Twas two days after Christmas ....

27.12.2011

I find myself not thinking too much about anything in particular.

I can’t, If I do I get heavy in the chest and can’t breathe.

We’ve had lots of family visit, and the house has been crazy busy. This has been nice, I’m not a loner of a person so being around a lot of people has helped.

I’ve visited sweet Stella twice. She is resting in such a beautiful place, it almost doesn’t feel like a cemetery.

A gorgeous friend from what feels like a life time ago messaged me this yesterday-

‘Little Stella must have been a brand new angel in heaven and was sent down to learn from good people about the human spirit and compassion. The reason she was here such a short time was because she had learnt all she needed to about beauty and love and life from two beautiful  people and therefore it was time to go home. What a gift to have her in your lives for those few short years and thank god she was sent to you two and not someone else who could not have given her everything she deserved’

This brings tears to my eyes, I’m full of sorrow but this makes my heart smile.

She sure was a little angel. What a wise soul, and she was mine, all mine for a little while.

I am going to keep updating this blog, and will be doing something big in the name of my daughter Stella next year.

Thank you to all who have supported me and sent your love from across the world, please keep reading and spreading the word.

Much Love Chelsea xxxxx

Goodbye for now my Baby Stella ....

17.12.2011

Thursday night we farewelled our dear daughter Stella Grace.

She had fought right to the last hour when suddenly I just knew she had just had enough.
She wanted to be cuddled.

So that is what her Mummy and Daddy did.

Typing this through tears, I just can’t believe I’ll never see her beautiful face again. Her chubby little hands, the one freckle on her right foot, the eyelashes exquisitely long, her golden hair. Her beauty takes my breath away.
 
Stella’s story has not finished, her shining light will shine bright always and forever.

  Im going to miss her. Im going to miss her all my life. I am utterly devastated and numb, but we will get though this next step. My daughter taught me what it was to be strong, brave and true.

~ The Beautiful Star ~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Service Information:

Tuesday 20th 11am

Centenary Memorial Gardens, Sumner Brisbane QLD

Please wear colour

xxx

12.12.2011

Stella turned 23 months old yesterday, still so so young and very much still my baby girl.

After nearly three weeks in intensive care and a few on the ward Miss Stella is coming home today.

It’s a big day. She will be brought home by ambulance as she is so fragile.

We now have different equipment. I thought before was hard but now it’s a whole new ball game.

We have a suction machine, air mattress and oxygen.

Stella doesn’t swallow at all anymore and needs oxygen at a low rate full time now. She is also floppy, even more so then before.

They have changed her drug cocktail around now so the ones I use to be able to do with my eyes closed have all been changed.

The last three weeks have been so up and down. It’s been a frightfully scary time where I honestly thought we may lose our Star. I cannot explain the raw emotion you feel. The tears, sobbing and the heartache, it’s awful, and its real and it doesn’t go away.

Saturday last week we were told to say goodbye. The team in ICU meant it, and I thought this was it. I have never doubted Stella before and have always remained positive but I really thought she wouldn’t be okay. They said her body went into shut down after a collapsed lung. Oh my, it was awful.

She did however get through the afternoon that they expected her not too, and became stable. What an amazing girl, to go through so much and still be here, wanting to be here.

Without going into too much detail she is now being looked after by palliative care, I’m sure you all know what that means. To me it means she’ll be comfy, not in pain and smothered with lots and lots of love each and every second of every day.

Christmas is around the corner, and I just want her here for it. I want to be holding her in my arms.

My princess, who I know so many do love, is taking us all on a ride, her ride, and she is now the one calling all the shots.

Stella the Star

25.11.2011

My AMAZING BABY GIRL is spending her fifth day in the Intensive Care Unit at the Mater.

Tuesday morning started with an ambulance trip to the hospital as Stella wasn’t responding to anything.

After four days of utter gloom and sadness my princess has once again astounded the doctors and she is breathing by herself, opening her eyes and looking around.

I am just so bloody proud of her, I want the whole world to know how strong, brave and courageous my daughter Stella is.

18.11.2011

Instead of saying "Stella, leave your brother alone" or "stop taking your nappy off"

I have to say to my daughter,

"Stella, take a breath" and "Please swallow baby"



This is an incredibly life deliberating disease that deserves more research and more funding.

Seven months ago I had so many hopes for my girl, what she will be like in high school, what kind of woman she will be grow up to be. I knew she would always be strong and opinionated - she was a vivacious girl and still is on the inside.

Today, I just wait for one smile, one connection, each day at a time.

We've spent a few days at hospital this week. She's home now and is on the mend but every sickness knocks her little brain and body back 10 steps.

........................

Please, cuddle your little ones and never ever take for granted what you have. I know it’s a cliché thing to say but I really do mean it and I’m living by it every single day.

Upset

16.11.2011     ( 7 months on to the day )


Ive been feeling very emotional this week.
Everytime I look at Stella I cant help think what she 'should' be doing.

I dont normally think about the future, I think about the now.
Thinking into the future just crushes my heart.

It is so so unfair.
I still cant grasp why this has happened to my Stella.
I'm trying my very hardest to be strong for her but sometimes I just cant help but cry.

Here she is, the most beautiful girl xx

Kisses and cuddles

10.11.11
From today I am going to make more time for kisses and cuddles.

Cleaning, washing and running around can wait..... 

KISSES AND CUDDLES are going to be my top priority.

Every day everyday people are challenged with a variety of tough and hard times.

It's how your outlook is on life that gets you through.


We could dwell on the bad but we wouldn’t be living for now, enjoying what we have.

What we have is a beautiful little sole who loves her Mum, Dad and Brother.

Stella is just so special and we all are just so damn lucky to know her.

Specialists appointments and my birthday

19.10.2011


Well its been a little while since I have written a post.
We've been busy catching up with freinds and trying to get Stella a bit more interactive since she had her episode a few weeks ago. She hadn't really been herself but this morning is looking very bright eyed !


Monday I met with Stella's metabolic doctor. It was a quick appointment. Of course I left crying. Then I had to meet with Palative Care. I have been putting off meeting them for some months now and really was not keen on talking to them.
I met with one women, who was nice but they're still not a team I want help from, not for now anyway. The term Palative is awful and not something I think children should ever be associated with.


My birthday was yesterday, one I'm sure I'll never forget with all we've been through these last 7 months. I did what any normal mum does and raced around Stella for some more appointments and school ( Conductive Education )


So every day, things run through my head.
Why us, is a big one......
Also, it's better to have loved then not loved at all.
We have been graced with Stella's prescence and should not take any day granted.


Miss Stella Grace xxx

Jett - Our healing stone

7th October 2011

I went and visited one of my best friends Wednesday.
She said she had bought me some stones from a healing shop.
One was the stone- Jet, and another is for Stella.

I knew Jet was a name of a stone but I never knew the meaning and healing properties.


"Jet is also known as black amber, although it is not actually an amber, but rather fossilized coal. It was used extensively in mourning jewelry in Victorian times and was considered a stone for alleviating and bringing grief to the surface to be healed. It has also historically been used as a protection stone and is said to have very powerful protection energies to ward off evil, negativity, and psychic attacks. It is also said to protect from depression, and increase self-reliance. Mystically, jet is considered a stone of sympathy, healing grief, psychic experiences. It is said by intuitive sources to be an excellent calming stone."

I think Jett entered our lives at the most perfect time. He was obviviously meant to be here with us through this and I know if I didnt have him here I would not be coping.

Im just amazed by the meaning and properties of the stone.
The above is what my Jett is to me, and I know he's helping a lot of other people along the way.

xxxxx Thanks Erin  xxxxx

Stella's Auction !

6th October 2011

This morning is the start of Stella's Auction that Channy from @ChantelleWattsPhotography is holding.

All the lovely businesses have donated some rather cute things! We're overwhelmed by people's generosity and kindness.

There is some gorgeous stuff that I wouldnt mind bidding on myself !

Auction ends Sunday 8pm, get on over and have a look if you havent xxx

Stella with her baby brother Jett x

A scare

Well Im not one to usually let everyone know whats going right when it happens, dont like the fuss, but I did start this blog so I could get suppport each week and let everyone know what is going on without actually having to tell you !

30th September

Stella woke up and I noticed she had a twitch in her right leg.
I didnt think anything of it as she sometimes does twitch when under stress or not feeling well.
By the afternoon the twitch had moved to her upper arm down the right side.
This raised alarm bells in my head- I called Neuro nurse at the Mater straight away, she said to bring her in.
On the way in the car I started to panic as she was moving a whole lot more. We have been instructed to give Stella a rescue medication while waiting for ambulance etc. I decided it couldnt hurt to give it to her, so I put the required amount in the side of her mouth. A minute later she vomited.
We weren't far from the hospital now and thank god because I was really starting to worry.

We raced her up to ED who knew we were coming. Scott carried her through. The doctors asked me what had happened but I didnt have a voice to be able to tell them !  That's how much I was starting to panic.
After 40mins off them setting up the IV's into her arm and leg, trying her on three different strong anti-seizures, she finally settled down. Thank god. I was a mess the whole time as all I could think about was how it happened last time, that day back on the 16th April :(
Our little princess was so brave during it all, and even managed a cheeky smirk once she had settled down.

She spent the night in intensive care and another night in her other home, Ward 7 East. All the nurses were happy to see her, just not under the circumstances.

We took her home Sunday, and she has slept nearly every hour since then.
A seizure can knock your body about in general, add to that the amount of drugs it took to stop it plus her disorder, and it equals a tired little girl.

It was scary but it stopped, and thats the main thing. Last time it just kept on going, even after copious amounts of drugs.

She's one little rascal who I love just so so much xx

The weekend

24th September 2011

We had a lovely Saturday morning with a beautiful photographer offering to do some family portraits for free !
Channy from @ChantelleWatts Photography
Such a lovely lady, so easy to be around with a huge heart. Having never met her before ( and my husband having known her from 10 years ago ) she has decided to do some fundraising for our family.

Please please please go and like her FB page, she is collecting items for an auction to raise  money for Stella.

If you can contribute in anyway we would all greatly appriciate it xx

Here's two of the piccies we got taken - I LOVE THEM

...............................................................................................................................................
Stella was a bit off for the rest of weekend and really used "Stay in bed day" to it's full potencial as she was in bed (nana and pops) the entire morning on Sunday as she just wasnt happy anywhere else.


By the afternoon she was a lot better and had the biggest chuckle after stealing her brothers dummy from his mouth, and by watching her new Updy Daisy doll dance around the room with mum.

LOVE

23rd September 2011

We are seeing a noticeably different and more aware Stella as we are weaning her off one very strong anti-seizure.....

Scott and I swear she just said LOVE while she was trying to chat with her daddy when having a late night cuddle xxx

Photo taken today: sitting at her special table and chair that Daddy made her

Lets talk about it

This week is mitochondrial awareness week so I dont think there's a better time to let this go public.

It also "World Stay in Bed Day" this Sunday the 25th. Please go over to http://www.facebook.com/stayinbedday and see what it's all about.

I would love for you all to read my blog, share it with your friends and talk about mitochondria disorders - the invisible disease.

This is all for Stella.

I don’t want her to go un-noticed and I don’t want her condition to go un-noticed.

It’s a devastating disease that affects many families in a lot of different ways.

Five and a half months later

20th September 2011

The reality of what has happened still hasn’t sunk in. I don’t think it has for any of us.

Every single day is hard.  Hard phiscally and emotionally.

Since been home we’ve had some good news though. Jett came back clear. He is fine and will be okay. I knew in my heart he would be fine, but having said that I honestly thought Stella would have been too.

Scott has gone back to work 4 days a week as we need the money. My mum has still not gone back to work and is helping me fulltime. Jett is growing and is now over 6 months old.

Stella has taken tiny steps forward which is hopeful. At least she’s not going backwards. She still cannot move and is not eating orally. We take her to private class’s twice a week to try and get her moving and build her muscle tone up. We sing , read books, dance and be silly with her every day just to try and get a smile. Her brother can make her giggle like mad.

I look at her face, she’s like snow white. She is the most gorgeous girl.

God, she’s so so beautiful. It seems so unfair.

Where my head is at now …….

Im not okay, but I’m surviving. I’ll never be okay with this. It changes you. I do have to carry on being strong though. I’m a mum to two children and always will be.

Treasure what you’ve got, and I don’t mean material things ; cause sometimes shit does happen to good people.

..........................................

I was just reminded by a beautiful friend, Amos:

Miracles do happen to good people too xx

We do know that as we have already experienced that many times with Miss Stella, thanks for the reminder x

She's home

Our baby girl is home and she's safe in our arms

24^th June 2011

We didn’t even last a week at our house. Everyone in the immediate family got sick so Stella was shipped to her nana’s (my mum’s) to keep her in quarantine until we got better. It ran through all of us over 2 weeks until it eventually hit Stella.

She had bronchiolitis (RSV) again after having it once in hospital. The 15 days that she was sick was absolute hell. I didn’t sleep. I was so worried the whole time. She would cough, couldn’t catch her breath, then go blue. It was awful and very draining on my little girl’s body and on me too. I was glad to see the end of that and have Stella back.

Over that time, we talked with our family and the decision was made to move into my mums and her partner’s house. Not the most ideal thing to be doing at nearly 30 but we had to remember everything and anything that we are doing, we are doing for Stella. There is no way I could look after Stella and Jett on my own. Scott still had to work. He just worked three days at this point in time to try and spend more time with Miss Stella.

So after 10 weeks in hospital we were out. It was great not having to travel back and forth every single day from the hospital. By then end of it I was sick of everything to do with the hospital no matter how lovely most of the nurses and doctors were.

At home Stella is on a cocktail of anti-seizures and vitamins 5 times a day.

She is completely nasal gastric fed.

She cannot sit up, nor hold her head up.

It’s still so unreal, unreal for all of us.

I can’t bring myself to really think of what we’re facing, what we are dealing with.

This is our Stella now and nothing, nothing at all can change that.

 

Have to be strong

So the diagnosis came and good case scenario would be if she lived to ten.

When in the world can that be described as a good case scenario?
Thoughts ran through my head.
What would be worse, losing her sooner or losing her later?
What a thing for a parent to think. I felt guilty thinking that. I felt distraught and inconsolable.
I felt guilty thinking of her funeral. I just couldn’t think straight at all.

The doctors said it could be one year, it could be two, and it could be ten. They are all quick to say that they have no time but there will definitely be an earlier end to our sweet Stella.

It’s unfathomable, heart breaking and utterly devastating.

How was I meant to go on living life normally?

It was bitter sweet bringing her home. All the while we’re happy to have her home, while secretly we knew her diagnosis and we’re overcome with grief.

So we decided to stay positive......

She was already a lot different to any other case. Her liver was still fine, she made it out of ICU, she could recognise us, she did things intently, and she was our “star” and she will be different. She’ll shine through this.

We had to think this way.
We couldn’t let it bring us down. She needed us to be strong and we had to believe in her.

Information on what it actually is and means

Firstly :

What are mitochondria?

Mitochondria (plural for mitochondrion) are sometimes described as cellular “power plants” because among other things, mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. In addition to making energy, mitochondria are also deeply involved in a variety of other activities, such as making steroid hormones and manufacturing the building blocks of DNA

Symptoms of a mitochondrial disease?

Given the fact that mitochondria are responsible for fueling nearly all of the body’s energy needs, there is a long list of symptoms depending on which organ or tissue is having the “energy crisis.”

• poor growth (failure to thrive)
• muscle weakness, poor coordination
• sensory (vision, hearing) problems
• reduced mental functions
• disease of the organ (heart, liver)
• dementia
• respiratory problems
• hypoglycemia
• apnea
• lactic acidosis
• seizures
• gastro-intestinal disorders and swallowing difficulties
• developmental delays
• movement disorders (dystonia, muscle spasms, tremors, chorea)
• stroke
• diabetes
• brain atrophy

What is Alpers

( Stella has been diagnosed with POLG , as she doesn’t have one of the mutant genes that it takes it make up Alpers, but she has 2 out of 3 )

Alpers’ Syndrome is a disease of the brain and liver. There are 3 classical symptoms of Alpers’ Syndrome. These are: 1) seizures that are very difficult to treat and have a focal component, 2) episodic psychomotor regression or dementia (loss of developmental milestones, often associated with common childhood infections),
3) liver disease. The children are born and develop normally for a period of time in virtually every case. Symptoms begin between the first few weeks of life and about 25 years of age. Two-thirds of the cases begin to show symptoms of seizures, or episodic loss of developmental milestones, within the first 2 years of life. The liver disease is often subclinical in the early stages of disease, but can appear at any time as acute liver failure.

Alpers’ Syndrome is a recessive genetic disease with a frequency of about 1:250,000 live births. Many cases die before an accurate diagnosis is made, so the true frequency is still an estimate. Alpers is caused by inheriting two copies of the POLG gene that are dysfunctional. These are called mutant copies. The function of the POLG gene is to copy mitochondrial DNA. In Alpers’ Syndrome, POLG is defective, so after a period of time, the amount of mitochondrial DNA in the cell falls below a critical threshold of about 35% of normal. When this happens, the mitochondria become sick, and begin to misfire. This leads to the brain and liver disease of classical Alpers’ Syndrome

How is a mitochondrial disease inherited?

The types of mitochondrial disease inheritance include:

• Nuclear DNA (DNA contained in the nucleus of the cell) inheritance. Also called autosomal inheritance.

— If this gene trait is recessive (one gene from each parent), often no other family members appear to be affected. There is a 25 percent chance of the trait occurring in other siblings.
— If this gene trait is dominant (a gene from either parent), the disease often occurs in other family members. There is a 50 percent chance of the trait occurring in other siblings.

• 
  MtDNA (DNA contained in the mitochondria) inheritance.

— There is a 100 percent chance of the trait occurring in other siblings, since all mitochondria are inherited from the mother, although symptoms might be either more or less severe.

• 
  Combination of mtDNA and nDNA defects:

— Relationship between nDNA and mtDNA and their correlation in mitochondrial formation is unknown

• 
  Random occurrences

— Diseases specifically from deletions of large parts of the mitochondrial DNA molecule are usually sporadic without affecting other family members disease

…………………………………………….

How awful for my sweet beautiful darling girl.

I look at her and I don’t believe it. I believe she will be different and she’ll be the “one” who writes this story differently.

The genetics councilor’s term to explain what happened -
“It’s pretty much just really bad luck”
Many couples can be carriers and you would never know as it usually only hits one in four children. So you could easily have 2 children and they’ll both be fine. It was just awfully bad luck that our first born was hit with the two mutant genes from both of us.

Stella's diagnosis

After our baby having a seizure that couldn’t be controlled for over 24 hours, we were stunned as to what could be happening in her little head.

One doctor described her brain as being “very angry” and another saying that she is a “very sick little girl”

Three weeks in ICU and then another seven on the ward. God it felt like a life time.

It took over nine weeks for the results to come back from a laboratory in Melbourne.

Every week we were waiting, waiting for it to come back negative to what they all suspected it was.

None of us went crazy searching it on Google, not until the day we found out. I didn’t want to be thinking negatively so that whole time we kept being positive. Saying that what happened was a once off thing and that‘ll it’ll never happen again. Positive thinking the whole way through was what kept me sane. If anyone was down I couldn’t handle having them around, especially around Stella. I believed she could and still can feed off our energy and we needed to be strong around such a strong little girl.

So the results came back positive. What we had dreaded……

She has been diagnosed with a Rare genetic mitochondrial disorder: POLG
We had never heard of this before. Didn’t have the faintest clue about what it meant for our baby princess and what it actually did to her body.

After some research I was left feeling absolutely devastated and distraught.
My hopes and dreams crumbled.
All I could think about was how I wouldn’t see my daughter grow up into a woman. We weren’t meant to outlive our daughter.

There is no cure for this disease and, currently, no way to slow its progression.

How the hell could this happen to Stella, to us , life wasnt meant to pan out this way.

Heavy heavy heart

20th June 2011

I was by myself with Stella for the morning, playing with her on the "sun bed" in her pretty pink corner on Ward 7 East after staying with her for the night.

The Neurologist registrar walked in.

She looked down at us and said “We have the results, did I want to know them now”

I said “yes, just tell me”
She said “they’ve come back positive for POLG”

I couldn’t talk, I remember asking three times if she was sure. I just didn’t believe it. I still don’t believe it. I called Scott, told him to come in straight away, I then called my mum.

To say I was utterly devastated is a great understatement.

I could hardly breathe. I just could not believe it.

My heart was heavy. It literally felt like it could fall out.


That afternoon we met with the Neurology doctor, and three others plus the nurse manager.
We were desperate. Desperate for answers.

“Is there anything we can do? Can she get a liver transplant if it fails? Is there a cure ?”

We walked away with not many answers, just a whole heap of sadness and disbelief.

We were told it’s genetic and that our Son Jett would also need testing. I asked them to get his bloods straight away and hoped and prayed in my head that he would be fine.

In that meeting we said we just want her home as quick as possible. We didn’t care about the paperwork, just let us go home. That was on Monday, we were home by Friday. It was a big week; we had got comfortable there and knew all the girls. It was a big step taking her home and it was scary. She was on a lot of medication and had very complex needs.

Every day I cried in that last week at the hospital.  All anyone had to do was look at me and I started.

The next stage of our Stars journey was upon us.

Stella moves to the ward

We were warned that it can be quite a big change going from ICU to the public children’s ward. No one on one care…… I didn’t mind, I was just ecstatic that she even made it out of there.

The day she moved was the first day she had opened her eyes, the last I had seen them was when she was looking up at me from the ambulance bed.

Her big beautiful blue eyes. She was there, inside, just foggy.

We spent another 7 weeks at the hospital. Rostering every night so she wasn’t by herself. Rotating days between her Nana, Grandma, Dad and myself.  All the while still feeding my new little baby boy who had well and truly been put to the back burner.

The first few nights staying there I just stood by her bed crying. I couldn’t stop the crying and the thinking. Thinking about what she was doing before this happened. Why has this happened? How could this happen to Stella. What is wrong with my baby girl.

She couldn’t sit, lift her head, move her body. She couldn’t do anything….. but she was there on the inside. I could see her in her eyes.

I remember thinking back then, I just want her to be able to talk and walk.
That has all changed now. I honestly just want her to be happy.
I remember thinking, oh no, what if we have to live with epilepsy for the rest of her life.
Geez, that would be a dream come true compared to what we actually have to deal with.

So we waited weeks and weeks for results to come back on her bloods.
They told us in the numerous meetings that POLG/Alpers is still high on there list of what she may have.
We didnt hear that, we tried to stay positive and kept working on her. Loving her.

We had daily physio sessions plus occupational therapy and speech therapy.
Everyday she amazed us.
It was tiring, emotionally and physically…..each day back and forth. 
It was worth it though as she was here and she was awake and responding.
She recognised her mamma and dada and that’s all we needed to keep going.  

Photo taken 4 days after leaving PICU - 9th May 2011

PICU hell

The next 2 and a half weeks were the hardest in my life.
Seeing my baby girl on the bed in an induced coma with tubes and lines in and out of her body….
It was horrible. I had a permanent stomach ache.
She was cooled to 31 degrees to try and save her little brain.
She felt ice cold and had bruises from where they were trying to get more line entries.
Her face was swollen but through that I could still see her long lashes and beautiful lips.

We had numerous meeting with the doctors.
We had the nation’s best neurologist looking after.
He suspected she had what they call “ Alpers Disease “ but couldn’t confirm until bloods were tested. We only gogoled it once, cried, said it couldn’t be that and put it to the back of our minds.

We had to be strong for Stella.

Every single day we sat by her side, played her Bob Marley and read her her favourite books. I had to whisper to myself “ she’ll be okay, she’ll be okay” repeatedly through my head.
If I didn’t the grief over came me and I couldn’t think, I couldn’t see.

Positive thinking is what got us all through....
So many emotions, up and down.

Meeting the other people in PICU, seeing some babies make it to the ward, and some making it to heaven.
I met a lovely couple, whos boy passed while we were in there. His daddy said that their son was watching over Stella and that she would be okay. I clung onto this, this hope.

I dreaded any meeting with the doctors, and felt violently ill every single time we had to meet with them. The amount of times me and my husband were told that our star, Stella would not make it is unbearable to even think about now, months on.

We just kept clinging to hope. The last few days in PICU she started to move for the first time.


Wow, she’s waking we thought.

To hear that we were to be moved to the Children’s ward, I was so happy. She wasn’t in what they call a critical condition anymore, she could breathe by herself.

Obstacle after obstacle Stella knocked down.


First they said she wouldn’t be able to breathe by herself, she showed them she could.


Then they said she would be able to move her left side, she could.


Everything she did was a miracle, she was just amazing.

Nothing will ever be the same again

16th April 2011

So, to be honest, I actually haven’t really replayed this in my head since it happened. I guess it's been my way of dealing with it..........

Saturday morning and we were all racing around preparing everything for Scott's 30th birthday party. Stella and Jett's Uncle Sean, Uncle Damo, Uncle Drew and Great Aunty Catherine had come over especially for the party.

Lunch time, I took Stella outside to see the boys.
I noticed she wasn’t really holding onto me properly but thought nothing of it.
Then I noticed her foot was twitching. A funny twitch that look like a muscle spasm.
I showed her daddy and the boys and we all thought that maybe it was growing pains.
So I took her inside, made her a bottle and set her up on her lounge in the living room.
5 mins passes and I notice her foot twitch had moved up her leg. It looked like a 'hiccup'.

I called my mum. I just thought it wasn’t quite right. After a 2 min phone call, I hung up and called the ambulance. She was still responding at this time but the 'hiccup' had moved to the whole left side of her body. I was beginning to worry.... I got the boys to stay inside with her while I was waiting to hail the ambulance in. They seemed to take forever..... They arrived, must have been around 2pm. They weren't sure what was wrong with her but thought it could be allergy related. She was still responding but was floppy, I could hardly breathe. I went with her in the ambulance; I just held her hand and patted her head while she looked up to me from the bed.She had no idea what was going on ...... she wasn’t crying, and I was trying to not cry as I didn’t want her to see me upset.

In the Emergency room she was whisked away, there must have been 10 people all around her. I couldn’t see what was going on. I waited anxiously for Scott to arrive. In a short amount of time Stella had a lot of tubes in her. An American Doctor came over and told us that she was fitting and they are trying to stop it. He asked a lot of questions. I can’t remember much else but I know they were all very concerned. A nurse came over and said they were going to call the Mater Children’s, and that she may be transferred there if that’s what they recommend. I spoke to Scott, we had no idea what was going on, and definitely no idea how serious it was. I honestly thought she would be out the next day and we could have the party the following week, how wrong was I.

I still remember driving to the Mater that night at around 8:30pm.Talking to Scott, both wondering what the hell was wrong with our little girl.

We were told to go straight to PICU (Paediatric Intensive Care Unit)
We wandered around not knowing where we were going, got the room and waiting in the parents retreat room.
Hours passed and still no word on our little girl, no word as to whether she had even arrived at the hospital yet from Ipswich.
11:30pm came and I just couldn’t wait any longer.
I buzzed ICU reception desk and asked for Stella.
She had just arrived and they were finishing putting the "lines" in her. I had no idea what they were talking about. They said they would be another half hour.
Nearly an hour passed. Finally a nurse arrived at the door. She said we were able to go in, but first a doctor needed to talk to us.
We walked in through the door; I noticed the strong smell of antibacterial hand wash (a smell that I will now never forget) and bright lights.

Into the consult room. I can’t remember much, I was numb. We were told our daughter was still having a seizure that no drugs could control. That this is not normal at all and that she may not make it through the night.

God, the despair, the grief, it's overwhelming and nothing can stop it.

It feels like your insides are being pulled out. I couldn’t hear anything the doctor was saying after he said that, I was in a bubble and was in that bubble for the next 18 days that we spent in PICU.

...............

The next day felt like the world was ending, it was overcast outside and thats how I felt in my heart.