The 'A' Word... Addiction...

Mummy's made me sound like a druggy! I've been on morphine for practically the whole time that I've been out of her tummy, it was given to me to stop me getting too distressed and uncomfortable. However, when I took my tube out on Tuesday, as they didn't plan on putting me on CPAP, I was still on 25 micrograms of morphine, but that had to stop straight away. The normal procedure would have been to wean me off of it before going on CPAP, but I've done it the other way round... and guess what... it's not fun. I'm going through the classic withdrawal stages and am being a wriggly worm and I twitch and am generally uncomfortable. So they're giving me a tiny bit of morphine orally for the next few days just to take the edge off, thank goodness.

This is my new machine, it replaces the one that had the squiggly line at the top and the oval shape at the bottom (not the one with coloured lines and numbers), isn't it small - just like me! I started the day needing about 85% oxygen, this was because I was wriggling and twitching so much, but when the morphine kicked in and the Chorlyhydrate relaxed me, it's steadily reduced to 32%, which is what Mummy saw before she went home. I've also put on 20g's, so I weigh a great big 830g's! They're still not feeding me any of Mummy's milk though, my tummy's all grumbly...

It has been a good day other than this, I'm getting on with things quite nicely. I played a little joke on Mummy... when she changed my nappy; washed and dried my botty, she was just about to put cream on it and when she wasn't looking I did a wee wee... I'm so pleased with myself - I liked being free for a moment and took full advantage of the situation - and it got a reaction from Mummy, she wasn't cross or anything, she just oooo'd and arrrr'd and did the whole process again!

Daddy's gone away. It's the furthest he's been away from me for the whole 4 1/2 weeks I've been alive and I miss him. I can feel that he's far away in this land called France and he's taken his hands with him so he can't put them on me when I need to calm down and sleep. He's got to look at a race car and sign it off to say that it's OK for racing - whatever all of that means. He told me that one day he'll take me with him, when I'm big and strong... I'm getting there Daddy - I can help you with your work and will make you proud of me. I'll try to say 'Daddy' first, but I can't promise anything. I can't wait to see you again and hear you talk to me, I love you Daddy xxx

Keeping up the good work...

I've been breathing for myself for over 24 hours now - I'm amazed, even if I do say so myself. You see, they didn't make the decision to take me off of the ventilator - my tube got blocked and they thought they'd 'give it a try' and it worked - how fab is that?!

I know that I look odd, a great big tube over my nose and a little hat keeping it all in place, you can't see my face very well. Today my hat wasn't so far on my head, and I do look better than yesterday - I'm a trendy CPAP'er and there's no more girly pink bits on my hat!

I've said that I'm not on morphine any more, there is still a little in my system but I was very wriggly earlier today so they've given me some 'Chloryl' which is a relaxant - and it works. Daddy still put his hands on me though and that works well too, my TV tends to beep less and I don't wave my arms around as much.

The nurses have figured out my little game today, you see what I've been doing is wriggling around and squirming about and having a few beepy moments... all because I don't like being half naked to the whole world. They've worked out that I like a blanket over me, how cosy! They've reduced the temperature of my incubator and have given me a fluffy blanket - Mummy thinks I'm like Daddy as he has to have the covers over him to sleep.

The doctors did their rounds this avo, as they usually do between 5pm - 6pm; they told me to carry on doing what I am doing, so I will.

I'll keep on breathing on my own, I'll keep on reducing the amount of oxygen I need, I'll keep on sucking my dummy (to help with my sucking reflex as babies only get this going at about 32 weeks gestation - so I'll be ahead of the game!), I'll keep on reducing the size of my tummy (which is pretty much back to normal apart from I'm starving as they're not feeding me), I'll

keep on producing number 2's and when I'm feeding again I'll keep putting on proper weight. I'd better try working on that voice thing - Mummy says to Daddy that she thinks she heard me make some sort of noise and Daddy said to Mummy that he thinks he heard me say 'Daddy' - I haven't peeped a thing yet so they must be going a bit loopy!

I'm on film....

If you click on the link below you can see me on video with my new breathing mask and special dummy to help me get used to sucking.... Oscar 070529AA

I'M BREATHING FOR MYSELF!!!

Yep, that's right... I'm breathing all for myself with no ventilation tube in my mouth. Every in and out is me doing it! I've been doing it since 1pm this avo. The 'problem' now is that you can't see my face and the 'hat' thing is covering my eyes.

They've taken me off of the morphine too, they'll be lasting bits of it in my system for a couple of days, but I can't be on morphine and breathe for myself as I wouldn't do as well (although with it still in my system at the moment I'm doing really well so the nurses say).

I've no trouble in the number 2 department either now... Mummy changed my nappy and she didn't realise that I just 'had to go' at that time and I didn't have any nappy on - they had to change my blanket - oops! However I've still got a big tummy and they're treating me for it; hopefully it'll go down in the next couple of days and I'll be infection free.

I'll let you know how I get on a bit more tomorrow - I must concentrate on my breathing...

Calm me down Daddy...

For the past few days I've been awake during your night time, but today I managed to be awake whilst I had visitors during the day. Grandma Pat saw me with my eyes open for the first time - so that means that I saw her for the first time...

My tummy's still not right but I'm being given yet another antibiotic for my inside workings, we'll see what this does.

My breathing isn't being affected though, which is fab. The machine's giving me 37.5 breaths now not 50... The pressure's down to 18 which isn't as good as before but that's due to my tummy being swollen and getting in the way of my lungs.

I've cried a lot today as I've been uncomfortable, but after Daddy put his hands on me I calmed right down - thank goodness he was there.

Mummy gave me a wash all over and changed my nappy - Daddy even took a picture of me without any nappy on - that's for my eyes only!

My first kiss... oh, and another infection...

Yep, I've got another one. The nurses checked my blood platelets, which had risen so they started to give me more antibiotics. They took some blood for cultures the other day so hopefully results might be in this avo or tomorrow.

When Mummy and Daddy arrived this morning my belly had just popped out - my tummy had distended which means that it had swollen right up. This of course made Mummy cry and Daddy was very concerned too. They did an x-ray, which showed that things seem all clear as in I haven't got a perforated bowel or a problem with my stomach, other than the infection has decided that it wants my tummy to be it's home.

I've got a problem doing number 2's at the moment, so I'm on some medication to help this along a bit... I'll know by later this avo if it's worked or not!

Since all this went on though, Mummy and Daddy helped reposition me... the doors and roof to my home opened... I felt like running away and hiding from all the nurses who do nasty things to me, but I wasn't quick enough and nearly forgot that I'm actually attached to what's around me. I had my first kiss today - Mummy was allowed to give me a kiss, so she did on my head. I hope she liked it, I did, it's just that she cried afterwards so it's as though she didn't like it, I hope not as I'd quite like a few more of those!

I'm more settled now though and don't worry about me too much. This infection might mean that it takes longer for me to come off of the ventilation, but it's not hindering my being a good boy as far as my lungs are concerned. As my tummy's swollen they've had to increase the pressure on the ventilation (which is now up to 22 from 16), but that's because my tummy's pushing up onto my lungs; so they've tilted me a bit and the pressure being raised is to help keep my lungs inflated fully on the in breath.

I might say a little hello later, but I might be snoozing quite a lot so I might not get the chance. It's better to snooze than be active as my concentration can be on getting better - keep me asleep until I can come out to play then I say!

Steady as I go...

I've been a good boy, as promised. I've gained 33g's, so I'm now up to 963g's which is proper weight as Mummy checked with nurse, she said that if anything that I'm slightly dry! So Mummy checked that the fluid from my lungs has gone... and it has!

I'm on 3ml's per hour of Mummy's milk now, so I'm going to get all round and lovely so I can have squingy cuddles.

Mummy checked that when I'm off of the ventilator that I can be promoted to the room next door - yes, she said! They've got windows in there and I'll be able to see the outside - that'll be nice Mummy says, but I haven't got a clue what she's on about...

My ventilation pressure has stayed at 16 today and the number of breaths they've put into me was up at 50 but then went down to 45, so I'm going in the right direction again... my oxygen level has varied from air...21% up to about 50% when they've been faffing around with me. I was all cosy on my front and then I got uncomfortable, so started beeping at them so they turned me over - this beeping works really well for me to get what I want... Mummy says that she wishes it was as simple for her!

Daddy sang 'rock-a-by-baby' to me, he sings it quite often. I'm going to get him to learn the proper words for next time, he should think about a singing lesson too! I love him though, cos he loves me and I can't wait to do 'boy' things like build his car with him. I know that I need to grow up a bit, but Daddy says I can watch him for the next few years first until I'm big enough!

Daddy took some piccies so that you can see what I can see. Just look at the sky

I've got 2 permanent security guards - Kraut the bunny (he came from Germany to see me, Aunty Steph gave him a lift) and there's Champ the Chimp (Grandma Pat's friend called Pat gave him a lift), my friends sit at the bottom of my incubator as they fit there quite nicely!

I think that this is my Mummy, I can't see her very well as it's all blurry in my eyes...

Daddy's blurry too... (this is when I was blue - not from today). They tell me that they can see like me when they've had a few drinks - is it my milk that makes me see like this then - they didn't explain this one to me very well - why was that then?!

I must go to sleep now, it's very late, nunnight xxx

My first parcel....

delivered by the postman with my actual name on it.... yippeeee.... its so exciting, its as big as me nearly and i cant wait to see whats inside it, my mummy will have to open it and let me know what my new present is. Mummy and Daddy tell me its come all the way from Ireland where their friends Neil and Noirin live with my new friends Searlait and Jacob. Thankyou, Oscar xxx

Not another one...

Weight: 930g's - yep, gone down by 40g's; it could be some more fluid that's come out - hopefully the fluid in my lungs is in with that lot.
Food intake: was 2.5ml's of Mummy's milk but now it's nothing as I've high blood sugar levels, probably caused by the steroids. They're giving me insulin the counteract this and they're giving me full fluids again so that I'm not losing any vital vitamins and fats.

I had a couple of wobbles today - as in, my heart rate went down and the oxygen level in my blood did at the same time - the nurses weren't handling me either, so they were wondering why they happened. However, they changed my tube for the second time as this happened on Monday too, so they looked at it and had to give me a new one as it was a little blocked.

So now, I'm tired and am resting. My morphine level has gone up from 20 micrograms to 25 today. The pressure of my ventilation went down to 14 at it's lowest point and was for a few hours until they put it back up to 16, they were giving me 35 breaths per min at my lowest level, but that's gone up to 45... you see, they've put them up as I had those two episode's this avo... a contributor could have been that I've been pushed a little too far a bit too soon. They've got to test me though to see if I can cope - I'm getting there but sometimes when I work really hard it gets tiring and I need a break.

I am happy though. My strength remains and certainly too does my will to get this tube out once and for all, it doesn't mean that it won't go back in again, but I'll try my hardest to stay a good boy and do all that I have to do. Be patient though as it's tough being me and I can't be rushed.

Mummy went out...

...on the town last night and wouldn't let me use the computer without her supervision... I've been waiting all night to tell you how good I was yesterday.

I'd put on 40g's so now I'm 970g's which is over 2lbs of proper weight! I'm on 2mls per hour of Mummy's milk, this will go up again soon.

I wasn't quite right about my steroids being stopped, I'm being weened off of them and had 2 doses yesterday instead of 3, I'll probably have 2 doses again today and then down to 1, I'll let you know.

I was on hfo ventilation but yesterday in front of Mummy and Grandma Pat they turned it back to conventional ventilation... cool - the pressure at which they pump it in to me is now 16 and they're doing 45 breaths per minute for me, but I must have done loads as the monitor said 70 at one time!

I hope today's as good. I'll let you know sooner this time - Mummy's staying in tonight!

On the up?

This morning I had an episode... my oxygen levels in my blood went down quite hugely... They took my tube out and guess what...? It was blocked! So I've got a (nice) new one and I'm much more comfortable. When Mummy arrived today I was on about 30% oxygen on my ventilation, this has gone up a bit during the day and went down quite a lot too, I'm not on air yet, but hopefully will be soon.

I'm not really puffy any more which is great, so they've taken me off of the diuretic and they've increased my fluids and my milk which is now 1.5ml's per hour, so hopefully any weight I put on now will be true weight and I'll get bigger muscles!

My course of antibiotics has finished and my 5 day course of steroids is over and they seem to have worked as my oxygen requirement is now much lower and so is the pressure of the ventilation... Before it comes out and I breathe on my own they're likely to try me back on conventional ventilation again just to see how I cope, but this will be in a few days.

Ouch! I've got sticky things all over me holding wires for the monitors in place... but they've taken one off and taken some of my skin with it... It's really sore, just like when you've exposed a layer of skin and haven't yet reached where it bleeds - it's very stingy.

Another one of the same please

I've had a better day today - even the consultant doctor said that another day like this would be good. I haven't made heaps of progress, but I've kept stable and my oxygen requirement has got to a lower level. What I have learnt today is that at 21% level of oxygen, that's actually 'air', like you breathe. I've been down to 28%! I have been a bit fidgety though so they've given me a sedative - not a paralytic but a sedative to help me sleep, which I did a lot more this afternoon and this evening.

I've wee weed more today and they've decided to give me one less dose of diuretic. They're giving me another 0.5ml per hour of Mummy's milk and they're giving me more fluids (lipids etc), I'm not so puffy now I don't think so they can do this now. I hope that my lungs are less squidgy.

What else, I've had the pink plaster on my ventilation tube replaced as when they did a lung x-ray they saw that it was a bit too low in my lungs. I kept on pulling out my food tube too, although the sticky tape keeping fixed to my chin didn't stick very well.

Daddy saw me this morning and put his hands on me to calm me down a bit... Mummy sat there for hours with her hands on me to keep me still this afternoon. I hope that I make it through these tough times, that there's no other significant problems and that I'm OK later in life. There's no way of telling about this other than to go through things in due course - Mummy and Daddy find this difficult to deal with as there's no answers for any of their questions - not even the doctors really know as they are just focused on saving my life no matter what the future may hold. I can't answer them, which is difficult for me too, we'll just have to wait and see... what we have to endure we'll do together...

Wee, wee, wee all the way home...

Wee, wee, wee anyway... that's what I need to do. You can see from the piccies just how puffy I am, especially if you have a flick through the other piccies to compare me to what I was like. I look as though I've put weight on, but it's all water retention.

I need to wee to get rid of the puffiness which is basically water in my body tissue. Only when I've got rid of this can I get rid of the water in my lungs. Imagine a sponge that you've just submersed in water, it'd be all soggy and wet, you'd need to squeeze all of the water out to get the sponge light and spongy again... my lungs need to be light and spongy. The reason why they're so wet in the first place is that my lungs aren't filling with air properly on an in breath and can't breathe all of the air out on an out breath. My lungs are like a balloon that hasn't yet been blown up... imagine trying to blow up a balloon that you haven't stretched, it's very difficult. The pressure that you'd have to breathe into the balloon would be huge... These are the problems I've got with my lungs, so that's why I'm taking steroids (not to turn me into a girl!) but to reduce the inflamation because of the pressure.

I'm stable with my progress at the mo, with today showing a little improvement. Mummy's been calling me a 'good boy' all day but then the consultant doctor came over and told Mummy that I was a 'relatively good boy'! She needs to try lying here... but I know that she's the best person to tell me what I need to do and she knows exactly what needs to be done... so I am listening to her and have started to improve. But tomorrow is another day...

They're giving me 0.5ml's per hour of Mummy's milk again. This isn't for me to put weight it's so that my bodily function of doing a number 2 carries on... so that my inner workings stay working and so that I don't get an infection with things staying put inside me. I've started to wee wee more, but I need to turn the tap on for longer... Mummy's been making pssscccchhhhh noises at me - she thinks this will help me - I just think she's gone mad!

Mummy's held my hand a lot today, that was nice. She also held a cotton wool ball to my foot when they needed to prick it and take more blood to monitor my blood gases (which have got better). I like Mummy's help, her hands are soft and I can tell it's her rather than a nurse. The nurses do things that hurt sometimes and they're a bit heavy handed - only because they need to be, but Mummy's kind and tries to hold my hand through all of this poorliness.

Peepers

There's a condition called 'Retinopathy of Prematurity' that affects premature babies, and I'm definitely one of those... The retina can detach from the back of the eye and there can be abnormal or too many blood vessels a the back of the eye and they might not work properly. They tested my eyes by putting drops in them that dilate my pupil. They then have a look through my eye to see what's going on...

My eyes look fine. They're going to check them again in a couple of weeks to see if everything still looks OK. The oxygen they give me, if it's at a very high level may still affect them, but let's hope not. I still can't see properly obviously, but I hope to develop my sight just like a normal little baby.

Don't be fooled...

...by me having a good day. The registrar that Mummy spoke to this evening said that I was a good boy today. I think that she may feel sorry for me - I'm all puffed up at the moment, Mummy says that I'll end up looking like the toad that Shrek blows up for the princess, but then she gets all teary at the thought of taking the 'wotnot' out of me...

I've been keeping my intake of oxygen to a minimum, which is good; and the amount of pressure that the hfo is given to me has gone down... I mentioned it being around 13 then around 11, it's around 10 at the moment... so all is quite good news for the ventilation problem so hopefully the steroid is working, but we'll know more in a day or two.

The problem is though, that with one 'solution' or attempt at rectifying one situation, another one happens and everyone's in a state about it. My body has puffed up as I'm retaining too much fluid. As well as the fluid on my lungs there's excess fluid in my body and I'm not weeing as much as I was and that doesn't help. I need to wee for England to get my puffiness down which will then help the fluid in my lungs reduce... they're giving me a double dose of diuretic and I'm also on dopamine which should help - but I'm still all puffed up... puffed out and puffed up, what next?

Well, I've also got a high blood sugar level and a high blood acid. These can be treated. The variuos fluids going into me can be adjusted. The acid thing is called 'metabolic acedosis', yeah I know, what! It can be treated with 'bicarbonate', but Mummy thinks that it sounds a bit like 'bicarbonate of soda' which she says makes things rise in cooking - that's all I need to 'rise' as well as 'puff'... It's just as well I'm being monitored otherwise the nurses and doctors wouldn't know what was going on, least of all what to do about it. In fact I'd like to say a little 'hello' to Justine. Justine is a kind nurse who looks after me. Justine is expecting her first baby in October and I've told her about how I'm chatting to all of my fans. Justine thinks I'm lovely, so I've got to keep up the good work so that she gives me extra special attention - she's also really nice to Daddy and Mummy who need all of the information they can get about what's going on... and Justine lets Mummy wash me which I like...

I'm looking forward to a relaxing night in with me and the guys and gals in the hot room. I'm going to behave, wee wee, stop trying to breathe against the hfo, get my oxygen levels down to just air and reduce the pressure at which they give it. I've had no paralysis drug today and I've just had the morphine to keep me still... I'm going to make everyone proud and I'm going to carry on dreaming about being at home...

If, but, might, maybe, possibly, don't know...

...all of the above applies to the situation I'm in... no-one has any answers so it's difficult to know what's going on...

Today though I've been good, but tonight, tomorrow and so on I just can't tell you what I'll be doing... I didn't let Mummy or Daddy take any piccies of me today, I wasn't looking my best - a bit star shaped on my bed, mouth gaping open 'catching flies' type of image - not my usual cute self I'm afraid.

The steroids were started at 6am, which is when they changed my ventilation from normal 'in/out' to the high frequency oscarlation (hfo). I was needing 80% oxygen last night, which has now gone down to 30% give or take and I'm not desaturating as much (hardly at all now actually), which is a good sign. I'm not fighting the ventilation either as I'm still being paralysed, this is of course to give my body the best chance of stablising and the best chance the steriods have of working well to reduce the inflamation of my little lungs.

I could still hear what was going on around me, Daddy and Mummy stayed with me for a while. We miss each other when we're not together. I'm so glad that Daddy hasn't gone away, although now I won't get a present from the NASCAR teams! I can live with that for now.... Grandma Pat's coming over from France again this week, that's something to aim for. I'll keep you all posted as I appreciate all of your kind messages and all of the love you're sending me. I hopefully won't let anyone down, I'm working my hardest but I just can't be sure what the future holds - so don't get excited yet, there's oh so much more to do and several huge mountains to climb I'm quite sure. It's important that you all know what's going on; keep sending me those happy thoughts and words of encouragement, Mummy tells me about all your messages, it's really important to my little family of 4 (apparently I have a pet rabbit called Stuart) xxx

Changes overnight...

... Mummy chatted to the registrar this morning and he'd chatted to the consultant already. They've decided to bring the steroid treatment forward. Overnight I didn't cope very well... the pressure of the ventilation is at it's maximum.

They don't think I've got an infection at the moment, so that's relatively safe, the steroids won't cancel out any antibiotic medication, however the steroids do have an effect on my immune system, at least they won't be helping it to develop. They did some more cultures on my blood last night, but they won't get the results for 48 hours, but still they can't wait to see if there's any more infections to treat which is what they'd have preferred.

They're changing my breathing back to the high frequency 'oscarlating' type rather than conventional. They're keeping me paralysed so that I don't fight it. They'll know more about my copability later this morning.

Daddy's not going to America now, it's too far away to be able to come back if he needs to. He wants to be here for Mummy and me.

Progress MUST be made...

Weight: 900g's - 5g's away from 2lbs! BUT read on...

Food intake: not too sure - nothing at the moment apart from the lipids which are at a normal level, not halved any more... they won't be feeding me any milk for a while so I might not put any more weight on for a few days and it's likely that I may even lose a bit of weight...

Today they paralysed me so that I would concentrate my efforts on my ventilation and breathing, so I haven't moved at all, but my eyes have been open and I've looked around, they've given me some eye drops so that they don't get dry and there's a blanket over my incubator to stop the bright lights getting in and dazzling me.

Daddy and Mummy chatted with a consultant doctor today. They said she was a nice lady, but she told it how it is and there's a plan for what they're going to do with me.

It's all about my lungs. I'm not behaving any differently from any other baby born at 24 weeks, but my lungs are stiff, very stiff which is basically chronic lung disease - and I've got it. The contributory factors are the ventilation tube and the pressures at which they have to pump the breaths into me at - they are very high and nothing's happening.

The plan for me is to start a low dose of steroid treatment. They're starting this on Monday after they've done some more cultures to ensure I've no bugs... They'll give me the treatment and will evaluate my situation on Tuesday before they give me some more and then again on Wednesday... this will either work and they'll stop the treatment and get me off of the ventilator within the week, or it could take longer because of the damage already caused. Either way, I should be off of the ventilator in a couple of weeks.

Please be optimistic for me as this is the biggest hurdle I'll be facing so far. If I don't respond then I'll die, if I do respond then great, but there could be some lasting effects of damage to my body - but then I'm facing that anyway due to being born so early. So let's all put our little heads together and wish me success. My Daddy and Mummy love me so much that I want to be able to give them some love back again when I'm better.

A bit more of the same...

Weight: 860g's (just under 2lbs) - let's all will me to get over the 2lb marker... send some positive vibes my way!
Food intake: 3.5ml's per hour of Mummy's delicious milk - they've halved the lipids they're giving me - this is a fluid vitamin and fat supplement - they're going to take me off of it completely soon and I'll be getting everything I need from Mummy - cool!

I've not really progressed today, but I've not gone backwards either - I've stayed the same, on my tummy, oxygen going up and down and the nurses compensating for this... I was on 55 breaths per minute from the ventilator and last night it went down to 45... but up to 50 after a while and then up to 60, down to 55 and then this afternoon back up to 60... what a yoyo!

They've been sticking needles in the heal of my left foot - one of those pricky things that enables them to take blood. They've been taking blood like this for my blood gas tests - this is what's determined what breaths per minute I get, they can measure how much I like the lesser number of breaths - obviously not that much! My foot hurts though, they do this every 2 hours or so and the doctor told Mummy that I might have a bumpy foot for quite a while as the tissue under my skin will have to heal (heel - get it?!).

Mummy read to me 'Snow White and the 7 Dwarfs', a bit of a girlie story - romantic prince kissy stuff - I'm looking forward to Daddy reading me a good story about cars and motorbikes.

The doctors are going to see how I get on over night and they may reduce the pressure of the ventilation, so that they're not inflating my lungs with such force - that would be nice as it went up during the night because my lungs are a bit stiff.

The blue light is looking likely to glare above me once again, they'll put those eye patches on again... I want to be able to see, I'm just getting used to things - oh well, sometimes there'll be a few steps back to take more steps forward in the long term.

Not so blue...

Today was a 'pink day', otherwise known as a non-phototherapy day, I wasn't under the glare of the blue lights. Normally the blue light over my incubator lights up the whole hot room... but today I was just like all of the other special babies... I looked all pink and normal - with no goggles on! Mummy says that she's going to keep my goggles so that when I'm bigger and understand what she's talking about, she'll show me the size of the goggles and I'll gasp in amazement at how small I am now compared to how I'll be. She'll probably stick them in her diary along with my first elastoplast - the things that Mother's do, eh!

Some good news is that I've come down on my ventilation. Not by a million miles, but where the machine was doing 60 breaths for me, it's now doing 55. The good thing is that I can still do breaths on my own and at one time the reading was 68! That's a whole 13 breaths on my own... although I'm not sure over what period of time, I'll have to investigate and find out just how good the 13 breaths is!

Last night they reduced my feeding for a a while as they wanted me to concentrate my energies on my lungs not on my digestion. But now that I've no bugs I'm more able to cope with various things, so it's up to 3ml per hour again. Hopefully I'll be gaining weight healthily soon. They didn't weigh me yesterday - but I'm a nice 820g's now... knocking on the door of 2lbs again...

Who said wobbles... what are they... it's been ages since I've done one of those... ages in my world anyway... My oxygen saturation has gone up and down today - but I've been good and have done a lot more regulating myself. Typically each breath that they give me contains a percentage of oxygen... recently they've been twiddling with the amount and it's been up to 60% at times - it's now a far better 40% give or take. Once this is stabilised a little more they'll reduce the pressure of the ventilation - this will be a day to remember as it will be the right road to recovery and coming off of the ventilation - fingers crossed!

Something's been bugging me....

I've had more tests today to see if the antibiotics are working to clear my infection.... according to the doctors i am bug free today! lets hope i can stay bug free for a while so mummy and daddy dont have any more to worry about!

A better afternoon, I think...

...I've still been a bit unsettled, but have remained the same and haven't got any worse over the last few days. I've got my groovy goggles on as my phototherapy continues... As I said earlier today, I've got an infection and that's why I've been wobbly. I'm still wobbling a little but we'll know by the end of the week if the wobble has stopped - if not, then I'll carry on with the anitbiotics and will hopefully knock the wobble off it's feet instead of it knocking me out!

Mummy saw the doctor give me a head scan today, she didn't really understand what was going on or what they were looking for... I do, they were looking at the fluid around my brain. The doctor said that she thought everything looked ok... we'll know tomorrow if there's anything amiss.

They keep taking blood out of my foot - it's like a pin cushion. I had a little round elastoplast on my toes that wasn't doing anything, so the nurse said to Daddy that he could take it off - that hurt a bit, but I know he didn't mean it to hurt - Mummy's put it in her diary of my progress - arrh, isn't she soppy!

They didn't weigh me today, I was too fragile this morning and wanted everyone to leave me along... I'm still on 3ml of Mummy's milk - but due to my wobbling around this morning they starved me for a few hours, I now know what a grumbly tummy is like - gimme food, I'm hungry!

Let's see what tomorrow brings, I'm not expecting any great wonderous things, but hopefully I'm well on the road to recovery from my infection. It is one that can come back again, but let's not think about that... Let's think about a nice long sleep with no wobbling, just dreaming of coming home soon... x

Not feeling so good this morning...

After my good day yesterday I've had a rough night, my sats where up and down all the time and i wasn't getting enough oxygen. Doctors had to replace my breathing tube again which was nasty and caused me quite a lot of distress, also i had my lumber puncture.... ouch!

This morning mummy had a chat with the doctors, the lumber puncture wasnt a success, they didnt get the sample that they needed so that was painful for nothing. They might do it again another time to see if they have more success. Apparently i do have an infection, I've been on antibiotics now for three days to beat it, doctors are confident the antibiotics will work. According to the doctors its the infection thats causing my sats to go wobbly. I've been messed about with for a while now so im just going to relax today and hopefully everyone can leave me alone.

Mummy, grandma Felicity and auntie Leone are coming up to see me today, so they will keep me company and mummy can read me a story.

What a good boy...

...I am, today (Monday 14th May 2007), I have been a gold star student. I've been resting and sleeping for most of the day. If not then I've only been awake for the nurses to give me some attention (nappy change which Mummy did this afternoon and taking some blood and turning me over and things like that).

I've been telling Mummy some incorrect weights... I'm not so big after all - I started off at 760g's, have gone all the way down to 680g's and peaked at 850g's... now I'm down to 790g's... sorry to mislead you all and to get you all proud of me for fattening up... I think that all the wriggling over the last couple of days has burnt off some calories, but I'm up to 3ml's of Mummy's milk per hour now! Mummy says that I'm a lucky boy being able to eat whatever I like (or drink anyway), she says that she has to be careful about these things as she doesn't want to fatten up like I do - it must be awful for girls!

My oxygen levels have still gone up and down a bit... I need to get to grips with this as when it levels out (the amount that they give me) then they'll reduce the amount of pressure they're putting on my lungs to help keep them inflated... I look forward to this as the pressure they're putting into me is much more than it would be for an adult and it's causing inflammation of my lungs which hurts... I've mentioned this before as 'chronic lung disease'... that's why I'll probably come home with an oxygen bottle and prongs up my nose!

The doctors chatted to each other this morning, they think that they'll give me a 'lumbar puncture' tomorrow. This is where they put a needle into my spinal chord and take out some of my spinal fluid (the same sort of process as taking blood from a vein, but from my back and for a different purpose). They'll have a look a this fluid to check out any bugs that may be present, so that they can get a head start to treat any gremlins in my body to kill them rather than the other way round - it sounds a bit nasty, but it would be far nastier for me than for those little wotnots!

Oh yes... remember yesterday, me telling you that my right eye was partially opened... I wink no more... both of my eyes are open and I think that what I'm seeing is shapes and movements... not that I know what shapes I'm looking at or what's moving... but hopefully my sight is ok, we'll know at some point in the nearish future so I'll let you all know when I do.

Here's hoping that I have a good nights sleep - nunnight... x

My High Tech Home.....

For some brief Technical News i thought I could show you my high tech home. In the middle of the picture you can see my incubator which controls my light, temperature and humidity, there are access hatches in the side for mummy, daddy and nurses to get access to me. The roof lifts up with motors to get full access to me when performing any tricky procedures or if I'm playing up and need lots of nurses and doctors....!!!

On the left of the picture is my ventilator this has all sorts of wiggly graphs and technical stuff on it which daddy seems to find more interesting than me sometimes! The ventilator regulates my breathing for me, without this very special piece of equipment i would be in real trouble.... i cant wait until i don't need it any more though.

On the right up high is my LCD TV ! but i cant get it tuned into anything than more wobbly lines and it makes lots of beeping noises. The wobbly lines show my heart rate (should be around 150-170 bpm) and my oxygen levels, nurses call this my 'sats'.

What you cant see in this picture is all my medicine machines.... they are permanently connected to me by little IV lines and slowly keep me topped up with all the antibiotics, pain killers and fluids i need. These lines are not very nice, i don't like them, they feel uncomfortable.

Finally the most essential piece of equipment that does the most to keep me calm and comfortable is my mummy, you can see her hiding behind my incubator keeping her hands on me so that i know she is there.