This time last year: Royal Children's Hospital

Yesterday marked one year since the first time we walked through the doors of the Royal Children's Hospital, the place that we would spend so much time at during Thomasina's short 7 month life.

Before her birth, the hope was that her little misconfigured heart would be able to compensate for its strange construction to the extent that she would not need to undergo her first surgery until about 3 months.  In those final weeks of pregnancy the scans held hope that this would be the case and we prayed this would be the case.  In the hours after her birth, her oxygen saturation levels began to drop and over the next 24 hours it was confirmed she would need that first surgery to insert a shunt immediately.

On Sunday 11th March Thomasina made her first trip in the big wide world - in a Newborn Ambulance from Monash to Parkville - I liked to see it as her moving from my university world to Pete's.

The hours leading up to that move were tough.  You know all those stories of poor mother's with healthy babies having woeful days as their milk comes in: well imagine having that day sitting in an open special care baby unit with 8 babies and their one-on-one nursing care as a Chinese student couple say their long goodbyes to a baby born at what must have been no more than 20 weeks.  Imagine having that as they ready your baby for a trip across town for life saving surgery.  Imagine that as you sit through the obligatory tension of handover between 2 separate health providers, each seeming to want to prove they know best.

Sometimes I think that despite all that has happened, that morning was the saddest I've been.

 


The baby transport team were well organised though, asking many times if we had been to the Royal Children's before, explaining how to get to Koala ward where we would meet up again with this little person who had only been in our lives for just over 72 hours.  As I clutched the information brochure they gave me I reassured them that yes I had been to RCH before - deliberately not mentioning that it was in hard hat and hi-vis vest when it was a construction site.

I will never forget the feeling as we walked into RCH for the very first time, the first time the doors from the carpark opened onto the main street on a quite Sunday afternoon.  Immediately a sense of calm came over us, a feeling experienced everytime we entered that building.

A feeling I long for now.

Many who have been through the experience of a sick one at RCH, or know someone who has, speak of the medical and nursing care - you know world leaders, so talented, so caring and so on.  While this is true and was true for Thommy, it is the building that I treasure so much.

I am a bit of design freak - I love the pleasure given by good design like my Georg Jensen pieces, my Fink jug.  Despite having spent years in meetings  thinking about hospital design this time last year was the first time I had experienced how much difference a good building can make to a person at the lowest point of their life.

The natural light flooding so many spaces.

The gardens and parkland surrounding the hospital, being able to laze on the grass in autumnal sunshine.

The peace and calm that came from a policy that banned notices or signs being pinned on walls - removing that visual noise made for such calm

The beautiful family lounges on each floor that were so culturally important to the families of middle eastern origin who would gather their bringing the most amazing smelling food in beautiful containers.

The wonderful lighting on the wards that changed over the course of the day and felt more like a department store than a hospital.

Those wonderful green couches, so comfortable for the long days and nights

The cleverness of windows to parkland in the theatre suite, so although you are leaving your child for 5 hours on the operating table you can see there is still a day happening outside.

The wonderful playground outside where brothers can let off steam during the long weekends spent hanging around the hospital, the playground where I felt no need to be a helicopter parent and they got to climb more than they ever have before - afterall ED was directly below it.

The cafes with good coffee and the staff who got to know your order within a week.

And of course the wonderful Captains and the Starlight Room

It is true that we will be forever grateful to the staff of RCH for all they did to give us our beautiful Thomasina who was so well for so long.  From the wonderful Yves and his quietly stated ways, the many, many anaesthetists Thommy saw, all with their beautiful watches.  The nurses in their jellybean coloured scrubs, the cleaners who you got to know over time, the sweet orderlies who would come to accompany you to surgery.

I'm switched on enough to recognise that some of my love for that place now is about what it symbolises - a place where we spent so much time with Thomasina, a place where we felt so safe, where we had such hope.

I know that as the tears flow each time I drive down Flemington Road it is not all about missing the building, just like how sometimes know I will put Microshield on my hands as that smell reminds me of those times

This time last year I didn't realise how much a place could come to mean.

In writing this post, I went to look up some statistics from RCH.  I was stopped in my tracks when I came across this video - you will recognise some people in it.  I couldn't look any further for the statistics....

Royal Children's Hospital video

10 things an aunt didn't know this time last year

Following on from my recollection of the things learnt in the past 12 months Thomasina's wonderful aunt who has been such an amazing support to us constructed her own list, so special to read about Thommy's impact on Flis, a journey where her professional life had to merge all to much with her personal. Thank you Felicity Bridget Thomasina for all you did and these wonderful memories




1. It doesn't matter what your role is, in the eyes of a 3 & 7 year old you are nothing compared to Captain Starlight.

2. That it's impossible to work out a good answer to the question "how is your sister & her family doing?" Any response seems glib.

3. How impossible it is to put into words my admiration for parents who managed to let their daughter experience so much of life and made sure her brothers were part of every step of the journey. Understandably it isn't something all parents of a seriously ill child manage to achieve but, somehow, Ree & Pete did.

4. How amazing so many people are. How crap some people are.

5. How much I loathe descriptions along the lines of "they battled illness" and "their extraordinary will to live". Don't imply that some seriously ill people could have lived if they had more willpower or a different attitude. It's simply not true.

6. That shopping for clothes for little girls is one of the best things in the world.

7. That creating imaginary back stories for the many people you meet in hospital keeps you amused for hours.

8. That a phone ringing and three words "Thomasina has died" can still play on an endless loop in your mind.

9. That the most sensitive people, even during the hardest of moments, would be two 3 & 7 year old boys. Time and time again knowing the right thing to say and the perfect gesture to make.

10. That in 7 months a person can positively change your life, the certainty you have that they will always be a part of you and that you can miss them so much it literally hurts.

Hear me roar?

For over 25 years I have called myself a feminist.....and been proud to do so.

My early days of feminism were part of a teenager finding her way in the world, my mind filling with Sylvia Plath, Germaine Greer and others.  I had many an argument in the search for equality, in a school where the ultimate prize was being drafted to an afl club.

I went to law school whe the number of male and female students was almost equal but still the male students dominated lectures and tutes  I lived in college and loved it, but college life was dominated by boys activities, the female students often objectified and vilified.  The achievements of female students at college often flew under the radar.

I have worked for nearly 20 years in the still male dominated industry of law.  The females of those equal number of law students have not continued in the practise of law.  Looking round, I see few of my female university colleagues.  Most have departed the law, often for roles more comparable with raising a family.  I still see less women judges and silks.  I am one of only 9% of partners I law firms in Victoria who are female.

I have had 3 babies without any decent paid maternity leave, I have juggled young babies, a business, Childcare, being a lawyer.

My daughter got to live her whole life only knowing her country having a female Prime Minister but I see a nation that is challenged by having a female Prime Minister, many seeing no shame in the most awful treatment of her.

I live in a town that still has a male only members club.  I, despite my own efforts, live in a town that still does not have true options available to women.

Everyday I deal with clients who are the victims of physical, verbal, economic violence.  I work with women who are severely economically disadvantaged, career experience and options, savings and superannuation effected by family duties and relationships.

I am still a feminist and I still have a lot of work to do......


Happy International Women's Day

10 things I didn't know this time last year

1. Children really believe Captain starlight is real and leaves the starlight room in a rocket each night

2. How to change the ranges on a oxygen saturation monitor so it stops beeping

3. That the best spot for 3G coverage at the Royal Children's is at the front door of the Murdoch Institute

4. What drugs you can run in the same line as heparin (my lowest point was the night I corrected some poor young registrar on that)

5. Why we need a spleen

6. A colony of meerkats always has one sentinel keeping guard

7. That is your veins keep collapsing the next place to put a line in is in the skull

8. Exactly how much fun it is to shop for little girls clothes and how sad it is to only be able to do that for the shortest time

9. Sometimes it is the littlest things that people do or say that can mean the most

10. That you will never forget the taste left in your mouth after giving CPR

Project Life: Thomasina

Imagine the magic of there being a photo of you, or something around you, for every single day of your life.

An amazing story of your life, even if your life only lasted for 7 special months.

I treasure that we have that for Thomasina, even though I ache all over from the effort that has gone into collating them.

In 2010 I discovered Project Life. I am far from being a scrapbooker or a clever photographer but was drawn to the concept of trying to document the everyday in life by attempting to take at least a photo a day and to then collate them together with little notes.

In 2011, I launched into Project Life, loving trying to take a photo a day. Loving the beautiful cards and colours, the ease of slipping the photos into the pockets. Committing to take a photo a day means you quickly see the photo opportunities you would not otherwise see. Photos of the everyday. Photos of the quirky, photos of the mundane.

Without Project Life, I don't think we would have thought to take so many photos of the 6 weeks that Thomasina spent in hospital. While it is magical to have photos of a pretty baby lying in her hospital cot, the habit of taking daily photos meant we took photos of the whole hospital stay.

Photos at day 4 strapped in for the transfer from one hospital to another

Photos of the brothers waiting in the hospital room itching to get out and explore the playground

Photos of mum and dad anxiously waiting during the 5 hours of surgery

A photo capturing exactly what a 6 day year old looks like after open heart surgery

So while Project Life might have been designed thinking of the usually joyous path of a baby's first year with milestones of first smiles, teeth and crawling, it meant that while we only had Miss T with us for 7 months we have thousands of photos of that time, photos showing every part of her short life.

It has been a wild mix of love, happiness but utter heartbreak to put these photos together as Thomasina's baby book. Over 180 pages it flows, telling her story. Later I shall share more of this "baby book" but for now, I hope you treasure and photograph the everyday.

if only

When I was 7 I got one of the best presents ever.

Having bashed my little fingers away on a little plastic toy typewriter with my growing love of words and language Santa clearly saw that I needed a better way to get my words down. On Christmas morning my delight at unwrapping a big shiny real typewriter was indescribable. This was going to be the way I would become the next Enid Blyton.

Quickly I unwrapped the typewriter from its package eagerly awaiting the first hit of metal against paper.

Such precious cargo was wrapped securely and the family gathered undoing and cutting, then BING, a loud sound as mum snipped a piece of plastic. That plastic was not protection but was the tension thread which made the whole thing work. Now before me I had the present of my dreams, rendered completely inoperable. I cried so much my nose bled.

For the next 3 weeks as we waited for a typewriter repairer to come back from January holidays I spent every moment regretting that one snip.

In year 8 I spent weeks preparing for the one casual day of the year. In Year 8, what to wear on casual day is a big thing, the careful balance between looking good, having the latest trend, but not looking like you tried hard.

I thought I had hit the mark perfectly with my stretch, zipper jeans, aqua shirt and hot pink tie (yep it was the 80's). I was walking on clouds for the morning, right up until the start of lunchtime when I chomped into my tuck shop salad roll and beetroot tumbled down my front. Pretty hard to look cool on casual day with beetroot splashed all over you.

My life is full of little moments like this where you think, "what if". If only I'd looked at the instructions for unpacking the typewriter, if only I had not had a salad roll that day. If only I had been concentrating walking down those stairs, if only I had not driven that road that day, if only I had not had that last drink....

But nothing compares to the if only's that dominate my days now. Are there if only's that would have meant Thomasina would not have had a heart condition.

If only I'd taken her to the doctors that week would have they picked up something that could have saved her.

If only I had not been so tired would have I noticed some deterioration.


If only, is there some if only that could have stopped a little girl who looked like this being dead within a week?

You know there are still days I regret what I did and didn't do on that typewriter Christmas morning. Still regret that beetroot roll. But that is nothing compared to the "if only's" I am confronted with every day for the rest of my life now......

Stuff Sharers

I love to shop.  I actually think I am quite talented at it too!  I pride myself on finding new and interesting brands, cute just released things, shops hardly anyone knows about yet.

I shop because I enjoy it.  I shop because I love the thrill of the purchase - that feeling as you head home with something shiny and new in a fresh and crisp bag.

I shop as a hobby, I shop as a stress release, I shop online and I shop in person.

Now don't get me wrong, I don't shop to a ridiculous level.   I just like doing it, the way some people enjoy bush walking.

The flip side of enjoying shopping is I also love organising and neatness.  I love having everything in it's place and a place for everything.  If I go to bed at night and the house is out of control untidy, I don't sleep well.  Do a 15 minute clean up before bed and I will sleep like a log.

The combined effect of all of this is I also love decluttering.  I love moving things on when they reach the end of their useful time, so they can make way for something I need now.

This used to mean that every few weeks I would have a few bags lined up at the door to go to the local charity bin, they'd sit there for a while.  Then they'd travel around in the boot of the car for a couple of more weeks before being dropped at Vinnie's.  I'd always be a bit anxious about whether my bags of goodies were wanted there or was some older lady I would run into at mass muttering under her breath about my junk they had to send to the tip.

That was until this past week when I was introduced to the a local "stuff sharers" facebook group.

Set up by a friend about a year ago, it is decluttering gold.  With 214 members, living in about a 25km radius of central Bendigo it is a resource for sharing information and goods available "free to a good home".  It looks like nearly 400 items have been exchanged this way - the "gifted" posts a picture of the item, it shows up in the group members facebook feeds.  First person to say they want it get it.  The giver and the receiver then make collection arrangements - often the collection arrangements being I'll leave it at X nominated place at my house for you to come and collect.

With my cycle on buying and collecting I don't have a house brimming with things I have horded.  But a clean of the boys wardrobes identified some shoes that never fitted at the right time, there were toys they had outgrown, things I had purchased as gifts and never got around to posting.  It's pretty easy to take a photo on the ipad, upload the photo and see if anyone wants it.

I was hooked.  I started with a couple of things that had been hanging around for a while but it was the reaction of the community of stuff sharers that kept me going.  24 items I have posted in about a week, most of them in one Sunday afternoon clean up.  I have been blown away by the reaction.  I thought I was just dumping things out there.  I was not at all expecting how thrilled someone can be when they get something that otherwise would have been binned.  How exciting it is to hear the story behind why someone wants something.

Some of the philosophy of the stuff sharers sight was also about reducing waste and landfill.  It feels good to know things can move on and that we can be a little less disposable.

No surprise that some of this is pretty emotional.

I was fairly detached from our cot now as Raff had long graduated from it and Thomasina never made it out of a bassinet, so it was never a cot that she slept in.

However, I was still a bit concerned about getting rid of it as it was a bit of a symbol of what she never did.  I didn't want it ending up on a rubbish pile somewhere.  So to know it is now going to a new baby who will now have a beautiful cot when the parents were worried about what they could afford gives me so much joy.  It has turned what could be a very sad event into something that warms my heart.

Lots of things I have passed on through stuff sharers has some connection to Miss T.  Whether it be toys that the boys have outgrown that she would have been playing with now.  Or things I purchased when she was alive that are now tinged with sadness, even things purchased long before that remind me of the hopes and dreams.

There's even a bit where I feel I need to clean and put things in order physically in order to make sure my thoughts and sadness are clean and orderly as well.

If I had just thrown those things to the tip or in the charity bin, it would have just been sad.  Instead, I have the delight of seeing people enjoy those things, find uses for them, adding some brightness to both our days.  The pleasure of making new connections.

So, for those of you who are part of stuff sharers, thank you.  To Nicole, thank you for setting it up.  To others, I recommend setting up or joining such a group - another wonderful part of life in this village.