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