Thursday, 31 March 2011

Niggles

I'm fine - well, I look fine and Mum and Dad say I sound fine if you get very close and hear me snuffling as I breath. But I lost 40 grams in weight overnight and I've had a little blood in my poo.

So Mum's worried. The consultant said she wasn't worried but they're testing everything anyway (more blood tests for me). Whilst we're on blood tests - can I take a mo to thank Lana. She's my phlebotomist (which is posh for blood test taker) and she's Canadian and so nice that I've managed to sleep through her taking my blood before now. I also know I'm very hard to get any samples from, because I've had so many tests before. Sorry Lana.

They re-did my head scan today. Some cysts in one patch where they shouldn't be and the ventricle on the right is really quite a lot bigger than the left. I'm still at risk of hydrocephalus (big swelling - v. bad) and it still looks like I may have some disability.

I did a bit better on the breathing front today managing several hours off my oxygen without any disasters. And I had a nice cuddle with Mum. I think she needed it.

Contented little man!


Love
Arthur x

Just a quick note...

...to say that I had an ok day today.

Mum came to see me after going to a coffee morning with other mums from near home.  She said the mums were very friendly and welcoming and that the babies were all very big so I have some catching up to do but they were all 4 months old.  I am still only 36 weeks old. 

I had cuddles with Mum which were lovely and I managed my feeds without too much oxygen.  I did have a desat to 15% and slow my heart rate down to 40 and Mum had to ask for help from a doctor and then a nurse to increase the amount of oxygen I got whilst she jiggled me back to normal numbers and a better shade of pink. 

New day, new outfit.  Thank you Auntie Jean


I am now on a positive cocktail of medications.  I've got my reflux meds (all 3 of them), the extra sodium I get in my milk and now I'm getting 2 diuretics to help clear water off my lungs and help my breathing.  This has got M+D a bit twitched as I seem to be requiring more not less help with my lungs and my reflux.  I am trying to get bigger and stronger so I hopefully won't need too much help for too much longer.  My weight today was a devilish 2.666kg so still on the increase.

All in all a stable day.  Let's see how Thursday treats us.

xxxx

Tuesday, 29 March 2011

Hugging Mum

Hello all,


In a philosophical mood today!
Mummy had some sort of big test today. When she got to see me this evening she seemed pretty worked up. So I gave her the very biggest hug I could. This seemed to help.

Giving Mum a huge hug
 In other news...
I now weight 2.63kgs. I am feeding OK, though desatted and had a brief but profund bradycardia after my evening food. So reflux remains a problem.
My breathing is stable but I'm certainly not able to give up the oxygen just yet. Mum and Dad are just hoping my lungs grow strong enough to let me come home soon.


Practising hugging
Since I'm getting the hang of them: hugs to all in the meantime,
Arthur x

Monday, 28 March 2011

Not a fan of reflux

"There may be trouble ahead..."
Mum and Dad both came in for the whole day today which was lovely. They seemed to spend much of the time with Mum reading a big book of black and white photos. Or with Dad holding these pictures up to Mum who then came out with the longest and strangest words. My focusing isn't very good so I couldn't see what the pictures were. Dad said their all slices of walnut.

Dad decided to test me - I have pointed out I am a person, not a guinea pig - but that didn't stop him. If his camera is set to take continuous shots it makes an awful lot of clicks which I find very startling. But Dad likes it because it shows I can hear. Then he tested my sight. Now I can't focus and only half my retinas have vascularized (anyone would think I had medical parents!) but I can still see. If the light's too bright I have to screw my eyes up very tight. So Dad shone a pen touch into each eye. Humph.

Some things are very scary
And some things are fab

I weigh 2.51kgs which is 5 1/2 lbs in old money. My antibiotics have stopped. my CRP (a blood marker of infection or inflammation) has dropped right down. I'm still desatting for some of my feeds but managing most of them without any problems. M&D are also trying feeding me while I suck on a dummy - this seems to be working well. Perhaps I'll get to try a bottle again soon.


video

Me and a dummy. See what you think, but I reckon Dad is more excited than I am.

They sang to me again. New tune this time:
"There may be trouble ahead
But while there's music and laughter and love and romance
Let's face the music and dance"

I can't do dancing yet, but I can jiggle about a bit and that seemed to keep everyone happy!
Love to all,
Arthur x

My day of rest

Another lovely day on the unit. I'm off the CPAP at the moment and coping very well. Hopefully I can stay off, if my blood gases stay good. I also spent a long time awake playing with both Mum and Dad.
Happy days!

I'm still practicing my facial expressions but I'm trying hard to learn new ones. Still no proper smiling yet. Apparently I'm not meant to get the hang of it until I'm four months old (corrected) so another 20 weeks to go. But I know M&D are impatient to see me smile back, so I'm trying as hard as I can.
Super-cute
No weight gain today - just a little pause I'm sure. I still seem to be growing though and I'm in clothes for 7lb baby clothes now!  Super huge poo (since you always seem to want to know. It's perverse if you ask me.)
Thank you to Geraint and Veronica for the outfit
Just because we had a day together does not give M&D a right to torment me. Have a look at this evidence and see what you think:
video

Not enough evidence? Well look what happened when I was put on my front. Now I accept that normally I prefer to be on my front, but this evening I wanted to be on my back. A simple request you'd think, but would they listen...

video

But, all in all, a really good day!
Love to all,
Arthur x

Sunday, 27 March 2011

One step forward

Well hello again. A better day today, thanks for asking. I'm back in an open cot which is brilliant. I'm still on CPAP most of the time but they let me off for a few hours including cuddles with both Mum and Dad.

'It's all a little bit confusing'
All the headline news is apparently still good. My weight is going up but at a sensible rate. I am producing prodigeous amounts of pee and poo. And I'm loving the cuddles.

Me and my yummy Mummy

Very contented little man
Mum told me that things had all got a bit tense this morning. First Dad's phone had fallen in the bath and then his computer had frozen and Mum had to step in to stop it being chucked across the room. I hope they're OK as I'm not yet better but I'm certainly over the worst of it. I'm sure this will allow M&D to relax a little bit. All in all it's been a rather good and steady day.

Bye now
And thank you for reading my ramblings. I've had 39,500 hits from 33 countries which I find rather humbling.

Now go away, it's my sleep time!
Love to all,
Arthur x

Saturday, 26 March 2011

Life on HDU again.

Sod it. I seem to have found myself back in a plastic box, which is mightily annoying. Worse the box has clearly got far smaller than before. I can now touch both sides at the same time - I could never do that before.

Either the box is smaller, or I'm bigger!
I've been feeling decidedly off colour for the last couple of days and I'm sorry that this has caused so much worry for my friends and folks. I had got myself rather tired and rather uncomfortable.

I can tell you now - reflux is not funny when you're my size. But they've put me back on the CPAP. Now I know this helps but I really don't enjoy it and it made me super tetchy all day.

Not a happy bunny
You'll notice that I'm still rather swollen - it's rather uncomfortable but should settle. And I'm a much better colour - I've had another top up, 40mls of blood makes all the difference.

I even managed to get a couple of hours cuddle with Mum which was so relaxing that we both fell asleep! I think Mum and Dad may be quite tired.

Just chilling.
Anyway I just need more rest to let me calm down, get better and grow. I'll do my best.
Hugs to all,
Arthur x

Thursday, 24 March 2011

Evening update

We had a very helpful meeting with Arthur's consultant this afternoon.

He has very severe reflux which, whilst it shares the same name, mechanism and treatment as adult reflux: excess acid, irritated oesophagus and antacids respectively; is a very different beast in neonates.

Reflux can cause him to stop breathing and to seriously drop his oxygen saturations. It can cause him to stop tolerating his feeds and therefore restrict his weight gain. He may need reintubating to deal with this. So... after she had got our full attention, she went on to explain what their doing - he's starting Domperidone to speed up his gut, and gaviscon to help reduce the acid. The CPAP should also help and they've reduced his feeds and their frequency.

Back to the tubes and wires
She was also able to reassure us that, despite his very low saturations briefly and his prolonged period at poor sats; this is unlikely to cause additional longterm brain injury.

Yes... we noticed the 'additional' too. She was at pains to point out that Arthur was born very early and had had a very difficult course early on. The good news is that she believes his original head bleed might not have been as bad as we feared (partly because it was so much better now) but she again reminded us that the bleed is still likely to cause problems later and that these would not be apparent yet. "Perhaps just a mild hemiparesis". Sodding hell.

And he's still puffy, and he's not peeing much, and he slept all day but was also really fractious.

A little puffy.
What a day! We're both shattered and rather emotional. Lovely friends are cooking for us tonight and hopefully tomorrow will be better.

Sunset on the unit

Sunset over Chelsea. Hoping for a better day tomorrow.
Best wishes
Si & Amy and pudgy Arthur  x

HDU update

Arthur's now settled back on the HDU. He's breathing much better on the CPAP and his blood gases are better.
His Full Blood Count is not brilliant. His haemoglobin has dropped again to 8.3. His white cells (the blood's defense cells) have dropped to 3 which is very low (for the medics, he has neutropenia). This makes infection seem likely.

He's being started on anti-reflux meds - with the thoughts from the doctors, that his problem is the mix of - his immunisations, which he got yesterday, his PDA (persistant arterial duct near his heart from his prematurity) and that he's refluxing his feeds.
That said he is being treated with IV antibiotics in case it is infection.

What else? Oh yes, his weight has shot up - he looks oedematous (puffy) so we're assuming he's retaining water as his kidney's are having a bad day.

Because of the length of time he had very low saturations - he's going to get another head scan. And if he keeps dropping his sats then he'll need a transfusion (but they need to be careful not to make him even more fluid overloaded).

Oh the joys of medicine.

Anyway, we'll keep you posted, as and when we can.
S&A&A

Two steps back...

Oh bloody hell. I had a rather bad desaturation today. Eleven percent.
Well it must have been bad because Dad and the nurse started puffing oxygen into me whilst Mum rushed off to find a doctor - well a doctor who wasn't a relative anyway. And I got better. I went pink again and got cross, which is apparently better than listless.
Anyway a very laid back young doctor came to see me and said that I needed a drip, but then couldn't get one in. So he did blood tests which he said were fine. This surprised M&D as my CO2 was the highest it's ever been at 10.5 (this means I wasn't breathing hard or deeply enough). And my CRP, an infection marker, was the highest it's ever been (only 6, but that's three times higher than when they last started antibiotics). And my haemoglobin is 8.8g/dl. I got all ill and listless when it dropped to 8.4 last time.
He said it was reflux and not to worry.

So Dad showed me pictures:

Me, paying attention

Dad showing me, me!
01:20 update
From Dad - Arthur did not settle all afternoon. Finally at 10.30pm we were able to explain and demonstrate that all was not well. Sadly Arthur spent a short period with his saturations in single digits to merit everyone's full attention.

He is assumed to have an infection. He is now on IV antibiotics via a drip (placed first time by the Neonatal Practitioner (v. senior nurse))
He had a chest x-ray which showed some shadowing
He is back in an incubator as he can't regulate his temperature any more.
He is back on CPAP.
He still has periods where he stops breathing for tens of seconds and requires rubbing to start again. If this carries on despite the CPAP he may need reintubating.

We remain very happy with his care and how seriously this episode has been taken. We knew we were kind of 'overdue' a setback. Nevertheless, it's not fun.

With best wishes to all,
Simon, Amy and Arthur x

Wednesday, 23 March 2011

2 months old today

It was a busy day for me today.  It was my 60th day at Chelsea and Westminster, my 2 month birthday and I moved to the Special Care Baby Unit (SCBU).  This is the room you go to before going home so you could say I've been promoted.

My move was a bit of a surprise to Mum who turned up to find another baby in my space on HDU.  The nurse she spoke to didn't know where I'd been moved to but she guessed I was in SCBU and found me.  Clever mum. It means I'm back with my previous neighbour and the first baby who was opposite me on day one although she and her parents are getting ready for her to go home so I'll just have to get stronger as quickly possible so I can come home too.

"Will you take me home?"

I've gained more weight and now weigh 2.34kg meaning I've broken the 5lb barrier. I tried feeding from the bottle again today and didn't do well.  I swallowed too much air again and found breathing a bit tricky.  This led to my heart rate going down too. I didn't feel right at all and ended up the same blue as my babygrow! The nurses and M+D needing to jiggle me and give me extra oxygen through a special mask which scared M+D a bit.  Dad can be very firm when he's suddenly in 'doctor' mode. But I picked up fairly quickly after that and was fine when my milk and formula went through my feeding tube.

Being cared for by Mum
They're running a special pH study on my gut to see if I'm refluxing my stomach acid, and if this is making me drop my saturations.

I'm 35 weeks old tomorrow. So many birthdays in one week - lucky me!
Love to all,
Arthur x

Monday, 21 March 2011

A new record!


Generally I had a good day.  Mum spent all day with me and I had lots of cuddles.  I tried bottle feeding again today and managed 3ml of milk that way (first record) but also managed to swallow a lot of air which I struggled to bring up no matter how much Mum patted my back.  This led to the ‘mother of all desats’ with an undisputed, personal best, all time low of just 13%. 

Mum looked very stressed at this point although I didn’t go as grey and floppy as I’ve done in the past and the nurse was amazingly calm and stopped my feed, increased the oxygen going through my nasal prongs and sucked a good 20ml bubble of air out of my stomach. After that my sats improved very quickly.  Phew.

Mum was in early for revision this morning and I could tell she was tired when she fell asleep by my cot.  I took this opportunity to have a nap too so I could be awake with her for cuddles later to make up for my desat.  See, I can be good sometimes!

I’ve put on more weight and I'm nearing 3kg now.  My new fuller figure seems to impress the ladies.  There are 2 new girls on the ward so there’s only me and one other boy and at least 6 girls. And I know I’m irresistible.

They say I'll grow into it.

M+D have been shopping for stuff for me, and my personal transport arrived today.  Imagine my disappointment to hear it’s just a pushchair. They say it’s very comfortable and very stylish.

It’s looking more and more likely that I will go home from Chelsea rather than go to St. Thomas’ first.  This is because of bed pressures in London neonatal units but I don’t mind.  The team here are lovely and very good at looking after me and my friends.

Tomorrow my aim is to learn to suck without swallowing so much air at the same time. And I must learn to burp. Dad’s promised to show me.

Love
Arthur xx

Sunday, 20 March 2011

Super Sunday

Fabuloso. That's the best summary of today. 60g weight gain takes me to 2.22kgs. Most impressive you'll have to agree. I'm back on my nasal prongs following a few desats overnight but I spent the entire day on the lowest level of Oxygen they can deliver and had no dips which didn't correct themselves - even after feeding.

And they're so happy with me they've taken my electrical leads off - so you can see my chest:

Plump and gorgeous
And I had cuddles with both Mum and Dad. And I woke up so Dad and I could have a chat.

Cuddles!!

Who are you again?

"You talkin' to me...?"
And then I fell asleep under a blanket from the Dowlen family - many thanks.
Enough excitement - alseep for sunset!
Lots of love to all, and thank you for all the messages of support,
Arthur x
(over 35,000 hits!!)

Saturday, 19 March 2011

New tricks for 8 weeks old

So I am 8 weeks old today! Yes eight whole weeks have passed since I arrived unexpectedly and was brought here to Chelsea and Westminster. And they have been the most incredible rollercoaster.

Today everyone seemed to decide that I was basically just a small baby and therefore I should start taking bottle feeds, come off oxygen and stop having my heart rate monitored.

Well I tried:
Small sprog learning a new trick
Don't forget to wind me!

But I also realised that this would mean people paying me less attention and me having to do more work. May I remind you that I wasn't due to be born for another 6 weeks. So to be honest I really wasn't sure that I wanted to be treated as 'just another baby'. So I had a proper series of bradycardias and desaturations. After about 30 minutes of this they got the message. And my lovely nurse sucked the big bubble of wind from my tummy (from the tube which I dislike so much, but it does have its uses). Once the wind was gone I could breathe again.
Mum getting me going again

So - feeding from the bottle: working on it. Burping up my own wind: not yet.
Bradys - not over yet.
Me saying sorry to Mum

I think Mum found the whole episode rather stressful - sorry about that, but I've said it once and I'll say it again - don't rush me. I'm happily growing (another 90gms overnight) so I now weigh 2.16Kgs which would be a respectable birthweight for my age if I'd arrived today.

In other news - I am learning to be a true Eccles. This involves sneezing in threes and passing weapons-grade wind.
Letting Mum work for her exams
And then I agreed to cooperate for just a little bit:
Look NO tubes!!!
"I think I want one million pounds" (with thanks to Mike Myers)
Sadly I had to go straight back on the prongs after this, but good news nevertheless,
Hugs to everybody,
Arthur xx


Friday, 18 March 2011

TGIF!

News headlines...

Off CPAP and going strong.

Lost 2g in weight. 

On 3 hourly feeds (43ml a time).

Poo negative since terrorising Dad yesterday.

Still cute as a very cute thing.

More news with our roving reporters M+D tomorrow...



And it's goodbye from me

Mini-news

Dear All,

I'm just splendid - thanks for asking. I'm now off CPAP. I may need it again if I get tried but I didn't need it at all today. And I had only a couple of desats, and I had a super set of blood gases. And I grew. I now weigh over 2 kilos - yippee!

Look at my new baby suit from Granny W


And I had another eye test today - and all looked good. Touch of the "Clockwork Orange" about how it's done - but good result.

And I had a repeat head ultrasound scan of my head today. The consultant Dr Thomas took the time to explain to Mum and Dad what he'd seen. And he was so surprised by it that he'd had the pictures reviewed by an expert. My head looks fine! The original bleed is resolving without visible damage. He was careful to explain that this does not predict my functional result and that however cute my arm and leg wriggling is, it is still too early to say whether that represents the long term picture - that will take several months to be clear - but it's still good news.

video


Nurses who looked after me earlier in my stay, keep coming in to see me because I look so fat and happy.

Glad to meet with such approval!
Love to all,
Arthur x

Wednesday, 16 March 2011

"I love you baby..."

"...and if it's quite alright, I need you baby"

To be fair: it sounds a pleasant enough song. But Mum had clearly got it into her head and sang it to me. And sang it to me. And then she and Dad sang it as a duet. Honestly. You'd think I had nothing better to do.

"You're just too good to be true..."

So today I've been mainly alseep. I thought about waking up when Dad gave me a cuddle but then I literally couldn't be bothered. I have also restarted my desat habit - well it would have been unreasonable to expect me to give it up in just one day. I sometimes just forget to breathe and other times I strain so hard I go quite red in the face. Everyone expects me to poo after this, for some reason. They're obsessed with my poo.
That said, I'm still on 10 hours on nasal cannulae and 2 hours on CPAP. My blood gases were pretty good today.

"Can't take my eyes off you."

Cuddles!
"You'd be like heaven to touch..."

I know some of you love numbers - so other numbers include 34 weeks old today(!) - only 6 weeks to go until I'm cooked! I was born 53 days ago. I now weigh 1.975kgs which is 4lbs 5oz. My blog has been read in 31 countries and in every continent (except Antarctica), a total of 34,000 times.

"I wanna hold you so much."

I shall try hard to reward your interest in me by learning new skills. At the moment it's mainly sleeping, digesting, waving my arms about and filling nappies. I'm still practising the smile/wind thing.

"At long last love has arrived..."

2 mins of just breathing air!!
"And I thank God I'm alive."

Love to all,
Arthur x

Tuesday, 15 March 2011

Micro blog...

I'm still good. My blood gas results are still excellent. I'm still wiggling all four limbs. I gained 36g overnight. I managed 10 hours off CPAP. I continue to look plump and super-cute.

What more could my parents ask?!

That's the good news - and for me it is good. The bad news is that one of my little friends lost their own battle today. Mum and Dad cried too - they still worry about me, however well I do, and today brought it all home.

Look into my eyes...


Love, Arthur xx

Monday, 14 March 2011

Good evening everybody

Greetings one and all.

Another day and more stability so a relaxed M+D and a podgy little man in trousers and a hat.

I've been practicing my breathing off CPAP for a whole 8 hours today.  This is good news but the doctors, nurses and M+D are watching closely to make sure I don't get too tired.  I gained 6g overnight which regular followers will appreciate is not my usual double figure quota which might be an early indicator of working a bit hard but we'll see.

Mum is revising for her exam and so wasn't able to spend as much time on the ward as she'd like but I still managed an hour cuddle and I managed to stay awake for most of it too. I did my very best to look as cute as possible to make sure she comes back tomorrow.  She sang nursery rhymes and tickled my tummy and she promised to come tomorrow and bring dad too.  Damn I'm good at this cute thing!
I know - it's probably just wind...

Altogether a good day for me.  Some of my friends on the unit are still having a bit of  horrid time but all the parents continue to try to support each other.
video

Bye for now
xxx

A yummy Sunday.

Good evening to all,
A had a lovely day with Mum and Dad. I'm pleased to say I am continuing to make steady progress.
Weight - 1.9kgs. Pee plentiful. Poo sufficient.

I had a full 6 hours off CPAP with virtually no desats and no bradys. So that's good.

Hello
A happy cuddle with Mum
I've found my own thumb! (only occasionally)


I know: I'm irresistable!
Dressed in my Sunday best!
And I managed to stay awake for over an hour - which meant M&D and I could have ever such a long look at each other.
Just looking!
In short - I am getting better, and my parents find this wonderful. Currently four sets of parents are not finding their time on the unit at all happy. I know my parents thoughts are with them.

Love Arthur x