Wednesday, June 30, 2010

Who i am.

Last night i cracked. It was major meltdown in my crazy world. Ive realised a few things. I have way to much going on. I don't get enough out. I need to vent more.

A few things about, Who i am.

I'm 26.

I'm a mum of 3. At the moment they are 12 weeks, 19 months and 5 years. Boy , Girl, Boy.

I wear black.

My hair is black.

My bag is black.

I feel like black makes me blend in with the crowd, but when i look around, I'm usually the only one in black.

Ive had a rough journey, But i appreciate the lessons Ive learnt. All tho i hold grudges.

My face does not suit a fringe. Even tho my whole childhood , i had a fringe.

I could ramble 10 things in 5 second of scrambled thoughts going through my head.

I clench my teeth in my sleep. To the point i cracked my tooth.

I have beliefs.

I'm easily inspired, but find it hard to inspire.

I'm gullible, but far from stupid.

I always trust my instincts. My dads advice.

i had my first child at 21. Was a single mum 6 weeks later and can not recall a time where i regretted it.

My mind ticks constantly. Google gets a run for its money.

I google alot.

I have a habit of never finishing projects.

I write lists. But i never get through it.

I love taking photos of moments that matter.

I don't want to forget the small things.

I hate my nails. My middle finger nail is bent from where my pen sits.

I learnt that Black is a shade, not a colour. Yesterday. From my 5 year old.

I know I'm a good mum, My kids are still alive. I'm just not sure if i know how to parent.

I'm a hoarder. That's a main issue.

My thoughts are organised. But i cant seem to organise my life.

I find one out fit that looks perfect. And wear it to death.

I want long straight black hair. But as soon as i hits my shoulders i cut it all off again.

I blog because it releases negative energy.

Ive had to distance myself from people who need me to much.

I need myself right now.

My children need me. My Partner needs me.

I'm so sleep deprived and sware every morning ill go back to bed for the 9am children's sleep. But never do. I should be in bed right now.

I thank people who have hurt me for teaching my life experiences, but i will never forget the pain i felt.

My chest breaks out in a heat rash when I'm stressed and run down.

I suffer major panic attacks and for some reason people don't see that as a problem. When i cant breathe. Thats a problem.

I like to lock myself away when things get full on, to regain my thoughts. I'm not running away.

Im to creative for my own good, and bank balance.

I wish my children didnt have so many unnessesary toys.

I want to teach them more.

I want to read to them.

I wish my mind wasnt in such a hurry.

My room is covered in so many clothes we can bearly walk in the door. Yet we seem to only wear one or two out fits.

My son is sick. And we still don't know why. To others, he seems fine. But his blood tests show otherwise. The doctors don't have answers, so they just test and test.

People can drink, smoke and use there whole pregnancy and birth healthy happy baby's. I stress over injecting my body with a panadol, and my children are born sick. That baffles me.

They say god only gives you what you can handle.. I think he mixed my name up with someone elses.

Facebook is the biggest waste of time ever invented. Its stolen so much time away from my family that I'm glad I'm away from it.

I need to spend more time and energy selling my creations in public places and not so much behind a computer screen.

I want to teach my daughter to sort buttons.

In my new house i want space.

Every nook and cranny of my home has some form of mess.

I'm going to line my walls with inspirational quotes and lyric that makes me smile.

I want to meet other parents.

I give alot and expect a little. Sometimes that bites me in the butt.

I want to go to play group.

I wish i didn't fear leaving the house with more then one child.

I wish my opinion mattered.

I have to apologise to my Mumma for stressing her out, Last night she thought i was dying. Sorry Bear.

I get defencive when i think people are trying to put me down.

I snap easy.

I remember alot.

Tattoo's to me are pieces of art work i can carry around all the time. I'm quite prepared to grow old and wrinkly with them.

Photos are my memories.

Ive accepted I'm not as strong as i make out to be. My insides proved that last night.

Fulfillment in life is making others happy. Smile. Knowing that there are good people in the world. But making people happy doesn't fix my life.

I need to fix my life. That is my project.


Wednesday, June 23, 2010


For this!!


Monday, June 21, 2010


I am flying
I am flying
like a bird across the sky
I am flying
passing high clouds
to be with you
to be free

My beautiful sweet hearted soul.
Im thinking of you every day.
My heart hurts to see how much you miss your dad. I know were miles away from each other, but if your ever feeling lost and sad, know im thinking of you.. Im sitting somewhere random, probably sewing or changing one of 2 pooey butts.. Wondering if your ok.
Weve seen each other good and rough times, stuck by and supported each other.
Only time will heal. Do not rush it. Grieve and remember him.

We love you.


Friday, June 18, 2010


Who would have thought,
We’d be taking this path, walking together,Living this nightmare of our own.
Who would have known, you were that star, that sent us the strength, to yell we’ll get past this fight.
I thought it was you, the gift yet the trial, we have you now, you landed right where you belong.
We’ll keep you safe don’t be scared, it’s here where you will stay.
I knew someday that I would love, I didn’t know it would be so strong, But your worth it all.
Don’t stop, just keep running to the place that your soul fits, small but needed, your worth it.
Don’t doubt that.

I know at times it hurts; your heart is torn, the questions running through your mind.
Before you landed there were testing times, nothing prepares you for what lay ahead.
Rest assured that’s why your here,
right here and now, were here with you,
and were not leaving,
You keep running
Ill take you hand and guide you.
I understand you.

It’s taking time, but with us, so close, never far, you need not worry, were in your reach.
Here’s our gift, the gift of trust, we offer this to you no cost,
Rest those wicked thoughts.
Your worried mind that ticks and takes its toll on your tiny sole, with us were never far.

I knew some day that I would hurt; I didn’t know it would be so rough, but you’re worth it all.
Don’t stop, just keep running to the places that your soul fits,
small but needed,
close your eyes,
rest those thoughts,
rest your head,
we’ll be here,
right beside you,
never far.

Thursday, June 17, 2010

Mixed feelings..

I'm sitting here typing out my pages and pages of mixed up papers that i called my blog while i was in hospital with Phoenix.

30 odd pages of feelings, thoughts and worries. Writing everything down seemed to help me understand it all better. Even though i was completely confused.

It makes me realise how hard it was living in a room, on maternity, with no baby. Knowing your child was in a humidi crib, alone, down the end of the hall.

So why do i feel like i want to do it all again? I would NEVER wish a special care baby upon anyone. Its heart breaking. And i honestly thought that, along with the painful pregnancy and excruciating labour would put me off babies for life. But it seems not.

I make excuses for how painful my pregnancy was with phoenix.

Addison was only 6 months old, so she was still a baby herself. Still waking for feeds, teething and all the other joys that come with little ones! A rough 'relaxation' pregnancy massage i suffered 5 weeks of migraines which left me hospitalised and on drips, then pregnancy induced varicose veins which turned my right leg blue! And after all that, i blame it on falling pregnant to quick.

There are 3 .5 years between Jett and Addison-Dior and i didn't have half the amount of problems i did last time round.

So now i have to keep reminding myself how tired i am. And tiredness makes me cranky, and a cranky mum = cranky kids. I need to give myself time to recover. Gosh, Phoenix is only 9 weeks old!!

Were still young, we have plenty of time. And if the time does come and it doesn't happen, then I'm blessed with 3 amazing children who will love me unconditionally for the rest of our lives.


Wednesday, June 16, 2010

Delilah Love.

Don't you worry about the distance
I'm right there if you get lonely
Give this song another listen
Close your eyes
Listen to my voice, it's my disguise
I'm by your side

Today was different to every other day. Very different. From the moment i set out to start what i thought would be a straight forward day, i had 'reason' people surround me.

To me, Reason people are those who are, obviously, there for a reason.
Today, my 9 week old baby boy Phoenix was tested for Cystic Fibrosis. Not fair on such a small child, but if higher powers thought i couldn't handle it, then i wouldn't have been blessed with my little guy.
Phoenix spent the first 9 days of his crazy life not swaddled by Mum and Dad, tucked under our wings keeping him warm and safe from harm. But connected to drips, monitors and basking in the glow of photo therapy in a humidi-crib. Not something you would see everyday..
A chubby full-of-rolls 10+lbs buddha, casting shadows over tiny babies in the special care nursery.
Phoenix's diagnosis was extreme low sugar levels, a heart murmur and severe jaundice.
He was in the best place possible, being looked after people who could do more then his worried daddy or i could do for him.
Since then Buddha, the name that hasn't budged, just cant seem to rid the jaundice. At his 8 week paediatrician check up his skin still showed the affects of the bilirubin. A touch concerning seen as though by around 4-5 weeks the liver should be mature enough to allow the body to become bile free.
The testing begins.
I remember the small thumb nail size vials of blood the would take from pricking his heals to check the bilirubin levels in SCN, now they are taking 10-15mls at a time.
Tests come back a little disheartening. His jaundices levels arent good. We are referred to the Gastro enterologist who sends us to have a 'Sweat test' done before we see him for a liver biopsy.
Today, we had that test done. The morning started a bit hectic. I powered through on little but enough sleep. Did the school drop then killed some time by Op Shopping. My favorite. Not something i would usually do with Kid in tow, but Phoenix is no trouble. We stopped at my mums fav store and i got talking a lovely lady. She showed me where the goodies were that i was looking for, and soothed a crying hungry Phoenix while i had a good rummage. She explained she had lost quite a few babies, but was blessed with a daughter. I could see how much love she had by the way she looked at my son.
I bought my goods, and headed off. As i popped Phoenix back in his car seat , Delilah caught my eye. Now those of you who know me, know Delilah is my master piece. Ive loved her since i cut her pattern out of my Mums well loved T-shirt. And for weeks shes been sitting on my craft shelf waiting to 'The right time' to go.
She was bound for the children's ward at John Flynn hospital, where Buddha was having his tests done. But someone had other plans.
I needed a pen and paper. I drove to the next Op Shop and spotted a card.
"The lord bless you, and keep you"
Inside i explained that I'm a part of a group that drop toys to random locations hoping to put a smile on peoples faces and spread random acts of kindness. Today Delilah was headed to the hospital where the baby she had just showed so much love to was having tests run. I explained we may never cross each other again, but in memory of her angel babies i would love for her to re home my doll.
I drove back to the first shop where i met her, Handed over the bag and walked away.
We were now bound for the hospital. I was about 45 minutes early so i headed up to see a few friends at the gastric banding clinic. They hadn't met baby #3 yet and were over the moon to finally meet him.
Carol, One of the receptionists who Ive know for years now asked if she could pray over him. I didn't mind at all. Mum and i sat there watching Buddha sleeping peacefully while Carol quietly prayed with her hand on his head.
Nor mum or i are religious people, but we can both honestly say right now that we felt what carol was doing. As she finished we saw phoenix 'jump' .. it took us by surprise and we looked at each other with big wide eyes! Haha.. Something happened.
I sit here now, with my 3 beautiful children wondering why today happened. Why i came to be around such 'reason' people. I guess only time will tell, and ill sit here now, whispering my own little prayer that our son will be fine. And if forbid hes not, then ive got the strength to get through this.
Kiss and cuddle your little babies. Whether they are 2 or 20. Human or furry.. Love with everything you have. And be kind those you don't even know.


Testing times...

9 weeks and 1 day ago I was sitting exactly where i am now wondering in 'they' were contractions.. or just a false alarm. Not wanting to say anything to any one.. Just gritting my tear and bearing it.. Patiently awaiting the arrival of our precious little son.

I wish i could have foreseen the future.

When phoenix was born he had severe low blood sugar levels. Blamed so kindly by the nurse on me devouring packets of sherbet each day trying to deal with 'Pica'.

We were told he would spend about 24 hours connected to a drip of glucose, giving him the sugar he needed that he was no longer getting from me. 24 hours turned in to 48 hours. And finally we were allowed back to our room.
For the first time i was able to close my door, and snuggle skin to skin with my new born. It was then i noticed he was slightly jaundice. When i pressed his skin it would turn from orange to white. I mentioned this to the nurse in charge but she had no concerns. Our night together was lovely. We slept in the same bed and i fed on demand. At about 3am i was so excited to be going home i packed my room up while he slept.

Finally it was 7am, i was preparing him to get dressed in him going home out fit when i noticed he was 'glowing' . His eyes were yellow, his skin was blotchy and he wouldn't wake up.

Hospital policy is you can only 'wheel' your child around the ward in there bed. I picked him up, wrapped him in a blanket and hurried down to the nurses station. where again, he was whisked back to SCN.

By 9am his bilirubin levels were back and we weren't going home. Phoenix was put back on the drip , tube fed extra fluids and in to a humidi crib undergoing Photo-therapy.

He had the normal dose of rays from the crib and another set of 3 bulbs on top of that. We were to spend about 8 days in that room.

Paediatricians then found a heart murmur which at 9 weeks old, it still there. His jaundice has never gone. Neonatal jaundice is common, around 75% of babies will get it. A bilirubin level of more then about 85 will need photo therapy, Phoenix was 348. This is also known as Un-conjugated jaundice or clinical jaundice.
Phoenix now suffers from Conjugated jaundace. Meaning there is an underlying issue. Not just caused by being a new born.

So far we have run both urine and blood tests for Rubella, UTI,Toxoplasmosis and CMV (similar to glandular fever) , Hepatitis B which infects the liver. It lives in liver cells and also in cells of the immune system. When the hepatitis B virus infects the liver, immune cells are attracted to the liver to help fight the infection. These immune cells cause a lot of the damage that is caused by hepatitis B.

We've had Ultrasounds for Obstruction of the bile ducts inside and/or outside of the liver, and now a 'sweat test' for cystic fibrosis.

An electrode is placed over gauze containing pilocarpine and electrolyte solution that will not interfere with the sodium and chloride measurement. A second electrode (without pilocarpine) will be placed at another site and a mild electrical current will draw the pilocarpine into the skin where it stimulates the sweat glands on his inner forearm.

The arm is carefully cleaned and dried, then a piece of pre weighed filter paper is placed over the inner arm and covered with cling wrap to prevent evaporation. Sweat is collected for around an hour. While phoenix is being kept warm with heat packs and warm blankets, being carefully watch so he didnt over heat and fit.

The filter paper is retrieved and weighed to determine the weight of sweat collected. Its then sent to Melbourne, while we wait for the results. If not enough sweat was collect, we need to resit the test.

Next week he will be under going an xray on his vertebrea to test for Alagille's syndrome is a condition in which the liver contains too few of the tiny bile ducts which are inside the liver. This leads to blockage of bile flow, which causes jaundice.

And then were off to Mater children's hospital to meet with the gastro enterologist, where he will preform a liver biopsy. Its possible the large bile ducts are blocked, the biopsy shows increased numbers of the tiny bile ducts present in the liver.

From there.. I don't know where we go.

So we just hold hope.. That we get some answers. That hes not in pain and theres ways to fix this.

9 weeks young it to little to have to go through so much testing.

We love you phoenix.