Farewell 2010

A Moment of Reflection.

Well... 2010 is almost over... and looking back, it's hard to believe we have had such a HUGE year... and how much things have changed.

We are finally getting a handle on her health care... we have a wonderful paediatrician who is not only available to us when ever we want/need him, but he is willing to listen to us and work with us... her therapy teams seem to be pretty on the ball with things, and all in all, things are moving forward.

It's comforting, considering that at the start of the year the decision to move back home was made more on a basis that her health care certainly couldn't get any worse than what she had in Brisbane...

It's great seeing Nicola opening up to new people and allowing more people into her circle, even if they are only family. She is finally opening up to my Dad and willingly lets him hold her now... a far cry from the child who, a year ago, wouldn't even let anyone else look at her.

I can only hope now that next year is even half as kind to us as this year has been!

Farewell 2010... Welcome 2011!

A Scrooge Moment...

I am discovering that I seriously hate this time of year... it is nothing but a constant reminder that my daughter is not like everyone elses. Every day is a new slap in the face, and I hate it.

I hate it, I hate it, I hate it, I hate it!!!

I have spent 8 weeks trying to find something for Nicola for Christmas. I was lucky and scored some new clothes for her on sale, which she desperately needs... but looking for that really awesome Santa present... and nothing is suitable! I don't want to buy her 'yet another' baby toy because she isn't a baby! She's nearly two and a half years old dammit! I don't want to buy her another rattle, or another teething ring, or another stupid play mat! I want to be able to buy her something that has a bit of wow factor... instead, the best that I can come up with is a Big Red Car to go with her Wiggles toys that she loves...

And then, on top of that, is the constant need to keep reminding family members of what she can and can't use, again highlighting over nad over that my child is different to my nieces and nephews. My sister wants to buy her a jolly jumper and doesnt' seem to listen to me when I tell her that Nicola's hips are not stable enough to put her in a jolly jumper! That's why we had to stop using her bouncy round about thingy! The pressure on her hips was too much! Not to mention the fact that she doesn't have enough control over her body as a whole to use the damn thing, least of all on the trampoline where she expects her to use it!

And don't even get me started on the Christmas parties... I mean... to start with, there is the fact that I am constantly being asked questions about why she's so small and why she doesn't walk yet and why she doesn't talk yet and why she isn't like her siblings or her cousins... then, on top of that, there is the fact that everyone insists on scheduling their Christmas parties at night.

Nicola is in bed by 5.30pm! I have tried to explain that over and over but if I say I doubt we will be able to attend, I get made to feel like the worst family member in the world... so out of guilt I end up going, knowing full well that it means an absolutely horrific night for me because I'm stuck in the corner on my own trying to comfort a screaming child who is stuck in cyclic meltdown mode because she has been taken out of her comfort zone and out of her routine, not to mention that these parties are full of people she doesn't know which scares her, and they're generally noisy, which makes her head ache. Plus it is insanely hot and humid here and her poor little body just really cannot cope with the heat at all...

Then I have to put up with people talking about how she cries so much and she is not the bright and happy baby that her sisters were... Well, newsflash... WTF do you expect?!?!?!

When we finally do get her home, she's so out of whack that the few hours of misery we spend at the party means that she is completely beside herself for days afterward!

I am sick of it! I don't want to do Christmas any more!!!

I normally love Christmas, I really do! I love the whole season... but this year, I'm just over it. I am over the constant reminders of how different my life has become. I love my daughter, I wouldn't change her for the world... but this Christmas is just making me totally and utterly miserable.



Christmas really does bring out the worst in people! It is certainly bringing out the worst in me!

Home Sweet Home...

WE ARE GOING HOME!!!

Nicola's surgeon came in this morning... he told me he was not prepared to discuss her recovery, lest he jinx what is happening... but he has us booked on the 11am flight and we're going home!

Woohoo!

4 days post surgery and we're outta here!

Go baby girl!!!

Fear of the Known...

There are a lot of different kinds of fear... but I think I am learning that the single worst kind of fear is fear of the familiar... or fear of past experiences.

People are afraid of all kinds of things... but to be afraid of something that you have already experienced is a palpable fear made even stronger by the fact that you already know how horrific the experience is...

And this is the position that I find myself in now... I am afraid of reoccurance.

In September last year Nicola had to have surgery to have a gastrostomy button put in, and while they were in there they did a fundoplication. The gastrostomy was fine, there were no problems there at all... but because of an already weakened oesophagus, one tiny little stitch pulled... and that tiny little stitch nearly killed her.

When it pulled it tore her oesophagus and filled her plural cavity with air and fluid, collapsed both of her lungs, gave her pneumonia, and caused an infection so massive that she needed to be taken into theatre every other day to have them surgically clean the infection from inside her chest... that was on top of the two intercostal chest catheters that she had had surgically inserted to help stuff drain away.

She spent many many weeks in intensive care on life support hovering on the brink of death before she made a slow but steady recovery... months in hospital before we finally got to take her home again...

And then a couple of months after she was discharged, she developed a giant paraoesophageal hernia through her fundoplication... and we were given the news that the surgery had to be done again.

To say I am scared is an understatement.

It has been a year and I still wake up at night hearing the sound of the ventilators alarming on her ICU bed.

I can still remember how it felt to have the entire team of ICU doctors descend upon her bedside to tell me that *IF* my daughter survived the next 12 hours, then we would talk about what to do next... but it would be best to bring my family down now to say goodbye.

The thought of going through all that again... living just to get through every single hour and never knowing what was hovering on the next horizon... the thought of going through it again is a faint cold fear unlike anything I have ever experienced.

I do NOT want to do it... I do NOT want to risk it... but at the same time, I know I have no choice...

How do you prepare for something that may quite possibly kill your child? How do you willingly hand them over to the anesthetists, not knowing if you will ever get to hold them again... to look into those beautiful eyes, to savour sweet kisses and warm snuggly cuddles...

How do you go through with it when every fibre of your being demands that you run as fast as you possibly can in the opposite direction?

Well... I guess I will find out on Tuesday...

A Step In The Right Direction

Well... go find the biggest hugest piece of the solidest wood that you can find and let me touch it!!!

Because... touch wood... she came through the surgery well!

Her surgeon seemed very pleased with everything. She was out of theater and into recovery quicker than they expected and we only had a short stay in intensive care before being moved to the ward.

She has been having some troubles with post surgical fevers and they've done xrays and blood tests and so far everything seems to be ok... our biggest hassle is pain relief. They have her on some pretty hefty doses of morphine as well as paracetamol and some other stuff and none of it seems to be making much of a difference.

It's horrible watching her because she doesn't settle, she doesn't sleep, she doesn't want to eat, all she wants to do is to cry and fuss and scream.

The acute pain management team has been called in again and we're waiting for them to come and see if she can be given more, or something else that may help her calm and sleep.

They managed to use most of the incision points from the last surgery so she only has one new scar... which is a good thing for her, although somewhat superfluous considering how many other scars she already has on her poor little body.

But, all in all, I am really pleased with the position that she is in now... it is a hundred times better than what we had anticipated!

Now we just have to wait and see if she keeps up the amazing work!!!

The Terrible Twos

Being a mother to both 'normal' healthy children as well as a child with complex special needs, it gives me a bit of an insight into a world that can sometimes be very confusing and very confronting. I must confess that it is somewhat heartbreaking when I look at Nicola, who is now 2 years, 2 months and 11 days old...

I can't help but to compare her to Isabella, who at that same age, just last year, was astounding hospital social workers with her vocabulary skills, her ability to count, recognise colours, recite nursery rhymes and hold conversations with anyone around her... who could run and jump and skip and hop and dance...

And then I look at Nicola, who is non verbal and immobile.

She tries, I know she tries... she has audible sounds that she makes, some of which possess wordlike qualities and intentions, some of which are just babble... and she has her Makaton... she communicates effectively with us, because as her parents, we know her best... but the second anyone else is around, she clams up and goes back to her preferred method of communicating with the outside world...

Crying.

But, then, at the same time, there are moments that I am utterly thrilled that Nicola is who she is... like when her big sister Jessica, who is now 4.5 and quite the little Miss, gets her attitude on. She's taught Isabella well and when the two of them mouth off at each other, I can't help but to look at Nicola and smile.

There are times when I am grateful for the fact that she is developmentally delayed... I can revel in the knowledge that she will always retain a little bit of her innocence... that she will always be my sweet little baby girl...

And on those days, every now and then... she likes to surprise me.

Having a particularly bad day with the big girls who were tired and cranky and fighting each other, as well as fighting me, at every possible opportunity, I must confess that I was relieved that Nicola had woken up from her nap. I put ABC Kids on for the big girls and left them to go square eyed for a little while and went into her bedroom, scooping her up from her bed and smothering her in kisses, savouring the sweetness that is my beautiful little baby girl.

Bringing her out onto the lounge, I laid her down on the couch and sat down with her to have a chat and some tickles while changing her nappy, as we always do... and immediately she flipped over onto her side to watch The Wot Wots with her sisters.

I turned her back onto her back and within a second she had flipped herself back to the tv again.

I said to her; "Excuse me, I'm trying to talk to you!"

Her response?

She cast me the most withering look you could possibly imagine and immediately held out her hand.

Her communication was clear.

"Stop."

I guess it just goes to show several things...

* A mother can never lure attention away from The Wot Wots...
* Attitude can assert itself at any point...
and finally...
* Even developmental delays aren't enough to keep the terrible two's at bay!

Sleeps Not So Sweet.

So... Nicola finally got her sleep study...

What can I say?

Other than... not at all what I expected!

We flew down that morning and transferred across to the Mater Childrens Hospital where we did all the admission stuff and sat down and spoke with the ENT specialist about her syndrome, her medical history etc.

At 4pm they gave us an hour of reprieve so I was going to run across to Subway to grab something to eat, but I ran into her paediatric surgeon in the hall who wanted to talk to me about Nicola's hernia and the surgery she needed for that.

Thankfully I did manage to grab a quick bite after talking with Craig otherwise it would have been a REALLY long night!

At about 5.30 we gave her a bath and they hooked her up to all the monitors and then I put her into bed.

Honestly, I didn't expect them to find much of anything... she had a BEAUTIFUL night's sleep! If she slept like that at home I would be a very very happy Mumma! I even rang my husband at home and told him that she was sleeping so well... no snoring, no gasping or choking, nothing... just a nice night's sleep!!

The next morning, after *I* tossed and turned all night long, the ENT specialist came in and had a chat with me.

I told him that she had had what I thought was a brilliant night and how it was so typical of her to have a good night's sleep when I'm trying to prove how bad she usually is.

He was amazed.

Medically, her sleep study was a disaster. He said that in the 12 hours she was connected she achieved less than an hour and a half of actual deep sleep. She stopped breathing on average of every 3 minutes or so, and through the whole night, her entire oxygen saturation levels rarely rose above 80% and she had constant nasal obstruction.

He thinks her tonsils are far too big and are obstructing her airways through the night and that her adenoids are permanantly blocking her nasal passages.

For the first time ever I have been taken completely and utterly by surprise when it came to the results of a test. Normally I have been the one pushing for testing because I felt there was a problem, but this time I was sure they wouldn't find anything!

So now the grand plan is to go back to our ENT specialists at the Royal Childrens and get her put on the waiting list for T&A surgery. After the surgery has been done they will give her a few months to recover and then do another sleep study and see if there has been some improvement. If there hasn't, then they will have to refer her to other specialists for more tests to be done.

*sigh