For most people living in New South Wales, the month of December 2019  would be remembered for the fires of Black Summer. It was the summer that saw much of the state ravaged by fire and thousands of people affected. For us, December 2019 was more than that. While fires burnt around the state, and around us, we were coming to terms with the fact that our little 4 month old girl had to have heart surgery.

We had been out of the hospital for 8 and a half weeks. Hope was doing well, but our continued trips and checks of her heart made it more and more obvious that there was no way out of the surgery. We had a few appointments with the cardiologist who had to make the decision about when would be the right time. I really don’t envy the doctors who have to make these decisions. Imagine looking at two tired and worried parents and telling them surgery was needed, but also telling them it was too soon and couldn’t be done just yet. And then imagine doing that multiple times a week and watching the look of desperation or frustration show on their faces. I remember walking out of the appointments and saying to Ben, “If she needs surgery, why don’t they just book it and do it?” We were tired, frustrated and honestly over it. For the past six months, we had spent more time in hospitals than we had at home, or at least that’s how it felt.  Now every time we went to see the doctor, we were told the same thing, “Hope needs surgery, but we’re not going to book it yet.” It meant more visits to hospital, more scans, more telling us the solution, but never any action. The problem was, with Hope being so little, it complicated things. Another complication was the pressure in her lungs. If this didn’t come down, it could make the operation more risky.  Eventually, we heard the words we had been longing to hear. “Let’s book the surgery.” We met with the surgeon in early December, and the operation was booked for the 16th December.

This little girl has been through so much and has never given up fighting.
We need her to fight once more, she needs to face the the biggest, scariest fight yet.
On Monday, Hope goes into surgery on her heart to close a valve that should of closed when she was born.
We have know this could happen since she was 5 weeks old. Hope is getting less and less energy and her feeding is now effected, the doctors agree it’s time.
This surgery obviously has risks, so I beg you to keep Hope in your hearts and prayers, for a successful, safe surgery and a speedy and safe recovery.
This little girl has been through more than enough in her short life time, she needs a break. Hopefully after the surgery, things will look up and she can finally just be our little baby girl

That was Ben’s post on Facebook a few days before surgery. While we wanted the surgery, we were still scared. She seemed so little, too little to have surgery. Surgery can be risky. Any medical procedure can be risky. Anyone who has had to go through surgery, or have a child go through surgery, you know that most of the time everything goes well but, there’s always that small part of you that wants to focus on the small number where things don’t go as planned.  As much as you tell yourself things will be fine, that fear, that worry, keeps creeping in.

At the same time as being scared and worried, we were also so ready and excited for her to have the surgery. Having it meant that we could start to just enjoy Hope as Hope and we could start doing more with her. We wouldn’t have to worry so much about whether she was getting enough rest, or if she was resting too much. We wouldn’t have to wonder whether her oxygen levels were up or down, or what her lung pressure was like. We could start working with her to build her muscle strength, because she really didn’t have a lot of muscle and with the heart issue, we couldn’t do a lot to increase it. It was really a huge roller coaster ride for those first few months and we were ready to move on from it.

On the 16th of December, we went into Westmead Hospital for Hope’s surgery. Once again, memories of the day aren’t super clear. I know it happened, I know we waited and we worried. We couldn’t go in the operating room obviously, so we just had to wait for the doctor to come out and tell us everything went well. I do remember sitting in a small room, waiting for the doctor. We had heard that it wouldn’t be long, but that wait felt like forever. The longer we waited, the more we worried that something had suddenly gone wrong. It was a relief when the doctor finally came in, told us Hope was fine, she did really well and she was in the recovery room. We would get to see her very soon.

When we went into see Hope after her surgery, everything was explained about how she was recovering. We were shown where her scar was and told what to expect over the next few days. As she didn’t have open heart surgery her scar was towards her side on the back of her chest. It was quite long, and on such a small child, it looked huge. That scar is now a reminder of how much she went through and how much of a fighter she was through those first few months of her life. We were told Hope would likely be in hospital for 4-5 days, a couple of days in a more special care post-operation ward, then moved to the general ward for a couple of days. We were expected to be going home by Friday.

Now… remember those fires I mentioned at the beginning. The Gospers Mountain fire started in October and was quite a distance away from us. In most cases, you would think that we would be safe from it, and it would be out before it got too close. Well, this time, weather was crazy and the fire wasn’t in the best location to easily get to which meant, the fire kept burning, getting closer and closer. The week that Hope went into hospital for her surgery, the area we lived in was on high alert with the potential for evacuation. Not only did we now have a child in hospital to worry about, we had to find somewhere for the rest of the family to stay safe if the fire got too close. On top of that, someone complained to the real estate about the leaves on our lawn being a fire hazard. There are leaves everywhere on everyone’s lawns but we did our best to deal with that as well. We had a lot going on that week.

While talking with Hope’s nurses and doctors at Westmead, they said they could not send Hope, who has just had heart surgery, home when it’s not safe, and potentially very smokey. They told us even if she was well enough to go home, they would keep her over the weekend to ensure things were safe for her at home. This was a big relief for us. While it meant longer in hospital, it was one less worry. What we didn’t expect was for the nurses to come to us some time near the end of the week and tell us they had arranged a family room at the hospital where the entire family could stay free of charge for the weekend. They wanted to make sure we were all safe. These rooms are generally for long term patients families, and usually have a small charge for staying there. The fact that the hospital waived these fees for us to ensure we were all safe and could be close to our little girl really surprised us and we were so grateful.

You could probably say that the heart surgery was the end of that chapter of our lives. It was the final step needed for us to get on with life as normal as possible. It didn’t mean the end of doctor visits or checkups. It didn’t mean life was now going to be easy. But it was the end of a large amount of worry, it was the end of sleepless nights. And we could now move into the next part of our journey with Hope.