Tuesday, 31 May 2011

Off oxygen

It's official - I am off oxygen. Last night's recording (download) went well. I say well, my oxygen saturations dropped to 85% for about 3 seconds about every 40mins. The machine noticed I'd gone below 95% and alarmed. I find the noise quiet soothing - reminds me of my early days.

Mum and Dad did not. Apparently them sitting bolt upright over a dozen times during the night does make for happy parents in the morning. By the time I woke for my morning feed, there was a stack of cushions, pillows and blankets on top of the sats machine almost as high as my cot. I was fine though - and that's the main thing.

Food's going well. I got weighed today by my lovely outreach nurse, whose name St Thomas' have asked me not to mention, but thanks anyway. I now weigh 4.18kgs or well over 9lbs in old money.

M&D are a bit worried I can't see properly as I don't seem to concentrate on their faces or follow the things they wave in front of me. I have tried to explain that this is by choice - but I think they're going into paranoid medical parent mode. A visit to the specialist is bound to follow.

Better luck with the passport photo:

I surrender - I'll tell you anything.
And Stefan and Bonnie have sent me a yummy kit to make casts of my hands and feet. It just needs me to keep them really still in special jelly... I'll let you know how we all get on!!

Love to all,
Arthur x

Monday, 30 May 2011


We have really turned into a proper 'family' and have been super busy over the Bank holiday weekend.

My room has been decorated with cockatoo wallpaper on my wardrobes and chest of drawers.  The front garden has been swept and tidied and the dining room has been cleared a bit of random boxes.

I supervised this activity from my bouncing chair and only had to offer advise occasionally.  Mostly when I needed feeding or changing.
My expression of choice today

A short moment of reflection!
I have continued to practice my smiling.  Mostly in my sleep but I did try a small smile with Daisy and Verity whilst I was awake when M+D and I went to visit them and their M+D on Saturday.  It may have been wind but they all seemed excited.  Fred and Sherifa came to see me today.  Dad took this opportunity to cook and make a big mess in the kitchen.  He likes to use every bowl and knife we have according to Mum but it smelt lovely.  I'm still too young to try it myself.

The Outreach nurses will come and visit me tomorrow for weighing and to see if I still the oxygen at night.  The Health visitor is going to see me on Wednesday to check I'm fully recovered from my urinary infection.  I'm a very popular person!

Love to all,
Arthur x

Sunday, 29 May 2011

Long weekend

Evening all,

It's another Bank Holiday weekend which means M+D are hatching lots of plans to DO stuff and so far none of them have materialised.  Mum wanted to sweep the front garden but had a nap with me instead. 

Kipping with Mum
Dad wanted to decorate my room but looked at cars instead and both of them wanted to sort out my passport photo but none of the photos they took were suitable.  Oh well, 2 more days to get stuff done or not as the case may be.
Would you let this baby into your country?

My sleep suit says it all - adorable!
Because of my nap with Mum this afternoon, I am super awake and super hungry as Mum types this for me.  I'm also being super loud but this seems to be less appreciated by them so late at night. 

I am still coping with my oxygen only at night.  My download will happen on Monday night and hopefully this will mean I will be completely tubeless 24 hours a day from Tuesday.  Fingers crossed.

Thank you very much to Dad's godmother, Susie, for the lovely book.  I am getting quite a collection now.  And a big thank you to Jill for the lovely print too.  It's being hung in my room this weekend.

Hope everyone else is having a peaceful weekend so far.

love to all,
Arthur xxx

Wednesday, 25 May 2011

MRI result

From Mum and Dad:

Arthur had his MRI last Tuesday and today we went to Chelsea to hear the results. We knew he would have brain damage - he had such a massive bleed into the right side of his brain when he was a few days old - some damage was inevitable. And we had been prepared for the worst.

He does have damage. There are two different things going on. One relates to the bleed itself - he has localised damage from the bleed, but not too much. He is likely to have left sided cerebral palsy but probably mild. They predict full finger movement but just not spot on. More drummer than violinist.

The second issue is a more diffuse and more serious problem. He has reduced volume of white matter and a thin corpus callosum, which is probably related to his prematurity and chronic lung disease. No, it didn't mean much to us either. But we were told it means that he is likely to have a degree of cognitive impairment, and that this is likely to be towards the less good end of the spectrum. Our consultant was at pains to point out that nothing is certain, and that any deficit subtracts from wherever he would have started from. Hopefully he would have been fairly bright, and so will still be ok. We asked whether Arthur was likely to need special schooling and the answer was no; we should plan for a normal school. So we will.

Arthur himself has been just fine today and looking super-cute.  He shrugged off his 3rd set of immunisations this afternoon. We'll go on doing our very best by him.

Love and thanks to all,
Simon and Amy

Monday, 23 May 2011

Tubes off!!

Just by day, but my oxygen tubing can come off. Regular readers will know that this is a BIG DEAL. I had a good download overnight - actually I slept through almost all of the night, which seems to make M&D very happy, but a bit nervous that I'm getting enough food. They weighed me again today and I'm now 4.14kgs so still gaining weight well - so no worries on that score.

NO TUBES !!!!!
Mum switched the noisy oxygen concentrator off as soon as she got the news - before she even took the tubes from my nose! And I was very happy. Which I showed by crying for most of the day.

A rare quiet moment - in the 'happy chair'
And when Daddy came home from work, he was so excited he span me round and round because we didn't get tangled up.

I like snuggles
And now it's night again so the tubes are back in and the machine is back on - but the end is in sight.

Hugs to all,
Arthur x

A third of a year so far!!

Well I'm 4 months old today! And I'm happy, and fat, and cute and home!

Mum and Dad went to see Peter Jones again yesterday - more pressies for me. First up is a Baby Bjorn - this is a rather snuggly carrier which allows me to stay strapped onto the front of M&D whilst they have both their hands free. I rather like it - it means I go everywhere they go and I feel very safe. So I'm staying nice and quiet whilst I'm in it - everybody's happy.

The other pressie was a vibrating comfy chair for me. I know I've already got a rocker but I get quite cross if M&D stop jiggling me in it. This means I have to sit on the floor next to them when they eat and they use one foot to nudge my chair. Wrong speed or quality of jiggling and I scream until they get it right. Apparently this is a bit irritating, hence the new chair.

It has musical fish attached - honestly - musical fish! And it vibrates, which makes me all sleepy, and this makes M&D very happy!

It's been a tiring day today. So I looked cute as a button all morning then fell asleep on Mum this afternoon.
Happy sleeps
Which meant I conserved all my energy for this evening. Now I realise I'm meant to be being good tonight as Sunday night is 'download' night. But I'm not ready to go to bed. I know it's 11pm and M&D are looking dead on their feet but when Arthur is awake, all Arthur's friends (and parents) have to be awake too.

As I type we've reached a stalemate. Me crying, machines alarming, Mummy cuddling. More news tomorrow I'm sure.

Love to all,
Arthur x

Saturday, 21 May 2011

The end of the week

Hello all,

Some more firsts for this little man.

Yesterday Mum and I went to IKEA. Now I haven't been before so I don't know what it's normally like but, compared to Mum's friend Peter Jones shop, it seemed a trifle busy. Mum said we'd done really well as we came out with a chest of drawers and nobody got hurt. Then I had my first trip on the bus for my first visit to the hairdresser - just to watch, but I seemed to be the centre of attention.

Slept Ok. Then this morning Mum seemed to be keen to look her best. I decided to cry all morning so she didn't forget me. I think it helped. It turns out that we we're off to the Royal Institute of British Architects. Not to admire the building (quite nice but utterly buggy/wheelchair unfriendly - architects!) but because Mummy was graduating as a fellow of the Royal College of Radiologists. This was quite a big deal, though I wasn't allowed in because I'm small. So Dad and I stayed outside and watched through the doorway. Dad looked very proud of Mum. I cried and had to be fed just as Mum got to receive her diploma - even the President of the College noticed!

A very, very proud Mum
When we got home M&D took me all the way to the top of the house - I'd never been so high before. I saw the room which is going to be mine when I'm bigger. And Mum and Dad put the Ikea chest of drawers together - and still nobody got hurt! All in all a lovely day.

Wishing you all a good night,
Arthur x

Wednesday, 18 May 2011

Interesting day!

LOTS happened in the last 24 hours. In no particular order:

  • My toes are gorgeous
  • I slept all the way through the night - this was clearly an accident on my part but fits with my master plan to lull M&D into a false sense of security
  • I remain very cute
  • I passed blood in my urine - and just in case M&D didn't get the point I also pushed out a small blood clot while they watched. Cue panic. M&D ring the outreach team, who said see the GP. GP offers an appointment 90mins later (max points) and sees me saying - 'best they go to the hospital when they're this small'. The hospital Emergency Department see me straight away and the doctor turns out to be one of Daddy's friends. And my urine gets looked at under a microscope. Possible UTI (urinary tract infection).
  • So I've started on antibiotics (again)
  • I seem to be coping with most of my feeds sitting up which makes it easier to look around
  • Mummy gave me a manicure - apparently I was a bit scratchy
And now for some pictures!

Just one dose of all my meds. Some of them are really yucky.


Mummy filing my nails, as I try to escape

"Feed me. Feed me now!"
Love to all,
Arthur x

Tuesday, 17 May 2011

Hammersmith revisited

Evening everybody!

Yesterday was a standard day.  Dad went to work and Mum looked after me.  One of the Outreach nurses came to see me, weigh me and pick up the download machine to work out what my oxygen requirement is now.

I now weigh 3.96kg or 8lb12oz and I did well on my download so my oxygen has now been halved again to 0.05litres a minute.  All very positive and getting ever closer to being tubeless.  The weight thing is also good as that weight increase was since I changed to 'regular' formula rather than the calorie-rich formula for premature babies.

Today we all got into the car and headed off to the Hammersmith MRI unit for another go at getting fancy pictures of my insides.  Last time I wriggled around and was very interested in everything and everyone around me.  This week, I slept soundly and the doctors got all the pictures they needed.  These pictures are going to be scrutinised by a radiologist who specialises in babies' scans.  Mum looked at them whilst I was being scanned and she told me I definitely have a brain and a body.  Phew! That's a relief.

Full 'pupa' mode pre-MRI

Because I slept SO well this afternoon, I was VERY awake this evening and I was hungry.  M+D took a while to work out what I was trying to say.  They tried changing me, putting my down for a nap and cuddling me before working out I was hungry.  They are a bit slow sometimes.

There's a mouse in my house!

Dad and I did some dancing too.  Well, I say Dad did some dancing.  Actually he sat on the sofa whilst he jiggled me about but I'm sure you get the idea. 

More presents too.  Thank you Jo and John.

Oh, and congratulations to Franzi and Mike on the birth of their baby boy.  Another Arthur!  Looking forward to meeting him and teaching him all he needs to know about manipulating parents!

Bye for now and love to all,


Sunday, 15 May 2011

Crosspatch Arthur

Hello all,
Yesterday (Saturday) I spent at home looking utterly adorable. My parents friends Ben and Sam came to see me and I tried to look my very best! They gave M&D lots of advice (Sam is a baby doctor) about how to cope with little people (they've got three). I think M&D found it very reassuring to know that there's no such thing as a new problem with children - and far fewer rules than some might have you believe (especially in books!).

Funny sort of day today (Sunday). I woke for food shortly after 3am. Mum distracted me until 4am and then I had my food. My revenge for this enforced delay was to properly wake up and then stay awake until dawn.

Mum and Dad took me down to Sussex to see Granddad and Granny E. I find it very easy to fall asleep in a car, so I snoozed my way down there. Then we went for a little walk and I slept. Apparently we fed the ducks and the ducklings (more like duck teenagers).
Feeding the ducks with Granddad and Granny E

Duck teenagers - almost as hungry as me!
Then I had a feed. Then I slept. Car journey home - more sleep.

That seemed to be enough sleep - so I thought I'd try crying. Proper fractious, not stopping if I'm changed, or cuddled, or jiggled or bounced or anything. I getting very good at it. As I type it's 10pm and I'm giving crying a brief rest for another feed. I'm debating what to do overnight. Though apparently I have another download tonight so I may be good.

We'll see.

Love to all,
Arthur x

12th May

Hello big people - this post got lost when Blogger.com crashed - sorry,

More deliveries came today (Mum may have been a bit over zealous on the internet shopping) so I got 3 new books and pictures for my cot.

Dad went to work today and became my postman.  He brought a present back from a lovely student called Katya.  Thank you so much.  It's very generous of you especially as you've never met me.  M+D also say thank you for their chocolates.  They've gone the same way as the cakes - I didn't get any!

It's quite nice having Dad at work.  I get all the attention from Mum during the day and then Dad comes home and fusses over me.  I do my very best to stay awake for him.  Mum helped by swaddling me into the 'pupa' position earlier so I was able to have an afternoon nap.

New trick - downhill crawling. If Dad puts me on his chest, when lying down, I wiggle like mad with my arms and kick with my legs and can propel myself along. It doesn't seem to work on the flat or floor yet - but I'm working on it!

Still no awake smiles yet but M+D can tell I'm close to it.  As a result, they won't leave me alone and the camera is out ready for anything at anytime!

Love to all,

Friday, 13 May 2011

Sorry about the delay!

Blogger.com - the website - has been in "read-only maintainance mode" for the last 36 hours. So I'm sorry about the delay to this post. If this keeps happening I may change my site. Enough whinging and on with more about me!

Mum and I were left to fend for ourselves today as Dad went to work.  Apparently that's how it will be for the next 6 months or so.

So far so good.  Mum fed me, changed me and dressed and fed herself.  Garden furniture delivered so let's hope the sun comes out again.  Oxygen cylinders for trips out delivered and prescriptions and parcels picked up.  Thank you to John and Judy for the present.

I'm managing my new food ok.  A small vomit but no disasters!  I was awake for the whole morning and lunchtime so I enjoyed good conversations with Mum.  She read to me, sang to me and took me into the garden for my approval of the new furniture. Looked good to me but then I have the eyesight of a newborn!

Sadly still on Oxygen - but snapped during a prong change


We popped out for a swift diet coke this evening for one of Sally's leaving do (one of Dad's colleagues) which was nice apparently.  I slept soundly all the way through. Apparently I was picked up and even waved around - I didn't stir. Well I had been awake all morning and afternoon and the buggy trundling is very relaxing.

Love to all,
Arthur x

Dad went to work but so did Mum, with me in tow.  She had some paperwork to get signed at Northwick Park, where I was born and Mum normally works.  We got there at 11am and left at 4 having completed the paperwork and seeing LOTS of Mum's colleagues.  I looked super cute and was generally well behaved though  I did have to remind Mum to feed me as she was talking so much.

We popped up to the NICU at Northwick Park to say hello to the doctors and nurses who looked after me for the first few hours after I was born.  M+D are so incredibly grateful for their hard work.  If it wasn't for them, I wouldn't be writing this blog and M+D would be on a very different journey indeed. A bit of a sobering thought for a Friday evening.  Sorry.

It's the weekend tomorrow so I get M+D to myself for 2 days.  I'll let you know what we get up to in my next post.

More love to all,
Arthur x

Tuesday, 10 May 2011

Busy day

Lots happening in my little world at the moment. Some headlines:

Weight - I'm now 3.84kgs or 8lbs 7oz which is over the 50th centile. That means I'm slightly heavier than average for a normal 2 week old baby. And I'm 52cm long with a head circumference of 36cm - again all just over the 50th centile. Given that I was extremely premature this is very good news. And given that all my numbers plot to roughly the same 'average' size it means I'm all in proportion, which is good.

Food - the nurses are so impressed with my weight gain that I can be changed to normal formula. Apparently I'll get my first taste tonight. Let's see if I like it.

New food. New bib (thank you Bob and Jackie). 

Downloads and oxygen - I had a super download with no desats whether feeding, sleeping or pulling the prongs out of my nose. So they've halved my oxygen. And I'm just fine, which is good.

Sleep - I can sleep. I get fed every four hours or so. At 8pm - then I go for a little kip (after a bit of crying and yelling - obviously). Then again at midnight - after which I get swaddled. I don't think I like being swaddled but it does seem to help me sleep. Then there's the weird 4am feed during which either M or D manage to feed me without either of us seeming to wake up. Then I sleep again. Yesterday I didn't wake up until 10am. I can't tell the time, can I? I'm a newborn baby. So why was it my fault that M&D overslept as I'd failed to wake them. So ungrateful. Won't make that mistake again.

Tests - I went to the Hammersmith Hospital today (West London, just by Wormwood Scrubs prison) for my MRI scan to see what my insides look like. But I'd been asleep that morning so I wanted to play. Eventually they gave up and I have to come back next week. Mum says I have to learn to sleep on command. Fat chance.

Privacy - I seem to have lost mine. Dad has set up the super monitor Granddad P and Nanna I, bought me. Apparently they can now sit downstairs and watch and listen to me scream in high definition. I prefer cuddles but, many thanks for letting M&D feel safer for watching me without always having to be next to me.

Parents at home. Dad goes back to work tomorrow so I should be able to wind Mum up to breaking point given a whole day of just the two of us!

I am a happy little man, and life is good
Love to all,
Arthur x.

Monday, 9 May 2011

Just being small

That's what I'm doing - just being small. Small and cute - obviously. Small and gorgeous and cute - since we're discussing it.

Thank you to Simon's colleague Caroline and her family for the outfit!
I am attempting to stop being small - mainly by drinking. My problem is staying awake. Now I'm not sure how he does it but Dad can manage to sneak a whole feed into me without my waking up. I'm not sure this is fair.

Quite a busy day today. We went to Giraffe for breakfast with my Uncle Toby, Aunty Julia and my nieces. This coincided with my feed time - so Mum and Dad brought my food with them. Sadly once all warm and lovely - they dropped it just before putting the teat on. So I only got 30mls. Not a happy bunny. And an important lesson learned about always taking twice what I need.

The balloon was no compensation for lack of food!

It was lovely to meet my nieces - they are 2 and a lot, and 7 months respectively and very lovely. I am looking forward to playing with them when I am bigger. Four adults, three children and no-one remembered to take a photo of us all - sorry! Julia had baked a yummy cake - once again, I didn't get any.

My yummy cake from Julia
Nice moment today - Mum was getting me ready for my bath and I heard her say to Dad: "a dry nappy, we can put that back on". Well I'm not to be skimped on. So I peed over everything in sight!

I'm having a download tonight so I'll try and be extra good. Let's hope it works - I'm very worried that Mum or Dad will trip over my tubing as they go up or down our stairs.

A peony in our garden, spring is sprung!
Love to all,

Sunday, 8 May 2011

More of the same...

Today was all about consolidation.

I continue to have brilliant awake periods of a couple of hours at a time which reduces M+D to strange, gooey creatures only capable of sitting and staring at me.

I continue to feed in my special, left lateral position in order to avoid me getting confused with breathing, sucking and swallowing.

I continue to fill my nappies at an extra-ordinary rate with a luminous yellow quality (it's the special premature formula and vitamins I'm on).

I also continue to enjoy being in the buggy and the car.  M+D and I went to Westfield today and we trundled round and bought me a cushion and a laundry basket and a bin for the living room.  Oh exciting!
We also looked at lots of cute clothes for me but M+D say that I am growing so quickly that they are going to hold off buying more stuff for me at the moment.  My time will come though...

Arthur xxx

Friday, 6 May 2011

Ready for the weekend

It's Friday in case you hadn't noticed.
As snug as a bug in a rug!

A lot has happened this week, in the world, not just at home.  M+D have saved newspapers from my 'due week' to show me when I'm old enough to read.  They've got quite a good collection now!

Yesterday one of the nurses from Tommies came to see me.  She weighed me (8lb) and dropped off the download machine ready for Sunday night.  Hopefully this means my oxygen requirements can be weaned.

Today, Mum had to go into her work for a bit so Dad was left in charge.  He did quite well, we went for a long walk while he did errands, and the house was still standing when Mum got home and I was asleep on Dad's chest whilst he dealt with work emails.  Mum was pleased that I'd kept Dad in check - he thinks I'm sleeping, but really I'm spying!
Quietly spying on Dad

All in all, things are going well and M+D are settling into my routine so I'm happy.

I'm meeting my cousins this weekend so hopefully the weather will stay nice so we can go for a walk/trundle in the prams.

love to all,
Arthur xxx

Wednesday, 4 May 2011

One week old! (corrected)

One week past my due date and settling in at home very nicely.

Do you think my eyes look different?
Today -
Dad finished my bathroom. It has a huge bath. I'm not sure that's for me just yet! It even has bold black and white tiles which will be easy for me to see.
I went for a lovely walk with Mum so she could get me more food as I'm drinking it at such a rate.

And I had my first minor "poo-disaster", apparently a full poo-disaster involves covering all your clothing, a minor one involves getting through two nappies and two outfits before mum gives up and dumps you in the bath!

Me just loving my bath time
And I had a nice play in my bouncer then I practiced facial expressions!

All in all, a lovely day
Arthur x

Tuesday, 3 May 2011

Routine Tuesday

Delighted to be dull. That's the motto of today. Mum and Dad 'got nothing done' because they spent the whole day at home cuddling me or staring at me. I don't think this is time wasted (and I know they don't either - really).

I have decided I prefer being fed every 4 hours and I think I've more or less got M&D trained. I haven't yet completely mastered winding but I'm sure I'll get the hang of it eventually.

Still sleeping most of the time, pooing frequently and farting constantly.

Oh and Mum thinks my eyes are getting paler - Dad's promised to get a photo soon.

Sorry today hasn't been more blog-worthy but dull is good!

Love to all,
Arthur x



Another yummy day.
Slept through most of the night. Still practicing smiling while I'm asleep - M&D will have to wait a little longer before I smile at them!
Granddad and Granny E came to see me which was super. And we went for a long walk and they had a lovely lunch. I got my usual.
Chatting with Granddad

And I'm getting ever so many cuddles these days. Anyone would think my parents hadn't been able to cuddle me enough before.
I like cuddles.

Hugs to all,
Arthur x

Monday, 2 May 2011

Day of 'rest'

Another happy day at home.

Strangely I forgot about my training regime for Mum and Dad last night and accidentally stayed asleep. Indeed if Mum hadn't forcibly woken me up at 5.30am I might have slept right through. She was anxious I get regular feeds - very kind of her but I think it should be for me to decide when I wish to eat.
Mum having 'words' with me. (No, I don't sleep in the big bed)
I have also learnt to poo just after I've had my nappy changed. A bit naughty, I realise, but the look on M&D's faces is priceless.

And we went walkies again. This time to the Southbank (just south of the river Thames in central London). We went for brunch to Giraffe. This is a very child-friendly chain of restaurants. Last time M&D went there they felt like they were the only ones without their baby - so it was nice that this time they had ME! And we went back to St Thomas's to collect two cards and two parcels - many thanks to Arna and Catherine for the pressies.

And I got home and felt super wide awake so Dad read me a story called "The places you'll go" by Dr Seuss. It too was a present from Leanne and family on the Isle of Man. Thank you - I looked at all the pictures very carefully and Dad reads very well. So I look forward to hearing it again soon.
I've got bugs on! (Actually I can't yet sit up - Dad is just out of shot!)

And then friends came round and brought a yummy cake. And once again M&D ate cake and didn't offer me any. This is getting repetitive.
Fred (holding me) and Sherifa made the cake. Apparently it was lovely, humph.

And then it was time to start my 'download' (the 12 hour recording of my blood oxygen saturations). And we realised there was a problem. The recording is done on a special machine. One end is attached to me, and one end to mains electricity. And the cord is quite short. And I also have oxygen tubing.

Well by the time M&D had finished rearranging the bedroom so all the cords/tubes would reach I was properly cross. So I pulled my oxygen off. Apparently this was the wrong thing to do whilst having my levels checked. I'd like to point out that my numbers are super-good whether I've actually got the prongs up my nose or not. But M&D say I have to wear them and be well behaved. I think that parents who don't share their cake (which had MY name on the top) are in no position to give orders.

Hopefully my overnight numbers will be good. Then I can stop this nonsense and just be a normal baby. (Though I'm very grateful they're so careful with me - obviously)

Oh, and 60,000 hits so far from 57 countries. I think my biggest proportion of a continent (other than Oz and NZ) is the Americas - Canada, US, Mexico, Guatemala, Costa Rica, Bolivia, Peru, Columbia and Argentina so far.

Love to all,
Arthur x