Riley Eve Casey

We are fast approaching Riley's first birthday in just a few weeks time; what an unbelievably crazy thought!? It feels like a lifetime ago that we were anxiously waiting in Brisbane for her arrival. I even remember when we were in the theater and I was sitting next to my wife holding her hand; very nervous because I was about to be a dad and also the fact that the day was not turning out the way we had planned. The doctor lifted Riley up into the air to show us and it finally hit us that we were parents. I have photo's of the event that I don't think I have ever really shared with anyone because Jess and I would look at it and say "Aww look at her" whereas everyone else would look at it and say "Eww look at that!". Needless to say a freshly newborn baby does not look the way that you would expect from Movies and Television. But she was ours and she has been ours for almost a year. What can I say about our little girl since I last shared on thi...

It's the dream of every Heart Kid parent to take their child back home and experience a somewhat normal life; a dream that we are currently in the midst of. The idea of taking Riley back home with us to Mount Isa was both scary and exciting. Exciting because we could finally just take care of her without the worry of a surgery looming on the horizon (or at least not any time soon) but scary because we were completely responsible for her now and that includes paying attention to any changes in her behaviour/health. I had all these ideas about what I would be like such as constantly using hand sanitizer, keeping everything pristine clean, being very wary of who held her simply because they might have a cold. So what is life really like on the other side of hospital? Completely different than what I expected. Somehow from the moment we brought Riley home everything just felt normal. We didn't stress out or worry over her concerned that something may be wrong. It was just easy ...

At the beginning of this week Riley was a mess. A complete and total mess. The pressure in her head from all the extra blood flow had driven her up the wall and for anyone who wasn’t here with us, it was becoming increasingly difficult to explain it in a way everyone could understand. We would put up posts saying that Riley was “Irritable” or “Cranky” and it would in no way do justice to what we were seeing. There was even one point where we genuinely believed that maybe this is just normal baby behaviour and we aren’t handling it well. Thankfully the nurses and doctors confirmed for us that this was far from normal baby behaviour. So the question on everyone’s minds was “What is the solution?”. Dr Gooi had many ideas; Firstly he believed it could be reflux and put her on some medication for that. Made no difference. Then he thought maybe she has oral thrush and put her on something for that too. Failed again and the list went on. Meanwhile we all knew in the back of our minds ...

Our week with Riley has been a bit hit and miss unfortunately. Lately we had been planning for what happens next; how could you not when you have doctors confidently telling you that you will be out of the hospital by the end of the week? We had already decided that we would stay in Brisbane an extra week after she is discharged because we didn’t want to just rush home straight away following a major surgery like the Glenn (which when we told our doctors; they were all in agreement on that one since Mount Isa is so far away and doesn’t have a dedicated cardiac unit). We began thinking about all the things we could do during our week like maybe we could go to the museum, we need to shop for some winter clothes and of course all the places we could go to eat (I will miss Mexican most of all, can someone open one in Mount Isa before we get back? I would be forever in your debt). The only hurdle in our way to showing Riley the sights was that Riley needed to get herself out of hospita...