Saturday, November 27, 2010

Home Sweet 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!


4 days post surgery and we're outta here!

Go baby girl!!!

Saturday, November 20, 2010

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!!!

Friday, November 12, 2010

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...


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.


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!