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

Mum and Dad get told off...

It's hard to know where to start this update.  It's been such a strange week.

I'm doing well.  I now weigh 3lb and 3oz, which is still below the average weight of a baby at 32 weeks but this means that I've now put on over half of my birth weight.  I'm not exactly 'bonny' (which is a word my Dad taught me to use instead of 'fat' when you're talking about babies) but I don't feel like I'm just skin and bone any more.  I'm beginning to feel much stronger and I think this is helping me with my breathing too.

I'm still on C-PAP but I'm now spending longer and longer on high-flow (or 'prongs' as we call it).  I much prefer it when I'm not on C-PAP because I don't have to wear the white hat and have the oxygen tube strapped to my face which means that Mum and Dad can see my facial expressions properly.  So far my facial expressions have been mostly frowns but sometimes when I have wind it looks as though I'm smiling and everyone gets really excited... grown ups can be so daft.

My longest stint on prongs has been six hours and I'm doing OK.  I do get tired still and I normally end my session by de-satting down to 20% or less (sorry, I'm assuming everyone has a level of technical understanding now, so if you're new to the blog I apologise!)  The really good news though is that I haven't really needed bagging much at all and I'm recovering from all of my de-sats and Bradys all by myself... with a little help from the nurses of course!

My milk has gone up to 9 mls (!) every hour and I'm managing to keep it all down.  My tummy is still a bit swollen but apparently we only need to worry if it's hard... and it's not, it's all soft and squidgy, so that's good as well.  Even my jaundice appears to be getting better, so as I said, I'm doing well.

Oh, and one other thing, I had my eyes tested this week.  A nice nurse came and put some drops in (which stung a bit!) to make my pupils dilate.  Charlie had told me all about this because he has to have it done when he has his eyes checked.  They looked into my eyes with a big light and everything seemed to be OK but I think I'm having another check next week.

On the day my eyes were being tested they put a sticker on my incubator to remind the nurses that I was having drops.  This sticker joined the one with my name and prisoner number on, the one that says I'm in the I2S2 clinical trial (the iodine one!), the one that says I'm in the Dove clinical trial (I've not mentioned this one before but it involves my poo being taken away for analysis!), and the one that says Mummy brings her own blankets in!  There are more stickers on my incubator than on a middle aged German's Campervan!

Have you noticed how many sentences in this diary start with the phrase 'Dad thought it would be funny'?  Well, guess what?  Dad thought it would be funny to add another sticker and the only one he had was his National Trust Car Park sticker, so I'm now the most totally middle class baby in here!  Thanks Dad!

Heaven!

What else?  Oh yes, I've had some REALLY good Mummy cuddles this week.  It's so much better when I'm not on C-PAP and I can snuggle up really close.  It's funny but I think I'm happiest when I'm not in my incubator.  I just love being close to Mum (and occasionally Dad), listening to them talk to me while they stroke my head and rock me back and forth.  It's heaven!

I'm not sure if this is going to work or not but yesterday I had the hiccoughs for a while and Dad took a little video of me.  It's nothing special, just me in my plastic box having a good hiccoughing session but for those of you reading my blog I thought it would be good chance for you to see me in the flesh as it were.  Sorry if it doesn't work... I'll get on to the IT help desk first thing in the morning!

I suppose you're wondering why this diary entry is called 'Mum and Dad get told off'?  Well, like I said at the start, it's been a strange week, which came to a funny conclusion yesterday when Mummy and Daddy were taken away for a 'chat' with a lady who looked very important.  And you'll never guess what the chat was about... MY BLOG!!  Mummy and Daddy have had an official talking to!

All I'm going to say at this point is what I said right at the very beginning of my blog...  This Diary is for everyone who's been praying for me, for everyone who's been crossing their fingers for me, for everyone who's been worrying about me and my Mummy and Daddy, and Charlie and Millie.  I've tried to make it honest and funny, and I've tried to give you all a sense of what's happening here in Coventry NICU.  I hope that I've managed to communicate how fabulous the staff are that work here and what an incredible job they do, but as in all walks of life, things don't always work perfectly, and part of the joy of writing this has been laughing at the things that have occasionally gone wrong.  I really can't see why anyone would have been upset or offended by anything I've written but if they have been then of course I'm sorry. 

I'm only six weeks old... give me a break!

Lots of love and hugs and kisses!

Poppy Lola

xxx

Bilirubinometers...

OK, before I get started with this blog, it's been brought to my attention that there might be staff from Coventry University Hospital NICU reading this!!  This is not in itself a problem however you should remember that I am only five weeks old and have yet to fully understand the skills of tact and diplomacy which will hopefully come later in life.  For now however, please do not take offence if I highlight one or two comical moments... it's all done with the best of intentions.  Oh, and for the avoidance of doubt, this is me - Poppy Lola - writing this, so if you're planning to sue for defamation there's not much in the way of assets to go for!  Any suggestion that my Dad is involved in the writing of this blog is pure speculation.

Let's begin with the good news... and there's plenty of it!  Since going on to TPN (the total parentatal nutrition stuff that goes into my arm through the long line) I've really been piling on the pounds.  Well, piling on one pound to be precise!  But get this... I now weigh over three pounds! I'm HUGE! It feels so much better to have a bit of flesh on my little frame.  It seems to make everything so much easier.

Look at that 'long line'!
I cried when that came out!

At first, when I went on to TPN, they reduced my milk intake to 3 mils every hour but over the last week it's been steadily increasing until today I topped out at 9.5 mils per hour!  The Doctors were so pleased with me that my long line finally came out of my arm today (after ten days) so now I'm back to just Mummy milk again.  Can I just say that it hurt like billy oh when they took that line out, so much so in fact that I cried!  I've never cried!  I've sort of whimpered every now and then, but today I cried a proper cry... and Mummy was there and guess what?  She cried too!  Daddy wasn't there but I reckon he'd have blubbed as well... he's such a lightweight!

As soon as the line was out the Doctor (who I shall now not name as she's probably reading this!) announced that I was going to have another blood transfusion so I was going to need another cannula putting in!  Brilliant!  I've lost count of the number of blood transfusions I've had now... I think it's five... but the amazing thing is, they're all from the same person.  Don't ask.  I've no idea how it works, but there's someone out there to whom I owe my life.  All they did was trot into a blood donation centre and donate a pint of blood and I've been sucking it up for five weeks.  I wish they knew!  If you give blood, I'm very happy for you to assume that it's yours I'm using.  This should make you feel good about yourself... and you deserve to!

To be honest, I don't really know what's going on with all this jaundice/bilirubin/red blood cell malarkey.  I know that the bilirubin light doesn't work any more because I'm too old... this is the only thing in the world that I'm too old for!  There's been talk of liver drugs and diuretics and transfusions and all sorts of stuff, but I've lost track of what's supposed to be wrong with me and what they're all doing about it, so for now it's another blood transfusion and hope for the best... more titivation!  For what it's worth, I think I just need to shit more.  So I'll be giving that my best shot over the next few days.

Dad was reading the Times at the weekend and there was an article about jaundice in new-born babies.  It was a bit scary so he threw the paper away before Mum could read it (not sure if this was a good tactic!) but before he did he copied this bit (below).  And if you read it, you will see that there's a machine called a 'bilirubinometer' which should be used at 'every opportunity'.  Now I wouldn't know a bilirubinometer if I fell over one.  Never seen one.  Which is a bit odd given that I would be awarded the 'Baby in Most Need of a Bilirubinometer' at the National Jaundice Awards... if they existed... which they don't!

Dad turned up on Bank Holiday Monday - when there was something of a holiday mood on the ward - with the Times under his arm, and demanded to know why I'd not been put on a bilirubinometer!  He sounded dead knowledgeable and important.  Unfortunately no one on the ward had ever heard of a bilirubinometer but like my dad they all thought it was a great word and everyone agreed that the journalist had done a great job of making it up!

Right, that was a bit of a tangent even for me.  Where was I?  Oh yes, I'm gaining weight nicely and I suppose my breathing is beginning to improve too.  I'm now coming off the C-PAP two times a day and just using the nasal prongs.  With these, I'm more or less breathing for myself but there's a little puff of oxygen under pressure on every breath just to encourage me.  Today I managed to do two five hour sessions just on the nasal prongs!  My Dad has been teaching me the importance of humility but sod it... I was brilliant!  I reckon I might be able to leave that C-PAP thing behind completely soon and who knows, maybe even move out of intensive care and into HDU (High Dependency Unit).  I've not mentioned this before because I though it was tempting fate but I'm giving myself two weeks max to get out of here!

Millie came in to see me again with Dad, who put his phone inside my incubator and took Millie's photo from where I was lying.  The result is a Poppy Lola's Eye view of what it looks like from here.  If you look at this photo and concentrate for a minute you can sort of imagine that you're me.  So far, this is more or less all I've seen... well a series of different faces, but you know what I mean.

Mummy and Daddy often talk about the world outside.  I can't wait to visit all the places they talk about when they're here, especially IKEA, Starbucks and that bloody hospital car park (which they talk about a lot!)  The world sounds like such an amazing place!

Vertical - a whole new perspective!

Nearly time to go to sleep again, so to end tonight's blog here's a picture of me from a new angle.  It's not one of my best (again) but I'm proud of it because:

• I'm vertical
• I only have prongs (no C-Pap!)
• You can see my luxuriant head of hair
• You can't see any other wires or tubes
• The Very Hungry Caterpillar crawled into shot

Hopefully, you'll have sensed my optimism today?   I've missed out a few scary moments - you don't need to know all of the details all the time.  On balance I'd say I'm moving in the right direction and I'm still thinking of my release date on 8th June.  Who knows though, with good behaviour I might be out of here sooner!

Lots of love and hugs!

Poppy Lola xxx

Footnote:  It appears, that the 'bilirubinometer' does in fact exist and has it's own entry in Wikipedia.  Apologies are therefore due to the Times journalist... who probably got his information from Wikipedia anyway!

Feet First... The sudden arrival of Poppy Lola!

It seems a lifetime ago now (it was I suppose) but so many people have been asking me to tell the story of how I arrived that I thought I'd throw in an extra blog just to complete the picture...

It was 1st March.  I remember the date because it was the day after 29th February and apparently they don't come round too often.  I was tucked up in Mummy's womb listening to Daddy trying to get Mummy to propose... apparently it's OK for the girls to ask once every four years.  Mum stuck to her guns though and refused to pop the question so I resigned myself to the fact that I'd be born out of wedlock.  I had no idea that it would be so soon though.

Poor Charlie had something call Chicken Pox which had kept him off school so mum had been off work for a few days taking care of him.  He was just coming to the end of it so wasn't in too bad shape. 

Mummy's friend Katrina came round for a coffee in the morning (and a hot cross bun!). She stayed for an hour or so and then after she left Mummy and Charlie were going to take a walk to the shop.  I knew there was something wrong before Mummy did.  It was like being in a bath and someone pulling out the plug.  Just as Mummy opened the front door she felt a funny, warm sensation down her leg.  I knew where it was coming from.  Mummy tried to remain calm but after a few minutes, with no sign of it stopping, she phoned Warwick hospital for some advice.  They told Mummy to get to the hospital as soon as possible.  I agreed!

But what to do with Charlie?  Mummy phoned her friend Kate who works from home to see if she could come and sit with Charlie.  Kate didn't answer but called back to see who had called her.  As soon as Mummy told her that her waters had broken she was round to the house in a flash.  She banned Mummy from driving herself to the hospital and insisted on taking her.  Luckily, Lynda the cleaner was at the house so Kate drove Mummy to hospital and Lynda stayed a bit longer than usual and doubled up as Charlie's entertainer for an hour.

In the meantime, Mummy had telephoned Daddy and Grandma to let them know what was going on.  Daddy was working at Kuoni head office in Dorking.  He was in a meeting when Mummy phoned him so he ignored her call!  When mummy called straight back he figured there might be something wrong so this time he answered.  Mummy thought she was sounding calm but later feedback suggested otherwise.  Good news though, Daddy was on his way!

Mummy asked Grandma if she could come down from Yorkshire to look after Charlie just in case anything happened.  Grandma's first job was to locate Grandad who was out working on a gardening job somewhere near Selby!

Kate drove me and Mummy to Warwick hospital and went with us to the labour ward.  She was so calm, Mummy was in good hands!  Kate stayed with Mummy for half an hour and then went to get Charlie who then had tea at Thomas' house and had a great afternoon playing with Thomas and his little brother William.

In the meantime, Mummy was given a check over at the hospital and told that everything looked fine.  From my position it was clear that everything wasn't fine and I knew that my time in the cosy womb was nearly up... I just had to find my way out!  Even so, I heard them tell Mummy that her cervix was still closed (I'd soon fix that!) and that she would have to stay in hospital for 48 hours to be monitored.  She also had to have a scan the next day to see to what extent her waters had broken.

None of this was going down well with Mummy - 48 hours in hospital!  What a pain!

Shortly after Mummy had been checked over, Daddy turned up.  He'd gunned it round the M25 and up the M40 (obviously staying well within the national speed limits!)  It was good to hear Daddy's voice and good to know that he'd made it in time.  I knew what was coming next and Mummy was going to need Daddy by her side if my plan worked!

Mummy and Daddy chatted for a bit and came up with a list of names for me, in the event that I was going to turn up early.   Now Mummy and Daddy are not very good on agreeing names.  My poor brother Charlie wasn't named at all until a week after he was born even though on that occasion they had a full nine months to make up their minds!  Anyway, the naming process involved each of them coming up with a name for each letter of the alphabet.  You wouldn't believe some of the names that made the shortlist...

While they were having this conversation I was desperately trying to let them know that time was up.  I was kicking for an exit but apart from Mummy telling Daddy that I felt 'a bit low down', I wasn't getting my message over.  To make matters worse, at this point Mummy sent Daddy off to get her a newspaper and some magazines to keep her occupied during her stay in hospital.  It suddenly looked as though I was going to have make my move without Dad around!

There's no nice way of saying this, so here goes.... Whilst Daddy was away buying newspapers, Mummy went to the toilet.  It was at this point that my hard work began to pay off and she sensed that not everything was quite as it should be.  Let's just say Mummy had a bit of a rummage and felt something strange.  Little did she know at that point but I'd finally made a break through.  Literally.  The 'strange something' she could feel was my left foot!  And now that I was through I wasn't planning on hanging around!

Mummy got back to her bed and rang for a nurse.  She told the nurse that she thought I might be coming out but the nurse took a quick look and couldn't see anything.  At this point Daddy turned back up just as Mummy was telling the nurse to have a closer look.  Daddy said later that the moment the nurse saw my foot, her face changed to panic in an instant and she nearly knocked him over trying to get to the big red button at the top of the bed!  Finally I'd managed to get my point across... I was coming out and nothing was going to stop me!

In a flash Mummy was swarmed all over by nurses, doctors and anyone else who could get in on the act.  Mummy was wheeled into a delivery room.  I wasn't wasting this time... between the button being pushed and arriving in the delivery room I'd managed to wiggle my right foot out and anyone who cared to take a look (which my dad did) could see my knees beginning to appear!

Daddy counted a total of 16 staff in the room at this point and realised that we were dealing with some serious shit.  Mummy was also in a bit of a flap now.  Surely her baby wasn't arriving yet?  She wouldn't be cooked enough!  Mummy was scared and Daddy was heading in the scared direction.

One of the nurses rigged Mummy up to a monitor and they found my heartbeat. This made Mummy feel a little bit better but she was still very nervous.  Daddy was relatively calm and telling Mummy not to worry.

Mummy wasn't having any contractions or anything, it was all a bit weird.  The doctors explained that they were going to deliver me right away (or at least as soon as the Senior Consultant and Head Midwife arrived).   An incubator was brought into the delivery room along with enough medical kit to open a small field hospital.  A nice Doctor was explaining to Mummy and Daddy that when I came out I would need a lot of attention and then, worse still I would have to be taken immediately by a special ambulance to another hospital because Warwick wasn't equipped to look after me. 
The doctors didn't know at this point where I would end up, it was a question of which hospital had space for me. 

I was desperate to get out but someone was going to have to grab my legs and pull.  I'd managed to wriggle as far as my waist but I was going to need some help with my head!  At this point the Senior Consultant arrived.  He was about 75 with swept back long grey hair.  He was carrying the Telegraph under one arm and wearing a Cotswold tweed check shirt.  He looked for all the world like he was on his way to a horse auction!

Then another man arrived in the room.  This one was dressed top to toe in tight Lycra cycling gear with a bunch of keys on a bunny rabbit keyring attached to his belt.  Daddy asked him if he was the entertainer... and was ignored!  Without anyone saying another word the cyclist got down to the sharp end, grabbed my legs (which were now turning blue!) and started to pull!  Turns out he was the Senior Midwife!  He'd just cycled home when his bleeper went off so he came straight back!

Mummy was told to push, even though she had no inclination to do so, and after two pushes and a couple of 'aargghs' from Mum (in quite a loud voice by the way!) I was pulled out, popped into a plastic bag, messed about with, connected to tubes and wires, and put in an incubator. 

I was out!  If I had known then what I know now, maybe I would have waited a bit longer but at the time I was just happy to be here.  Poor Mummy was out of action for a bit - she still had a placenta to get rid of - but Daddy came over to see me.  He'd been really good up to this point but he took one look at me and started crying.  I would soon learn that this was to become the standard response to meeting me for the first time!

I was weighed and thankfully it was good news. I was a bit of a porker for my age coming in at just over a kilo. Mum and Dad were told that this would help me in my next hours, days and weeks.

Mum and Dad were then told that I would be moved to Walsgrave hospital in Coventry.  This was good news as it was the closest hospital to them with a neonatal unit. 

And that's where I am!  Mum and Dad were given one last look at me in the middle of my life support unit.  I must have looked so tiny and out of place in the middle of all that machinery!  I didn't like saying goodbye to them.  I sort of knew even then that the next few weeks were going to be tough and I wanted them close!

Mum had a cry when she said goodbye and I heard Dad say that it would help if they sent me off with a name.  'Poppy' said Mum without hesitation.  'Lola' said Dad.

'Popy Lola' they both said to the Doctors, and so my name was written on the card and attached to the incubator.

Poppy Lola - 1st March 2012

Growing fast... but wearing a vest!

OK, I know it's been a few days again and I apologise, but listen up... whilst you've been away I've been growing (and growing!) and I now weigh 2lb 15oz.  Nearly three pounds!  I'm so happy I can't tell you... I feel like running around this incubator and singing but that's just going to freak out the nurses on night duty.

I've been making really good progress all week.  Turns out the decision to put the long line back in last Friday was a good one.  As soon as my milk feeds were reduced and I started taking my TPN nutrition through the tube, I started to feel so much better!  I've been doing at least a couple of hours every day this week.  Just on the prongs - no C-Pap - and get this... for an hour on Wednesday I was breathing air, just air!  All by myself with no assistance, I was breathing air.  Just like you all do!  Fair enough, I didn't last long and I was pretty pooped at the end of it, but they say that every great journey begins with a single step and it does feel as though I'm finally starting properly on this journey.

Me and Mummy don't like
to say goodbye!

It's been a really good week.  I've not seen much of Dad because he's been working away but Mum's been in every day - for ages - so I really feel as though we've got to know each other this week.  It's hard you know.  All of my instincts as a tiny new born baby are to be with my Mum all day every day, but in here I have to say goodbye to her every afternoon.  I try to make sure now that my breathing is good whenever she leaves... or she just worries.

I've slowly increased my milk back up to 7.5 mil per hour, which is more than I was on before I started having my fat belly problems.  Sorry for being blunt but I'm pooing and weeing much better now too and even my jaundice is not looking too bad.  Too good to be true?  Possibly!  You know what I'm like.  Turn your back for a minute and I'll start playing up.  I did have a minor bagging earlier today but to be fair I was on the prongs and I was tired!

My first outfit... a white bloody builders vest!

We passed another tiny milestone today... they put a little vest on me!  I don't suppose many of you even know what the first thing you ever wore was but I bet you imagine it to be something really cosy and sweet... pink or blue certainly, and maybe with teddy bears or flowers on it.  Well let me tell you I'm never going to forget the first thing I wore... because it was a white builders vest!!  A builders vest!  About as far away from cute and cosy as its possible to get. And I know I'm still very small but look at the picture... this thing swamped me.  I felt like Laurel wearing Hardy's underwear!

This was all part of today's 'titifications' to see if I can maintain and control my own body temperature, so as well as dressing me in a vest they turned the heating off in my incubator!  Honestly, talk about running before you can walk!  I was bloody freezing!  I've been maintained at a steady 36.8 degrees for nearly five weeks, then they pick the day that IT SNOWS (!) to turn the heating off!  As it happens, I think I did alright but I was pleased when they turned it back up again... I could take the vest off!

Step one of our Cheese Production line...

On a completely different subject one of the nurses pointed out to Mummy that she'd broken one of the rules by filling up two baskets in the ICU freezer with Poppy milk - apparently she's only allowed one!  When dad came in on Wednesday night he had to take some of it home and keep it in the freezer until it's needed.  When he got home and opened the door of the freezer he couldn't believe his eyes!  It's full to busting with Poppy milk!  I'm very proud of my Mummy - I already knew she had many talents but now I can add 'dairy production' to the list.  I'm never going to get through all of that!  Dad thinks we should go into cheese production but I think it's going to be a very specialist market.

Almost time for a sleep now but I've just remembered that I haven't yet told you all the story of my arrival.  It's a good old yarn so I'll write a separate blog to share the whole thing with you.

In the meantime, Happy Easter from Poppy Lola Hufton Jones and thanks for staying with me.

xxx