Monday, 31 January 2011

Afternoon everybody!

Bonjour tout le monde!

Mum has been teaching me French this afternoon!  Currently I can say 'j'ai quinze ans' which I think means I am fifteen.  It will come in handy once I start my GCSEs so I will store that one for later!

Another nappy change and another poo positive nappy.  From a medical point of view, this is brilliant as it means the small volume of breast milk I am getting through my NG tube is getting through without my gut getting irritated.  Mum is pleased and told me that the amount of milk she is getting has increased because I am doing so well.  I will try extra hard to look cute and get better quickly if it means getting more milk and making M+D happy. 

Mum says that my wombat is waiting for me too.  I'm still a little delicate so no other visitors apart from parents are allowed.  This also includes wombats but here is a photo of him in the meantime. 
Did you know wombats have square poo so they can stack it and mark their territory?  





Mum is being very good apparently and leaving the doctors in peace to put a long line in my arm or leg.  She says it is because the lines in my umbilicus or tummy button have been in for over a week and they need changing.  The doctors are very good here and if M+D trust them then I know they will be gentle with me and do a good job. The number of lines I need is getting less as I get better which is good too.  It means the tower of drips next to my little incubator is getting smaller and there are less things that go beep!

My tower of drugs that go beep.  Only 4 of the 7 are actually connected to me.

Mum bought mini eggs today.  She said I had been due at Easter time so buying chocolate eggs in January is totally acceptable!

She has tried to take some video of me as well but hasn't quite worked out how to upload it yet.  I'll show her how to do it once my line is in so hopefully she'll have it on tomorrow's update.

So, all in all, another positive day. Here's to a terrific Tuesday!

Bye bye xxx


xxx

Monday miracles...

Dear all,

Sorry for the lateness of this post.  My dad has gone to work so mum is now my PA and is still mastering the technical aspects of blogging. 

Mum seems very happy after the ward round.

My bilirubin has come down, so the blue light has gone and my shades are off.  Still haven't quite dared open my eyes yet but I hear the blankets are on their way so I will try hard to open them soon so I can appreciate all your hard work.

My morphine has been stopped and my feeds have been increased to 1.2ml every hour.  Mum says she will do her best to help me through the 'cold turkey' phase, whatever that is, and give me as much milk as I can manage.  Yummy!

They have also mentioned that I might get my first cuddle today.  I've been waiting for this for 9 days so fingers crossed it will happen today.  There will be lots of photos I promise.

I'm having more caffeine this morning to get me breathing on my own and if that all goes well then my breathing tube can come out soon.  Mum says that she needs caffeine too but hers generally comes with a pastry of some kind!

The news that made Mum smile the most was the fact I have done 3 poos since yesterday.  Why this is so exciting is beyond me.  Mum did say that doctors are always asking patients about their bowel habits so I'd better get used to people being very interested in my nappies. 

Look, no shades!

Getting so big I just fit in the photo!


M+D have been telling me about my followers and number of hits.  I didn't know I was so interesting but thank you so much for all your support and I hope you all continue to enjoy my posts and photos. 

Bye for now,

Arthur xxx

Sunday, 30 January 2011

The joy of Sunday evening

Well let's try something new today - a video. Not the best quality 'cos it's a rather old camera. Dad tried 30 seconds with the new camera but the file was over 100MB so that wasn't going to work!

video

Mum tickling me until I wriggle

So Dad changed my nappy this afternoon. And did his tax return, whatever that is. He seemed happy enough - apparently this hotel I'm in is rather expensive but paid for by his taxes - so he's stopped whinging.

My health - breathing is a bit easier and oxygen requirements are down so that's all good. And I'm tolerating Mum's milk so the lovely nurses are upping my 'dose'. No signs of infection anywhere and generally all is well.

The only risk is that because I'm being so well and simply yummy M&D are getting more nervous about the next bit of bad news, whenever that may come.

And now for some photos to give you a sense of my mightiness - small, but mighty!

Mighty toes

Mighty puds (for non-Eccles: Puds=paws)

My little shades

Teeny nappies!
Have a lovely evening all of you - now in over 12 countries on 4 continents,

Love Arthur, x

Sunday - my day of rest.

Another quiet night. Me just happily growing. I now weigh 40g more than I did when I first escaped from Mum. I'm tolerating my feeds so Mum has popped off to fetch me more food - yummy.
Breathing seems OK so I'm off jiggle breathing and back on the normal stuff. Oh and I've been practicing new tricks like grabbing at stuff - all good.

Dad's new lens keep coming out and he's very keen for you to see how cute my eyebrows and eyelashes are - so here goes:
Looking this sweet takes no effort, it seems!
Eyelashes!!
He'll stop making the photos so big soon. He's just excited.

Love, Arthur x

Saturday, 29 January 2011

A day of many firsts

Well what a super day!
I turned a week old and had a very happy time. Dad has bought a new macro (close up) lens for his camera and has gone totally bonkers with it.
My hairy knees
So this may be a rather picture-tastic posting, hope that's OK. I also found out I'm getting over 500 hits a day on this blog. Well I'm very flattered you're all so interested. Slightly intimidating!! Please do feel free to share me with friends but please don't feel you have to stay if you don't want to - I'm not going anywhere.

Other firsts - I've passed my first poo. I'm not sure you needed to know that but Mum and Dad seemed very excited. They changed my nappy all by themselves and my nurse was very nice and encouraging. Then she adjusted it all again to get it how I like it. You're not seeing a photo of that, so here's my knobbly knee again:


Mum thinks this is very cute - and also why I'm called Arthur
And Dad got to pick me up for the first time so I could have my bedding changed. He managed not to drop me but did insist on jiggling me up and down and humming some nonsense tune. I think I'll stick to Mum's singing!

Dad being clever, and getting me reflected in Mum's eyes


Dad not dropping me. Not my most flattering shot.


I may have wriggled a bit!!
 I have also been wriggling in a much more purposeful manner. To be fair, since I haven't yet chosen to look around yet, I'm doing it all by feel. And they keep sticking lines in my arms which are HUGE when you're my size so they make it all a bit awkward.

I had a go at my tube but was spotted so had to let go:

Apparently, I have to leave this alone.

Not my fault - or anyone else's but I caused my first proper heart-stopping moment for M&D today. They were out to lunch with Toby and Julia when the NICU rang. Dad over heard "NICU... Surgery, right now...two hours" and apparently you've never seen him move so fast. Mum had to explain that it was nothing to do with me, but that the unit was shut to visitors for a couple of hours whilst one of my little friends needed treatment.

Whilst we're talking about lunch - I'm being fed again which is good. And they wipe Mum's milk round my gums so I know what it tastes like - seems yummy to me! M&D also recommended their lunch; The Henry Root in Page Walk  http://www.thehenryroot.com/ and were very surprised to find that the lovely maitre-di was a fellow Bryanstonian: Jerome. Huge thanks for looking after them so well. And even giving them a free bottle of Champagne to celebrate my birthday! (They tell me it's milk for grown-ups)

Anyway, that's enough typing so let me finish with another cute photo:


Me hugging mummy
Love to all,
Arthur xx

A quick hello

Just a very quick update to say that all's fine as I approach my one week birthday! I get two celebrations every week - Wednesdays for my 'term date' and Saturdays for my birth date.
Mum and Dad are abandoning me to have brunch (whatever that is) with my uncle and aunt. They've promised to come straight back and my lovely nurse Joanna is keeping a close eye! So I'll post more later.
Love and thanks for all your thoughts and prayers,
Arthur E xx

Friday, 28 January 2011

A lovely afternoon and can I ask a favour?

Dear all,

I now exist - officially at least. Mum had to go all the way to Brent to register me as a real, living human being. I gather I'm called Arthur Jonathan Simon Eccles which sounds very distinguished and shows that for five generations the Eccles family haven't been able to think up any new names - they just keep changing the order.

And I've had a lovely afternoon. Nothing has happened - oh and I'm off all blood pressure support: which is very good. I'm still on high frequency ventilation as I keep dropping my O2 sats when I get excited - not too badly (75%) and I don't too it for long - but just enough not to reduce my need for support. So Mum and dad can't take me out and cuddle me yet. But they do keep talking to me and Mum changed my nappy and cleaned my mouth this afternoon.

Now - favour time: I got to lie on my side this afternoon which made a lovely change.

I haven't bothered openning my eyes just yet as this is my view:

So can anyone make me some new covers for my incubator. The covers look huge to me but are apparently they are only a metre by a metre. I'd love one with some nice things to look at on it.

And two big thank yous - one to Penny for having 'None shall sleep' dedicated to me on Classic FM - very appropriate given the constant alarms.
The second is to Bruce, Sam and all my other lovely nurses for looking after me so well. I understand you've now found my blog - so HELLO LOVELY NICU NURSES!! and many thanks.
Love
Arthur x

Oooh - that Friday feeling

Well I'm lying in my little incubator box trying very hard to be boring but apparently I'm being irresistably cute instead. I have developed a slightly irritating habit of opening up my PDA when tickled (persistent ductus-arteriosus the blood's bypass route for the lung which normally closes at birth - amazing what you overhear through the perspex). This means I set all the alarms off when Dad changed my nappy first thing today. I was good and didn't pee on him - seemed fair.

All was well overnight - they gave me a blood transfusion - well a small syringe full, given my size. Their also giving me Ranitidine for gastritis - taking after Dad again.

I like being comforted!
And now Dad wants to say a few words:

After feeling flat during the day - Amy and I drove home thinking up all our reasons to be cheerful: and here's our list:
Reasons to be cheerful:
  • Amy is physically just fine. Nothing is damaged. We’re able to concentrate on Arthur’s health.
  • Amy now has the secret to avoiding stretchmarks and regaining your pre-pregnancy shape - I'm not sure we'd recommend it though
  • We both have very understanding colleagues and jobs we love and will be happy to go back to.
  • We don’t have to fear for our savings – the NHS is free and has excellent NICUs and paeds ITU transport services.
  • We have a lovely house and we’d done up our bedroom and bathroom so they are now calming sanctuaries away from the stress of the day.
  • As Amy said driving in today: "God I love this car". Our Jaguar XJ6 is quiet, reliable and a fantastically comfortable way to get to and from Chelsea. And C&W hospital provides free parking for NICU parents. Thank you.
  • The staff at C&W are so good, Amy and I have total faith in them, and that lets us sleep at night. More thanks.
  • They are also the best baby sitting service in the world so we are not being woken up and can go out when we wish!
  • We have huge numbers of truly fantastic friends and our wonderful families who have fed us and hugged us and cared for us. Even more thanks.
  • We’ve always saved for a rainy day – and this is it. So Arthur will get what he needs. (Like a 'transport system' with a supercharger for instance J )
  • Our sense of humour has survived. Darker, but still helping!
  • Our own relationship is stronger than ever and just keeps getting better.
Time to go and see the little man - more later.
Simon

Thursday, 27 January 2011

Today's news

From Simon:

Nothing happened. Repeat scan showed no changes. Ventilation stable. No signs of infection.

All this is good but Amy and I felt flat as pancakes. It may just be one of those days, it may be the continuing realisation of just what we're in for, or it may be that another baby is really sick - and we saw the effect on their Mum.

We're Ok. Many hugs. Have a pic of a teeny foot to keep us all going! Note the careful labelling to prevent any limb being accidentally mislaid.
My left foot

How this all began, or Mum's story

You’ve heard from Arthur and Simon.  I thought I would tell a bit of my story.  Apologies in advance for grammatical errors.

I’d been on-call overnight on Friday – up ‘til 2am but quiet after that. I was due to be working on Saturday so drove into Northwick Park.  On the way, I started feeling crampy abdominal pains so called Simon and said he might have to come and collect me but to wait and see.  Tried to do some exam practice looking at plain films but could not get comfortable so phoned Simon to get him to come and pick me up.  So Simon got on the tube… 12:10.

Still could not get comfortable - walking up and down the corridor, popping into CT to see my boss and let her know I was going home.  Apparently I didn’t look very well so she agreed that I should go home and get checked out at St. Thomas’.

By 12:45 the discomfort had become pain and it was getting more intense and more frequent.  It slowly dawned on me that this was not right - I phoned Simon again but got no answer as he was still underground: ‘eeek’.  I decided enough was enough and to go to Northwick’s maternity unit but that I needed to go to the toilet beforehand.  My waters broke whilst in the toilet and I found Madhu, one of the other SpRs and then flooded the floor beneath me.  Loud swearing. We grabbed my stuff and I phoned Simon.  He was still on the tube and several stops away... 13:00

I managed to walk out of the Radiology department but only got 3 steps and realized that I couldn’t make it to Maternity.  Madhu grabbed a wheelchair and whisked me round. In the meantime, I spoke to Jean (an Obs and Gynae Reg from medical school) on the phone.  She talked calmly and reassured me.

Madhu and I got to Maternity at about 13:10 and got to the Labour ward desk and started booking in when I felt I needed to push.  I was propelled into a room and Madhu was left to book me in.  An army of people rushed at me, I found myself in a hospital gown and my socks, thinking “Oh God, I haven’t shaved my legs and I need a pedicure!”

The Obs SHO confirmed I was fully dilated.  The Paeds SHO took a brief history.  The Paeds SpR and Anaesthetic Consultant and Obs Consultant were fast bleeped.  It was all so fast and I kept looking at the door as more people came in and went out.  None of them were Simon.  Another cramp (or contraction as they had now become named) came and I needed to push.  ‘No.  Not yet.  He’s not ready.  Simon is not here.’ 

Finally or less than 5 mins later depending on your perspective - Simon ran into the room.  Yes, ladies and gentlemen I, or maybe Arthur, got Simon Eccles to run 1000 yards, all the way from Kenton tube station.  Another contraction and another push and the little man was out: born at 13:28.  Silence, and terror for Simon.

The Paeds team worked on him.  The midwives cleaned me up.  Intubation, ventilation.  Sats 14%. Simon yelling like a consultant not a Dad: Reintubation.  More ventilation.  Sats up to 95%. Incubator prepared and Arthur was taken up to SCBU (Special Baby Care Unit).  Somewhere in all that Arthur even tried to cry – making a small mewing noise – heartbreaking.

Simon and I were left in the delivery room.  We hugged and cried finding it difficult to know if we should be pleased our boy was born or devastated he had arrived so early. 

Up on SCBU, Arthur had lines and more tubes inserted and was stabilized whilst the doctors decided if he should stay at Northwick or be transferred.  He was under 27 weeks and less than 1000g so fell into the ‘extremely premature and extremely low birth weight’.  It was decided he should go to a Level 3 unit.  So Chelsea and Westminster was contacted and transfer arranged. 

I changed out of my gown into scrubs.  I felt fine and was walking around and keeping an eye on Arthur.  Everyone kept asking me if I was OK and if I needed to sit down. 

Arthur was transferred at 7pm.  A bed was free for me at Chelsea too so Simon and I drove to Chelsea.  We arrived and went straight up to NICU.  I was wearing blue scrubs; all the staff were wearing blue scrubs so I got many strange looks and more once they realised I was Arthur’s mum not a member of staff!  Arthur was settled into his SW10 postcode and I was shown the postnatal ward – several double doors down from NICU. 

I spent the night in Chelsea in a sideroom (cot swiftly removed on my arrival) with a broken (on full heat) radiator.  The waterproof mattress added to ‘comfort’ and I didn’t sleep very well.  Too hot, too stressed and too many crying babies.

So…I am well and have been discharged to go home to SE1.  Arthur is ‘stable’ in SW10 and we are going to register his birth in HA1.  3 different NHS Trusts in less than 3 days!  Wonderful care from super people. I guess this is why we pay taxes. 

And now some pics from today:
Day 5 and all's quiet

Made for squeezing

See - me giving Mum a comforting squeeze

Too cool for school!

Accidents, kindness, wombats, and tears

Let's start with my news - I've had a quiet night, I've been put back on the high-frequency ventilation which is fine but does make me feel like on a 'power-plate' machine, jiggling around. I'm also back under the sun lamp so the shades are back on. All pretty dull and, as they keep telling me, dull is good.

Dad tells me he went to court today as a defendent in a four year old case about a car crash. He won! In part thanks to me and my circumstances being explained to the very nice judge. He's quite pleased with himself - and while all of you have known him longer than me - if he's like this whenever he wins something he must be insufferable.

Oh and he drove into a bus this morning - well Mum gave the bus driver what for - and it all ended happily.

Just to let you all know (so many of you!!) Mum and Dad are quite overwhelmed by all your kind thoughts and offers. It looks like I'm in here for the long-haul so I've told them to bank all the offers of food, laundry and lodgings and claim them all back when/if I become a bit more demanding or when they're just a bit fed up.

What's a wombat? I only ask because M&D have apparently bought me two of them. Something to do with my great-grandfather coming here from the far side of the world and them going there for their honeymoon. Because I'm so small - the first one is apparently about twice my size, so they've got a teeny one. But I'm not allowed soft toys (just wires and beepy machines) so they're looking after it for now. I'd love to know what it looks like but I haven't quite go round to opening my eyes just yet.

Oh - and as Dad came back after the court case he passed a group of children learning to ride their bikes - cue full water works, miracle he can drive at all really.

Lots of love and small, hand grasping cuddles,
Arthur E xx

Wednesday, 26 January 2011

A wonderfully dull day!

23 followers: wow, I had no idea Mum and Dad knew so many people!
Well I've stopped tanning so they took off my shades which meant Mum and Dad could see me properly.

I've done my best to look super-cute and been practising the odd facial expression - not many as my morphine is keeping me quite sleepy - but they seem to enjoy tickling me to see what happens.
Practising yawning
Dad's discovered that he can buzz my cot up and down. Mum likes it low as she sits next to me and sings to me. Mozart: 'Ave Verum Corpus' and Parry: 'I Was Glad' were the hits for today. Dad likes it high for his back - I feel like I'm in a lift!
Dad trying to make me wriggle
And Mum and Dad have insisted on changing my nappies themselves - so the nurses leave me until M&D get here so they can do it. I get my revenge by peeing all over them whenever I can. Oh - and they got me Christened - I think I even heard Dad joining in.

They rescanned my head today and the bleed hasn't changed, no extension - so that's good, and no expansion of the left (minimally affected) ventricle. So apparently my left arm and leg may stop working when the bleed resorbs and takes the neurons with it. I will do my best to be a miracle and repair without and damage!

Mum and Dad have had a chat to my Professor. No better news but much better understanding. Nothing is certain - so one day at a time. No news is good news.

Thanks for all the love and prayers - it means the world to M&D. xx

I'm fine - not sure about Mum and Dad

Simon writing:
Well another day dawns.
No overnight phonecalls - good.
Little man waiting to greet us - good.
Phototherapy stopped so blue light off, so sunshades off - good.
Physiology numbers all ok - good.
Needed plasma last night which is not brilliant. And he's not currently able to tolerate milk by NG which is a bit crap.

But screwed up his little face when I stroked him this morning - which is the first facial expression we've seen - wowee I didn't know I could be so moved by someone so tiny.

Last night was horrid - not for the little man, but Amy and I had a really rough time coming to terms with what this all means. We're solid as a rock, but boy is this hard.

So we're praying for a really dull day - no change in his head, and no new news. We'll try and take some photos of his face if he gives us the chance. (They're doing the big morning ward round so we're having a coffee and being patient. I'm nearly getting the hang of being patient)

So here's a photo or two from yesterday to cheer you up:
My own little sunbed

Too good for words!

Tuesday, 25 January 2011

Prognosis

Every child is individual.

Now that that is understood - here are the stats Amy and I are trying to ignore:

Grade 4 IVH
50% mortality
60% Cerebral palsy
70% Mental retardation
92% special needs

So Arthur just has to steer a course between all those stats - but since only 10% get this sort of haemorrhage he's not got the best of luck on his side.

Insert your own selection of swear words here.

Simon

Day three afternoon - two steps back

From Simon at 5pm

Not a good afternoon I'm afraid. We've had another ultrasound of his head and Arthur's bleed has extended. It's a grade 4 which is the worst and is clearly affecting a significant area of his brain tissue itself. He is far more likely than not to have a degree of hemiparesis - or weakness on one side.
There is also a risk that his whole CSF (the fluid round the brain) system will block and swell up. This will compress both sides of his brain - really bad news. And will trigger some really hard decisions for Amy and I.
Amy's already finding it very hard as she scans similar little sprogs back at Northwick Park and knows only too well how this can progress.

You never know he may pull through and just have mild impairment. So there's every chance he could be a better sportsman than his Dad. Oxford looking less likely - Barts and the London may still take him.

Arthur on his little sunbed

Arthur's home, with view of Chelsea

Still a very cute little man.

Day three

Dear All,

This blog is to help keep all of you up to date. They'll be many voices and much detail - the grandparents are demanding full disclosure - no problems!

We'll try hard to keep it up to date but please be understanding if we are unable to do so.

Arthur here (through Dad but only 'cos the keys are too big). Well it's day three since the escape plan came to fruition.
This morning's main news - my breathing is much better, I'm now on room air and maintaining excellent saturations. I have also switched from high frequency oscillating ventilation - which didn't half make me jiggle about - to conventional ventilation. There's even talk of trying to take my awful tube out and let me breath for myself. But apparently I need more stimulation to do so - so I may be given caffeine but Dad says this is fine as he's addicted to it too.If that doesn't work then I go back on the morphine - which stops me wriggling so much, which irritates Dad who likes it when I fight back and squeeze his finger.

Yesterday I had a pretty serious head bleed (a grade three Intraventicular Haemorrage as I overheard it) Mum had a good stare at my ultrasound pictures and agreed that's what it was - and then cried for the rest of the afternoon. But I'm still here and still wriggling all four limbs when I'm tickled. We just have to wait and see. Mum is terrified I'll only be bright enough for Oxford (she went to some place in the marshes).

Dad has to go and eat now - so more later.

Welcome

Arthur Eccles arrived on Saturday 22nd January, after 26 weeks and 1 day, weighing 980 grams. This blog is for friends and family, to keep up to date without Simon and Amy, his parents, having to do a draining ring round of everybody. I will be posting photos and updates as I get them.

Feel free to get in touch.