Cardiac Update

So we had a hospital appointment last Wednesday, the outcome of which I have been loath to write about. Hence, the updated  header and layout, which I hope you like. I was aiming for a scrapbook feel – as this blog really is becoming such a record of our journey with the lil’ man. Anyway, blah, blah, blah, basically updating the look of the blog was a welcome distraction from the real news that we have to share…..

Albie is  of a reasonable weight now and the plan is to go ahead with the Rastelli operation – this month or July.

Last time that we came close to the operation, Marcus and I were quite excited to get it done. This time around we are excited, yes, but also filled with a bit of trepidation too. Putting our boy’s life in someone else’s hands – trusting in the outcome, its big, scary stuff and we have both been feeling it hard.

We will of course keep you posted when we know more. Until then, we are focusing on lots of family time, insane amounts of video taking and love, love love.

12 comments

  1. I love the new look of the blog Sarah!! Almost as much as I love you, Marcus and our champion The Albinator. Just wanted to say I think you guys are doing such a marvellous job, I am so proud of how you both deal with the ups and downs of such a crazy roller coaster ride. Hang in there! Love you to the moon and back xxxxxxxxxx

    • Thanks beauty. Aren’t they amazing overalls! They are “Ruff n Tumble” overalls, clearly from the early nineties, as they have wicked poo pant MC Hammer legs on them. I found them in a charity shop in an old cinema in Masterton. xx

  2. You and Marcus and Albie are always in our thoughts and prayers. All our love and good vibes and more love always. xoxoxox

  3. WOW, Sarah, Albie is utterly gorgeous! I will hold you in my thoughts and prayers as always. You and Marcus and Albie are one very special team and I know you will get through this next bit.The new blog is fabulous – you are sooo clever, just like Albie!

    Gleni XXX

  4. Thinking of you guys and wishing you all the best for the next part of your journey xxx
    If there is anything at all I can do for you when you’re up in Auckland please don’t hesitate to ask (-:

  5. Hey! I just found this blog. I’m actually a 26 year old who had a modified Rastelli for a DORV, VSD, Stenosis, etc in 1989 (but my little brother had TGA). Good luck with the upcoming surgery and feel free to email me if you have any questions!

    zolmes AT gmail DOT com

    • Awesome – thanks so much for commenting. I love knowing about those that had the Rastelli, or something like it, a while ago. Its nice to know that you are rocking it. I have SO many questions! In the modified op, did you get a conduit placed? If you did how long did it last till it needed replacing? Has your stenosis remained the same or has it changed over time? And what special precautions have you needed through life? Sorry to bombard you – a lot of the connections that I have made have been with other mothers of little ones and the future is such an unknown. If its easier to email I am sarahalicehopkinson AT gmail DOT com

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