Little Miracles

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. Only problem is we aren’t struggling, in fact things are going really well at the moment. That list of issues we were prepared to encounter hasn’t been our story and for that we feel blessed and truly thankful

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We moved onto the ward for real a week ago; out of the close observation section and into a room. The nurses were actually very kind to us and gave us a private room; they told us it would only be for a night and then move us into a shared room with two other patients. It’s been over a week now and they don’t have any plans to move us unless a patient comes in that needs isolation. We are happy if they need to move us but grateful for the privacy that they have given us. After this milestone we put our energy into taking care of Riley and working on her feeding. One thing you may not be aware of with heart patients is that feeding can be a really big issue. Not only have the babies had all their feeds through a tube for the first few weeks of their life but they also could have difficulty finishing their feeds. When they do begin breastfeeding/bottle-feeding they can get exhausted much quicker than a normal baby and not get an amount that is good enough for their needs. Jess had always pushed hard for Riley to start feeding properly as soon as possible; worried that the longer the doctors put it off, the harder it would be.

Finally after weeks of being told we weren’t allowed, we got given the green light to give Riley a bottle just to see how she would go. Riley was ferocious with it. She devoured as much as she could and when we tried to pull it away from her she was not a happy camper. The speech pathologist was astounded by this. She eventually let us solely bottle feed her and that lead to her feeding tube getting removed because it wasn't necessary anymore. Some babies go home after all of this still needing a feeding tube so we were over the moon as you would expect. Currently Riley is breastfeeding and is having absolutely no feeding issues whatsoever. The Speech Pathologist describes Riley as a “Wonder Baby” because her progress in this area is not normal. 

But that wasn’t the only big thing to happen to Riley this past week. In fact this one we are just as excited about. Our Cardiac Surgeon Nelson let us know an idea he had been contemplating for some time and wondered if we would be interested in being the guinea pigs for it. That idea is for Riley to leave the hospital until she is ready for her next surgery and come live with Jess and I. When he first said it to us we of course responded that it would be incredible if it could happen. We had heard about things like that happening in Melbourne and even overseas but this had never happened in Brisbane before for Babies like Riley. We at first thought that even though it was a great idea, it might not occur because there would be so much to organise and get approved before such a thing could take place.

We realized Nelson was very serious about making this happen when we ran into him that very afternoon and he had already visited where we were staying to see if it was close enough to the hospital as well as whether it would suit Riley’s needs. To make a long story short; if things keep going well with Riley, we have been approved to take her to our accommodation with us and care for her full-time. If we do well at this then it means that future families will be afforded the same opportunity too. As if looking after our daughter full time isn’t incredible enough, our cardiac surgeon went an extra mile for us. He felt like he wanted us to stay somewhere even closer to the hospital in a place that they could book out indefinitely for families like ours. So he spoke with the owner of a four and a half star hotel across from the hospital that have one bedroom apartments and locked it in; making sure that we wouldn’t need to pay anything. There isn’t a consensus yet on when this will take place as we have heard it could be in one or two weeks.

So far everything is going well and truly beyond our expectations. Sure there are a lot of hard things that you need to be prepared for but I love that we have experienced little miracles along the way with her that we didn't prepare for.