Tuesday 18th January - Cold Hard Truth

Got My Number?

I said goodnight to Daddy who looked convinced that I was going to sleep well tonight, Mummy had to check some internet things and then she settled down to sleep on a very flat bed. But I kept awake for ages, and ages. She decided she might as well feed me by the time Red Hair Rachel came in to sort my drugs out, but because I was kicking my legs up and down (as much as I can – my movements are very limited) and drawing my legs up to my tummy. Its wind or pooh, sorry to be so blunt but when you’re a baby this is pretty much a big part of your life. I’m not sure which but it really hurts, enough to need a tummy massage, which I got before my milk, thanks to Mummy.

It wouldn’t go away this pain and try as I might to sleep, I just couldn’t, sometimes the pain would take my breath away, literally, my oxygen monitor beeped, so Mummy had to watch over me again. She likes to know that I am safe, and that’s usually when I am happily snoring away in Ellie land. Eventually, several massages later my tummy eased long enough for an hour of sleep before 6am breakfast. Mummy was awake by now and Bath time Jenny brought her a cup of coffee with lots of sugar in.

I was a bit sick with my feed, my tummy was just too full but I had to wait until 10am before I could have another magic pill again. Well, it’s not a pill any more; it’s a long straw, which shoots a cool shot of goo called an anenenenenmanana, or something? Mummy can’t say it but giggles when she does; she and daddy have silly jokes. Anyway, it seems to hit the spot.

I believe it’s known as an explosion, so now I have an excuse to use my new bedding made by Grandma, a pretty blanket and matching cushion, Clever Grandma. I got to wear my new outfit from Emma too, I wonder can you have too much purple or am I pulling off hippy chique?

Daddy went to buy trainers, at last today so Mummy tidied up to try and impress him, I wonder if he’ll actually notice as our room here is so full, if we did ever leave then we’d need a removals lorry I think.

I saw two of the Home Care team today, Bev Curly Bun (The Boss Lady) who is putting together a special passport for poorly babies like me to help explain how we all like to looked after to anyone new as we can be quite complicated. I am proof of this!

Home care Chris came to see how I’m doing and as usual Mummy talked her ear off, it was good though as she’s found me a different Oxygen attachment which means I can trial being on slightly less than 1 litre and go to 0.75 of a litre which a few to finding which amount is most comfortable in case I was to (whisper it) go

h o m e. Especially as I have been nine days clear of that rotten bag and mask.

I had a lovely afternoon with Grandma and Daddy with Mummy somewhere looking sleepy on a chair and bobbing in on the conversation every now and again when she cold muster the energy. We listened to calming songs and Mummy was very excited that some pretty cards had arrived; they are my business cards, look at me! They tell people how to go on my blog but also get a pretty picture with me on it. Mummy says she loves stationary but is so mega impressed with these cards they are all presented all beautiful and look all professional. I think sometimes she likes to do worky things as it reminds her that she can be very efficient and clever sometimes.

Grandma went home and Gill my speech therapist came with a funny pink cup, she had every intention to show us how I might enjoy the odd sip from this cup. Daddy showed her how I sit up like a good girl on his knee and all was going well. But then I started to cough. Gill was concerned that I had a weak cough. My cough continued and then stopped. I coughed again. Mummy lifted me off Daddy’s knee quickly and put me back in my cot. I stopped coughing. I stopped everything. L

I think it was about sixteen minutes before I started to breathe again on my own, sixteen minutes is a long time when people are stood over you willing you to breathe, poking your feet, pinching your toes, calling your name, calmly but hurried.

Checking monitors.  Checking clocks.

Eventually instead of eight people around my cot there were four and then there were gentle kisses on my head.  Then there were three and notes were written and papers put away. Then there was just two: The two that are always there, everytime; the two that will ALWAYS be there. Two people that love me so much they go through this time and time again because they love having me in their life no matter how hard it is, they love me and want me to stay.

Tired out after a long day

(Editors Tired End of Day note:

So if you think that we've gone all fundraising fanaticical, we need to, it's an escape, it's a vehicle, an obsession, to let everyone know how much we love Ellie, pure and simple.

 If you think that’s a good enough reason to try and make a difference then your one of those amazing people who are fundraising too. So Thank You, because it does make a difference. Not just to us but to the other parents and their children (who may be you) who will benefit at Ward 17. )