Happy New Year to all – reasons to be cheerful

As 2016 draws to a close, everyone is talking about what a horrific year it has been and how many losses everyone has suffered. It has truly been an awful year for many of our friends and family.  Just within our family we’ve lost 3 family members physically, watched as my mother broke her back and then nearly lost her. Psychologically we’ve watched as we’ve lost other friends and family to depression or upset. Jon spent 5 months away from us deployed. Then the worst for us was, when we nearly lost Gwendolyn in December as we watched her lungs collapse and her back on 100%  O2 and hearing the words ‘we don’t know what to do’ from her Doctors.  I’ve now had to suspend my studies at Oxford as Gwendolyn’s lungs are too fragile for nursery and her immune system wiped out. And that’s just us! Not even touching on wider politics or personalities!

But today, when we were talking about what the end of 2016 might mean, I started to list all the positives because I refuse to believe that 2016 could only be a negative year – written off and sent to the back of the wardrobe.

So as many people celebrate 2016 being done and finished and wanting to forget it, we’ll also be raising a glass to be thankful for 2016 as it’s all the horrible times that have made us who we are, whether people like it or not.

2016 Reasons to be cheerful:

Flower Girl

  1. Gwendolyn lived!
  2. We watched as new friends made in PICU watched their own children recover.
  3. My best friend got married and Gwendles got to be flower girl!
  4. We visited the Falklands to see Daddy and Gwendles got to have her first trip in a helicopter and see wild penguins.
  5. Gwendles & I got to visit Canada to see Laura which was amazing (future lifeguard water baby in the making).
  6. Jon was promoted so we’re able to stay in our new cottage with all 3 of us living together for another 2 years.
  7. Another pair of really good friends got married (and in Westminster Abbey so very cool)
  8. I graduated from the Open University with a BSc Honours.
  9. Jon got his civilian flying licence.
  10. I got into Oxford (big yay!!) and successfully
    completed the first term – making some incredible friends on the way.
  11. Every step of the way this year, with every ‘step backwards’ or difficulty we’ve had,
    we’ve seen what amazing and incredible friends we have.
  12. I learnt to knit. (& Jon crochet but not sure if that’s a positive thing yet…)
  13. Some very good friends got engaged!
  14. We’ve gained a new family member!
  15. Lots of amazing things that will happen to us and friends in 2017 will have started in 2016.
  16. And because it needs to be listed twice… a month ago we thought we were losing our daughter BUT we DIDN’T and she was home for Christmas.

 

I hope everyone manages to find a reason to celebrate this year because this year is what will make next
year even better 😉  And let’s face it, we’re all probably due a lottery win now… (Apart from Andy Murray maybe as he’s had a pretty awesome year).

Happy New Year Everyone xxx

 

Soundless Crying

Next on my list to buy the PICU are more kids single cotton sheets and of the ‘non pink’ variety. Sounds like a daft thing to be considering at this point of intensive care but even if I can’t get them in time for Gwendolyn it’d be nice for the other kids.

PICU parents feel helpless. As parents we’re used to chasing around after our child, feeding them up, wiping the snot from their noses, entertaining them with activities and tasks. In PICU we’re limited to reading out loud to them, holding hands and helping the nurses giving them a wash down while they hold all the breathing tubes and you have to avoid the lines tapped into every leg, arm and over the body.

Yesterday Gwendolyn’s sedations were weaned as they needed her to cough herself. Whilst lovely to see her eyes open at times it led to the most heart-breaking moment. Crying noiselessly is just heart-breaking as you see tears rolling down their face. Trying to hold her hand and stroke her hair to soothe her when i know that all she wants is to be held and I can’t because of all the tubes and wires helping her to breathe. I am so happy that she’s improved enough to be weaned off the sedation for a few hours but the soundless crying is definitely one of the hardest things I’ve had to watch whilst here. Buying new sheets seems daft – but its something to do, to feel as if I can make her more comfortable, especially if I find some non pink ones!

A price on life…

 

All day – scrap that – all week I’ve been receiving emails about Black Friday coming and all the money saving deals available. Today during my fresh air break into town, shoppers were everywhere and even darting out in front of ambulances in-case their shopping was delayed a fraction of a minute. It made me think – are we really that insensitive to life itself now and so possession focussed that we have almost come to the point of putting a price on life?

 

This morning I walked onto the ward to see a tank of nitric oxide next to Gwendolyn. This is not good. For fellow preemie/PICU parents they’ll know that sense of dread when they see it. For everyone else it basically means 100% of oxygen down a tube isn’t enough to keep her going now. She’s that poorly. It means things are bad. A quick google online tells me that it roughly costs around £26 per hour to use this on her. The 10ml specialist drug they used on her lungs this morning to try and clear them costs around £20. Did the doctors or nurse quibble over using it on her? Did they count their budgets first? No. They fix lives and they’re desperately trying to fix and save my baby girls life.

 

The black Friday emails – they make me sad because the only thing I see that is black about tomorrow, ( if last year is anything to go by) is that people will trample on each other to save £25 on a TV (also the running cost of my room in the hospital so I can be a short run away from her). It was named black because of the violence of shoppers, yet up and down the country tomorrow it will be black for a different reason for little families sat in NICU’s & PICU’s up and down the country. Black because they would give every penny and possession they had to help their doctor and nurse make their child better.

 

I’ll be hoping that it’s not so black for all our parents tomorrow. Fingers and toes crossed.

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