Dear Friend. I’m sorry it’s been a while.

A while ago a friend told me that she felt that I only spoke to her when I needed something, was busy with my busy social life and other friends and that I didn’t appreciate how difficult her life. At the time I couldn’t see what she meant and I have tried to see what she meant. The problem is, it’s probably made me worse now. My ice queen exterior has always been a bit of a joke – and it is funny. Nothing like a good ice maiden, stiff upper lip drinking her tea. But the truth is, I’m not quite the ice maiden I was. Last year, with Gwen being ill so much, I’d started to keep things to myself more. I didn’t want to be that person that only talked about their child. I can remember consciously reminding myself at the start of conversations to ask in detail how someone was, what they’d been up to – hell, even what they thought about the weather, Bake Off, dare I mention – Brexit. Then when someone asked how I was I’d just say ‘ok. You know.’  I was trying so hard not to lean on other people, not to take advantage, that I just stopped talking. Last year was a s*** year. Let’s face it, not many people had a good one. We’re all living in the hope that 2017 will be the year. Less than 3 months in and personally, I’m now hoping 2018 is the year it all comes good, for us and friends.

Despite my attempt at University Life (clearly Gwendolyn had other ideas), this year so far has seen us at home, not able to go to nursery, university, soft play – swimming’s not even worth it now as she starts shivering after 10 minutes (& nobody likes all that admin for just 10 minutes). Gwendolyn received her cerebral palsy diagnosis, a quick x-ray showed that her lungs have now gone back several steps & now we might have a cardiac problem too. But. This post isn’t about me. It’s about you. Which is why I didn’t answer your text. I wanted to be positive about something. So as I am not blessed with healing hands or a magic wand (where’s Helena B-Carter when you need her) I made a princess dress for Gwennie and in the 15 minutes she laughed that day I took a video so I could share it as something happy and positive for everyone. Don’t get me wrong, I have so much to be thankful for, and I really am. I have amazing friends (even if sometimes we all forget it for a bit), oh my god the healthcare & support Gwen is getting from the NHS right now, is just incredible – and extra bonus – one of her doctors is pretty easy on the eye… Gwendolyn’s alive and today we’re not in hospital, somewhere in the world I have a pretty awesome husband (not that I’ll tell him that too often as his ego’s big enough 😉 ).

 

So why didn’t I text you last week? Well it’s a pretty bad excuse. Gwen has a cold. I feel like one of those parents writing a note to teacher because Jonny got a cold on Wednesday so couldn’t come in (although technically Jonny, being a boy/man, would have had man-flu rather than a cold which is serious stuff.) Why is that my excuse? Well. I have a guilty secret. I keep a ‘go-bag’ under my bed. A go-bag? What on earth?! I hear you cry. Well it basically contains everything I need to get me & Gwen through 48 hours in hospital (I went for 48 hours as a lady should always keep enough spare clean underwear for such an occasion in case you ever got run over). And anyone that has spent any time in A&E or a hospital ward knows that supplies are vital for your sanity. Nine days ago my go-bag went from under the bed to the front seat of my car. It’s still there. That’s how seriously I take a cold in this household – because we all know what happened with the last one! Last week started with me at the dentist with tooth ache (turns out I’ve been grinding my teeth & the dentist told me to relax and avoid stress – clearly a comedienne in her spare time) and other than that, the only person I saw to speak to, was Gwen’s doctor (easy on the eye one so every cloud..). I’ve not slept properly in over a week. This is either I’m worried because the snot filled snoring has stopped from the room next door, or she’s crying because she feels pants and can’t get to snot-filled snoring stage. So to get to the point, last week I could have called you, I could have sent you a message. But I didn’t because I didn’t have anything positive to say. I could say you looked awesome in that Instagram picture. But the truth is, I know sometimes you feel rubbish and you’re not happy, and I wish I could wave a magic wand for you. But as I can’t, please bear in mind, I envy you. I completely & utterly envy you. I think you’re one of the luckiest people out there. I wouldn’t swap with you, mainly, because at heart I’m a soppy mum who’s besotted with her daughter, but I thought you should know. I think, not only are you a pretty cool person, but I think you have a pretty awesome life. What you probably don’t know is why I think your life is awesome. It’s not because you can go out when you want, do what you want, drink what you want, or because of your ability to drink wine & eat chocolate & not gain a pound. It’ s because you’re not afraid. Because to me you don’t have anything to be afraid of.

 

So I just wanted to say I’m sorry. I’m sorry I’m not a better friend. I’m sorry I don’t phone or text every week. I’m sorry it takes a couple of hours to reply sometimes. Just because you don’t hear from me, doesn’t mean I’m not thinking of you, wondering what you’re up to, caring & worrying about you.

Please understand, that sometimes, I’m just waiting that little bit longer so that I can find something positive and upbeat to say. Sometimes I’m busy on my latest effort to entertain my brain or bring a smile to Gwennies face. And sometimes. Sometimes, it’s simply because I’m sat next to her bed, holding her hand – just for a little bit longer. Just incase…

 

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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

 

Home & Puppy Pads!

Well we made it home thankfully on Tuesday afternoon after weaning Gwen’s oxygen down.  Still coughy & yucky so the following 2 nights & days were quite ‘busy’.  On Wednesday morning when by 9am we were up to 2 baths for Gwen, 3 changes of clothes for mummy & a trail of very clean carpet leading from her room to the living room, I did contemplate covering all the carpets with puppy training pads! Unfortunately the dogs were in kennels so I couldn’t even rely on their disgusting keenness for baby vomit.  One thing is sure though – this prem baby has an exceptional gag reflex!  Great for weaning… not so good for a cough… Last night we only had one coughing fit, so almost back to sleeping through the night & thankfully she’s only needing a little more oxygen at night which I can do at home. We even managed to blow some raspberries in our porridge this morning.

Hospital was ok & whilst Gwennie caught up on her sleep (she chose hospital to sleep for 14 hours straight not even waking up for her coughing episodes) I think I join most mums & dads in finding the cotbeds an ‘interesting’ sleeping experience.

 

You know that awkward moment when you meet someone that you’ve either been really drunk in front of, spaced out or they’ve seen you naked (& not your husband)? I had one of those moments while we were at the hospital.  The neonate registrar that came to see me when I was in labour & delivered Gwen – well he was the duty reg on the ward on Monday.  Lovely to see him & for him to see how well Gwen has done – but all I could think was ‘oh my god, you’ve seen me high as a kite & half naked’. I really hope he couldn’t remember some of the horrendous jokes Jon told me I had been cracking!

 

 

Just a cold…

Sometimes people ask me why I don’t want people with colds or that have been round people with coughs/colds etc.  “Its just a cold” I’ve even been told a few times.  Well colds aren’t necessarily just colds even with normal full term babies but add prematurity & oxygen into the mix & you’ll soon understand why a cold is not just a cold to us!

So here we are.  Back at the JR.  There vulnerabilities to coughs & colds are one of the slightly major downsides to an oxygen preemie baby.  Two weeks ago we had the go ahead to reduce Gwens oxygen as she was doing so well.  Then within 24 hours she had a bit of a dry cold & needed to go back up to the level she was on before.  The from about Friday lunchtime she seemed to lose interest in her food (she LOVES her food & 32oz daily is the norm for her), wanted to sleep & cwtch lots. All the typical signs of teething were there; saliva drooling out of the mouth, nappy rash, obsessively chomping down a dummy & pink cheeks.   Friday night she started coughing & vomit everywhere!  Saturday a quick trip the GP as she was still vomiting & there seemed to be even more mucus – a slight even crackle on her chest but nothing serious & some preventative antibiotics.  okey doke… so back home & time to walk the dogs.  As I walk back in theres vomit quite literally everywhere, Gwens just had a coughing fit & all the vomit has gone everywhere & she’s now struggling with her breathing a lot more.  In trying to check her saturation levels upstairs on the monitor I struggle to find a good reading & highest is 92.  So NHS Direct time – & they decide to send us an ambulance. I normally pride myself on being cool as a cucumber when it comes to stuff going wrong as I don’t want to panic Gwen but I could feel myself getting more & more worried. Always seems to happen when Jon’s away with work!

Fast forward 48 hours later & we’re on the ward.  Her first night was horrible & everytime she coughed she quite literally coughed with her whole body & she would need extra oxygen on top of the increased level she’d already been on.  Last night her cough wasn’t so bad & this morning we’ve reduced her oxygen a bit. Suction (putting something like a miniature hoover up her nose) seems to be helping & its really quite gross whats coming out. Back up to normal volumes of milk & she hoovered up half a jar of baby food this morning.

Hopefully not too long before I can take her home to carry on ‘the recovery’.  So far I’ve successfully distracted myself from boredom on the ward with movies, uni work, a run & actually sitting down to do this (whilst keeping a close eye on Gwen as she keeps pulling her tubes out!)

Thats my first world problem of the week anyway – god I hate colds!!!