Alice's Story

The following story has been provided to us by Alice's family and has been included exactly as received.

Alice Lee Emeny arrived via emergency ceaserean due to having no amniotic fluid left on the 17th December 2008 at 17:17 at Gympie Hospital.  I could hear her crying and had a look and all looked well to me.  But when I eventually got wheeled upstairs to the ward I heard the nurse say to my partner Scott, are you going to tell her or should we?  I was thinking...tell me what??  Scott explained as best he could that Alice was having a little trouble breathing, but they where working on her.  Not to worry.....yeah right!  I could not see her and but could hear her screaming.  This bothered me a lot.  The doctor came in after what seemed an eternity and informed us that a helicopter was on its way from Brisbane to pick her up and taked her down to the Royal Children's Hospital ICU.  So around 1am 18th December I heard the helicopter take off.

The next day Scott was torn as to whether to stay with me or go to Alice.  They could not find a bed for me in Brisbane so I had to stay whether I liked it or not.  I told Scott to go, and then the relay of messages began.

Pierre Robin had been diagnosed.  I was thinking ok, so it has a name, but someone please explain!!??  The nurses knew very little, so got on the internet and got me whatever information they could.

By the following day, I had had enough and left for Brisbane with my father in law driving me.  (Brisbane is a 2 hour drive away from Gympie - and we live a further 2 hours drive from Gympie in Gayndah)

When I got to the ICU they had a nasopharyangeal tube inserted and a nasogastric tube.  It was a blur of specialists coming to prod and poke, but they all took the time to explain everything.  I learnt quickly to write down any questions no matter how stupid they were, so I could ask them next time I saw them.  After 5 days Alice was put in the ward and stayed there a further 2 weeks.

In this time we learnt how to insert the tubes ourselves. Pretty daunting at first, but living so far away from medical treatment, it was a must. The first time we had to change the tubes ourselves I was nearly sick in the belly from fear.  We didn't have the doctor standing behind us to step in if need be.  We where on our own.  It got easier and easier after that first time.

I'm not a patient person, and just wanted her better, but all of this takes time.  Her feeding was nightmarish at times, but you just learn to cope.  Think positive and maybe the next feed she will take more.

We have now all survived the pallette surgery.  And it is a matter of taking one step at a time.  They might only be baby steps and you may take a few backward ones from time to time, but you will get there.  There are still specialists appointments to come, and when they will stop, who knows!

Charmaine, Scott, Sarah and Alice.