Eb says…under pressure…

They finally got sick of my game and they’ve put a new more powerful pump on me. And now its fine. And my sats are fine too so I’m off the cpap and back on to the low flow – or lo-flo if you want to be a bit more street. Now apparently they do it a little differently here where they will now hopefully, fingers crossed, touch wood etc etc keep me on this rather than bouncing me back and forth onto the cpap. Not sure how this will turn out as I am still quite little. However the biggest concern I have right at this moment is they’ve given me a pink zaky hand. Pink. I ask you. That is like so gay.

Eb says…Bong. Sorry.

Hmm so my stats are ok but the ‘long line’ which actually is probably quite short and very very very thin that goes from into the big vein in my ankle and then goes up my leg and ends up erm…somewhere has started to be a right pain in the neck. It carries TCIP which is full of nutrients and stuff and also LIPID which is some sort of fat to make me erm fat I guess. Problem is the fat gets stuck and the pressure of the pump can’t push it though the line which then means it bongs. But its not a nice bong. It’s a sharp, loud, ear piercing bong – and at the moment its pretty much going off every minute. So the nurse comes over, turns it off, fiddles with my leg a bit and then goes back to sit down. Then as I see her sit down I flick my ankle and the line occludes again and the bong goes off. And so it goes on…and on and on.

Eb says….oh yes this is nice.

Apparently I was an angel in the ambulance until we hit a bump, I flew in the air and then surprisingly went a bit bonkers. But I’m here now and seem a bit calmer. I’m knackered though so they’ve decided to put me on cpap for 48 hours to help me chill out a bit. The nurses are LOVERLY here and I’m given ‘quiet’ times where they’re not allowed to touch me – unless I go bong and then they do obviously – but compared to the last place this is like a spa retreat. I am wondering when my pilates classes start.

Eb says…take me home country road.

No apparently I am off to Guildford. Back to the Royal Surrey where all this drama started. Confusion still reigns as the doc here (the shoe staring one) thought I was off to St.Peters as well but the lovely doc and nurse and nice paramedic transfer team are definitely of the opinion that I’m off to Guildford – and to be fair they all seem to know what they’re doing and I feel more reassured by that than I have done over the last few days. So after a quite a lot of picking me up and then throwing me down because I still had some sort of tube or wire attached to me –  I HAVE A LITTLE SOFT HEAD FOR ****S SAKE – they get me into my wheels which are basically a big version of the incubator with more bottles and whizzy things attached. And then we’re off! I gotta tell you its quite bumpy and they don’t seem to care for the mini speed bumps down the corridors but nice nurse personage has a right go at two fat blokes who stare at me in the corridor. ‘Ere frank look at him hes ruddy tiny’. “hey you, don’t look at the baby’ ‘Frank look at him.’ “Hey mister I said don’t look at the baby’ cue evil stare and finger pointyness. yeh go for it girl as they amble off probably about to go and visit Britney to see which ones the father….

Eb says...grrrr

So after all that palaver I’m thinking I’m a bit fed up and a bit miserable. But then the news I’ve been waiting to hear for oh a few days is that they’re finally going to transfer me – hurrah. No more Britney and her awful constant retinue of gawpers and mutterers all smelling like they’ve just come from the ‘I love to smell like an ashtray appreciation society annual ball’. Anyway, there seems to be some confusion of where exactly I will go but they finally decide its going to be St.Peters in woking which is the same level as here but about an hour nearer home and an hour nearer me climbing a big tree. So that’s excellent. They’re going to do it in the morning so tonight I think I will be quite a handful for my last night with my lovely nurses at St.Marys….. bong bong.

Eb says...

I’m back baby!

Normal service resumes

The rollercoaster. The ups the downs. The mountains to climb. The plateaus. They are upon us. So to bring you up to date, on Friday one of the consultants after having a row with some other doctors over Eb’s bed about what had been done and what hadn’t then asked if she could speak to both of us. Its never good news when you hear the phrase ‘is you husband around as it would be good to speak to you both – privately’ (and yes for the more detailed focused we’re not married no – but frankly have given up explaining) So at this point we’re briefly sat down with her and she says with big doe eyes and an annoyingly patronizing tone that she actually is quite busy right now so if we could wait an hour or so as shes got a meeting and then lunch presumably as she eventually turned up about two hours later – yes that’s brilliant tell us you’ve probably got bad news and then say oh but I’ll tell you later, thanks that’s great. So together with her annoying slightly sad slightly smiling big eyed face she led us into the private room with not only another doctor but also the head nurse. Now the room is full of doe eyed people staring at us. Its not feeling good – but as we have maintained all along we’ve asked to be told the truth and not to hide anything. Yes we do not want your personal assumptions or general wild theories that x or y might happen but if you’ve got something to tell us, tell it straight. And so the bendy twisty road of nonsense and awkwardness began where doe eyed consultant – not a consultant in communication – began this long winded explanation into what they had seen on his brain scan that morning but not before she had spoken to us like 3 year olds asking if we knew much about premature babies. Well not much before two weeks ago love as I wasn’t thinking then we really needed to know. It was so tortuous that we sat there thinking oh my god she can’t say what she needs to say as it’s so bad. And as the other doctor stared at his shoes and the nurse stared at the ceiling the doe eyed one started drawing pictures of a brain on a scrap of paper infront of us whilst saying oh his breathings good….So, and somewhat belatedly I had to stop her and just say, can you please stop going on and on and say what you’ve got to say. So she stopped and coughed a bit more and drew a bit more a brain. And then coughed and eventually what we were told was that the brain bleed he had had on being born was now worse and fluid had started to build up in the ventricles which was not good as this fluid is meant to wash down the spine but it couldn’t as it was being blocked by the scab left behind from the initial bleed. This would then lead to the brain swelling and therefore the head swelling which would then lead to ‘complications’. Other things about shunts and removing fluid passed over us as the idea that the little man was potentially suffering from brain damage of some kind sank in whilst the doctor still stared at  his shoes, the nurse at the ceiling and the doe eyed one was still trying to draw a brain on her pad. And then they all left.

Skip forward 4 hours. And frankly the worst 4 hours of our lives. When the head consultant comes over to inquire what we’ve been told. And again. Like last time. He says no that is wrong. You should have not been told that. And again we are in pieces. He then goes on to explain that it is not a build up as there is no evidence of that. There is no blockage. There is slight bruising created by the first bleed which is leading to a slight dilation of the ventricles. His head size has not grown other than normal growth. The problems we were told about only 4 hours before are far more likely to occur in the first five days which they didn’t. He is now ‘quite old’ at 16 days so we were not to ‘overly worry’. And then that sinks in. And you think, but that’s almost the opposite of what we were told earlier. And then you think but who’s right? And then you think, what the hell is going on. How can they be so opposite in their views and why have we been through hell for the past 4 hours now to be told oh don’t worry. And so you panic. And you worry. And you panic. And I remember writing exactly the same thing days ago. And that is the rollercoaster. And this ride is not suitable for people with a heart condition.

Eb says...

i've been catching whiffs of comments and conversation today from outside the greenhouse. on the downside they've said the tomato plants have got to go, which is a bit of a shame but apparently britney's mother has complained as she didn't know what they were as she's never seen a tomato before 'or a bright red blob innit' as she put it....so in the name of neighbourly calm they had to go. Wait till i start my chicken twiddlestick factory up and lets see if we get the same response....


anyway the good news today is i have completed a whopping 9 hours off my cpap - apparently i was a bit 'all over the place' over night but i do that just to keep them on their toes. i had a lovely new nurse looking after me who's only been doing the job 6 months. i guess you can see that as a bit of a worry as she might not really have a clue whats going on - or the latest teaching is still fresh in her mind so she'll do things by the book. hmm perhaps i'll concentrate on breathing instead of these issues. 


Also in the muffled outside world somebody mentioned i've been putting weight on which is excellent. how much nobody seems to know, so it might all be a lie but am hoping its a least a stone..... who ate all the pies? who ate all the pies? 

Please look after this bear. ok, i will x

Eb says...

my screamy new neighbour is proving a right pain in the cannula. not only does she scream a lot her chavy mother and grandmother who smell like they've just smoked 20 lambert & butler together (with the mother attired in a delightful blue toweling dressing gown with support stockings on to keep her fat ankles from bursting i presume)  just before they come in to see britney or whatever her name is take turns in staring at me and going 'oooo he's a small one isnt he, your britneys a lot bigger ain't she'. Yes love and your darling britney will no doubt continue to be a 'large one' based on her presumably future diet of chips and stolen iceland ready meals....

Eb says...

so yesterday was going so well - i had a pretty good day - although they did turn my light on again which was fairly annoying as my skins gone all a bit dry. They can baste me in sunflower oil - yeh butter me up baby - but not while the light is on as i will cook.... So everything was fine then dad turned up and i freaked out, my stats dropped through the floor and they had to put my back on the cpap again and try and calm me down - but no i kept kicking and looking pretty miserable so they called the doctor who then prodded me a bit and then concluded i was just a bit miserable - you'd be miserable under a UV light constantly mate. On the plus side they're still feeding me although i am barfing up a bit more and my green goop has returned, they reckon if they keep pumping me full of food then it'll be ok - although i may just continue to barf a bit up to keep em all on their toes....

Eb says...

yeh its still ruddy Eb. the nurses have given mum and dad 24 hours to come up with a name - apparently i am the longest serving inhabitant of ICU without a name. which makes me very special. but not in a good way. anyhoo...... today mum spent a whole day with me when dad went back to work and i got read a lovely story from my new paddington bear book. see what they've done there. paddington bear. paddington hospital....genius. A story about a bear from peru lost in london with a tag around his neck saying please look after this bear. well i tell you aunt lucy you shouldn't have sent him to paddington as its a right.*******. although a lovely hospital with lovely people but i have to say that as they're taking such good care of me. 'burp'

anyway todays news is i am not barfing up my milk. which everyone especially the nurses are very pleased about although there seems to be some confusion about how much exactly i'm meant to be having - it is now varying from 1mg to 24mg an hour. Momma i will explode i tell ya.

And in breaking news on the weather front - you think you're hot. well that ain't nothin billie jean (not sure where my southern accent has come from tonight....but anyway) there i am sitting in my little green house with my tomato plants - which are doing very nicely thankyou - when all of a sudden the breezy tropical heat goes cos they've turned my humidifier off - apparently i am moist enough - and i'm left with a balmy calm.....yes a balmy calm - sounds a bit gay but work with me....and i'm cool..... haha i hear you say - you was always cool boy - and yes tip my hat to that one - but this is brilliant. but then a bong went off and apparently i was cold. so they put a blanket on me. and i was lovely and warm again. ahhhhh. am so precious.....

Zzzzzz

Eb says...

are you talking to me? are you talking to me? well i don't see anyone else here? big news of the day is i have now decided to open my eyes! yes after 12 days of snoozing and pretending i was constantly asleep whenever the big dark hood was lifted i have given in to curiosity and started peeking about. although i am only briefly glancing about and then shutting them again as to be honest its all a bit blurry and the view isn't great everyone seems to get very excited when i do it... so maybe i'll do it a bit more....or maybe not. i did notice however that i've got some new neighbours and they're very noisy. where i am now trying to keep my bongs and beeps down to a minimum this lot are binging and bonging like nobodys business. lets hope they quieten down so i can get more sleep. 

Got milk?

Eb says...

Food glorious food, hot sausage and mustard, while we're in the mood cold jelly and custard, pease pudding and saveloys what next is the question.......The next question is can i keep the milk down they gave me at 12? And the answer is........ mostly!!! hurrah! Also the news today is they've stopped my antibiotics hence the glorious half syringe of milk - oh yeh go on spoil me why don't ya. In other events and just to annoy the nurses i have started rolling onto my front and sticking my face in the sheet and then things bong and people rush around and then move me... this is maybe one of the reasons they're trying to move me back to surrey.

Eb says...

the sun is out the sky is blue its boiling in this room and i lie here in my tropical rainforest. with a blanket on. although at least its blue, so i'm not being emasculated so far by mum who hopes i'll be gay and never leave her side.....anyway onto more positive news, my light is off and the day i need sunnies on they've taken them away. typical. might borrow dads raybans he bought in kiev although they're mirrored and he does look a bit of an arse...

Eb says...

Bollocks. My lights back on and they've shoved the cPAP back in my nose. They're all muttering something about how i was doing so well but i've tired myself out but my saturation levels are dropping a bit so thats why they're helping me. And then after fitting me with my ridiculous gnome hat again they turned the light on again without putting my sunnies on. - that is like so not cool.. Still no food today however the main man, the daddy (not that one), the big cochonas has decided that Sunday is going to be the big day for my first feast of......a couple of drops of milk. Maybe thats just the starter and the steak and ale pie will follow. I also overheard someone mentioning i was doing so well that they might move me back to Surrey if i keep being all stable and manly sometime next week which would be excellent - another day closer to me terrorising those cats...

NEWSFLASH

Amanda has helped with a nappy change. After 2 years of not changing the cat litter tray once this is a momentous occasion. The fact that Eb has absolutely no solids in him or anything but glucose is not to defer from the triumph. He did need a little boost of oxygen to help him get through the process but with the skill and loveliness of the nurse it was all completed in ohhh about 45 minutes....... i held his head and read him extracts from Das Politik to keep his mind on other things. 

Eb says...

so yesterday i said i wouldn't hold my breath. well today i did..... and oh blimey did that set a load of bells and whistles off....my heartbeat which is normally about 167 ish went down to 65 and then i thought i've f****ed with them enough - had a cough and everything went back to normal...... david blaine eat your heart out....

Eb says...

ok so i know i'm small but scale can sometimes be a little confusing. the latest addition to my  incubator is a Zaky hand pillow thing which just to confirm is about 3 times the size of a normal hand. its full of beans and is designed to make me feel all comforted and what not. it seems to be working as i slept like a baby last night....ironic that - even the fire alarm didn't wake me up unlike some people haha. I'm still breathing on my own and they've finally turned off the blue light on me which is used to bring up my jaundice levels - apparently nothing to do with my liver or the wine dad drinks but is normal for prem babies skin to display a little yellowy colour so its turned on periodically to give me a blast of UV light until my levels look ok - as long as i don't start to look like george hamilton i'm fine with it. The humidity in here has been turned down a little too so its less like Kew gardens now. I heard mumblings this morning that the little bleed on my brain hadn't got any worse so the consultant was optimistic that it was gonna be ok so touch..erm... bean glove thing that that will be the outcome of my next scan tomorrow. I've also stopped producing the wierd green goop out of my tum so they're hoping that the antibiotics are working and they can finally start to give me some sausages and chips on tuesday.....or maybe a bit of milk.

good morning this is your wake up call

i realise you can't hear this. but its going off. and on. and off. and on. and well you get the picture. its 3am and i'm thinking the hospitals on fire. well i'm don't really think its on fire but i know that the fire alarm is going off. and my god its loud. so there we are running down the corridor to the ICU ready to wheel the little one out and thinking well this can't be good. can incubators be moved? what about all the stuff thats flashing and blinking and infusing around him? have they got wheels? anyway all these questions about the mobility of life saving machines are all put to bed - unlike me - when the lovely nurse comes out and shouts 'oh its loud out here isn't it, its very quiet in there - don't worry its a fault'. so we breathe and shout at each other as we stand under the bell. which continues to go off. and then finally it stops - but its bit like hiccups and you think it'll start again. which it does. and then it goes off again. thats off. silent. and it stays silent. for tonight. 

Eb says...BREAKING NEWS

Hurrah!! They're taking me off my oxygen so I can get this ruddy thing out my nose. And hopefully now that someone - naming no names - can see my blinkin face properly they might be able to think of a name for me... Yeh right won't hold my breath... Actually I won't hold my breath as that'll turn all the alarms on....and then they might put the nose gripper back.... Wonder if I'll get a new hat now?


- Posted using BlogPress from my iPhone

Ahhh

Eb says...

finally they've taken that canula and splint off my arm so i can wave it around and suck my thumb abit. i'm on a load of antibiotics for the next 10 days as this wierd goop keeps coming out of my tum although i heard today its easing off but they won't feed me until i've finished my antibiotics as apparently my stomach is underdeveloped at the moment so they need to make sure i've got no infections before giving me some food.... i say i'd quite like a cheeseburger...

ICU

you never really ever want to be in an ICU unit for whatever reason - whether you're actually in there yourself or visiting someone - and for the first few hours all you do is stare at the monitors and think 167, 48%, 34/56 - is that good or bad? and then a bong goes off and a yellow light flashes and you think well that must be bad, but then a nurse comes over presses a button and wanders off so you think oh well maybe thats ok. then a bong goes off in another monitor and you panic again. A red light flashes on another one whilst an alarm goes off and a nurse with a slightly quicker pace comes over and presses something. It goes off. And so does she. And you panic. And you worry. And frankly you have no idea whats going on. They tell you not to stare at the monitors but i think thats just so you don't panic. or worry. or panic. if they didn't need them they'd turn them off so the idea that you looking at them is a bad thing worries you even more. And then you think what are they protecting me from. And so you worry. And you panic. And so it goes on..... and then a bong goes off.

Eb says...

i'm taking that tube out right now....

bubble boy

Born still wrapped up in his little sleeping bag (amniotic sack to the more medically minded amongst us) it was not quite the expectation you have of the doctor holding your boy aloft and declaring 'you have a son' whilst you peer at his genitals to see if he's 'a big fella' - but more a case of  little man in a jelly gently tumbling across the bed and then being scooped up by calm doc and then rushed across the room to the ICU staff. However the sleeping bag thing is apparently good - and as we have been informed good for sailors as well who like to put it in a jar in case they're drowning. What use it would be when drowning i'm still not clear on as am sure it wouldn't inflate by pulling down firmly on the toggle and from where i was looking it definitely didn't have a light or a whistle on it. But forget the sailors and their odd ways it was good for Eb as it meant less time out in the wilds without a nice big jumper on him to keep him warm.


5 frantic minutes then followed by the med team to clear his airways and then he was whisked off to the ICU by lots of slightly frowny and concerned looking doctors - apart from dr calm who had now stopped soothingly saying PUSH and was now soothingly saying, 'its a boy, and he's doing ok...' we like dr calm and his lovely calmy ways.

undercooked

So everything was going so smoothly. but then things stopped going smoothly and smooth turned into excrutiating pain which turned into hospital which then turned into being discharged  three days later but then more pain - not that it ever left really - which tuned into being readmitted for two more days which then turned into being moved to a delivery suite - at 26 weeks - but surely madam you have been making a mistake - but no, no mistake which then turned into paramedics being called which turned into blue lights and sirens from surrey to london which then turned into calm. ah calm. yes i remember it now. the calm. the thinking that this had all been a bit of a cock up and lots of people had over-reacted and everything was going to be ok and we were going to go home and put the feet up and have a nice cup of tea while Eb gently simmered for another 14 weeks. But nooooooo. calm turned into pain. but this time far more pain than had ever imagined or crossed the mind when dealing with the pain last week - which now seemed like a being pinched on the arm compared to this pain, which then turned to the feeling that going to the bathroom would solve all the pain which turned into nurses shouting at the door to open it which turned into more pain and being dragged out of said bathroom which turned into a crash call from said nurse which turned the room into chaos with people running everywhere and looking a little shocked - never good to see - which then turned into calm doctor being all calm and doctory and saying soothing words like PUSH! which turned into more pain but then 17 minutes later all that pain and all that...well pain had disappeared.....which turned into Eb

Whats all this about then?

Blogs, twitter, facebook. All the modern equivalent of the town crier. Something happens - quick ring the bell and tell everyone about it? Something has happened but does that mean i have to ring the bell? Maybe there's just too many bells. Maybe we should put the bell away and be private about this. At this moment i'm actually unsure whether: a; anyone will read it and b; whether i should even be telling anyone about it in the first place. However maybe a little bell could actually help. And as of now i'm thinking this could be ok - whether i'll ever actually write any more posts who can possibly know - but the aim right now, this minute is to keep writing. Maybe it'll be cathartic - maybe it'll make more sense when written down and also, hopefully it will give a chance for everyone who's thinking of little man Eb to see how he's doing. So, ding-a-ling.