Sorry to go silent on you after dropping our bombshell. We’ve been adjusting to this strange new world we find ourselves in.

Today the doctors hope to clamp one of the tubes draining Rose’s lungs. It appears the hole in her lung may have closed. If this is the case then they will be one step closer to removing the tubes and performing an MRI on her teratoma. The surgeons are not in any hurry to operate as teratoma is not growing and she’ll fair better in surgery if she’s bigger/stronger. She’s reacting a lot more to being handled as she’s starting to get used to the morphine she’s on so she’s more uncomfortable, which is hard to watch.

She has hypothyroidism so is being medicated for that… there’s a theory that her type of teratoma actually grows from the thyroid so the hypothyroidism would support this.

Thank you for all your emails, texts and phone calls checking in on us. We seem to be managing (with a lot of help of course!). Andrew’s been working a bit this week and Mum and Ben are going back to Bundanoon on the weekend. We’re trying to establish a routine so I’m aiming to join the world again from Monday.

At the moment we’ve set it up that I go in to the hospital first thing in the morning, around 7am and express and wait for doctor’s rounds – these happen between 8:30AM and 9:30AM. I then try to digest all the medical details I can manage and communicate them to Andrew (not a strength of mine!). Then I stay with Rose for as long as I can and express again and maybe do a bit of work and express again then when I get tired I come home. Andrew’s been going in the afternoon to do “cares” which involves cleaning her eyes and mouth and sometimes helping with her nappy change. As she grows and more issues are resolved we will be a lot more involved with her cares and hopefully get to touch her a bit more if she’s comfortable.