So here we are. Your apoointment was yesterday and I am awake at 3am. You had a scan and your weight had gone from 7.96 to 8.56 in 7 weeks. Having a hospital admission in the middle of that was not too bad but you've definitely hit the weight gain slow down.
The scan showed your vsd has grown from 4.96 to 6.8*something* mm however you've grown since your last scan. Your left ventricle in some views is roughly double the right however because of the tilt of your heart, sometimes the sonographer could bring that down a fair bit. It is still increased though. There is a 'dam' of tissue that has grown around the hole in a valiant effort to close it however it is just never going to get there so the definitive date for your surgery has been set for Tuesday the 29th of July. We will go over next weekend sometime.
Originally the date had been set for Thursday the 24th however there is another child that needs to go also and so they did some juggling to make sure we are all going to have the best chance of not being bumped. You have been well since your last cold so we are more than happy to wait those few days.
Since the last appointment in May, Dad and I had just decided to put it all to the back of our minds and see what happened, as Terry had said until the scan, there was always the hope that the tissue might migrate over the hole or you may take steps forward enough to hold off surgery until around five. I had spent the past seven weeks wildly oscillating between hoping you would be the exception and stave off the surgical option and wanting it done so that it is no longer on our minds and hanging over our heads. That sounds crazy - I obviously don't want you to have open heart surgery if you could have avoided it - however, since you were around 24 hours old, our whole lives have been a 'what if' scenario in regards to feeding, illness, surgery and growth. I do have to say that Terry had written in his letter to Melbourne that the only thing that prevented you from going onto tube feeding was our outstanding diligence as a family. That was a massive pat on the back for me as I can attest to constant feeding, worry and hard work! These are the things that people don't see on a daily basis and always like to say how 'healthy' you look. You do - you're amazing, but wow we have worked hard on it!
Now please let me go on the record once and for all to say - I am 100% aware that there are families out there that do it SO MUCH tougher than us, their struggle is daily and will never abate. Their future is certain to be full of difficulty, pain and sorrow. My heart goes out to them and I am always very conscious of others' battles faced in their family. This space is for me to be open about our little moment of our 'heart journey' for lack of better, less wanky words, where I can share how we are feeling. It's SCARY, you are our son, we have watched you grow, struggle, thrive and show us pure unadulterated joy. Obviously this path is so closely linked to my personal grief with your brother and while I try my absolute darnedest to not let that paranoia and fear creep into my hopes for you, naturally it's pushing a lot of buttons for me. I don't speak very openly to many about where I am at with that, as I've learnt the hard way that people either: a) don't understand and/or b) don't want to understand and kind of want you to keep your crazy grief talk to yourself as it makes them uncomfortable. They like to offer such platitudes of: he will be fine, it's different this time, it wasn't meant to be with Darcy, you couldn't be unlucky twice, I'm glad it's not me, wow it must be your genes, is it because you've had so many kids - you get the drift ;)
So here is the place where I will be open and share all of our families feelings. I don't really want to put daily updates on Facebook or things as for other people, they might not necessarily want to see and I don't want to 'over share' but I do want to be able to have a real and detailed record for you when you look at your scar in a few years and wonder how it all went! I will try to keep my mummy monologue from coming out too much however I fear that it's inevitable I will share my crazy brain space on here too. Maybe I can put the stats up the top, followed by the ramble for whoever wants to read it.
Okay it's 3:39 and the nightmares of what Darcy looked like in PICU are fading from my eyes, so I will try for some more sleep.
Seeing as we will be in Melbourne for your birthday, I'm percolating some ideas to spoil you on your day!
Love you my little dinosaur xx
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