Riley Eve Casey

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