Checking In

I write this blog entry as my little girl is happily sitting in a baby rocker being swung back and forth while her mother sleeps on the couch right next to her (exhausted from a day filled with visitors). Life has been good for our family lately. We spend the majority of our time seeing old friends or just sitting around at home either keeping Riley amused or trying to get her to have a nap (no matter how much she would rather be awake watching what everyone else is doing). But it’s amazing how you can’t even begin to rationally explain where your day went when you are looking after a baby, even when there are TWO people doing it. You try to break down in your head how 12 hours have gone by and you realize that it was taken up by so many little things. Changing nappies, feeding, bath time, changing the nappy again, reading to her, changing the nappy again, cradling her in your arms.... oh and did I mention changing her nappy? I did? Well while you contemplate my repetitiveness I need to go change a nappy....

She has also begun to do normal baby things like make noises, suck on her hand whenever she has the coordination to get it towards her mouth (her daddy is also fairly uncoordinated but that has more to do with sport than hand gestures) and she smiles far more often now. Though sometimes those smiles are because she is about to throw up on us; the joys of parenthood they say. We feel like we have a fairly normal life with Riley but it is always interrupted by needing to check her back into the hospital every night. It feels like such a disruption when it happens but that is just how it has to be at the moment.

Though life is great, we always have in the back of our mind that with her next surgery looming on the horizon, this period will be short lived. For a while we had been told that she would need it when her condition begins to deteriorate and while that is the case, they still make plans for when it will happen. One of our doctors let us know that her next open heart surgery will be around the four month mark and not much later than that. They will bring her in for a cardiac catheter procedure roughly a week before she turns four months so they can inspect how the heart is working and get all the information they need for her surgery. Then the big surgery will take place within 1-2 weeks afterwards. So that means May will be quite a big month for Riley. The good thing is they say that patients are much quicker in their recovery after the second surgery. So we don’t expect a long drawn out process like the last time; some patients are even allowed to go home a couple of weeks after the surgery is completed. Not the accommodation that has been their home for the past few months but their actual home. Riley will finally be an Isa girl in a little over two months all things going well....

So what does all this mean for looking after Riley before her second surgery in the meantime? Well it means there is a little bit of uncertainty surrounding it now.  One of our doctors let us know the other day that even though it's still possible; it is looking far more likely that by the time they have everything prepared, Riley will be ready to go for her next surgery. We may get a couple of weeks in if we are lucky. Even though we are still hopeful, we really can’t complain because we have been given far more than we expected. The plain and simple fact that we get to take our daughter home on a day pass each day is hardly something to sneeze at.  Though that didn't stop Jess trying her hardest to get the doctors to let Riley out on a night pass (there is no such thing by the way). When one doctor said no, she asked the next one but to no avail. No harm in asking I guess. Though we might not end up getting the opportunity to look after her both day and night like we would like; I am happy that all of this effort to get it ready means the next family who comes along will benefit. Any family who has had to walk through what we have deserves an opportunity to have a (somewhat) normal life with their child even for a short time between surgeries. It may not end up being us but I am glad that it will be there for somebody else.