him next. I have felt lost, like nobody's mother. In a limbo of motherhood. I can't tend my babies at home, I am so limited with what I can do with this one there are moments when I feel like a musical moo cow - singing and dispensing milk - with no reassurance she can hear me singing. With all my other babies they would cry and I would feed them. The crying would stop and I would settle them into my arms. There would be moments where we would sit and gaze at each other, learning each other's face. With Kaylee I deliver my milk downstairs then it is shipped up to her in measured doses which are then drip fed through her NG tube. If she is upset, I can re-wrap her and change her nappy and pat her, but there is no peaceful moment post-latch where all you can hear is contented gulping and most of the time I only pick her up two or three times a day at the most. Most of the time, there is no warm weight in my arms. Kaylee's eyes have only opened a few times and never focused on anything, not even a bit. While I try not to borrow worry from tomorrow, the fears of today are enough to scare the snot out of me. What we face is epic in nature and I do not feel strong. If I praise, it is something that breaks from within me - a sacrifice of praise. This makes me HATE sin with the fire of ten thousand suns. I have held other mothers around me as they shook with the same fear I feel - and I am not a hugger. I have stood shaking in helpless disbelief as my baby struggled for breath or underwent yet another procedure. I have sagged in grief and defeat over small things - like not being able to put clothes and booties on my baby because of all the things she is hooked up to. I grieve strongly the loss of our dreams. We had so looked forward to bringing this baby home and introducing her to our family and our community. While this will still happen, it will likely involve delay, questions about her health and her development (many of which we will not have the answers to) and fear - for someone sneezing on your baby is a bad thing but someone sneezing on your baby who has an unrepaired heart defect...

So I am not strong.

I am carried.

Nothing Gold Can Stay

2011-09-18T13:03:00.005+08:00

Yesterday was Gold. The whole day was Gold. We rested and took a deep breath. The magic milk flowed. I spoke to nobody new and no choices were demanded of me. I had long draughts of solitude - balm to my introverted spirit. Simply getting on the lift and not having to fight a crush made the day feel like it had more oxygen. Even so, I would not call it easy. You develop a kind of bond with a mother who you share this experience with. Sitting together, breast bared, in the expressing room. You are thrown into an intimacy of spirit with people whose name you can't quite remember but whose child's diagnosis you are fully conversant with due to those moments of late night expressing. So to shout for joy in the hallway seems so wrong when down the hall an alarm is going off or behind the curtain is a quiet sobbing or the red rimmed, downcast eyes silently beg you not to ask "how's he going today?". And every time she sighs, I hold my breath. Because in this world, nothing Gold can stay. Even if her condition continues to improve, tomorrow I will be plunged again into learning cardio care plans, trying to teach my girl to drink direct, learning how to hold her better, planning for the next step, working out how to deal with her needs once we are home, creating contacts and support back in Tassie. This is a marathon and yesterday was a moment when the sun was shining, the birds were singing and I could enjoy the run. Tomorrow my breath may come in fits and starts, my legs may burn and my eyes may sting where the sweat drips down.

Because in this world, nothing Gold can stay.

Nothing Gold Can Stay
Robert Frost
Nature's first green is gold,
Her hardest hue to hold.
Her early leaf's a flower;
But only so an hour.
Then leaf subsides to leaf.
So Eden sank to grief,
So dawn goes down to day.
Nothing gold can stay.

Thank you friends for loving me like Jesus

a gold morning

2011-09-17T11:10:00.004+08:00

Dear friends,

I found something I didn't know existed....a quiet morning on cardio. I slept well last night only waking to express and occasionally panic and look at my clock or start at imaginary alarms! I expressed even more milk than previously overnight. In the morning I was determined to just chill with my girl. After a chat I put my feet up and cruised online, sorting out the support pages on here, researching, facebooking. Just cruising. Not one alarm went off on Kaylee's monitors. I expressed and had a nap. I am expressing once again before I go back in. It was bliss.

I do not expect this afternoon to be as easy. We will be cleaning up where her central line went in now it has had a chance to clot. Past experience has shown that when she gets tired out she forgets to breathe, so we will see how her afternoon goes.

But that morning, it was gold.

Central line day

2011-09-16T17:45:00.002+08:00

Dear friends,

I am sitting on my bed eating a bowl of soup (thanks Anna) after along morning.

Yesterday Kaylee's central line placement got pushed back until this morning. I met with the anaesthesiologist at around 7am. Kaylee had a good night with a short period when she was unhappy with the world in the early morning but had settled again. The anaesthesiologist explained everything to me. He told me to settle in for a long day as he wasn't sure when they would have time, theatre space etc. I told him to take his time. If we have to wait then obviously we are not the most urgent case in the hospital and that is a good thing! I met with the day nurse then I went and expressed and took all my stockpiled milk down to the formula room as Kaylee was fasting. I came back up and prepared to sit and have a long cuddle and read to her when all of a sudden it was show time. So much for our long wait. We took her downstairs to get her ready. While we were standing around waiting Aaron, Kaylee's nurse, offered me a cuddle. I was about to say "Thanks, but we only just met and I'm not much of a hugger" when I realised he meant Kaylee. So I held her and sang to her and kissed her and called her all her special names (Tulip, Princess Hairy Legs, Kaylee Grace) and passed her over. I went upstairs opened my Bible to Matthew 6 - I know you shouldn't mess with scripture but I did change it from "do not worry for tomorrow" to "do not worry for five minutes from now" because tomorrow seems a long way away. I thought about Abraham offering Issacc. I thought about how Kaylee is God's baby. And I was OK. In some sort of surreal place, I was OK. I wrote my kids their emails and while there was a part of me that was wondering if this procedure would mean that I would have to tell them their sister wasn't coming home after all, I had a peace. I kept dozing off so I went back to the ward and sat in my chair with my feet up. I flipped open my netbook and set a slideshow of my kids going while I listened to music and laughed at the funny photos of my kids.

Then Aaron came in and told me that I could go down and see her in recovery. I ordered stand down and thanksgiving of my prayer warriors and went to check on my girl. She was highly annoyed and had blood smeared over her (Please Jesus, can I have a day when I don't see my daughter's blood?) and being highly annoyed messes with her breathing and heart rate so although it was fantastic to see her alive again, my head started to pound as I tried to settle her and the child in the bed next to us made a high pitched, keening wail and those bloody alarms kept going off. And I once again had to walk away.

I expressed and tidied up and gathered my bits and pieces knowing I would need to go and have some lunch and a rest. I went down stairs to see Kaylee resting quietly, the keening wail gone and no alarms going off. I kissed my Tulip then took her Magic Milk to be stored (we have a bit of a stockpile now after Kaylee fasting for procedures) and went up to my room to eat and decompress. I still have a voice shouting at me to RUN back to Kaylee's side. To not desert my daughter. But I need to decompress.

Cardio ward is not an easy place to sit. Alarms go off constantly and it is a concerted effort NOT to jump up and check Kaylee every time one goes off, even when it is down the hall. Us mothers wander around clutching our breast pump shields and mobile phones with a white fingered grip. If another parent meets your eyes you can smile and talk ("we got out of ICU today, yay, the comfy chairs!", "I spilt 30 ml of EBM last week. I cried for an hour"). If they don't meet your eyes or if you hear their child crying behind a closed curtain you leave them alone and whisper a prayer, feeling guilty that the prayer is as much thanksgiving that it is not your child.....this time.

Kaylee is stable, her (cardio) problems are simple compared to many of the children on this ward but she is 8 days old and has multiple issues and I have learned you cannot assume that because she is stable and happy now, the same can be said for five minutes time. Schooling myself to walk away, let others do for me, keep it together for her has been a huge learning curve. I think sometimes that it can't be as bad as it feels and try and step back to gain perspective. Then I quickly stop because it is actually worse than it feels.

I am being carried, thanks largely to your prayers.

Thankyou.

Dearest friends

2011-09-16T17:43:00.001+08:00

{written yesterday}

How’s the baby I hear you ask?

She is doing well. Her breathing was a bit slow at times this morning but nothing bad or dangerous. She still has nasal prongs but it is just puffing a bit of air into her nose to remind her to keep breathing. She had another Lumbar Puncture today which isn’t nice, but the outcome will determine how long she is on this massive dose of antibiotics. The central line got put back until tomorrow and I will be meeting with the anaesthetist at 7:30am. She will fast from about 4am which she hates. She quite likes getting her food constantly drip fed to her through the tube that goes through her nose into her belly. She prefers that to 3 hourly feeds that were being put through the tube. It got put back to drip feeding because a big feed was too much load on her heart and lungs and made her sleepy…and forgetful when it comes to breathing! I am getting more involved in her day-to-day care which is scary but good.

How am I?

A friend took me out shopping and for lunch today. In spite of the nail marks on the footpath where I had to be dragged out, it did me good. She caught me on a downward swing and it was a toss up which I needed more – shopping or a sleep – but after I came back, expressed and napped, felt so much better and expressed 100ml. I saw a quote weeks ago that I thought was funny at the time but it scares the crappers out of me now. It was “Whoever said ‘don’t cry over spilt milk’ never pumped 60ml then accidentally dumped it.” I think of it every time I am putting the lid on what I express! I live to express. There are three things I can do, I can touch, I can sing and talk and I can express. Woe betide ANYONE who messes with those. I was talking to another cardiac Mama and she agrees. We walk around with these stunned looks on our faces clutching our breast shields. The fact that I have peace with all this should not in any way be taken to mean I am OK with any of it. I AM NOT. There are not swear words invented to describe how awful and unfair this is. How unfair to Kaylee who has to endure all this. How unfair to me, to Jon and to the other children. NONE of this is OK. It makes me hate Sin all the more. Today was better than yesterday. I didn’t lock myself out of my room once. And right this minute the ground beneath my feet seems steady and solid. We won’t ask about five minutes ago, or how it will be in five minutes to come. To paraphrase a scripture – “Do not worry about what will happen in [five minutes time], [five minutes time] will take care of itself. Right now has enough worries” – I may have changed that one a little.
I need to go and express, cuddle my girl and read her a bedtime story;
I am a phoenix. I am just at the flaming and ashes stage. I will rise from this and I expect to burn and rise a thousand times in this adventure with my girl. I am determined to rise more beautiful each time – I will not waste this pain.

Thank you for your prayers.

A Day

2011-09-15T05:14:00.002+08:00

This is a sample of a day here. I write this not for sympathy or to throw a pity party but to help people understand what a mother in my situation faces in a day so that they will show the same love and compassion that you, my friends, have shown me.

6am - alarm goes off and I rejoice that I had something actually resembling sleep. I get up and force myself not to run pyjama clad through the hospital to Kaylee's side. I take my iron supplement, shower and tidy my room a bit quickly, knowing that I will have to move rooms today because Kaylee is six days old. I hope that my new room will have a working heater, hot water that takes less than ten minutes to come through and no hele pad outside the window. When I am all dressed I fill my bag with fruit and nuts, get my pumping gear and put it in the bag, add my journal/notebook/brain on paper, heat pack for helping let down when I am pumping, hook drink bottle on belt. I also grab my bag with my netbook and camera inside. I walk to the lifts and travel to the 7th floor. I force myself to go to the expressing room first where I sit for an hour expressing and reading my Bible and listening to uplifting music and worshiping. When I am finished I carefully wash and put away all my expressing gear, label my milk, gather my bits and pieces THEN I run to Kaylee's side. I check how she has gone in the night, chat to her a bit and touch and stroke her then sit down with my netbook to write e-mails to the other children.

sometime after 8am - My care manager Ali comes on duty and I talk through what plans are for the day. She is also a lactation consultant so I run through what I am doing with expressing and check for any tips she has to add. We get Kaylee out for some skin-to-skin contact. I sit with her and read her the Psalms that meant so much to me during my worship time.

At 9am I reluctantly put my baby back but feel awfully happy that I was able to stand up and put her down all by myself without getting tangled. They are about to take bloods (a heel prick style thing, Kaylee's heels are coverd in nicks due to repeated heel pricks for various tests) and while I feel like wrestling the person taking bloods to the floor and pumelling her to a pulp and screaming my frustration I turn and walk away to pump again, knowing that my job is to feed my baby. While I am pumping I talk on the phone to various support people about things that need to be done. I find out that a volunteer will be ready to help me change rooms when I am done. By the time I finish expressing, clean everything and put my milk away it is past ten. I find out that to get my key I need to go to the Ronald MacDonald house on the next block but thankfully the room will be within the hospital - praise God! I didn't fancy walking the streets on my own at 2am to bring Kaylee's milk to the ward. I get the key and chat a bit to the housing coordinator about our situation and how to deal with the key etc. Then I walk back to my old room and start packing up. The volunteer is a very nice lady who is probably in her 70's. She pushes a trolley full of stuff for me and I carry two bags but we still have to take another trip to get me all moved in. I am awfully thankful for my Pit Chief organising the help as I don't really have the brain power to find my room on my own right now!

11am I meet with the dietician about Kaylee. We discuss formula top up, types of formula, calorie supplementations and what we can do to help Kaylee grow strong quickly and I vow inwardly to work harder at getting enough milk for Kaylee so we only have to calorie supplement. I also talk to an occupational therepist about positioning Kaylee to best help her little body. We talk about preventing SIDS when Kaylee gets home and how I should best take care of her to prevent issues developing. We also talk about support for Kaylee's needs as she gets older (it is a relief to talk about her getting older) and about things like speech therepists, early intervention, timeline for diagnosis etc.

11:30 and I am late to express. I go and express and check in with support people, including my midwife back in Tassie, and call Jon to let him know our girl is going well.

12:30 I take Kaylee her milk. I stand and talk to her for a little and talk to the nurse. I say to the nurse that it feels like I am always walking away from Kaylee's side today. I go over to my room (ride the blue lifts to floor one, walk to the silver lifts, ride up to level 5, the lifts and hallways are often so full they feel like peek hour traffic.) and lay down to keep my feet from swelling anymore and eat something for lunch as I talk to a friend who may be taking me shopping for some clothes tomorrow.

1:30 back on the cardio ward expressing. I fall asleep expressing and am a little annoyed at the milk spilt on my top but rejoice that my body has moved on from "something resembling sleep" to ACTUAL sleep. When I am all cleaned up and Kaylee's milk is delivered I know I should go to bed but I can't bear to walk away again. Each step is like waxing my heart or one of those dog collars with the electric pulse going off. The nurse gives me an excuse to stay by telling me the lactation consultant will be in soon. I get out my netbook to finish writing to the other children and I fall asleep in the chair next to Kaylee's bed. When I wake up I find out the lactation consultant was on the wards but realise that I NEED to go to bed. I tell Kaylee's nurse then turn to walk away from my baby again.

3pm I lay down on my bed and set the timer for an hour and sleep blissfully!

4pm I wake up and go as fast as I can to express.

5pm I go in to take Kaylee's milk in to her. They have just finished attempting to put the long line in. I help clean the blood off Kaylee and talk to the doctor about what our next step is now that the long line didn't work. Kaylee is bundled into my arms and she is exhausted. I hold her and sing to her and comfort her as she sleeps in my arms. I am glad when she twitches in annoyance when the nurse has to change a sensor. I am relieved she still has enough energy and spunk to twitch. The nurse makes up a new bed, throwing the blood stained sheets in the wash. I wonder how much more blood is left in my baby.

I again force myself to put her down. I need to express again.

I meet the Mum of the baby in the next bed and her little daughter in the expressing room. It turns out that she is from Tassie too. They have been here for two months and will be here for at least another two.

I call Jon and let him know the plan about the central line and generally check in with him.

I go to McDonalds for tea and update my Blog and such. I talk to my big brother on the phone while I am doing that. I also start to organise some probiotic support to get lots of good bugs into me (and hopefully my milk) and treat Kaylee's nappy rash. I can't fix most of Kaylee's problems, but maybe I can do something about this one. I go up to my room and discover I have lost my key. I decide it is more important to express first so I head back. While I am expressing I talk to my other kids on the phone about their day and kiss them all goodnight. I also talk to Jon. When I have delivered Kaylee's milk I search for my key in both Kaylee's room and the expressing room. I go down and check that I haddn't dropped my key while I was eating tea and send three of my kid's e-mails (I talk to them at night and they read e-mails in the morning) but have to stop because my lap top is going flat. I realise my phone is too.
I head up to my room and use the phone outside the accomodation to ring around and find someone to let me in. I am trying to work out the logistics of how to deal with the lack of key and overnight expressing while I talk to Jon and I walk in to my room to find my key on my bag, thank you Lord! I continue talking to Jon and we briefly cover how we are going to prepare the kids for the fact that Kaylee will have special needs, what that means for our family, support available etc. The conversation is all too short but I know I have to sleep. We miss sleeping next to each other so much. Hanging up is hard. I unpack my stuff and tidy the bedroom. I can't find my phone charger. I call through to where my old room was and ask them to check for me. While I am waiting for them to call back I call Bek and let her know my phone may well be off overnight and tell her what my extention number is - it is midnight by this stage. They call back to say my charger and camera are at the ward clark's desk, I can get them in the morning.

I eat some porridge and take all my supplements to help my milk and munch on fruit from my fruit basket. I call the ward to let them know I found my key and see how Kaylee is doing. I thank Nadia for taking such good care of my baby and she replies that she is "Such a doll!" I tell her I will see her sometime before sunrise with some milk and she urges me to get some rest. I go and have a shower. After I have a shower I realise the key I had hung on the door handle so I wouldn't forget it is still hanging on the door handle. On the inside of the door. I call security to let me in again, standing in my t-shirt, underwear and towel. I promise them it will be the last time. I realise that I can't turn my phone off to conserve battery like I had planned, I need the alarm. I set the alarm for 4am so I can go and express again and finally lay down to sleep. It is 1am. I pray that I will have the energy to write two more emails before my children wake up.

"I lift my eyes unto the hills, where does my help come from? My help comes from the Lord, the maker of Heaven and earth." Psalm 121:1

Though He slay me, I will trust Him.

Thank you all so much for your words of encouragement, help, glimpses of normal (I love you Analene!) I am blessed beyond words. Here's to not having to change rooms and not locking myself out today.

An update

2011-09-14T17:59:00.002+08:00

Dear friends,

I want to testify of God's love and compassion.

Yesterday was a day of ups and downs.

I held my baby skin to skin and she ATTEMPTED TO LATCH ON. Tears flowed people, tears flowed. I had almost got adjusted to the idea that we may never have a breastfeeding relationship that doesn't involve a pump - which is kind of like having a friendship that is only over e-mail, beautiful but different! This is GOOD news. And at this point it was simply more good news on top of the good news we had been getting since we got here. I think a part of my brain had fooled itself that given time I would walk into the room and she'd be completely better - "normal".

Then Kaylee's breathing went backwards. They did some tests for this including a lumbar puncture among other invasive proceedures. The day before yesterday was a HARD day adjusting to a new ward and sleep still alluded me so to walk in and be told this more than knocked the wind out of my sails. Especially as I was told this by my favourite PICU doctor, who also told me that Kaylee may end up back in PICU.

I want to hold my daughter through every painful proceedure and sing to her and the fact that I can't just kills me. I have been trying to be there for every moment that she stops breathing, every moment that she experiences pain, every moment that she is unsettled and at the moments she is peacefully resting, I want to sit in the chair next to her an watch her. But at this, I walked away. My legs were swollen to twice their size, I had run out of fresh underwear, I was shaking and crying, I had not slept more than ten hours since Kaylee was born total - and that was restless and broken, hardly sleep really. I was at my limit.

And this is where I testify of God's love.

I walked downstairs to where my Pit Crew Capitan was waiting - with a Bible and some clothes. I cried long and hard on her shoulder as she prayed over me. The Holy Spirit comforted me with scripture - Psalm 121. I prayed that the angels would sing over Kaylee seeing a I could not. The Holy Spirit reminded me of Zephaniah 3:14-20 - read it people it's good stuff. I cried and I talked, I talked and I cried. I drank coffee. I came to a realisation. Standing next to my daughter trying to feel as hurting as she does, DOES NOT HELP HER. It kills me to do it but I have to trust my medical team of fantastic doctors and nurses and WALK AWAY. This is new to me. I am ALWAYS the one to comfort my newborns, I change 95% of the nappies, I had to laugh when a friend confessed to me today that she is a control freak because she is one of my subjects - for I am the QUEEN of control freaks. I used to be involved in every moment of my children's lives and right now I am a completely different kind of mother. Changed overnight. It is strange getting my bearings in this new world and I know that I need to find my role and my groove soon so I don't burn out.

I went upstairs and changed my clothes then went down to Kaylee's room where she had settled quickly after the tests. Sitting next to her was the biggest fruit basket I have ever seen. Seriously people, you are TOO GOOD TO ME. The person who sent this too me I have never met in person, she is a fellow homeschooling Mum on an internet forum. She only knows me through the words I write yet God used her to give me exactly what I needed at the time.

So I have made a plan.

I am going to do the things I can do the best way I can.

I will hold Kaylee, I will sing to Kaylee, I will express milk 2-3 hourly through the day and 3-4 hourly through the night, I will read to Kaylee, I will love on Kaylee with all my heart.

And sometimes I will walk away.

I will eat, I will sleep, I will write.

I will cry on the shoulders of my angels with skin on.

I will breathe fresh air.

I will go against every fibre of my being to accept graciously the extraordinary
outpouring of generosity I am facing from friends, family and all my "Imaginary Friends" out there in the internet world.

I will not torture myself as I walk away with thoughts of "what if my daughter dies while I am laughing with a friend" because I know I have loved her best I can and will continue to love her best I can. And I will put on my own oxygen mask so I can be there for her.

So I slept a bit and expressed more than twice as much milk afterwards.

I munched a sweet pear and wrote.

I cry, I laugh, I talk to my other kids, I taste chocolate.

And I sit by Kaylee's bed and be her Mum.

Because that is all I can do.

And I will do it well

Thanks to God and thanks to you.

Later that night I spoke to my children on the phone and as I put down the phone was overwhelmed with gut wrenching grief.....and my pit crew chief knocked on the door, held me, gave me the things I had asked for, prayed over me, talked to me, laughed with me.

God is good.

I am like a tomato plant. Without His staking me up, I would be a jumbled mess on the
ground covered in rotten fruit. But He is holding me up.

Thankyou Lord.

Today I was better after something resembling sleep. I moved rooms but I had help to
do so. I had support on the end of my phone. I was better to myself and therefore was more able to be there for Kaylee. I fell asleep while expressing milk (I worked out I spend about nine hours a day doing this at the moment, trying to get enough for my tiny girl to help her grow into a not-so-tiny girl) and I fell asleep in the chair by her bed. I had a real, healing, hour long sleep and expressed more milk.

Sheila – my favourite PICU Dr. – came back to put a long line into Kaylee so we can give her some specific medicine over a longer period (test results for Meningitis and a culture growth came back inconclusive, so we need to treat for them just in case). I turned up just as her job was finished and did my job – cuddling and singing to my completely exhausted baby whose mouth fell open as she slept, causing me to realise she has my lips.

Unfortunately, they didn’t get a long line in. Her little blood vessals are just SO small. So tomorrow they will be taking her to surgery to put in a central line. I am going to do my job, make milk, cuddle, read, talk, sing and pray like crazy. I am going to ignore the bleeps and squeeks of the machines and let the medical staff do their thing without trying to control, direct or even understand their every movement.

Please pray.

Pray that the doctors will get a line in quickly and easily tomorrow.

Pray that the cardio team will have wisdom and discernment as they formulate a plan
for the care of Kaylee’s little, holey heart.

Pray that the nappy rash on her bottom (thrushy, thanks to the uber doses of antibiotics) will be cured.

Pray that my little girl keeps on breathing.

Give thanks for a day where Kaylee did not stop breathing once today (she is on Maximum dose caffeine, I see many a moccha in my girl’s future!)

Give thanks for an amazing support network that has sprung into action for me. My Pit Crew Chief literally gave me the shirt off her back last night – a very comfortable one with breastfeeding access.

Give thanks for McDonalds. The “food” sucks but the free WiFi is fantastic and I can access it 24 hours just by sitting outside the restaurant in the hospital

Give thanks for good friends visiting and offering help to Jon back in Tasmania.

Give thanks for mobile phones. I hate them, but I love that I am contactable at all times by the ward, my husband, my friends and the comments you leave on this blog. I can also call my support team.

Give thanks for His Word. Psalms 30-35 were for me this morning as I expressed.

Pray that I keep making super milk and make more of it for my girl.

Give thanks for the testimony that my little girl will have.

“Let her sleep, for when she wakes she will move mountains”- Midsummer Night’s Dream

Plan of action

2011-09-13T06:09:00.002+08:00

As yet I am still totally unaware of how long I will be in Melbourne but suspect it is more like days than weeks - YAY!!

However, I do want to take advantage of all you lovely people who are offering me help. My problem is I would rather cuddle my baby and lactate than trawl through the offers of increadable and awesome help to find someone who can bring me what I need.

ENTER BEK.

Bek is my pit crew chief in Melbourne - my Doc Hudson for the Cars fans out there.

If I want/need something I will call Bek. Bek will then find someone who can change my oil, fill my tank or give me new tires while I sit and bliss out with my baby. Isn't that FANTASTIC?!?!? I am amazingly blessed. Bek has been my friend for well over a decade and it is showing up as a decade well spent.

SO

All you melbournites who have offered help. Bek's email is: shaneandbekah(at)hotmail(dot)com - obviously change the (at) to @ and the (dot) to .

Currently Bek is about to bring me a Bible and some fresh clothes. Specific needs/wants/whims include raspberry leaf tea (just plain please, not mixed with other herbs) an Avent dummy, brewer's yeast, flax oil, a bag for me to stash stuff in to take home on the plane when I go, nuts to munch on and a story book for me to read to my beautiful girl.

I am a user at the moment people, all you're likely to get back is a smile and a wave but know thanks is coming from the bottom of my heart. It is just that my total energy, attention and affection is on my little girl (who I just cuddled for over an hour *bliss*), my husband and my other kids.

God bless you all!

I want to testify of God's Love

2011-09-13T01:06:00.002+08:00

I have been finding it hard to sleep.

Yesterday was LONG and HARD. It was good to get out of PICU and into Cardio but I had to learn and absorb a LOT and had no time for any sleep whatsoever. Not great when trying to establish a milk supply. By the time I got to bed I was crying with exhaustion and shaking from head to foot but it still took 3/4 hour to get to sleep. I awoke at 2am and decided to express. I found my favourite spot and set up, with my netbook open so I could read the e-mails the children sent to me - a treat I had not had time for as yet. While I was reading and expressing I was flooded with a warm love for them. I expressed 80ml. The previous milking session had only given 35 ml. The oxytocin produced in my body by feeling their love has made milk for our baby and helped me relax.

Be anxious in nothing, but in everything give thanks.

What a good God to give me such an amazing family.

Praise God.

About today

2011-09-12T20:39:00.002+08:00

I will get back to the story of how we got here later but tonight I need to share quickly about today and go to bed.

Prayers.

Requests:

Please ask that I get sleep - I am not finding that one easy. Hopefully now the adrenaline is wearing off and a few stresses are off/changed in nature I will start to sleep but I know I need to sleep which makes me stressed about sleeping and it all turns into a self-perpetuating mess!

Please ask that Kaylee continue to do well.

Please pray that the angels will sing "Jesus Loves Me" and "When He Cometh" to her when she is sad and I am not there. These are her songs and it kills me that I can't sing them to her each and every time she is upset.

The Cardio team are meeting tomorrow to discuss her case and form a care plan. Please pray that they have wisdom, discernment and compassion.

The genetics people will be discussing a diagnosis with me tomorrow. Please pray that I will be able to wrap my head around it.

Thanksgiving:

We are in the cardio ward now and I finally have a comfortable chair next to her bed. One that I can fold out and sleep on if I need to. Thankyou Lord.

There is a plan of action with feeding Kaylee so I know how many mls I need to provide in order to prevent the need for sup. feeding. This gives me a sense of direction and something to organise, chart and move toward. I needed that.

Friends. The messages you leave here on this blog reach my phone instantly. I can't reply simply because most of the time I have no time! But they bring me great comfort. Rest assured those offers of practical help have been taken note off along with contact details etc. and when I have a moment in this whirlwind I will process that and see what people can do.

She opened her eyes and looked right at me. For the first time. My daughter has eyes and they focus (kind of) PRAISE GOD! I get awfully excited about each bit that I find that works.

Thankyou everyone. I am overwhelmed with love and the Goodness of Our Compassionate and Loving God. Anything good in me right now is because He is polishing me as His jewel - and a jewel is just a dead rock until the light hits it. His light is what you see if you see anything good in me right now. To Him be the Glory.

And Thank-you Lord for the Beautiful Kaylee Guest AKA Tulip AKA Princess Hairy Legs