Riley Eve Casey

When I first started this blog there was so much to write about, in fact I think there was a period there where I would write every second day because so much was happening. Currently that is not the case. Riley has been given a nickname by the doctors and nurses that is beginning to stick; they keep referring to her as “the pretend patient”. All those drugs she needed to take? She is down to only one and it’s aspirin. All those stats they needed to get from her every few hours? They don’t even do it overnight anymore and aren’t concerned. At least any feeding or changing nappies? Well we do all of that so they don’t need to. If you are a nurse on the cardiac ward, you will barely have anything to do for Riley. The doctors come in for their rounds every day and it is turning into a time to have small talk with us because there is nothing about Riley to discuss. You can understand why there has been a push for Jess and I to take her to our accommodation full-time. Unfortunately th...

We have been told across this time that there are many things we needed to be prepared for. As if your child going through not one, not two but three open heart surgeries across the first few years of their life isn’t stressful enough; there are many other complications or issues that are a part of the deal. We had been told that when our daughter is born we wouldn’t get to hold her until sometime after her surgery, she wouldn’t be allowed to feed until after it as well, she may have issues being able to feed that could continue into her childhood, we wouldn’t be able to take her home in between surgeries and would need to visit her in hospital every day for months and the list goes on. People constantly ask us how we are handling it all; communicated in such a way that they naturally assume that we must be at our wits end or really struggling through all of this. I mean look at that list I just gave you, wouldn’t you be upset or struggling if you were in our position? I get it. O...

Something wonderful happened over the last weekend; Riley became tremendously boring (not to us though). We had grown somewhat accustomed to our little girl being surprising and sometimes even confusing. One day she would be doing fantastic followed by a day filled with worrying stats. All of that changed and I can probably even tell you the moment I realized this. I was sitting by Riley's bedside like I normally do and glanced over at what Riley's nurse was doing as she intently typed away on her work computer. I wondered if she was updating Riley's stats or filling in paperwork for the nurse who would take over from her. Turns out it was none of the above; she was googling the lemon detox diet. Our nurse who was assigned to keep a careful watch over Riley had so little to do that she was entertaining herself. A pattern began to form with the following nurses as they all seemed to not have enough to keep them occupied. They began to offer to help out the nurses beside us w...