Tuesday, 20 March 2012

So Many Emotions

Twas the Night Before World Down Syndrome Day

Here we are on the Eve of World Down Syndrome Day. Tomorrow is a day to celebrate people with Down Syndrome. I can't wait to share it with our precious little man. His life has blessed us more than we could ever say.

I have been asked to do a radio interview about Felix tomorrow morning as part of the World Down Syndrome celebrations in our part of the State. I feel honoured to do this and look forward to sharing about our life with Felix and the joy he has brought to our lives.

Felix and his little buddy, Jacob, appeared on the front cover of our local paper today with a great story about World Down Syndrome Day, encouraging acceptance and to raise awareness about Down Syndrome and what it is to live with someone with Down Syndrome.

Our Hospital Visit

We travelled to the city on Sunday for an appointment Felix had on Monday at the hospital.

Felix had to fast from 7am in the morning, so we had an early start at 6am to wake him and feed him his breakfast. We arrived at the hospital at 11am and sat in the day surgery waiting room until his name was called at 2.30pm. All the kids in the room (and there were dozens of them), were fasting. It was incredible how settled they all were considering how hungry they were. There were volunteers handing out balloons and hand knitted teddy bears; there was colouring in and crafts, lots of toys and even clowns! We were very impressed.

Once Felix's name was called, we took him to get dressed in his little white gown and walk him down to the MRI unit. My husband and I were both able to go into the room with him, which we were thankful for. I held him as the anaethetist put the mask on his face to make him sleep. We both kissed him goodbye and left. It's never a nice feeling to hand your baby over to a complete stranger and then be told to, "Go and have a coffee", but after sitting at the hospital for many hours, we went to grab a quick bite to eat.

As we were heading back into the hospital to wait for Felix, I saw something that made my day. A gorgeous baby boy with the same almond shaped eyes as Felix; his tongue protruding from his mouth just a little bit, the way Felix's does when he's tired. A little boy with Down Syndrome. I couldn't help myself. I had to go up and say how handsome he was.

The MRI of his orbits and brain took an hour and a half. We were so thankful to see his tiny little face as they wheeled him back to the recovery ward when they were finished. He looked so small on that huge bed. He was a bit unsettled, but after some cuddles with Daddy he was happy. He wolfed down some yoghurt and a banana and we were able to leave. We had to stay overnight in the city in case there were complications.

Not the news we wanted to hear

We did the 4 hour drive home today in good spirits. Everything seemed to have gone well and we were quietly confident the results would be good.

An hour after we arrived home, the referring Doctor called us with the results. The orbits of Felix's eyes are equal size and not too small so she was happy with that, BUT.... there was that dreaded word again...Hydrocephalus! The ventricles in Felix's brain are enlarged just as they were when I was pregnant! She said various things like, "Can't be left unchecked" and "Very important it's followed up." (We immediately phoned the Paediatrician to make an appointment.)

This news was not what I expected to hear. I was speechless. It's been a few hours now and it still hasn't completely sunk in. I am trying to think best case scenario. Maybe the level of fluid in his brain is going to stay the same and not get worse. He is developing well and doesn't seem to be suffering any ill effects from it. Twice during my pregnancy I bled and thought we would lose him, and later we were told the levels of fluid in his brain would probably be fatal. He survived all that. He is meant to be with us. He is a fighter and he is our little miracle. Just for now though, I think I will have a good cry and then look forward to tomorrow. It's World Down Syndrome Day; a day to celebrate Felix's life.


  1. Beautifully written, Kylie. Brought a little tear to my eye, he's such a brave little man.

  2. Thank you. He's such a little trooper! I'm sure he will surprise us once again... he is a tough little guy :)