Monday, April 29, 2013

Writing Prompt: Coming Home

Coming home from hospital with my babies was both exciting and terrifying.

Even though she was big and healthy bringing Emma home
still terrified me!

With Ashlea and Audrey that fear and excitement was multiplied many times over.

Early on in our NICU experience I had hoped that the girls would be able to come home at the same time.  We quickly had to let go of that dream.  As our time in the nursery wore on - and the intense ups and downs continued - I became convinced that Ashlea wasn't going to make it home at all.  I refused to buy anything for her until I was certain she was coming home.

Audrey came home on her due date after 87 days in hospital weighing just over 2kg.  At that time Ashlea had only just recovered from her last and greatest collapse and weighed a whisker over 1kg.

Audrey's home coming

Ashlea came home exactly 8 weeks later - after 143 event-filled days in hospital.  Not many families get a crash course in CPR just in case when they take their baby home.  We did.

Ashlea - first sleep in her brand new bed - bought the day before she came home
8 weeks corrected - 2.3kg

Audrey at 8 weeks corrected
Too cute not to post :)

Of course in typical Ashlea style the excitement of the home coming was short lived.  She lasted 2 days before we had to take her back to hospital because she was nearly impossible to feed.

We don't have any pictures of us leaving the hospital the second time.  Ashlea had been back in special care for around 4 or 5 days when a very wise doctor advised that we take her home with an NG tube rather than stay in hospital and risk exposing her to infection.  I think he had seen us through so many tumultuous moments that he realised neither Ashlea nor I could take another catastrophe.  So we don't have any pictures of her final home coming - we just hot footed it out of there - and thankfully managed to stay out of hospital for at least another 6 months!

Finally at home together - 15th Sept 2006
We still have Ashlea's outfit - it fits her baby doll perfectly

Thanks for the writing prompt Ellen and the chance to self-indulgently reminisce!!

Thursday, April 25, 2013

Thankful Thursday: Anzac Day Edition

This Thursday I am thankful for men like my Grandfather who fought to secure our freedom.

Frederick John Kelly
4/1/1897 - 26/12/1998

My Grandfather and his younger brother fought at Gallipoli and on the Western Front in WW1. Their younger brother fought in WW2 and was imprisoned on the Thai-Burma Railway, and my Grandfather's oldest son was killed in PNG in WW2.  I have never marched on their behalf in the Anzac Day March but I have decided I am going to look into it as I really want to be able to march on my Grandfather's behalf in 2015 - the centenary of Gallipoli.

Anzac day is also a significant day of remembering for me as it was the first day we were told Ashlea was 'very sick'.  You know how doctors say that when things are really bad and they have nothing else to say?  I am thankful Ashlea made it through her first Anzac Day.

April 2006 - ventilated with very high potassium and very low blood sugar
- a bad combination apparently...

Today I am also thankful for:

- beautiful sunny Autumn days;

- that Emma was able to overcome her anxiety and have her first ever sleepover;
Helps that it was at the neighbours...not too far to go in case I had to do a
middle of the night pick up!

- a very productive discussion with the architect and OT yesterday about our bathroom home modifications. Please pray that our plans will get approved by the panel as our modifications are going to be very costly meaning they will require extra extra approval before we can begin;

- an uneventful (although still expensive) dentist visit for all 3 children;
Tom had to come too - at least the dentist
didn't charge for his checkup...

- progress - even when measured in baby steps;
First Ever Birthday Cake without Tears
We promised not to sing THAT SONG
Clearly she didn't trust us 100% and
covered her ears just in case!

- a booking at the bike clinic to see about getting Ashlea an accessible bike;
Ashlea decided she wanted to try scootering...
might be time to look into something a bit safer...

- the thermostat on the spa - it is toasty and warm in there now that the weather is cooling down.

Although apparently I made it too warm today...

Thankful Thursday: What are you thankful for today?

Sunday, April 21, 2013

Birthday Girls

I can't believe my little twins turned 7 today - for some reason SEVEN sounds so grown up!

We celebrated with a pyjama day at home after yesterdays mega-jumping-castle-party in the torrential rain.

First Twin Cuddle - 9 Weeks Old - June 2006
(Ashlea on the left Audrey on the right)

Turning 7 Today
(Audrey on the left Ashlea on the right)

The girls thoroughly enjoyed the party yesterday even though it was pouring with rain.

We ate cake, jumped on the castle (which became a slip and slide) and had pass the parcel - what more do you need?

A huge thank you to Melissa for organising the lolly bags, cake pops, jellies,
pinata, decorations, balloons....pretty much the whole party!

Thank you Ev for making Ashlea's Ducky Cake!!

Thank you to the very talented Sarah for
making Audrey's Princess Castle Cake
And Emma's (gluten free dairy free) minecraft cake

And a HUGE thank you must go to Super Neighbour Greg for spending the entire day supervising the jumping castle and mopping up the water so the kids were safe.

Have I mentioned before how awesome my friends are?

THANK YOU ALL for making the party great!

Thursday, April 18, 2013

Thankful Thursday

Today I am thankful for:

- my three girls;

- however many days I get to have with each of them - even though the knowledge that none of those days is guaranteed is terrifying;

- the gracious gift of organ donation and the doctors and donors who make it possible;

- Ashlea's medical team who keep a close eye on her kidney;

- the girls upcoming birthday party this weekend and the fact that I have managed to outsource nearly all of the party preparation to my friends (although the weather forecast is for a ferocious storm for Saturday - EEK);

- all you wonderful friends who under the guidance of the lovely Frances are raising money for me to get a Thermomix - thank you all for your generosity;

- the chance to sleep in and not have to rush in the mornings due to school holidays;

- that my change in working hours came through just in time for the school holidays - I now only work Mondays - except of course for when we have appointments on Mondays;

- time to hang out with the children these holidays.  I don't think we've left the house yet but we have managed to:

Set up Emma's birthday present.
Ashlea's comment: Mum this fish is Freaking Me Out!!

Play Doctors - such great imaginative play from Ashlea

We had to play dentist too - with the Hi-Lo Chair
as the dentist's chair

The dentist and her surprisingly co-operative patient.
We'll see if it carries over when we go to the actual dentist next week!

Unwisely I introduced Emma to Monopoly.
She thrashed me - here she is gloating over her winnings.

What are you thankful for today?

Thankful Thursday

Sunday, April 14, 2013

What makes a hero?

A blog acquaintance is right at this very moment living the worst moment any mother could.  Her precious miracle - her 5 year old son who has overcome so many obstacles - is spending his last moments on this earth.

I barely know this family.  I am only an occasional reader of their blog and I doubt that they have ever read mine but this news has hit me hard.  It has triggered the fear that lurks in the back of every special needs parent - that something bad will happen - and my child will be taken from me.

From what I have read Gavin was a fighter like Ashlea - overcoming many obstacles in his short life. Many would have called him a hero - a term that we so often over use in our society.  I can tell you there is now no doubt that he is a hero - he and his parents.

Despite their grief Gavin's parents are choosing to donate his organs.  He will  give another child (or children) the gift of life.  Another child will live because of his gift.  Another family will receive their child back from the brink.  Another child will get to leave the hospital - and the tubes and wires and treatments behind.  Like I have said before it's not just that they will be alive - it is that they get to live - really live their life and experience all the milestones both big and small that they would have otherwise missed out on.

Gavin's parents are making a heroic decision in a time of great grief and as a result a family like ours is going to get more time with their precious child.

As a fellow special needs parent I have no words - my heart breaks for them.

As the parent of a child who is alive because of the gift of organ donation I say thank you.  Thank you Hero Gavin and thank you to your parents for their heroic, life saving decision at a time of such great sorrow.

I don't know - maybe it's because I sit on the recipient side of the organ donor discussion - but I think they all qualify as heroes.

Wednesday, April 10, 2013

WW: Life According To My Phone

This week I thought I'd share our week according to the photos I've snapped on my phone...

Emma played Minecraft

And tried her hand at some screen free time...
Audrey played with her bestie Mia

And became engrossed in The Voice

My toe came into contact with one of the kid's scooters...

Ashlea was very brave at bloods
She fed Tom with the fish-tank-cleaning-hose

And developed a bit of a fascination with Upsy Daisy's underpants

What photos did you snap on your phone this week?

Aussie Wordless Wednesday

Monday, April 8, 2013

Writing Prompt(s)

Ellen set 5 writing prompts this week to keep us all busy while her daughter recovers from surgery. Rather than write a big post about one of them I'm going to write a little bit about each.

Writing Prompt #1: Something I Lost

My sanity.  That went a long time ago.

Definitely my anonymity.  It is pretty hard to be inconspicuous with Ashlea - the equipment alone draws attention - let alone the hysterical laughing and loud bossing.

The freedom to be flexible.  There are some things that must be done - like make formula and give medications - it doesn't matter where you are or what you are doing - those things need to be done.  As for packing up on a whim and going somewhere - well that is fine - once you've packed a tonne of equipment and checked in advance that your destination is going to be accessible!

Writing Prompt #2: What Drives You Crazy

Parents who send sick kids to school.  I don't mean your garden variety runny nose as Ashlea is immune suppressed and has a permanent runny nose - rather I am talking about kids who are vomiting, have fevers or chicken  pox or something else nasty for transplant patients. It's not their kids who will end up in hospital is it???

Writing Prompt #3: Looking Up

Things are looking up for me in regards to work.  I have asked my boss if I can reduce my hours to just one day a week and he is very supportive.  The only thing we are waiting on is for it to go through HR.  Let's hope it goes through quickly as I am a woman on the edge!!

Writing Prompt #4: In My Pocket

A used tissue (see post #2).

A hair tie - in case my hastily straightened hair comes into contact with even the tiniest drop of water and needs restraining before it develops into a 'fro.

Writing Prompt #5: Watching Through A Window

I often feel like I am watching through a window while everyone else is living their lives.  Other people's lives move on, their kids grow up and become more independent - yet we seem to stay in the same spot.  Ashlea will always be this dependent on me.  Life will always be this complicated (if not more so).  I suspect this is as good as it gets - not that 'this' is necessarily 'bad' - it's just the way things are.

Thanks Ellen for the Writing Prompts

Wednesday, April 3, 2013

Wordless Wednesday: Easter Weekend

Seeing as the weekend marked the first anniversary since Ashlea's transplant and Murray's brain injury we laid low over the Easter break.

Audrey practised doing flips on the trampoline...

Who do you think will be the first of my
children to break a bone?

Ashlea had a cold so she hung around at home...

When asked what Easter was about she told me:
It was when the bunny died on the cross...

Emma celebrated her 9th birthday with all things minecraft...

No girliness allowed!!

 How was your long weekend?

{Aussie Wordless Wednesday}