Riley Eve Casey

Being a parent while your child is in the PICU can be difficult. Besides the obvious emotional rollercoaster you are on watching them go through challenges; your ability to assess what your baby wants or needs is a little harder to gage. Take for instance if you are at home with your child and they start crying; you immediately brainstorm what could be wrong. Could it be the nappy is dirty? Could it be they need burping? Could it be that they want to be held? Could it be that they are just being difficult? Sometimes you figure it out, sometimes you don’t. We have a lengthier list for Riley. Could it be that she is having difficulty breathing? Could it be that her chest drain is tugging and making her uncomfortable? Could it be that she is bruising from all the needles she has had to have? And the list goes on. It can be a little worrying when she starts to go blue from all her crying but somehow we manage to get her to calm down. Either we are getting better at this parenting thin

No More Surprise Surgeries....that was the last line of the last blog I wrote. Almost immediately after posting that we got a call from the PICU letting us know that her oxygen saturation levels had dropped again and she wasn't doing well. The doctors unfortunately could not put their finger on the reason for her behaviour. It looked like a doctors convention was taking place around her bedside with everyone putting their two cents in on what it could possibly be. We just sat there patiently waiting for their final conclusion. Eventually we were ushered into the parents interview room where one of the doctors let us know their plan. They intended to have Riley go into Theatre the next morning to do a Cardiac Catheterisation Procedure which involves threading a tube through one of Riley's vessels all the way to the heart to inspect whether something needing to be fixed. What made it worse was when he read through all the potential risks and complications that can occur doing a

Wednesday was going to be a big day, we just didn't anticipate how big it really would be. It had finally come to the morning where Jess' parents were going to leave which we weren't really looking forward to but it had to happen at some point. Martin and Jan are the kind of people who will bend over backwards to help people in any way they possibly can and so they had been somewhat of a lifeline for us through the ups and downs of the past two weeks. Every night they would have dinner prepared for us so we wouldn't have to cook, they would occasionally clean our unit, would go grocery shopping for us, drive us anywhere we needed to go and of course they would be there for all the good times and the bad. We were going to miss having them around. Our picture of how it would all go is that they would maybe sneak in a quick hold of Riley, we would say our goodbyes, maybe shed a few tears and then they would begin their long journey back to Mount Isa. Instead what happene

Parenthood can be unpredictable at the best of times but being a parent of a child with a congenital heart defect can be downright confusing. We have noticed a trend with our little girl that can drive us a little bonkers. See Riley has a habit of defying expectations that are put upon her and then once she has achieved it, she decides that she wants to take a break and allows herself to slip. We had a win on Thursday when her stent was removed and her chest was closed. We celebrated. Following that we had a fairly good day on Friday with all the doctors stepping in to assure us that Riley would be all set to have her ventilator removed on Saturday. But what happened next? Yep you guessed it, she decided to take a break from progressing in a spectacular way. Her oxygen levels started to drop and her nurse began to take notice because the figures were beginning to become worrying. After some assessment they realized that part of her right lung had collapsed. They couldn't really e

We experienced our first sting of disappointment yesterday. Riley post surgery on Tuesday was an over-achiever. We had been told repeatedly in the lead up to her surgery that Tuesday would be a hard day; she could be all over the place with her stats and we should just be prepared. So imagine our surprise when Riley didn't give them any grief. She was recovering so well that the Intensive Care doctors kept saying to us that they were considering removing her stent (the stent fills the space of about 3cm of where her chest is apart, a temporary cover) and closing her chest the very next day. You can imagine how proud we were of our little girl. Some parents are proud of their child's macaroni necklace or finger painting; we are proud of our daughter having a good heart rate and blood pressure. It's strange how different your priorities are when your daughter has a heart condition. After a stellar day, we slept very well that night. So if on Tuesday she was an over-achiever

We woke up bright and early on Monday morning at 5am, our plan was that prior to surgery (what is technically called The Norwood Procedure) we were going to try and fit in as much time as possible before Riley would be taken away. Upon arrival the nurse on duty immediately made sure we got a good amount of time holding her. We always say to them "If you need to do anything please go right ahead; don't worry about us"; concerned that all of our time wanting to cuddle Riley is interfering with their work. However they always without fail want us to hold her. I think it's because Riley always seems so settled when she is in our arms. She just loves it. Very soon all the doctors arrived to collect her. I was a mess. It is a very hard thing to know your daughter who you have barely scratched the surface of knowing is about to have a very complicated surgery. So right before they took her we asked them if we could pray with her and they allowed us a moment to speak hope for

Oh where to begin?? Riley is incredible. That's a good start. We are so in love with this little girl and couldn't be happier that we have gotten to spend so much time with her. She started her journey at the Neonatal Critical Care Ward and within a day of being there they said she was doing well enough that she could be transferred over to the Children's Hospital. How I found this out though freaked me out a little. I strolled into the Neonatal ward to see the Doctors and nurses fussing over Riley saying things like "We will arrange her to be moved in an hour" as they were packing things up around her. My initial thought was "What's wrong??". But the move was a good thing for a few reasons. One is that she was going to be transferred there post-surgery anyway so it helps us get used to it. Another reason it has been fantastic is that they are a little more flexible over at the the Childrens Hospital PICU. Upon arriving there with Riley, we were

It's been a big couple of days. I apologize if this turns into a long one... For the past couple of weeks we had a plan in our head of how things would go. Firstly we would go in on the Wednesday night and they would try to help Jess dilate in order that they could break her waters and begin inducing her. Turns out as we arrived on the Wednesday night that Jess' body didn't need any assisting in that department . We were sent home and asked to come back at 5am the next morning so they could start the process. We took this as a good sign; if Riley was already getting prepared to make her exit before anything happened then surely on Thursday it would mean that the labour would be quicker? Right? We asked the midwife how long she thought the labour could take on Thursday. Her reply was "How long is a piece of string?" meaning 'who knows'.  Needless to say Thursday was a very long day. Jess handled the labour like a champion of course starting at around