Saturday, 30 April 2011

Sunny Saturday

Evening one and all!

I did another first today.  I went and met the mysterious Peter Jones and M+D came away with more stuff for me.  They also got a nice lady to do clay impressions of my left hand and right foot.  They got all sentimental whilst she did this.  I got slightly cross and tried to grab the clay so had to have my hand print repeated.  Apparently I'm quite strong!

I am not amused!


Whilst we were all in W. London, we popped into Chelsea and Westminster to say hello to the people on the Neonatal ward there.  M+D caught up with some of the parents and lots of the nurses and doctors saw me.  They were all very surprised and pleased to see me and all commented on my cuteness and my weight.  It was super seeing everyone again and being able to show everyone how well I'm doing. Whilst I was an in patient, M+D found great comfort in knowing babies 'escaped' and went home and I hope we've now been able to do the same.

Practicing my 'model' shot - looking into the distance


I'm having my first download tomorrow night at home so the Out Reach nurse dropped off a machine that goes ping to look at my oxygen needs and hopefully start weaning down.  Getting ever closer to tubelessness.  Actually the weaning will take at least 4 weeks which I guess is a good thing as EVERYONE knows how much I dislike being rushed.

We have been asked by the Communications Department at St. Thomas' to remove their address and the names of the nurses from the blog.  This has now been done although people still requiring their address will be able to find it on their website. Arthur is of course home now so no more stuff should be sent to the SCBU.  Thank you for the ones already received. 

TTFN,
Arthur xxx

Friday, 29 April 2011

Many firsts

My first night home with Mum and Dad. Very exciting. Far too exciting for sleep, since you ask. And I was hungry, and I needed cuddles. I'm sure I'll get M&D trained eventually but they were quite slow in responding to some of my yelling.

My first royal wedding. I was quite tired after last night, to be honest, so I may have slept through most of it. No babies either. And what on earth did Eugene have on her head? No class if you ask me.

My first street party and pub. And may I recommend the Black Dog in Glasshouse Walk near Vauxhall. New young landlord - excellent beer (for Dad) and fabulous food. Then I got to watch cricket - very British. I may have fallen alseep again - I need to conserve my strength for tonight. It will take more than one night to have M&D truly at my beck and call - but I'm working on it!

Love to all,
Arthur, a free man, E
x

Thursday, 28 April 2011

Three steps forward...

Hello one and all.
Last night went well.  I didn't stay awake all night, in fact I only woke up once for food.  This is all part of my plan to lull M+D into a false sense of security before I unleash hell.  I did have one  moment when I went really quiet and still and tricked Mum into thinking I wasn't breathing.  She turned on all the lights, woke Dad and me up briefly before Dad reassured her I was alright.  Sorry Mum but apparently many babies and Mums have these moments, so we're are just being normal!
Last photo as an inpatient!

So we all survived the night and now I am writing this blog from a new location.

Yes....I have escaped Tommies and am writing this from home in SE1 with M+D.  The nurses were impressed with their parenting skills so they let me go home with them.  Mum went off home to collect my buggy and car seat (and camera) and trundled them back to SCBU.  Cue strange looks from passers-by as the car seat didn't contain a baby.
The threshold of my new life!
And I slept through it...

M+D were given lots of stuff to bring home with me (oxygen tubing, dressings, formula, drugs, out patient appointments etc...)

We are home now and chaos has not yet ensued but I am just assessing the lay of the land.  Hee hee.
All these cards for ME!!! (Look closely, I'm jumping for joy)

I am sure you will understand if the blog goes a bit quiet for the next few days as I settle in to my new establishment but I will try to keep everyone updated as and when I can.

Love to all and good luck to Will and Kate on their big day!

Arthur xxx

Wednesday, 27 April 2011

Day 0


Now, I know I’ve been writing this blog for a while now, but today I am officially 0!  It’s my due date.  No more ‘gestational ages’, just corrected age from now on. 

To celebrate, Mum has joined me and we have our own room to get to know one another before I escape for good.  Mum has done OK so far and has negotiated the lifts twice.  For those of you who know Tommies, you will understand the lift comment.  Why do all hospitals have crazy lifts?  I appreciate I have only experienced 2 hospitals so far but honestly.  They have a logic even a newborn cannot understand.  And I think there are lift ghosts here in SE1.  Why else would they stop on every floor with no one waiting to get on or off them?  Hmmmm.

Hello! I'm 0 today.  It's taken me 97 days to get here

Anyway, lifts conquered and walk done in the lovely sunshine again.  I quite like the outdoors and the trundling in a buggy is very soothing indeed.  I get all calm and content and forget about being hungry, for a few minutes at least.

I had my developmental check today with one of the Consultants from the unit.  He was very brave and took my nappy off and examined me.  I did a wee but didn’t manage to get him or mum!  Must try harder.  He said he thought my left leg was a bit stiff as a result of the haemorrhage on the right side of my brain but that my arm wasn’t stiff and otherwise I was doing ok.  He also said he thought I would smile soon.  Mum is now watching me like a hawk.  She says I smile in my sleep a lot but apparently that doesn't count.

Dad is joining us later this evening and he is bringing in a cake.  He says this is for me but I bet it isn’t cake-flavoured formula!  I’m sure the grown ups will enjoy it on my behalf.

22:11 update.
Dad has now arrived and just as I suspected, the cake wasn't really for me.  M+D and the nurses ate it in front of me!  As revenge, I am now planning to stay awake all night.  I have had 150mls of milk in the last 3 hours in preparation.  I'll let you know the result tomorrow...




Love to all,

Arthur xxx

Tuesday, 26 April 2011

Today, I have been mostly....

....awake!

Today has been a super day.  Granny W came to visit and although I'd been sleepy in the morning, I was wide awake for the whole afternoon from 4pm until 7pm.  I went for a walk (well, I was in the buggy) but it was outside which was nice.  I had cuddles with Mum, Granny W and Dad.  I went in the bouncy chair and almost enjoyed it this time.

Cuddles with Granny W

My download from last night was good so my oxygen requirement will not have to change before I come home and I was so well, I had my second immunisations.  Regular readers will know how much I disliked my last set (incubator, CPAP and anitbiotics).  But this time, not a peep and my sats and heart rate have been steady all day even whilst bottle feeding.  I'm getting to grips with the 'on demand' feeding too - I can be VERY demanding but the nurses and Mum have been quite strict, so no 2 hourly snacking is allowed!

Preparing for my walk outside.  Just call me Bomber Eccles!

In fact, I've been so well behaved, that the nurses and doctors have asked M+D to room in tomorrow and Thursday ready for the big day on Friday.  Not THE wedding but may be MY coming home day.  Now I know I got everyone's hopes up last time I said I was coming home so this time I'm trying not to get too excited and so are M+D.

Coat for outdoors. 

All in all, a brilliant day with lots of exciting plans for the next few days.  Fingers and toes crossed for Friday.  I'll try super hard to be well behaved!

love to all,

Arthur xxx

Monday, 25 April 2011

Just another manic Monday

Monday. Well imagine my surprise to find my first nurse here at St T's, looking after me again.

She's very strict with me! She says I need to spend more time awake. Mum and Dad are backing her in this. So I found myself sitting in a chair rather than lying in my comfy cot. More than that - the usual waitress service appears to have stopped - I had to ask for my dinner. Not just ask even. I had to throw a full-on wobbly and shout.

Humph, I have to ask for food!  But look, no NG tube!


It seems I'm no longer getting tube feeds at all. I'm only to be fed when I ask for it. So I have to learn to be more vocal. And hopefully I will get hungrier and more demanding.

Just let me sleep!

And I'm having a 'download' tonight, where they check my oxygen levels are good enough. I haven't had a desat for ages so this should be fine.

All part of preparing me to go home - good news indeed!

So enjoy the build up to the greatest date in the calender this year which occurs this week - my due date on Wednesday.

Who's looking at you kid?


Love at all,
Arthur x

Sunday, 24 April 2011

Happy Easter!

I do hope all of you had a nice Easter. I had a super day, thanks for asking.

Mum and Dad came, and since I'm still too small for chocolate, Dad selflessly ate some for me. Then I had a bath which was fine though I'm still not completely certain whether I like getting wet. It always seems rather a surprise. And because Mum puts oil in the water (for my skin apparently) I became seriously slippery which may have caused Dad a slightly scary moment.

Dad made sure I was awake before my bath
And Dad did some pictures with me.

Dad's a bit obsessed with this one, for some reason.
Then I had a lovely kip for the afternoon.

While I was asleep, I dreamt of rabbits
And then it was 6.30pm and I was hungry. Properly hungry. I may have let people know. Ok, everybody know. And M&D were then very pleased when I managed to wolf down a full bottle with no problems in less than 15mins. Told you I was hungry.

Happy drinker

Less keen on being winded
And then I got properly cross and Mum had to make it better 'cos Dad just kept filming:

video

So I'm getting there. My lovely nurse said she hopes I might be able to go home at the end of next week. Let's wait and see - one day at a time...!

Love to all,
Arthur x

Saturday, 23 April 2011

Snuffly Saturday

Hello all,

Today was a peaceful day to celebrate my 14th Saturday and 13th complete week in the great wide world.  As a present, M+D have given me something quite special - my first cold.  Yes, I have a snuffle, proven by Virology and everything.  Mum was a bit worried, but the nurses said they weren't too concerned and I'm not being barrier nursed.  Also, if I'd been born this week, I would have been sent home with M+D with or without a cold.
I've had my transfusion so I'm less pale and a but more perky.  So much so that I polished off 2 bottle feeds over night and another 2 during today.  Still not ready to have my NG tube removed, but getting there slowly but surely.


Happy Easter for tomorrow, Love
Arthur x

Friday, 22 April 2011

Good Friday

Good Friday (do you see what I did there?)

Three months old today!! Three whole months - 90 days! Only 5 days to go until my due date.

A calm day - Mum and Dad came to see me. My transfusion should be happening this evening. Well, you know I'm a bit hard to get IV lines into, but I now have a new problem - because of my previous transfusions I have made antibodies to new blood. So getting blood for me will be a bit trickier. It's solvable but will take a little longer (doesn't everything!).

I realise I'm a little on the pale side!
Feeding is going well - I'm staying awake for most of each feed and M&D are very good at pouring the rest down my tube so I don't get too tired.

Feeding with Mum
Life's ok and things are getting better - Happy Easter to you all from the confines of the ward with one of the best hospital views in London!


What, there's a view??

Love to all,
Arthur x



Thursday, 21 April 2011

Thursday thoughts

Good evening one and all,

A peaceful day here on the South Bank.  The sun has been shining and I have been doing my growing, pooing and a bit of feeding....from a bottle!

The Speech and Language lady came to visit to see if I could manage a bottle feed and I tried extra hard and managed about two thirds of my feed before I got a bit sleepy but I didn't drop my sats and my heart rate stayed up so I passed my swallowing test and I'm allowed to bottle feed!  Yippee.

The therapist did tell M+D that I can only be fed by bottle if I'm awake so some of my feeds will still be via the tube and some may be a combination if I fall asleep during my feeds but it's still progress.


To celebrate, I did a massive poo whilst Dad was changing me.  I got him, the cot, my bedding and my clothes (a new record for me) and then Dad put me into one of my baby grows and I popped the poppers on it because I'm so chubby.  Oops. M+D will have to get me bigger clothes again.  This is becoming a weekly event.

My weekly blood tests show that I am a bit anaemic again so I will have another transfusion.  Regular followers will know this isn't my first transfusion and it certainly won't be my first cannula but it is my first cannula and transfusion at Tommies.  M+D made sure everybody knew what a tough cookie I am and how hard it is to cannulate me so they have been warned!  The transfusion will make me feel better and might mean my oxygen requirement goes down too. Hopefully, I'll have more energy so I'll be able to practice feeding over Easter.

All in all, a positive day and a plan for the Easter weekend.

love to all,
Arthur xxx

P.S.  P & L-L saw (and held!) me today and thought I was utterly delightful and wanted to take me home with them!  I am lovely so that's OK.  A  xx

Wednesday, 20 April 2011

39 weeks old!

Yes folks, I'm now 39 weeks old.  Only one more week until my due date.

I am being rested with regards to my feeding, so all my formula is going down my NG tube which I have to say is beginning to frustrate me.  No matter how much I moaned, M+D and my nurse wouldn't give in. So no bottles for me.  They tried to fob me off with a bit of formula on my dummy but I wasn't fooled! Just a small tantrum! Still, it's good practice for my sucking I suppose.

More of my neighbours are preparing to escape ready for Easter which is good for them but a bit hard for me whilst I stay in hospital. If you go anywhere nice for Easter feel free to send me a postcard:

ADDRESS REMOVED AT REQUEST OF ST. THOMAS' COMMUNICATIONS DEPARTMENT

Post can be sent to:
c/o Dr. Simon Eccles
Accident and Emergency Department
Homerton Hospital
Homerton Row
LONDON
E9 6SR

In the meantime I'll just keep calm and carry on

video


Love to all,
Arthur x

Blue for backwards

Evening all. 

Today started badly and then got a bit worse.  Mum got to the hospital to be told that I had managed my feeds by bottle overnight - so far so good. And that my nasogastric tube had been removed - excellent, if I don't need it. But that I had been going 'a bit dusky and having some desats' during those feeds and my oxygen needed turning up to 200ml/hour - far from good when I was already tired and meant to be resting. 

It went properly wrong when Mum tried to feed me watched by the Speech and Language therapist.  I couldn't manage a bottle feed without going blue, dropping my saturations and my heart rate despite all the tricks.  The therapist tried me lying on my side and feeding me with a slow flow teet but I still couldn't cope.  She was somewhat irritated that my NG tube had been taken out before she had assessed me and said that swallow wasn't safe and that I needed a new tube and shouldn't have anything by mouth until I'd been investigated.  I don't like having tubes pushed through my nose and my nostrils hurt.

Another tube, different nostril



So M+D had their first 'room of gloom' meeting at St. Thomas'.  Apparently their 'quiet room' isn't too gloomy - it has windows, but the conversations can still be a bit disheartening.

Apparently the conversation went a bit like this:
Dad - "We have four areas we want to cover
1. We are not unhappy with Arthur's care and remain very grateful for all the hard work done. All decisions have been sensible with the information available at the time.
2. We're now in our thirteenth week commuting to hospital. We've run out of enthusiasm, and out of energy. And we're getting a bit frustrated by Arthur's lack of progression and delayed discharge.
3. We want to know what the plan is for the next few weeks - what combination of home or hospital, tests or watching, treatment or rest.
4. Can you improve the coordination and communication. NG tubes coming out and going in again. Tube feeds/bottle feeds. Wide teats/narrow teats. Etc. We trust your judgment but sometimes have difficulty knowing what that judgment is."

Enough to make me feel slightly sorry for my consultants!

It seems I'm a bit slow on the feeding thing and need to be taught.  This may just be because I'm a boy (no really - sexism, on a neonatal unit, I ask you!) or it may be more serious. The plan is nil by mouth for two days to rest me properly and then another formal swallow assessment.
If I still have problems then I may get to meet Mum's friends from radiology and special throat doctors with frightening sounding camera thingies.

And I need to get my strength back. All this is likely to take around 2 more weeks in hospital although I may come home sooner (or later) than this.

On a positive note, I now weight over 7lb (3.26kg), have had an extra eye check which was normal and can still poo at inopportune moments when Mum is trying to change me.

Growing out of my clothes fast!


Love to all,
Arthur xxx

Tuesday, 19 April 2011

Monday again

Dear All,

So it's Monday again. My 13th Monday since birth. I've now had enough of hospital Mondays.

I'm trying hard to get my strength back. I've fed fairly well today. Reasonable bottle slurping, few desats. But I'm not yet fully awake. Indeed, the speech and language therapist came to see me - to make sure I can swallow properly - and I was so deeply asleep that she will have to come back. Sorry.

My expression for most of today
And my Granny L came to see me today after looking after my cousins - I didn't even wake up for her.

But Mum had a very good discussion with my consultants today and their plan is pretty clear: let me get my strength back and wake up again. Then let me get to feed properly. Then I can escape. I'll do my best!

Sunset from my bedroom!
Oh and I now weigh over 7 lbs. Dad says I'm a proper little fatty. So rude.

Love to all,
Arthur x

Sunday, 17 April 2011

Don't rush me...

Yesterday was lovely - a nice little look at the fresh air and big outside world, but also rather scary.

And bottle feeding is fine, but also quite hard work. And they did push me to all bottle feeds very quickly.

So today I decided enough was enough. I didn't want to leave hospital just yet.

My lovely nurse noticed that I changed colour a few time whilst feeding first thing this morning so she put me on a saturation monitor for my lunchtime feed with Dad. And I dropped my pulse and heart rate. Quite a lot since we're on  the subject. Dad was trying not to be too alarmed; after all, we've been here before. But when my nurse saw that I was saturating at less than 50% she almost threw the baby she was feeding back into its cot and hoicked me out of Dad's arms before giving me a thorough duffing up to make sure I was awake. It worked, and once I woke up my numbers looked much better.

To save too much dull detail - it seems I had used up all my energy reserves coping with the bottle feeds. And because my lungs are still very small and fragile - my reserves are rather small. So my oxygen was doubled to 200mls an hour (or 0.2l/hr) lots of bloods were taken, and Dad managed to feed me once I'd woken up. It seems if I'm too knackered, I forget how to coordinate feeding and breathing. Ooops.

So I've gone back to alternate tube feeds and bottle feeds. Rooming in cancelled. Going home cancelled. Mum and Dad rather disappointed. Then I tried desatting when Mum fed me - which was probably a bit much for her reserves as well. Sorry Mum.

It the midst of all this my Granddad P, Nanna and Aunty Lizzie came to say hello. It was super to see Granddad P and Nanna again - I know it's a very long trip for them. And it was lovely to meet Lizzie for the first time - all the way from Newcastle. And she gave me my first toothbrush. I promise to use it as soon as I get my first tooth!

Oh and I haven't been keeping you up to date with my tests. I had a heart test - which showed that my PDA is still P (that's almost a joke to doctors). It means my duct is still patent and having only a small effect on my heart. No need to do anything now - but I'll get another look done as an outpatient. And I had a special test today and I can hear with both ears - twice as many as Mum, so that's alright then!

I'm sure I'll get to go home eventually - but not just yet. A bit more strength needed.

Love to all,
Arthur x

Saturday, 16 April 2011

Fresh air!

My escape plan is going brilliantly.
A brief moment without my nasal 02
Winston Churchill or Chairman Mao - you decide
I drank all my feeds from the bottle today. And as a reward, I was allowed to go for a walk. So Dad and I toddled off to look at the river Thames (we had to stay in the hospital grounds). Mum went to see Peter Jones again - more stuff for me apparently.
So where am I?

Oooh, this is new.

Definitely in London then!

Then Mum got back and had to ring Dad as we'd been away from the unit for two hours and they wanted to check we weren't lost. To be fair, my sense of direction is pretty lousy and I still much prefer looking to the right, rather than the left (M&D are getting slightly irritated with this and keep rearranging my head when I lie down); but Dad knew where we were and got me back upstairs before my oxygen ran out.

Tomorrow I get to stay in my own room, which sounds exciting. And Mum and Dad do all my medicines, which sounds terrifying. One four times a day, one three times a day, one with every feed, one just in the morning and one just in the evening - easy!

And I played a trick on Dad today. I waited until he was changing my nappy and then I pooed and peed at the same time. And when he'd cleaned up - I pooed again. And when he'd clean that up - I pooed yet again. I don't think he realised how much poo I could store up.

He does now!

Love to all,
Arthur x

p.s. - 50 countries. Fifty! I'm pretty certain my parents haven't been to that many. I do hope I'll be well enough to travel when I'm bigger.

Friday, 15 April 2011

Nearly there!

6 out of 7

SIX out of seven

That's the number of full feeds I managed by bottle today. Three overnight and three during the day with one tube feed this morning as they worried I was tired - nonsense, I could drink for England, promise!

So Mum and Dad (and me, of course) are booked to 'room in' on Sunday. Rooming in is when we get to stay in our own little room at the hospital and pretend we've gone home - to see if we'll cope. I have every confidence in my parents. (Though between you and me, and don't tell anyone, I reckon they're very nervous! I'll try hard to be good)

Thank you Jude, for my Tigger costume.
Speaking of nervous; I had a yummy bath with Mummy today and the nurses had to tell her to put more water in. She'd been very careful to make sure I wasn't going to drown - but I also wasn't going to get wet!! They're first time parents - they'll learn!

Happy tired men!
The nurses have said they're aiming to get me home on Tuesday. Which is only some days away (I haven't done counting yet). Yippee.

Otherwise I've been good as gold. I've even settled into a once a day poo regime first thing every morning. How clever is that? It'll all change when I get home, of course. Just to keep them on their toes. Mustn't be too predictable!

I hope your days are going as well as mine,
Love Arthur
x

More of same!

Lovely day today. I managed three of my four daytime feeds today from the bottle, and I drank all of each of them without any problems! This is very good progress towards my all bottle, no tube-feed, world.

Success with feeding = home to Peter Jones. I don't know who Peter is but Mum has entrusted him with everything I need for my new home [Peter Jones is Amy's favorite department store, in London].

Otherwise all calm and stable here. M&D have promised to bring the video camera in again because I'm so wide awake for much of the day - and I want to say hello!

Hello to all my fans

Oh, by the way - I turned 38weeks old yesterday and have had 50,000 clicks on the blog, now from 46 countries. Ummm. Thank you!

Post feed relaxation


Love to all,
Arthur
x

Wednesday, 13 April 2011

Slurping cutie.

Hello peeps,

I know I'm cute but today my Mum and Dad reckoned I was super-cute.

I've been on cracking form when awake - though I'm quite tired much of the time. I'm still learning to feed - I managed half a bottle with Mum at lunchtime and almost the whole feed with Dad this evening. I'm slowly getting the hang of burping - and managed a burp straight into Daddy's ear, but I made it look like an accident.

Thank you to Gran for the clothes
I'm really not able to take all of my food by bottle yet - and that's the criteria for my coming home. So more practice needed.

So I may fallen asleep while being winded!
The good news is that M&D have had the house inspected. Apparently it passed. I'm nervous because I'm sure I heard them say that my room isn't ready yet. Apparently I have to stay in their room at first - at least it will mean speedy room-service. Oh, and my oxygen is being delivered on Friday. It's quite exciting.

I think Mum and Dad are rather fond of me. They seem to squabble over who gets to cuddle me first and Dad has taken to squeezing me ever so tight. I know they were very worried about me before but I promise I'm doing my very best to be ok.

Super-cutie
Love to everyone,
Arthur
x

Two good words

Today's blog is brought to you by the two words which best described me today:

Stable and quiet

Now followers of my little musings will know that me, and my parents, are fans of these two little words. There is nothing negative in either of them - and that's a good thing.

Stable first - I'm still on, my oxygen (100mls an hour, so ten times the C&W rate during the last part of my stay there) and still seem to be doing fine. They're doing another all night oxygen saturation recording tonight (the so-called 'download' which sounds like something nasty from a sci-fi flick). If I'm looking super-good then they can reduce my oxygen.
And tomorrow one of the outreach sisters is going to assess my new home. This has got Mum and Dad in a bit of a spin as my room isn't ready yet. Just because I looked sick for a while doesn't mean they can slack off on the curtains and carpeting. I expect it to be perfect when I get home. The visit is to make sure it will be OK for my oxygen bottles. These are rather huge and heavy apparently. So while I will be at home (yippee), I won't be doing any big trips to see anyone else.

Sssshhh!

The second word was quiet. And that's because, at last, everyone is realising what a fantastically good natured little chap I am. I've known this from the start but my parents are beginning to catch up. It has helped that my room mates are somewhat louder than me. All the time. No really, all the time.
So my lying there looking angelic and gurgling contentedly and only crying when I'm properly upset, and even then only with a purpose (stop something or start something else), is finally being fully appreciated for the wonder that it is. I do have a voice - it's just that I choose to be super.

Oh and Dad gave me a bath today which was slightly scary but at the end he wrapped me in the towel and threw the water away. So the key points went ok.

Careful now!


Love to all,
Arthur
xx

Monday, 11 April 2011

Motivation Monday

New week, new doctors and a plan of action.

As I mentioned yesterday, today was a big Consultant-led ward round.  Mum was there and they were very patient with her and listened to her concerns and answered her questions well.  Thank you. I did my best to behave during the examination too.

Assuming the pre-bath position


The Consultant said that she had already read some of my blog so she'd done her research before even meeting me.  At the end of the round it was decided that I should try without the diuretics and should have alternate feeds through the tube and using a bottle so I don't get too tired.  I am going to have another heart scan, hearing test and another eye test (hopefully my last now I'm over 37 weeks).

My feeding is improving again and I managed 2 bottle feeds with Mum with her winding me regularly but they tired me out a little so Dad fed me via the tube in the evening.  Still, I didn't vomit or go blue.  Bonus. And I've really got the hang of burping. Double bonus.

Actually that could have been worse

My 'download' was successful and my oxygen demand matches my supply via the nasal prongs so I will stay on that for now with just an apnoea (breathing) monitor. No more machine which goes beep! No more scary numbers!  I will have more 'downloads' as I get older and closer to coming home.

Mum went a little bit washing crazy at home today and washed a lot of cot sheets and things called muslins. Now that they're saying I'm nearly ready to come home, Mum is making up for lost time with her nesting!

M+D are hoping to give me another bath tomorrow.  I hope the other babies and their parents have waterproofs and umbrellas.  Things could get messy!

Elephants! Thousands of them!
Love to all,

Arthur xxx

Sunday, 10 April 2011

Sunny Sunday

Good evening,

It really is a good evening actually.  I've had a brilliant day and have managed one bottle feed of 56ml in the morning and another one this evening of 44ml, both without desats or bradys.  Well, not bad ones anyway.  My weight has remained the same at 2.74kg or 6lb 1oz or so.  My nurse explained to M+D that my weight gain may slow down now I've moved over to a different feed but that I have some fat stores so I won't starve.  Cheeky! Although she did say I was her star pupil today with my new bottle feeding trick. 

I had my first ever bath today.  It was a bit strange at first getting my hair and then my body wet but Mum was very gentle with me and it was quite nice in the end.  I was then ready for my Granny and Grandad Eccles in my Sunday best and I was well behaved for a cuddle with both of them.

Cuddles with Granny

And with Grandad

More cuddles followed with M+D and I had a little nap in Dad's arms.  He may have had a small nap too but don't tell anyone!  He made up for it by bottle feeding me this evening and I even managed some big burps with a little help from Dad and my nurse.  New trick!

I'm having a breathing test overnight called a 'download'.  Basically, the machine that goes 'beep' records my saturations continuously and looks to see what my oxygen requirement is and if I'm likely to need oxygen at home or not. 

Tomorrow is the Consultant ward round so I expect some more developments in the escape plan. Mum is going to come to have a chat with the doctors to get to know the team in my new hospital too.  Hopefully they will come up with something I approve of.  Readers of the blog already know I don't like being rushed into anything.

So, altogether a brighter, more positive day than yesterday.  Here's to consolidating my new tricks tomorrow.

Love to all,
Arthur x

Big ups, big downs

I've had a very unsettling day so forgive me if I sound a little tetchy.

I've had a change of address. Just when we'd all given up on my moving to St Thomas' - I got moved. So I have a fabulous new room with one of London's finest views across the Thames to the Houses of Parliament. And I'm now a ten minute walk from home. This is all good.

"One day, son, all this will be yours"
But I seem to have been somewhat unsettled by the journey and I think I may have been portrayed in my best light to my new nurses. They've put me in the "about to go home" room, in the lowest level of their SCBU. This is because I'm over 37 weeks old, more than 2.7kgs in weight, don't need oxygen and am starting breast/bottle feeding.

Mostly right.

I have tried to feed from Mum a total of 3 times. I have succeeded once. I have tried bottle feeding about 4 times - the first put me back in HDU and the subsequent attempts have been mixed at best.

I tried again today. And I desatted to 30%, and my heart rate dropped to 80 bpm and I turned blue. And the nice nurses at St Thomas' said "Oh". And popped me back in my cot and stuck me on oxygen. And I have had trouble keeping my oxygen saturations up all day. So they kept me on Oxygen, and turned it up, and up and up. And I coped well.

Having a little try at the bottle
And Chelsea had me on Nutriprem 1 which is super-fattening and St Thomas' immediately changed it for Nutriprem 2 which should help stimulate my appetite better. But I can change.

And Chelsea said I had to lie prone (on my tummy) or left lateral (on my side) to prevent my reflux. And St Thomas' say I have to lie on my back to prevent cot death. And I'm adaptable.

And no-one has done anything wrong. As Mummy points out, if you gather 3 radiologists you'll get 4 different reports on the same image. Neonatology is no different. But it's very confusing when you're small.

I filled four nappies in under one hour out of sheer frustration.

After several changes of outfit!
But many thanks to the Outreach Nurse. She scooped up M&D and helped them find their feet. And then she helped me feed me. She started the morning expecting to get me home within a week, and finished it wondering how many special tests I'd need.

"Not more tests"
And then Mum and Dad got rung at a quarter to midnight: "Have you got any expressed breast milk, could you bring it in?" Now I appreciate that Mum is a fully formed milking cow. And as you know, I've had a go myself. But even I know that Mum isn't able to feed me all I need by herself. And that she finds this very frustrating and guilt inducing. So midnight phonecalls to ask for more milk don't necessarily help.

Listen - it will all be fine I'm sure. But I was alarmed to hear I may be going home on oxygen and that it may be my PDA not my reflux which is making me drop my saturations. I'm not sure I'm bothered what the answer is, but when you're very small, clarity is important.

So more tests tomorrow. And then we'll find out where I am after the big consultant ward round on Monday.

In the meantime - I'll do my best to stay out of trouble!

Spring Wisteria on Mum and Dad's house - to cheer us all up.
Hugs to all,
Arthur
x

Friday, 8 April 2011

Fabulous Friday!

Another Friday has passed on the unit.  Another beautiful sunny day in London.

Too young to talk but sleep suits speak volumes!


 I gained 14g so weigh nearly 2.7kg again.  I did a MASSIVE poo  (no blood) which went through my nappy and my vest and my sleep suit.  I'm turning into a proper baby.  Hee hee. 

Quick, post poo outfit change!


Still off oxygen, even when feeding.  My milk regime is increasing back to my previous 40ml every 2 hours and although I have some desats, they are less than before so it looks like my reflux is getting under control. less pain for me - more happiness for M & D.

No breast or bottle feeding today as I was very sleepy and Mum thought it best if I was left to rest and grow so I stayed in my cot all day but she held my hand and helped feed me. I like knowing Mum is there. Keeps me calm.

Thank you for your kind messages from all over the globe.  They were lovely to read and made M+D very glad that my blog has touched so many people. They got all emotional reading the comments - so I suspect I'll get extra hugs tomorrow! 

Here's to a lovely weekend in London.

Love to all,

Arthur xxx