Digging in for the long haul...

I suppose the down side of posting a relentlessly upbeat post like I did yesterday is that it can remind you that not everything in the garden is really smelling of roses.

Can I be honest with you all for a minute?  I think I can - if you've come this far with me and you're still here you must have picked up the idea that this whole thing is maybe not as easy as it looks.  And even though I make light of it (and Mum and Dad do too!) sometimes it's scary and it's hard to see the light at the end of the tunnel.

This is not as easy as it looks...

I really can't get the hang of this breathing thing and it's really beginning to bug me now.  I've lost count of the number of times I've stopped.  Each time it happens I get bagged and recover, and the doctors are very quick to tell Mum and Dad that this is the way it is and over time things should improve, but I'm three weeks old today and I really want to get this simple milestone out of the way. 

The big frustration is that no-one seems to know why I can't get it.  They're testing everything!  I've had brain scans, x-rays, blood tests and urine tests but they all seem to be coming out fine.  I suppose this is a good thing but it still means there's no quick fix.  Maybe I am just tired.  Maybe I do just need time to grow.



Spot the difference...
....me and Gaga lit from below!

And another thing (sorry to whinge but I've started now so I might as well get a few things off my chest!), another thing... I can't seem to fix this billirubin malarkey so I'm now being lit from both sides.  I have the standard bili-light above me (see previous blog posts) but now I have another one that I have to lie on!  When dad came in to see me after work last night, the lights on the ward had been dimmed and he said that my incubator reminded him of Lady Gaga's entrance at the Grammys last year!  I don't know who Lady Gaga is but I've checked the labels on all the beds and she's definitely not on this ward.

I think I need patience.  Three weeks seems like a lifetime when it's been your lifetime but if I'm going to be in the NICU (neonatal intensive care unit - get me with my acronyms!) for nine weeks as planned then I'm only a third of the way through.  If it was a pie chart it would look something like this...


Basically, I've only eaten a third
of my NICU custard pie!

Hopefully, Charlie will be better soon and Millie is coming at the weekend so seeing my brother and sister might give me the boost I need.  I can't remember if I've told you already but Millie has been in to see me once before and it was cool to meet my sister.  She even held my hand for a bit and told me about how much she wanted a baby sister (she's got three brothers!) and I think it was Millie that picked the name Poppy for me, which everyone loves!  I think she's going to be a cool big sister!


Holding Millie's Hand

So there you go, it's not that my glass is half empty today it's just that I'm beginning to realise that this is not the walk in the park that I hoped it might be.  Mum and Dad are still really putting everything in to supporting me and helping me through this... Mum especially!  I wish I could make it easier for her right now but one day when I'm older, I'm going to hug her so hard she'll look like Billy Beetroot herself, and tell her how much I love her and how grateful I am for everything she's doing for me right now.