CHD Sucks!

CHD Sucks!

Long time readers of my blog will know that my daughter Katie has a Complex CHD (Congenital Heart Disease).

Katie was born with a complex condition called Tricuspid Atresia which caused HRHS (Hypoplastic Right Heart Syndrome) it’s caused when the tricuspid valve is either not formed or fails to grow correctly, which then causes the right ventricle of the heart to not form properly or not grow at all.

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Babies born with this condition need a series of life prolonging surgeries (HRHS can’t bee corrected or fixed). These surgeries collectively are called The Fontan.

While the above is a very basic description of Katie’s condition it’s really all that you need to know to read this post. Even to this day I still struggle to understand all the complexities of her condition, most average parents do.

Anyway, one of the side affects of the life prolonging surgeries is that some children develop rhythm issues in their hearts. Their little hearts have undergone at least 3, if not more major heart surgeries and its creates scaring on the heart. These scares can interfere with the electrical systems of the heart and cause long-term issues with the functioning of the Fontan and the surviving Left Ventricle Some times this happens right away, sometimes it happens due to growth of the heart and sometimes they do not really know why.

Over the past few years we have had what most call a dream run with Miss Katie’s health, it’s the kinda like almost too good of a run……the kind that keeps CHD Mummas on the edge and thinking can this be real…..(other CHD Mummas will get this!).

Then Miss Katie had her routine 6 monthly appointment with her Cardiologist in August last year, he noticed a few changes on her ECG, and he suggested she have a 24 hour Holter Monitor test done.

The Holter Monitor in is a mini ECG monitor that is connected to you for 24 hours, while you go about your normal activity and it records what your heart does in that 24 hours, its then taken back to the hospital and analysed.

She had that done and we returned home, and heard nothing. We knew the Cardiologist was away for extended leave but presumed we would get a call from our local GP if anything was wrong.

One thing I should have learnt by now as a CHD Mumma is that you never presume anything.

Lets just say that on return from his leave our Cardiologist found a report on his desk and called us to say things are not okay……..

CHD SUCKS, it really does.

It kicks you in the stomach, it knocks the wind out of your lungs and as a mother it NEVER EVER gets any easier to hear that your child is not doing okay.

Miss Katie has some issues going on, we are not really sure how bad, her Cardiologist is fairly new to us, I can’t read him like I could Miss Katie’s old one, the amazing Dr J who had been with us from the minute we decided to make her our daughter……He stood alongside us for a long hard journey and he was very up front, very honest and very practical and I liked that. Our new guy is good, I just haven’t learnt to read him and I think he is having issues understanding me. I need up front, honest…..don’t sugar coat it, don’t think you have to protect me…….I need it real so I can deal with it.

Being called at home by your Childs Cardiologist always fills me with fear, but this time is took the wind out of me…I had stupidly thought everything was okay when we heard nothing……..Our good run health wise had come to an end.

As I mentioned Miss Katie has several issues going on and although we do not know how bad at present, we know that when your Cardiologist says “plan on a week stay in the city” it’s never good……..or maybe I am just preparing for the worst, maybe after all these years, I am losing my ability to look on the bright side, maybe I am just real, maybe I am broken by CHD……who knows

………..but I have this sinking feeling and I am rarely wrong, don’t get me wrong I want to want to be wrong………but CHD SUCKS, its evil, it takes our babies, our children, our sisters, our brothers, our aunts and uncles, its takes our friends……. and it’s hard to shake that feeling of dread that comes with “plan on a weeks stay” because that often times means 2 or 3 weeks, it often means issues, big issues…….I really hope I am wrong, I hope CHD proves me wrong for once.

I am trying to be positive, Please pray for us, please pray that CHD will lose again and that she will smack it down and keep moving forward. Miss Katie is such a fighter, she has won the battle with CHD so many times…….she is my joy, my precious beautiful girl and I need her to win.

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What’s Remote Living really like?

IMG_4927I get asked this question a lot, so I thought I would start a series on my blog about what its really like to live in a remote community.

I will share a piece of our life every week, you will get a glimpse of the funny, frustrating and to be transparent, the not so great things about living in a remote community.

This week I am going to share just how remote we live:

So when I say we live remote, people often do not really get that I mean “REMOTE”. I will get comments like “Oh I used to live remote, I had to drive 2 or 3 hours to the City” erhhh NO thats not remote that is living in the Country.

WE really do live in a remote community. We live at the very tip of Australia, you can’t go any closer to PNG without heading out to The Torres Strait Islands. Our community is roughly 1000km by road( or the Track as we call it) from a Major City/Town, this Road Track is usually not drivable for about 4-5 months of the year due to the wet season which for the NO Tropical Living Aussies is December -March.

When we can’t get in and out by Road, we fly!

Above is our current Airline, a Charter service being paid for by the government because our long standing airline went into receivership.

This is our life line at this time of the year, and for people needing to see Dr in the City all year, so losing our Airline has NOT been a fun time for anyone here.

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Over the last 2 years, Our kids have got some serious Frequent flyer miles up. We fly a few times a year to Cairns and once or twice to Brisbane to visit family.

YES that is my 3 year old reading the safety card, she does it every time we get on a Qantas flight LOL.

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Flying isn’t much fun anymore, we are all kinda over it, but its just part of living here on the Cape so you just learn to deal with it.

I guess one perk is; not many people these days can say they have sat and watched the controls on their plane as it lands.

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Be safe,

Nicki

Sarah’s Tribute

I have been honored to follow the blog of Nora Rose, a precious baby girl born with a very rare condition, she and her family have been an amazing joy to get to know over the last 2 years, via the amazing blog posts her Mum Aleisa shared with us all via her blog “I will Carry you”

Last week Nora passed from this world to the next surrounded by her loving family, I can’t tell you how much I have enjoyed this precious babies updates, sharing in the joy that was her life.

We will all miss her so dearly, we will miss her Nor Nor updates, the joy and love her family shared with us, the witness they all are.

This was Nora Rose’s Aunties tribute to Nora at her Funeral service, I think its speaks volumes of the joy and love she brought to everyone she touched.

Rest in peace precious Nora Rose

Sarah's Tribute.

Hugs your babies close,

Nicki

My Little Blog

Yeap I am neglecting this little blog again and really have no excuses.
Recently I have recently found out that a few people have learn’t alot about Cape York though this blog and even followed us before they moved here. I have to admit I was kinda excited to know anyone is following here on my Little Blog…….let alone that I helped in some small way to make their transition easier.

So because of that I thought I would try my hardest to update here on a more regular basis. I really had no idea people would want to hear about our everyday.

Also if there is anything you would like to know about, PLEASE let me know by sending me email or go over to the facebook page and I will to my best to do a blog post about it.

Keep Safe and Love every day
Nicki

Hello My Name is Jack and I happen to have Down Syndrome

So most of you by looking (or not) at my Second Eldest son’s picutres would of likely realised he has Down Syndrome…….I do not talk about it much because well, its really a NON issue for us for the most part. Well that was until recently when all over the so called modern world a movement to make kids like Jack a thing of the past started to build a small amount of support.
I am not going to go in to right now, but it woke me up, it made us as parents realise that if we make DS a non issue people will not only not see Jack for Jack but, also not see him as the amazing vibrant teenager that he has become…….
We personally think that parents being offered a “choice” earlier and earlier in pregnancy need to see that DS for the most part is really only a very small part of who our kids are…….SO I am going to document Jacks life more, I have also started a facebook page Called ******Hello WORLD – Jack Speaking****** I will put a link to it up shortly.

Jack really just lives a ordinary life, but I guess that is just what alot of expectant parents want to hear/see.

So come join us on the facebook, share it with your friends……and lets Celebrate being having Down Syndrome and lots of ordinary!!

Jacks Second Place Medal from a triathlon he recently competed in.
Jacks Second Place Medal from a triathlon he recently competed in.