Skip to main content

Life after Hospital

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 to go with the flow and enjoy being a parent. But that doesn't mean it wasn't without any little bumps along the way. About a week after we had been home, Riley stopped feeding properly. She would keep refusing to eat much at all but seemed to be absolutely fine with that. Our minds went into overdrive as to what the reason could be for her lack of hunger. We even rang the Mater Cardiac Service to ask what they thought but it turned out to be a lot of worry for nothing. She was teething. It was almost like she just wanted to keep us on our toes because we seemed to be enjoying having her out of hospital too much.

Life since then has been really good. Riley has just been a normal baby and we have been putting our focus on dealing with all the normal milestones that come with babies. She even had her first appointment a couple of weeks ago with her Cardiologist Dr Justo here in Mount Isa and he said that she hasn't skipped a beat since leaving Brisbane which is a relief. Before you think she is perfect without a care in the world; she still has a cough and even sometimes does a wheezing noise while feeding that does make us raise an eyebrow. We are hoping to get it checked out in Brisbane in a couple of weeks to just make sure nothing is out of the ordinary there.

But I guess the thing I want to encourage anyone on a similar journey to us is that after all the surgeries, tests, oxygen sats and all of the unpleasant stuff you have to watch your child go through in the hospital; they shoot you a smile that says they are alright. And that smile you wouldn't trade for anything in the world. There is a normal life waiting on the other side. All those things I thought I would worry about or obsess over, you seem to let go of. I do still use hand sanitize more times than I care to mention everyday but I have managed to let all our friends and family get a hold without worrying about them giving her a cold or something. You just learn to hold onto the things that matter and let go of the things that don't. We have had a couple of friends of ours have their children go through open heart surgery over the past few days and it makes us appreciate the stage we are at right now. It stirs up all the memories of what we have been through and honestly our hearts go out to them because it is something we wouldn't want any family to go through. 

 It's a relief to be on this side of the journey right now where Riley's only concern is when someone is going to feed her or wanting hugs from Mum and Dad. Life is pretty good and we can't wait to see our friends get to experience the same thing as well.

Comments

Post a Comment

Popular posts from this blog

Surprises

Some of you may know this and some of you may not but we have a very special little girl. We haven't met her yet, haven't even gotten a hold but we know that she is special. We got our first glimpse of her when she was only eight weeks old, at that time she looked more like a blob. Not human-like at all. But we knew she was was going to grow into someone beautiful. Our next glimpse was at twelve weeks then twenty week mark, we were looking forward to this scan because we had always planned to find out what gender our baby was. We didn't like (or more like probably I didn't like) having to wait and see, at least we could start preparing. What we were not prepared for was that the sonographer struggled to get a good look at the heart; she got Jess to take a walk, move all around, come back a few times until she got a very good look and I am thankful that she did. She let us know that she had concerns about what she was seeing and decided to let another sonographer ...
3 comments
Read more

Love

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 ...
2 comments
Read more

Moving to the Ward

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...
1 comment
Read more