Happy Birthday to Me!! Two years old today...

Today is a big day!  It's exactly two years since I scared the shit out of Mummy and Daddy by kicking my way into existence three months early.

Finally home - seems like ages ago now!

Even though I'm now two years old Mummy and Daddy (and everyone else for that matter) still give me the benefit of the doubt by taking three months off my age when I'm rubbish at something.  For example, I'm not exactly stringing sentences together yet - mainly my vocabulary consists of going 'Uh ooooh' whenever anything falls on the floor, and shouting 'Bah' if it looks like someone is leaving the room - but this is OK because even though I'm two... I'm only 21 months really!  This is an extremely useful excuse which I hope will last a lifetime.  Failed GCSEs?... three months early!  Failed driving test?...three months early!  You get the idea.

My first birthday!

I suppose I need to apologise for not keeping up with this blog thing once I came home from NICU.  Truth is, I was so overwhelmed with all the stuff I had to take on board, I didn't really have much time.  I know some of you have been wondering how I did after all that hard work to keep me alive and get me home; well you needn't have worried.  I'm just fine.  I've had the usual bugs that all kids get, and once or twice I've had Mum and Dad a bit nervous when my breathing has become a bit laboured, but I've not needed to go back to hospital once since the day I was released.  They really did patch me up well and get me ready for life outside!

AUSTRALIA...

I had my first holiday in the August after I came home so I was only five months old (two months really!) when I went on my first flight.  It was so cool - I remember the bings and bongs sounding a bit like my incubator alarms but instead of being chucked on a ventilator I just had to put my seat belt on - much easier. Since then, I've been to Spain (twice), Australia (bloody long way) and Antigua!  My dad reckons I'm spoilt because he didn't fly on a plane till he was nineteen but I should point out that so far he hasn't needed to buy a seat for me, so he should shut up and stop being such a tight git!

Me on a plane!!

So yes, I've been absolutely fine since I came home but I know that hasn't been the case for all of my fellow NICU inmates - some of them came out on oxygen and some of them have been back in a few times since. It's tough for mums and dads with premature babies.  Apart from all the stress and worry about us babies, there's the expense of getting to and from the hospital, the time off work, the car parking, the cost of hospital food and a whole load of other things to worry about. That's where Bliss are brilliant - they are the charity for babies born too soon and they do an amazing job.  Mum and Dad have been raising money for them and so far they've been able to donate over £5,000.  Mum did some running ('cause she likes that stuff) and Dad did a car rally around Europe ('cause he doesn't).

Amazingly my little blog here, which I only started for my own amusement when I was stuck on my back in a clear plastic box for 90 days, has now had nearly 24,000 visits, which is incredible.  Mum and dad have had messages from all over the world, and sometimes when a friend, or someone a friend knows, has a premature baby, they can talk to mum or dad about it. I think this helps a bit even though my parents were actually rubbish at taking it seriously!

Dad says that every now and then mostly when he least expects it, someone who's read the blog will ask him how I'm doing and remind him of my 'scary time', and dad says that his eyes sometimes still get a bit leaky when this happens.  I think this is because he loves me.

He's definitely not the only one either.  When I finally made it home I met all of my family and they are pretty cool.  Turns out I have two 'grown up' brothers who are 18 and 16 who were too cool to visit me in hospital but now they call me 'Pilo Pilo' (don't know why!) and throw me around like a rag doll.  My grandparents are all pretty neat too and do all of the required adoration very well indeed.

Mummy says I'm a handful sometimes (I am), and Charlie spends a lot of time trying to stop me from playing with his things (and breaking them).  I suppose it's fair to say that I'm a little bit hyperactive but they should have known I was impatient for goodness sake.

My 2nd Birthday Present! 

So there you have it.  Two years after that crazy day in Warwick and life is good.  It's a life I couldn't wait to get started and a life I nearly lost on a few occasions, but it's a life I wouldn't swap for anything!

Happy birthday me!

Poppy Lola (aged 2) xxx

World Prematurity Day - Poppy's Video

Released into the Community!

I had no idea how exciting it was going to be... no idea at all!

The calm before the storm!

I'd heard people talking about 'going home' but to be honest, when you're 90 days old and still 10 days early (if that makes sense?) you have very little understanding of what on earth goes on outside the doors of the Neonatal Unit.  I could tell there was something afoot on Wednesday from the minute I woke up for my 9 o'clock feed.  Everyone was a bit giddy!

Mummy and Daddy arrived a little bit later carrying a MASSIVE orange seat which was full of layers of padding each a bit smaller than the previous one... like Russian dolls!  The plan appeared to be to squeeze me into the middle like the last doll (the one that doesn't snap in half!) 

One last feed before I go...

Before they we're allowed to take me anywhere though, they were taken away to the parents room to watch a DVD.  Before you get excited don't worry, this one was called 'Resuscitation Techniques on Infants' and was more scary than informative.  As usual Dad wound everyone up by saying that he needed to practice on the dummy baby, which resulted in a small panic as everyone tried to find it.  This would later lead to a final delay before I was released.

The first delay was due to something called the 'TTO's.  This was the all the medicine that needed to go with me and for most of the morning we honestly thought this stood for 'to take 'ome'... it later turned out that it stood for 'to take out' which I suppose makes more sense.  Anyway, the nurses were having a right telephone tussle with the pharmacy downstairs - at one point I thought one of them was going to need my monitors when I'd finished with them.

OK... you can disconnect that last monitor now!!

Finally, everything was done.  All the paperwork was signed, all the medicines were ready, the video had been watched, my inoculations were all complete and the big orange seat was waiting... all that remained was to disconnect me from the monitors!  Yes, the last thing that happens when you leave Special Care is that they disconnect the oxygen saturation monitor from your foot and hand you over!  I think Mummy and Daddy found this a bit scary.  To be fair, I suppose if you've spent the last three months staring at a monitor full of numbers, it's something of a challenge to just look at me to get the same information.  Actually, it's not that difficult... if I'm pink I'm not desaturating... if I'm blue I am!

Before we finally stepped out into the sunlight (sunlight!!) Mummy and Daddy had a really nice chat with Dr Iodine who was brilliant.  He wanted loads of feedback about the unit so Mummy and Daddy gave him loads - they're very good at feedback - and Dr Iodine seemed very happy.  I might see him again when I come back for his I2S2 study.  I do hope so.

Look carefully... there's a baby in there!!

Then it was time to strap me in, or rather to wedge me in to my car seat.  I more or less disappeared into it.  Safely pinned down, we all did something of a Royal Visit back to the Intensive Care Unit to say goodbye to the nurses on duty.  They were all very excited to see me go ( I took this as a compliment!) and even though they must see tiny babies in big seats all the time, they still made a big fuss of me... I felt very special!

And that was it.  After 56 days in intensive care, 14 days in the high dependency unit and 20 days in special care, I was free to go.  Ninety days after arriving into the world feet first and fourteen weeks early, I can breathe, I can feed, I can see, I can hear and I can smile... which is so cool because I have so much to smile about!

I've had seven blood transfusions, eleven brain scans, fourteen x-rays and countless baggings!  I spent 23 days under the Billyrubin light (and three on top of it!).  I've had two sets of inoculations, I've had my eyes tested twice and my ears once and my heel pricked for blood samples over 100 times.  I've spent three weeks on a ventilator, a month on C-PAP and five weeks in high flow.

Fifteen thousand visits!!!

My Mummy has visited me 87 times (clocking up 7,500 miles along the way... and spending nearly £500 in the car park!), and this little diary, which I started in that scary first week to reassure some friends and family... this little Diary of Poppy Lola has now been read nearly 15,000 times!  You are all fantastic!  Really, really amazing!  I cannot believe how many people have sent me messages of support over the last three months.  I can't thank you enough. 

Not a good start!!

Daddy told me that when I was first born back in Warwick hospital and they took me away to the other side of the room, he really didn't think I had any chance of surviving at all.  It is incredible really that the tiny little baby in that plastic bag (me) made it all the way through... and even managed to get home ten days before her due date.  Dad says that the hardest thing about having a premature baby is not knowing what to expect and not knowing who to turn to, which is where the charity Bliss fills a gap.  Bliss is a national charity for babies born too small, too soon or too sick and they do a fantastic job.  I know from your messages how much you have appreciated me sharing my story with you in this Diary and I thought it would be a fabulous idea if I could use my Diary to help to raise some much needed money for Bliss.  So that's what I'm planning to do.

Daddy says that some of you reading this are skint... but that others are loaded!  Whichever group you're in, it would mean so much to me if you could give whatever you can.  I've set up a 'Sunshine Fund' in my name and by donating to it you will be helping babies like me and families like mine as they find themselves on a similar journey to this one.

You can donate online at http://www.justgiving.com/poppylola or you can just text PLHJ90 (Poppy Lola Hufton Jones - 90 days!) to 70070 and this will automatically donate £5 to my Sunshine Fund.  Dad says he's going to be pestering everyone he meets (online and offline!) to donate something to my fund!  He wants to raise £10,000!!!

Meanwhile, back to my Diary and my release from Coventry!  We all said goodbye to the nurses and then we headed towards the big double doors - the ones with the security buttons and video cameras.  Mummy did one final check to make sure my security tag had been taken off (it really is like leaving prison!) and then she pushed the button... and I was out!

... And then someone shouted us and we were back in again!  Apparently someone had been looking for the resuscitation doll for the last two hours and thought that we couldn't leave until Dad had a practice.  It took quite a lot of persuasion from Dad for them to let us go.  In the end he told them confidently that he had a Boys Brigade badge for first aid and knew exactly what to do.  The fact that this was over thirty years ago didn't appear to matter so we turned heel and fled.

And then I was really out!  The reception of Coventry hospital is a melting pot.  My introduction to the public was very politically correct.  If I'd had a checklist with me I could have ticked all of the boxes.  It was so crowded and we had to go through one of those great big revolving doors and when we emerged on the other side the sun was shining and a recorded voice was booming out of a speaker saying that Coventry Hospital is a no smoking zone...!  There were lots of people in pyjamas and nighties, and they were all smoking and ignoring the voice coming from the speaker.  This was my first lesson in life.

Mummy and Daddy had parked the car on the top floor of the car park by the big yellow helicopter landing pad.  I thought for a minute I was flying home but then I was packed into the back of the car and we were off.  I was really looking forward to seeing some of the places Mum and Dad had talked about while I was in the incubator; Warwick, Kenilworth, Stratford, Zurich, London and IKEA, but as soon as the car started I fell fast asleep... and I woke up at home!!

I had a few days to settle in with Mummy and Daddy and Charlie and Grandma, and then all of my brothers and sisters arrived for the weekend!  I've finally met Jordan and Harrison (and they're cool!) and we've been one great big dysfunctional Edwardian family... and I love it!!  I have three brothers and one sister!

I'm feeling great!  I still have a few medicines to take with my milk but apart from that (and being a bit petite) I'm just like every other baby... just like every other baby.

It's been an interesting start and it's been a pleasure to share it with you all.  I'm planning to keep writing my diary so you can see how I'm doing... maybe just not quite as often!

For now, I'm just so happy to be home!

Lots of love and hugs!

Poppy Lola xxx

Nearly there... nearly there!!

Hello from…  Coventry!!

Come on... shake on it!

Yes, I’m still here!  There have been a few occasions over the last week when I’ve been all packed and ready to move to Warwick but it somehow always goes a bit pear shaped at the last minute (a bit like me really!)  I’m in the SCUBA (Special Care) ward – right by the door.  I couldn’t be any closer to not being in here, but Warwick is full to busting so there’s nowhere for me to go.  It’s beginning to look like I’ll be going home from Coventry which is not really a bad thing.  Everyone here has been so fantastic it would be nice in a way to do all of my time in the same unit.

I’m so not in HDU any more!  It was all a very quick transition.  One minute Jess was taking the oxygen prongs out, the next I’m in SCUBA in a cot!   Yes, you heard that right – a COT! I’m wearing clothes and I have blankets and everything!   It’s a bit odd not having a roof (and a bit noisy sometimes too) but I love it!  The best bit is when Mummy and Daddy are here and they can just walk in and lift me out.  I still have the one monitor wrapped around my foot – this one checks on my blood oxygen levels – but apart from that I’m free to roam.  I feel like a real baby.

Blanket, clothes and everything!!

The threat of taking me to Leicester for a biopsy worked a treat.  Since the plans were made I’ve been making a pretty good job of everything I need to be doing.  I don’t want to bore you but the quick list goes like this…

Breathing – nearly cracked it.  Occasional de-sat, normally when I’m drinking from a bottle but not been bagged for ages.  I did have a cheeky blood transfusion just before I moved out of HDU – just to give me a bit of a boost on the billyrubin front.

Eating – Mostly taking milk from the bottle every three hours with the occasion blip when I’m tired and they have to use my feeding tube.  Not being sick.  No big belly.

Weight – 1990g (hoping to be 2012g for the Jubilee!)  This is somewhere just over 4lb for the oldies out there!

Ears/Eyes/Brain/etc. – No-one’s saying anything bad so I’m assuming it’s all looking OK.  Obviously on the brain front Dad has done all the jokes about whether they’ve managed to find one or not – he’s so not funny!

Communication skills – these are improving no end.  I’ve now discovered that if I’m not 100% happy with a situation I can scrunch up my face and make a whimpering sound and I can muster immediate attention.  I’m going to use this technique a lot.

Sisters!

What else…? Oh yes, Millie’s been in to visit me in SCUBA and I sat in her lap.  We did it very secretly when no-one was looking (we’re not sure if it was legal or not) but we seemed to get away with it.  It was so neat meeting my sister properly.  We had a little chat and Mille told me all about my Mum and Dad – the stuff that only kids talk about so I can’t tell you the detail here.  It was a very helpful insight though!

Another milestone... I've had a bath.  A proper bath!  I've seen some of the babies in here just put in a bucket of warm water and given a quick scrub, but I had a real bath.  Mummy was a bit nervous, and I pulled a few funny faces, but it was great.  We washed my hair and Mummy said that it went all soft and fluffy.  I smell a bit more fragrant now too!

My Private Room... (fast asleep!)

Dad's been trying to get in to see me at the end of the day when he finishes work but because he has to drive up from London he doesn't get here until 8 o'clock which is when the shifts hand over and Mummys and Daddys have to leave the ward (for confidentiality reasons!)  Poor Dad normally has to sit in the parents room for half an hour before he's allowed in.  Yesterday Mum knew that he was going to arrive at about eight so she called the hospital from home and the nurses suggested a nice surprise for him.  When he arrived they told him he could wheel me into a private room so that we could have some Poppy/Daddy time on our own!!  This was super cool.  It was a lovely warm evening so the window was open and I could feel the breeze on my face.  Dad picked me up and walked around the room chatting to me and (don't tell him I said...) singing to me!!  He's a rubbish singer but it was still neat.  After about 15 minutes I fell fast asleep and when I woke up I was back on the ward and Daddy had gone home. 



Nearly ready to go home!

Home is where I'm going soon.  I'm going to meet all of my family that I've heard so much about... I'm probably going to meet most of you (my readers!) too.  I'm pretty sure now that if I can manage to take a bottle on every feed I'll be on my way.  It might even be this weekend!

It's day 83 today.  I thought I was going to be in here for over 100 (and so did the doctors I think) so if I can get home anytime soon I'm doing well.

One final treat to leave you with tonight.  I'm still not sure if these videos work on my Diary but this is one my Daddy took when I was particularly hungry... it make him chuckle a lot!

Thanks everyone... I couldn't have done this without you all.  Nearly there... nearly there!


Lots of love and hugs!

Poppy Lola xxx

Poopy Lola

Hi everyone!

I have news... and lots of it!

As it's been a while since I've updated my diary - don't blame me it's all my Daddy's fault - so I should probably start with a quick summary to bring you up to speed.  (We can do the detail later!)

Daddy loves this picture! x

• I'm breathing air
• I'm breathing air without any assistance
• I'm drinking milk from a bottle
• I'm drinking milk without any additional fortifier being added
• I'm no longer on TPN
• I'm pooing!
• I'm pooing without having suppositories shoved up my nether region!
• I'm gaining weight (slowly)
• I'm on an A4 Special Care sheet - not the A2 Intensive Care sheet
• I'm waiting for a Special Care bed to become available for me in Warwick
• I'm very proud of myself!

Gosh!  When I write it all down like that it looks fantastic but it's not all been straight line progress.  As you would expect from me, I've kept everyone guessing along the way and there have been a few moments during the last week when it looked as though I was going backwards but overall it's been a very good week.

When I finished my last diary entry I was 'nil by mouth' and being fed TPN through a tube.  My belly was still swollen and I was waiting for a 'contrast' x-ray to be organised - so it wasn't looking good.  For the first few days my milk feed was slowly increased (very slowly in fact).  It took about three days for me to get back up to the required amount and all through this time my number twos were stubbornly refusing to make an appearance.  My belly was beginning to grow again.  In the meantime, the doctors had consulted with the radiologists who couldn't find anything on my normal x-rays to suggest that anything was wrong so the plan was changed.  Instead of having a barium x-ray, I was going to have a biopsy.

I heard the doctor explaining this to Dad.  'Basically' he said, 'we just use a suction pump to pull up a bit of tissue (from up my arse!), then we snip it off'!  He was very casual about the whole thing, he could have been talking about the weather!  Once again I mustered all of my energy to try to suggest that maybe there was another way but all that came out of my mouth was a soft gurgling sound which Daddy and doctor took to mean that I was happy to go ahead.  So much for Human Rights!

I realised that I was going to have to demonstrate progress... and fast... or the men in white coats were going to take me to Leicester for a bit of casual mutilation.

Luckily, things began to improve around this time.  I was given a suppository to coincide with Daddy's Saturday visit and duly delivered a beautiful load for him.  I was still on high-flow but most of the time I was breathing air through it with just a bit of pressure.  The pressure is measured in litres on high flow (don't ask me how this works) and I had moved from 4 litres down to 1 litre by Sunday.

Cuddles with Mummy

Look... I'm breathing!!!

Sunday was the big day.  I had a brilliant nurse looking after me who decided that this was the shift when I was going to make some big progress, and before you could even say 'profound desaturation' she'd taken the high flow away completely.  It was day 74 and for the first time in my life I was breathing air without any artificial assistance!  I had a huge cuddle with Mummy in the afternoon and then Daddy came in later and I had a huge cuddle with him too. I can't tell you how brilliant it was being able to snuggle up to them without having those prongs stuck in my nose...

Excuse me!  I'm pooing!

To finish the day off with another positive flourish, I surprised Daddy by pooing again when he was changing me.  This was a huge shock to everyone as no medical intervention had taken place - I'd pooed all by myself!  Can I just say at this point that in my efforts to reach this milestone I may on occasions have pulled a few ridiculous faces - a girl needs to push sometimes - and I know my Daddy has taken some photos, so if you ever see them on this blog you will tell me... won't you?  I don't trust him an inch!

Over the next few days I carried on drinking my milk, I carried on pooing, and I carried on breathing - all essential survival techniques!  My long line was taken out of my arm too, so the only tube left in is my feeding tube (for when I get tired on the bottle).  I'm still connected to the monitors just in case I forget to breathe, or my heart stops, or my oxygen drops... but hey, better safe than sorry!

Got the T-shirt!

And that in a nutshell is where I'm at.  I still de-sat a bit when I feed or when I'm a bit tired (still 'doing a Poppy' every now and then) and my belly is still a bit big but I think I've done enough to convince everyone that I don't need to be biopsied in Leicester.  All the talk now is of a move to the Special Care Unit in Warwick and do you know what, this time I think it's going to happen.  We're just waiting for a bed to become available and then the transport team will move me over.

I've been in NICU for 78 days, that's two and half months!  Maybe I'll be out before I get to 80 days... you never know.  My next Diary entry might be written in Warwick!

Thanks by the way, for all your very kind comments about my rap in the last blog.  Several of you asked how I came to be so familiar with the works of Robbie Williams, given my short and sheltered life so far, and seemed to be suggesting that Daddy might have somehow been involved.  Well I confess, it's true.  When no-one's listening, he quietly opens up the door to my incubator, hides his i-phone under my blanket and let's me hum along to his favourite tunes.  It was Wham! on Sunday but don't let on I told you!

Jeff Gorvette...! (Thanks Charlie!)

Charlie was in again at the weekend and brought in his Cars (from the film!) so I also had the indignity of meeting Jeff Gorvette for the first time.  I tried to explain that I really prefer Jessica Rabbit, etc. but Charlie wouldn't listen... and I had to pose for the photo to keep him happy.

Finally, you may remember my Daddy was alarmed about the stockpile of breast milk that was accumulating in the freezer at home.  Well the situation has apparently now become critical with 100% of available freezer space now given over to breast milk storage, forcing Daddy to consider radical options.  He's been Googling (whatever that might be!) and he's found this...!

Cheese anyone??

Lots of love and hugs!

Poppy Lola xxx

This one is just for the NICU Nurses...

My Dad found this video on You Tube... it's a bit cheesy (mostly because it's American), but it does help to sum up how brilliant the NICU nurses are...



...hard work, dedication, possession of knowledge, strength and resilience...

Thanks Nurses!

Poppy Lola xxx

It's lovely and soft...

I know what you're all thinking.  You're thinking that I've been away from my diary because I've been making rapid progress... that I'm out of HDU, breathing for myself and eating like a fat lass who's just got home from Gregg's.

WRONG!  I've been quiet because I've been focusing all of my attention on trying to get myself working properly.  I'm still in HDU.  To be honest with you I should be back in NICU but there's a bit of a one way street policy in here and once you start moving on they don't like you going back!  One of the small signs of progress in here is the size of the chart at the end of your incubator; when you're in ICU it's huge, it fills the whole desk, but when you move into Special Care it's A4.  Earlier this week (much earlier this week!) I woke up one morning to find the nurse filling out one of these A4 sheets.  I was so pleased with myself. 

It wasn't to last.  Since then it all gone a bit A2!

It was all going so well.  My breathing was improving steadily to the point where I was more or less just breathing air, with just a little bit of pressure from the high-flow ventilator.  Doctors and Nurses were confidently talking about 'just a few days' then I'd be in Special Care and on my way to Warwick.  Pah!

'Lovely and soft!'

What they'd missed was the slow but steady re-inflation of my tummy.  My Daddy reckons it's easy to be a Neonatal Doctor, you just need to learn a few tricks of the trade.  It's like kicking tyres if you're a mechanic, or sucking in air through your teeth if you're a builder.  Every day when the Doctors do their rounds they all stop and stare at my belly.  Then they have a prod at it.  And then (here's the bit you need to know if you want to be a Doctor), then they say 'Ooh... it's lovely and soft!' The fact that I look like a cross between a Cabbage Patch doll and a pot-bellied pig matters not... as long as it's lovely and soft!

This carried on for a few days but the bigger my belly grew, the harder it was for me to breathe and I started having a few major de-sats ...  or 'profound' de-sats as we like to call them in here.  I like this.  My de-sats aren't superficial or obvious, they're deep and meaningful.  Nevertheless, I'd rather not have them.

It all came to a bit of a head of Friday.  Mummy came in to see me in the morning and I was doing OK but my breathing was ropey and some of my milk was coming back up.  Mummy left to take Charlie swimming and Daddy turned up just as decided to be very profound!  Daddy thought I was being very floppy too and when he undid my little baby-grow thingy to change me, the size of my belly made him and the nurse jump!

Me being nice for Daddy!

Doctor was called and in discussion with Daddy it was decided that what I needed was good poo.  Great - suppository time again!  I won't go into detail - let's just say it did it's job.  Daddy was given a fine opportunity to display his unconditional love for me by trying to change my nappy whilst I played 'shit at the worst moment'!  It was carnage in my incubator - but the nurses thought it was very funny.  My milk feed was reduced and overnight I was moved to 'nil by mouth' and hooked up to a cannula.

On Saturday, Mummy made sure that she was here for the Doctors rounds.  I was very proud of her.  When the Doctor asked what the course of treatment should be my Mummy said that I should go back onto TPN (the cycling drug thing - Total Parentatal Nutrition!) to give my tummy a chance to recover... and everyone agreed with her!  If it had been an episode of ER, there would have been some stirring emotional music building to a crescendo in the background.  As it was, it was still a big moment for me.

On Saturday night - at the second attempt - the long line was put back in to my leg (this is a minor operation in itself and trust me it hurts!) and the TPN was restarted.  It was tough at first because I'm starving!  I'm used to being fed milk now, so having it stopped completely takes a bit of getting used to.  I'll suck frantically on anything that comes within an inch of my mouth!

I'm going to have something which the Doctors call a 'contrast'.  I think this is a special x-ray where they feed me something that will show up in my intestines so they can see if there's anything wrong down there.  Because it's something called a Bank Holiday weekend (???) they won't get the results back until Wednesday and then they can decide either to, a) start feeding me again or, b) send me to Birmingham for a procedure!  Yikes!  I'm hoping for option A!

More like a baby!

In the meantime, my tummy is now small again (but still lovely and soft!), my breathing is coming along nicely, and my weight is improving too...  I'm now just a smidgen under 4 lb so I'm starting to look a bit more like a baby and a bit less like a gremlin.

In other news... The thing you have to admire about the Neonatal Intensive Care Unit is the attention to detail and the strict processes that have to be followed at all times - all pretty sensible when you remember what everyone's here for - but there's one thing that makes me chuckle every day... the bit where the keys go missing!  The medicine cabinet (medicine cabinet?) is kept locked shut, I'm sure for very good reasons, so it needs to be unlocked whenever something is needed from it.  The process for this is as follows:

1. Shout 'KEYS'
2. Shout 'KEYS' again, only louder
3. Ask if anyone knows who's got the keys
4. Move to the middle of the unit
5. Shout 'KEYS'
6. Check pocket
7. Find keys
8. Announce to everyone that you have found the keys

Daddy was chatting to the Audit team the other day (he's made himself at home) and mentioned that they might want to form a working party to explore opportunities to improve the key finding process.  They ignored him!

Finally for today, thanks to everyone who's sent me an e-mail.  All of your messages have been so lovely and inspirational and heart-warming.  Sorry I've not replied to you - I promise I will.  The same goes for all the comments on Facebook and Twitter.   I've no idea what these are because I'm only 67 days old, but Mummy and Daddy told me that lots of people have been 'liking' and 'retweeting' things... so erm... thanks!

I've written a rap to keep to keep you smiling... to the tune of Rock DJ...

Me on the high flow
Movin' to the low flow
Poppy's gettin' big
And her belly even more so
Wave your hands if you're on TPN
Can I kick it?
(Yes I can)
I got
(bagged)
Mum got
(scared)
The blog's for everybody
I've got the gift
Gonna stick it in the goal
It's time to grow this body!

Lots of love and hugs

Poppy Lola xxx

Less Intensive Care...

Days in captivity...

Great news! 

After fifty four days of intensive care I've finally been moved to the HDU (High Dependency Unit).  This is like intensive care - it's actually in the same room - only less intensive!  I feel ever so pleased with myself.  Daddy tried to get me in the incubator next to the window - I think he travels on aeroplanes to much.

Here's my list of achievements in the last three days:

1. I've had a bottle... It was only 20 mls but I slurped it down, burped and went to sleep.  To be fair, I de-satted a few minutes later but breathing is on my list of 'non-achievements' which comes later.
2. I've had another go at missing out the middle man on the feeding front and collecting Mummy's milk directly from the tap (as it were).  It was OK but I was very tired, so once I'd had a bit of a taste I went to sleep - not what the gathered crowd was hoping for.  I'm not at all worried about this bit - as soon as I latch on to those muffins it's going to take a tank and a tow rope to pull me off.
3. I've been titrated.  Another new word for the blog and one which sounds great when said with a northern (Yorkshire) accent... tah-treeeh-ted!  It means that instead of being fed a tiny amount of milk every hour, I'm being fed more milk less frequently.  This is fine except I've now been introduced to a new sensation... HUNGER!  Hunger is not nice and it makes me grumpy.
4. I've put on a bit of weight.  Not much just a bit.  I clearly like the TPN feed (my performance enhancing drugs) and since it was taken away my weight gain has slowed.  I'm now 3lb 10oz - not much more than last week but still moving in the right direction.  The dietitian has been to see me a few times and she's asked the nurses to add something called 'fortifier' to Mummy's milk.  Mummy asked the dietitian if there was anything she could do to help, such as eating cakes or chocolate but she was told that she should only be eating a healthy diet - the old five a day stuff - with no treats.  Mummy looked ever so disappointed!
5. I have a new hat - the old one is now too small for my big head.
6. My eyes were tested again and everything was fine.  Dad reckons I'm a bit gozzy - this is Scouse for cross-eyed - but I'm not.  I just have trouble pointing them both in the same direction all the time.  The two things are not the same!
7. I haven't needed another blood transfusion and my gases still look OK.

My list of non-achievements (or 'failures' as my Dad insensitively calls them!) is a bit shorter, consisting of only two things - pooing and breathing!

My belly looks like this...!

The pooing thing isn't really too much of a concern.  My belly is still inflated like a Space Hopper and I'm becoming a bit self conscious about the funny faces I pull when I'm trying to push one out but the issue is being tackled with suppositories which (as you know from previous blogs) can have an explosive effect.  Mummy thinks that my big belly is mostly genetic and regularly points to the one that my Daddy carries around with him as evidence.  I think this is very insensitive of her.

My biggest non-achievement (by far) is still breathing.  The thing is, you all take it for granted that your brain is going to send a little message to your diaphragm every few seconds reminding it to contract... and generally speaking it does.  My Daddy told me that there have been a few occasions when his brain has neglected this task, normally in the middle of a big speech in front of a lot of people, and when this happens he has to take a few big breaths to recover.  This sounds a bit like a de-sat to me and I have them about five or six times a day - only difference is I normally have an audience of just one or two.  It's been suggested that this 'doing a Poppy' is some form of attention seeking and it's true that it generally results in a lot of activity, but trust me... I'd rather just keep breathing.

Head... shoulders... knees and toes...

I've progressed from C-PAP to high flow to low flow and most of the time I'm being fed oxygen at less than 10% which is really good, but this morning I has a major de-sat and went a sort of bluey grey.  This was bad, so I've been upgraded again to high flow.  This is OK with me as it means I don't need to put the mask back on (which I hate!).  Mummy was with me when it happened so she's a bit worried about me again but I'm fine... just keeping everyone on their toes that's all.

All the talk now is of Warwick.  I'm not sure if I've upset someone here or if they need my bed for someone else but they seem very keen to get me into a Special Care Baby Unit (SCBU - or scuba as my Dad calls it!)  Once I'm in scuba I can move to Warwick which is where I was born and much closer to home for Mummy and Daddy.  The step after that is home - so it's all quite exciting really.

Mummy's brother Rich has been over from Australia this week and the very nice people in Coventry let him come in to see me.  He's not really allowed but seeing as he'd travelled 8,456 miles they very sensibly allowed him in.  I was glad they did. He's a research chemist so he was able to have an intelligent conversation with Dr Iodine - something which my Dad has failed to do in seven weeks (bless him!).  Rich kept asking Mummy what all the numbers meant on my charts but once she'd covered off my weight and my milk intake she started to struggle a bit...

And talking of numbers, my brother Charlie's been in to see me a few times this week too and he's getting very good at reading my monitor.  He sat there for about twenty minutes reading my oxygen saturation levels out loud every time they changed - ninety two, eighty eight, eighty four, eighty six, seventy eight, seventy two, sixty four, fifty one, thirty two... BARP! BARP! BARP!  I de-satted especially for him and he felt very important!

Charlie has also been growing cress in a propagator at school and is now convinced that babies grow from seed.  That's going to be an interesting conversation with Daddy when he gets older!

Me...

Cress...

Life's never dull in here!  The last few days have been really positive.  Moving out of intensive care feels like a massive result and I'm so happy to be a step closer to going home, but I'm so frustrated about my breathing.  I know it stresses Mum and Dad out a bit so I'm trying really hard to get the hang of it but I'm still not quite there.  Give me another week... just one more week... and I'll have this thing cracked...

... I promise!

Lots of love and hugs

Poppy Lola xxx

Key Performance Indicators

I'm in trouble, aren't I? 

My only excuse for not updating my diary for so long is that I still have to rely on Daddy to post the blogs and in fairness to him he's been back in that Zurich place this week.  I still don't know where Zurich is but he told me today that he has to go on an aeroplane to get there. Tomorrow he's going to explain what an aeroplane is.

Today he was telling me about KPIs... apparently in his world these are 'Key Performance Indicators'... so I thought I would provide a quick update on my own KPIs:

KPI 1 - Weight

By the time you read this I will have been weighed again (Thursday and Sundays are weigh days) and I'm sure I will have gained a bit more but even so, my weight on Thursday was 3lb and 7oz, or 1.520 kilos.  That's my birth weight plus a half so I'm really pleased.  I think I might even be beginning to look like a proper baby - that's not the right word but I hope you know what I mean?  I look like a bit like a baby, only smaller... instead of looking like a gremlin in a nappy!

Like a baby... only smaller!!

KPI 2 - Breathing

This is a tough one.  I'm sort of getting the hang of it, slowly.  Over the last week I've been cycling (no they don't have me on a bike... you need to move into Special Care before that happens!)  Cycling in ICU means swapping between C-PAP and nasal prongs (or high flow).  This is all very confusing for Mummy and Daddy as they can't work out the difference between nasal prongs, high flow and low flow.  This was further complicated when Mummy spotted that the box delivering 'high flow' was in fact labelled 'low flow'!  Apparently this is normal and it is high flow (coming from the low flow box).  I imagine when I move to low flow it will be delivered through a box labelled 'no flow'...

My cycling is going well though.  The most I've managed on high flow is eight hours, which I did today.  I've just gone back on to C-PAP at 8pm this evening but I'm planning to make a big fuss to show how much I don't like having the mask back on my face.  I reckon I can do without the mask at all - I just have to convince the Doctors.  Leave it with me.

KPI 3 - Haemoglobin

This week I enjoyed my fifth (yes, fifth!) blood transfusion and I think I have now exhausted supplies from my original donor.  If I need any more I'll need to be paired up with someone else.  Hopefully this won't be needed as my gases are looking much better - speaking less technically... I'm a bit pinker!

I'm also pooing a lot better which is good for getting rid of red blood cells and helping my jaundice.  On Wednesday, Mummy was changing me when I suddenly felt the urge to... well you know what I mean.  I don't fully understand the meaning of the word 'projectile' yet, but it seemed to get mentioned quite a lot around that time.  To make matters worse, when the nurse changed me (or 'did my cares' as we like to say in here!) on Wednesday night I sort of exploded.  Listening to the doctors afterwards I think it's something to do with my fortifier - the stuff they add to my milk to make me grow faster.  Whatever it was, the effect was stunning.  I managed to decorate both the East and South wings of Chez Poppy with a greeny beige emulsion... and it stank!

I'm still on a bit of a cocktail of drugs with every feed.  The latest one to be added to the list is potassium.  When my Mummy saw this on my sheet she immediately went out and bought twenty bananas which she is now eating at the rate of four a day.  It's possible that this will help with my potassium deficiency.  It's equally possible that it might contribute to the decoration of the South and West wings... we'll see!

KPI 4 - Happiness

Foraging...

I'm doing really well on this one.  If the only measure of my progress was happiness, I would be out of here by now.  It's been a week of serious cuddles.  I think I've been out of my incubator every day, twice on some days, and it's brilliant.  Whenever Mummy cuddles me I keep getting this strange urge to find something to erm... suck on!  Whenever I start foraging around everyone says I'm rooting.  Just once so far I've managed to find something that felt right.  I gave it a good suck and what do you know... it only had milk inside it!  BINGO!

I plan to forage more aggressively next time!

My favourite photo... ever!

I've also had visits this week from Charlie and Millie.  I can't tell you how much I enjoy seeing them.  On Friday, Mum and Dad came in with Charlie and the nurse took a photo of all of us together.  This is like my favourite photo ever!  Charlie also had a try at being a Doctor.  He checked all of the numbers on my charts and stole the stethoscope from the drawer so that he would look the part.  This was both very naughty and very funny.

Dr Charlie Hufton Jones

There's also been a new initiative launched which is very sweet.  All of the babies on the NICU have been provided with a shoe box to keep memories and keepsakes in.  I'm already filling mine up with photos and messages and bits and pieces to look at with Mum and Dad when I'm older.  On the outside of the box, the nurses stick a balloon on for every day we're in the NICU.  I've been in here for 51 days now, so my box has a lot of balloons on it.

KPI 5 - Head Circumference



Three small toys discuss the size
of my head...!

It's getting bigger - still not quite a tennis ball but getting bigger!


That's the last of the KPI's.  Overall I'd say I'm progressing.  Nowhere near as quickly as I'd like, but progress is progress.  One day soon I might even move from ICU to HDU and then to Special Care... and then home.  Until then, it's one small step at a time.  Dr Iodine came over to see me this evening and told me that if I was writing my blog tonight I had to tell you all that he's very proud of me.  I like Dr Iodine and his passion for the I2S2 trial... and I happy that he's proud of me!

Does this look like my
Granddad???

Before I go I have to tell you a little story that my Daddy told me when I was getting a cuddle from him tonight.  In between visiting Switzerland and visiting Coventry he's been trying to find a new car and last Saturday he went straight from the hospital to the BMW dealership.  He was bit late for the appointment so he told them that his little girl was in hospital and showed them a photo of me on his phone.

Anyway. Daddy went to pick up his new coupe today and he was very excited.  He picked up the keys and just as he was heading off to drive it away the guy in the show room asked if he would be able to get the child seat in the back... FOR HIS GRANDDAUGHTER!  To be fair, Daddy took it very well.  He just left him... lying there!

My shoe box...

That's it from Bed Three for tonight.  If you want to leave any comments on the blog I've changed the settings so that it's easier... I think some of you were having problems.  And don't forget, if you want to e-mail me you can, at poppylola1@gmail.com.  I'll print it out and put it in my shoe box!!

Lot of love and hugs as always, and thanks for thinking of me.

Poppy Lola xxx