…make lemonade….or so the saying goes – but after a long week it sometimes feels like sugar might be on ration.

I don’t want this post to be completely doom and gloom  – it’s not one particular thing that has made this week a lemon but I thought it worth while to sometimes document the not so good along with all of the rest.  If you’re reading this, please don’t worry about us – we are all ok – it’s just been a bit of a challenging week that’s all and this seems as good a place as any to vent a little.

So what have the biggest lemons been for Lily this week?

Well, without too much boring detail she has this week had a blood transfusion because she was struggling to maintain the correct level of oxygen in her blood,  has had to have her stoma bag changed numerous times, further exposing the nasty patch of broken down skin under her bag which causes her pain, got a chest infection, swelled up like a cabbage patch kid, has un-identified eye-lurgy, has had a laser eye check and has had numerous needles poked into her little arms and feet.

Not all of these things are related to Lily’s stomas or her being premature – a chest infection for instance is something that children regularly get  – so it occurred to me whilst having a quiet cry to my mum the other day that worrying about the Lily-pad is something that is never going to go away no matter how old she gets.  I will always get upset when she is ill and needs comfort just like mum did with me.  Clichéd maybe, but true. It has been a very hard week emotionally for me – I think the past 6 weeks have just got to me but when I look at Lily and how she has and continues to cope with things I find it rather humbling and it helps to remind me that things aren’t always as black as we thought.

Sooooo…how does she make lemonade?

• She puts on weight – a lot of weight – 250 grams plus which means she now weighs 4lb – not too long till she’ll be double her birth weight.  We are still waiting for clarity on what weight she needs to be before she can have her next op but any weight she puts on is a step in  the right direction 😉
• She defies the nurses and takes complete feeds via a bottle rather than her NG (nasal-gastro) tube. This is a great win for me as it means one less wire again which ultimately makes her one step closer to coming home.
• She earns lots of brave points as even when feeling grotty continues to be cute and largely happy.

We have to celebrate the wins, no matter how small as they all add up – here’s to much more lemonade! 😉