Disconnected.

Orlaith is no longer connected to anything and I can't describe how amazing that feels. 

Since birth we have battled with wires and tubes, over time it's gradually gotten to a point where its easier to hold her; we've been okay with it, it's visitors who tend to get weary incase they mishandle her, set the monitors off or pull something out. Like many other HI babies, Orlaith was always bound to an IV pole which didn't give us much chance of doing anything but we worked with it; she now has nothing attached to her, even her ng nose tube is gone. 

The only thing left is her central Hickman line, which she'll have surgery to have that removed before we eventually get to go home. Its a central venous line which was used for her dextrose - they remain in place for long periods of time and are most often used for long term medications and for intravenous access. 

This line tunnels under the skin, into the vein which goes right round to the right atrium of the heart. I can't wait to get this thing out! 

Orlaith is still on octreotide, but instead of intravenously through the thigh, it's now given by injection every 6 hours and this is how we will treat her at home. At first I wasn't comfortable injecting her, but it really isn't as bad as it seems - its over before you think about it. We've also taken over the hourly BM's (heel pricks to test the glucose level) but these will graduate to 3-4 time a day eventually. 

It's taken us 12 weeks and 3 days to not be connected to anything, everyone differs - some are a couple of weeks, some are months but my biggest advice to parents with a 'connected' child is to take each day at a time. It really has flown by. 

"Disconnected" means one thing though- HOME.