He wriggled, he burped (a first), he squeaked, and he did a staggeringly smelly poo (formula!)
He also managed to gain 80grams in weight - v. good.
He got cuddled, and made Mummy happy. He looked v. cute. He's still on for a transfer to St Thomas' when they have a bed - not yet.
More pics soon, sorry!
Amy x
Monday, 28 February 2011
Sunday, 27 February 2011
Sunday - no drama
Not much to say really - I slept through most of the day.
I had a brief cuddle with Mum after tea. She seemed a bit out of sorts, but every now and then the whole "am I sick or not" thing seems to catch up with her.
I do my best to keep her calm by being gorgeous! I managed not to brady (much) but dropped my sats a few times. [For my parents non-medical friends - that means heart = good, breathing = no better]
I gained 2 whole grams overnight so I now weigh 1.3kgs and I'm now 37cm from end to end - so I'm turning into a grown-up as fast as I can(!)
Dad gently reminds me I wasn't even due for another 8 weeks - so I need to relax and grow.
Love to all,
Arthur x
Even super-sprogs need to sleep |
Note the teeny thumbs up. |
I gained 2 whole grams overnight so I now weigh 1.3kgs and I'm now 37cm from end to end - so I'm turning into a grown-up as fast as I can(!)
Plenty of room for growth! |
Just chillin' |
Arthur x
Saturday, 26 February 2011
Hello all,
I had a restful day and managed to get all my chores done:
The observant will have noted the absence of bowel functions. Fear not. these were so impressive overnight, they led the nurses to note "massive poo". Not bad eh?
Mum and Dad decided to leave me in my little indubator all day so I can get my strength back. That said I managed to gain a little more weight so I am now just 2g under 1.3kgs, a couple of oz under 3lbs.
And I've just gained a new neighbour - so we'll have a chat overnight and compare notes!
Love to all,
Arthur x
I had a restful day and managed to get all my chores done:
- Breathing
- Sleeping
- Yawning
- Wriggling
- Looking puzzled
- Practising sucking
- Going cross eyed
- Wriggling again
- And poking myself in the eye
A little yawn |
Mum and Dad decided to leave me in my little indubator all day so I can get my strength back. That said I managed to gain a little more weight so I am now just 2g under 1.3kgs, a couple of oz under 3lbs.
And I've just gained a new neighbour - so we'll have a chat overnight and compare notes!
Still got it! |
Arthur x
Friday, 25 February 2011
The worried well
Lesson of the day: don't try and show off your baby to other parents. He will see through such attempts to appear perfect parents and drop his heart rate to 30bpm - not good in a grown up and very close to lethal in a tiny spoglet. Vigerous rubbing later and all was well for Arthur as his pulse was now 160bpm - as was his parents. A great pity as he'd looked incredibly cute just before that - even if he did go rather cross-eyed.
Not much progress today but not much slipping back either. Essentially - 'stable', the word we're learning to love.
Best wishes to all (now in 22 countries!)
Simon, Amy and sproglet
A little cuddle |
Essentially Arthur is a bit knackered for some reason. No evidence of infection but a marginal loss of weight today and he is visibly breathing quite hard. He got better when reassembled in the microsprog position. That seems to be his favourite pose, so we left him like that.
And a teeny massage from Mum |
Simon, Amy and sproglet
Thursday, 24 February 2011
Ooops but not in a bad way!
No one spotted my deliberate mistake…
I’m actually a mere 31 weeks and 1 day old not 32 weeks. Mum is trying to make me old before my time.
Another good day where I gained another 42g making my current weight a magnificent 1.29kg (2lbs 14oz). I had my Vapotherm adjusted to help my breathing and my oxygen requirement has gone down and I’m more settled. Another long cuddle with mum and the most enormous stinky poo that mum had to clean up. The nurses say it’s because I’m on formula. Mum thinks this is another reason to make as much milk as she can. Poo-eee!
Tried a bit of sucking again today and found my thumb. Not as tasty as milk but quite comforting. I’ve had a bit of a wiggle and look around too. I also managed to sneakily remove my nasal cannulae which proved I still need oxygen as my sats went right down for a few seconds before Mum realized what the problem was. Sorry Mum.
All in all a good day.
xxx
Wednesday, 23 February 2011
Another birthday for me!
32 weeks old today!
It was my 1 month since my bid for freedom yesterday and I had my 32 weeks’ old party today. Any excuse for a celebration! One of my other friends had her ‘due date’ birthday yesterday so she was officially ‘0’. M+D and her M+D had cake to celebrate. Mum said it was yummy and I’m hoping it passed into her milk for me to try too.
I’ve got new neighbours on HDU. Most of them are term babies and look enormous. They also make a lot of noise which makes me look peaceful and well behaved in comparison. I’m letting mum believe this for now. Just wait ‘til I get home. Then, in the words of Russell Crowe in Gladiator, I’ll ‘unleash hell!’. Hee hee.
I’m doing well today. Gaining weight to a mighty 1.24kg, breathing OK with pressures of 3.5 down from 4 without getting too tired and I had a lovely cuddle with Mum for nearly 90 minutes before getting a bit pooped and needing to go back into my incubator. Mum sang to me whilst I napped in her arms. Once back in my pad, she gave me a manicure using my very own nail file with teddy bears on it. I’d had to wear mittens before she did this and she said I looked like a boxer.
Keeping my guard up |
Mum says there is a new room on the unit especially for all the Mums to use for breast milk expression. She says this is a good thing as it means they can express in peace and the Dads can also relax without worrying about where to look! There a re lots of posters in it about how important breast feeding is for both Mum and baby. I think most of the mothers on the Unit know this already but they have to put something on the walls I suppose.
I would like to thank M+D’s friends and family again for their ongoing support, food and gifts. I know my early arrival has been and continues to be a real challenge for them and that they would be struggling without the help they have received from so many people.
Cute ear not squashed by a hat anymore |
One quick question before I go...
Do you think there any patients on the Marie Celeste ward at Chelsea and Westminster?
Bye for now....
Arthur xx
Tuesday, 22 February 2011
1 month old today!!!!....!
SUPER cute! |
Speaking of Dad - he has come to sit with me today but I'm ignoring him!
Go away! |
He is reading some big important document on his computer. I know this because I just hear the tapping of the keys and the swearing. Mummy says I'm not to listen to the swearing.
After yesterday's excitement, the doctors have agreed to let me rest today. So no changes to the machines are planned. They don't have the special 'Vapotherm' machine at St Thomas' but they're not planning to move me just yet. Dad asked how much the special machine was - £4800. Which he tells me is over twice as much as the car they bought to take me home. He says I can just stick my head out of the car window, 'cos it has the same effect. I think I prefer the machine.
I have Maya again as my nurse and she says my fingernails are getting too long. I don't want to scratch myself or anything. So M&D will have to file them. But here's a question no-one can answer: what would have happened if I hadn't been borne yet? Do my nails only grow after I'm borne, or do they sort themselves out if I'm inside Mum? Baby's aren't borne with long fingernails, are they?
My long nails |
Old, but stable news, I'm still wiggling my left arm purposefully. Both Mum and Dad have occasionally seen me 'posture' with it, which is when I stretch it out in an unusual way, and can indicate that the nerves aren't getting through. But then I go back to using it normally. So no-one knows what this means - "too early to tell... one day at a time..." and all that.
Practising looking |
With my little blue eyes |
Love to all,
Arthur xx
Monday moments...
Hi all,
Just a quick update, sorry it's a bit late. S and I were both at work today (well study for me) so Arthur got a look in at both ends of the day. Fine in the morning but...
During the middle of the day Arthur had his pressure support reduced. Sadly this made him work a bit harder than he wanted. And he didn't cope as well as he might of done. Not the end of the world but rather worse blood gases and I ended up feeling really rubbishy and nervous about leaving him. He got put back on full support, and was still gaining a little weight.
The staff were as lovely as ever and when we rang this evening his gases had significantly improved. Yes, I know it's a bit of a nothing, but I can't tell you how it knots up the stomach.
Love from all three of us,
A, S & little A x
Just a quick update, sorry it's a bit late. S and I were both at work today (well study for me) so Arthur got a look in at both ends of the day. Fine in the morning but...
During the middle of the day Arthur had his pressure support reduced. Sadly this made him work a bit harder than he wanted. And he didn't cope as well as he might of done. Not the end of the world but rather worse blood gases and I ended up feeling really rubbishy and nervous about leaving him. He got put back on full support, and was still gaining a little weight.
The staff were as lovely as ever and when we rang this evening his gases had significantly improved. Yes, I know it's a bit of a nothing, but I can't tell you how it knots up the stomach.
GOOD NIGHT!!!! |
Love from all three of us,
A, S & little A x
Sunday, 20 February 2011
Boing!
Well another happy day for all. I continue to look super-cute. So cute in fact that I completely distracted my Daddy, who forgot to take any photos today.
And my numbers all continue to look good - not as good as me, obviously, but impressive nevertheless. I also managed a stupendously huge poo - which required two people to clean it up and was a magnificently luminous orange. I blame Mum. Speaking of which, they've upped my food again and I'm still gaining weight.
Dad gave me a massage today - with special sterile olive oil. Rather nice actually, even though my feet are very ticklish.
Sorry for the lack of news but short and sweet, just like me.
Arthur xx
And my numbers all continue to look good - not as good as me, obviously, but impressive nevertheless. I also managed a stupendously huge poo - which required two people to clean it up and was a magnificently luminous orange. I blame Mum. Speaking of which, they've upped my food again and I'm still gaining weight.
Dad gave me a massage today - with special sterile olive oil. Rather nice actually, even though my feet are very ticklish.
Sorry for the lack of news but short and sweet, just like me.
Arthur xx
Saturday, 19 February 2011
Best day ever!
At the risk of hyperbole (Dad keeps teaching me these words); I've had a simply fantastic day.
I'm coping fine with my special breathing help. They tried reducing the support a bit but I didn't like it - so they've put it back. I'm tolerating my food better and Mummy's making far more milk now. And, as you know, I'm gaining weight. All good.
And today I was visited by Grandpa P and Nanna I. And I decided to show off a new trick - I'd been saving it up and since it is my 4 week birthday, this seemed like a good time:
I can suck. Now I realise that may not sound like a big deal to some of you especially the ones who always try to get the very last drop of milkshake into the straw, until your mummy takes the whole drink away. And to be honest I'm not really very good at it...
BUT - if you are only 30 weeks old, this is a really big deal. I'm not meant to manage this until I'm fully cooked - say 34 or 36 weeks old. Precocious or what?
What happened is that my nurse (Mia today) noticed I was trying to suck and kept sticking my tongue out - so Dad tried me with a super teeny dummy - and I gave it a good slurping. It didn't taste very nice though.
And I spent two hours out with Dad and then Mum and they did all the usual things of holding me up and making faces at me. And I looked super-cute. I even managed a little smile but they said this was probably wind. One milestone is probably enough! Anyway I'm not exactly drinking from the bottle/boob just yet, one day at a time...
Love to all,
Arthur x
I'm coping fine with my special breathing help. They tried reducing the support a bit but I didn't like it - so they've put it back. I'm tolerating my food better and Mummy's making far more milk now. And, as you know, I'm gaining weight. All good.
Grandpa P, Mum and me! |
I can suck. Now I realise that may not sound like a big deal to some of you especially the ones who always try to get the very last drop of milkshake into the straw, until your mummy takes the whole drink away. And to be honest I'm not really very good at it...
I can smell lunch... |
What happened is that my nurse (Mia today) noticed I was trying to suck and kept sticking my tongue out - so Dad tried me with a super teeny dummy - and I gave it a good slurping. It didn't taste very nice though.
And I spent two hours out with Dad and then Mum and they did all the usual things of holding me up and making faces at me. And I looked super-cute. I even managed a little smile but they said this was probably wind. One milestone is probably enough! Anyway I'm not exactly drinking from the bottle/boob just yet, one day at a time...
Love to all,
Arthur x
Friday, 18 February 2011
I am nearly 4 (weeks old)!
Hello ezzie body,
I'll be 4 weeks old tomorrow, which is a milestone in anyone's book, and a big one for me.
If you look back through this blog you'll see just how far I've come in what is the longest 4 weeks of my life - and certainly feels like the longest four weeks of my parents lives! I started this blog (with my Uncle's help) to keep friends and family up to date without Mum and Dad having to repeat news umpteen times. And it seems that you like it. I've been checked up on over 20,000 times in over 20 countries. It's quite a lot to live up to for one so small. Some days the news is exciting, sometimes sad and sometimes nothing happens at all - except I keep quiet and grow a bit. But that's the way it is when you're ever so teeny.
26 weeks and 3 days since M&D got over excited (they've promised to explain this to me later) and after one of the world's shortest labours, I popped out looking like a skinned guinea pig. And now it's over three weeks since my big head bleed, and M&D sat through a difficult conversation ("we may need you to make difficult decisions about whether his quality of life is good enough") in the room all the parents call the "room of doom". I'm still waiting to find out what this will actually mean long-term. So I'll just have to put up with M&D staring at me to see what wriggles and what doesn't, and then checking when I smile and suckle and so on.
Granny W came to see me today and brought me a lovely new cover to look at.
Oh, and I've put on 50 grams in the last 2 days - and I'm getting more active when I'm awake.
Lots of love
Arthur x
I'll be 4 weeks old tomorrow, which is a milestone in anyone's book, and a big one for me.
Little cuddle with Mum |
If you look back through this blog you'll see just how far I've come in what is the longest 4 weeks of my life - and certainly feels like the longest four weeks of my parents lives! I started this blog (with my Uncle's help) to keep friends and family up to date without Mum and Dad having to repeat news umpteen times. And it seems that you like it. I've been checked up on over 20,000 times in over 20 countries. It's quite a lot to live up to for one so small. Some days the news is exciting, sometimes sad and sometimes nothing happens at all - except I keep quiet and grow a bit. But that's the way it is when you're ever so teeny.
26 weeks and 3 days since M&D got over excited (they've promised to explain this to me later) and after one of the world's shortest labours, I popped out looking like a skinned guinea pig. And now it's over three weeks since my big head bleed, and M&D sat through a difficult conversation ("we may need you to make difficult decisions about whether his quality of life is good enough") in the room all the parents call the "room of doom". I'm still waiting to find out what this will actually mean long-term. So I'll just have to put up with M&D staring at me to see what wriggles and what doesn't, and then checking when I smile and suckle and so on.
Granny W came to see me today and brought me a lovely new cover to look at.
Granny, Mummy and me! |
To remind me that Mum comes from the Peak District! |
Lots of love
Arthur x
Thursday, 17 February 2011
Scary day - not for me!
Scary day today but not for me!
I’m just fine on my special ‘Vapotherm’ breathing kit. I had a little sit out today on Dad though I got tired after an hour and needed to go back into my little plastic hutch to rest. The vapotherm kit means I’m not suitable for SCBU (special care baby unit – the next level down), so that means I’m staying here for the time being. My bloods and blood gases are Ok and I even managed to put on 30 grams.
Good Karma! |
The scary day was for my Granddad E. He came to see me with Granny E but I am SO small and the bleepy noises are so constant that I think I may have freaked him out a bit.
Sorry about that – I didn’t mean to be so teeny. I was just impatient to meet everybody. It was lovely to see more of my family and to see where the features come from. Apparently the rest of my gene pool are coming over the next couple of days. Should be fun to see what they all look like – though Mum tells me I don’t get to choose the bits I want.
This afternoon they turned all the lights down – as usual – and Dad decided to get all clever with his camera. All I had to do was wave my arms about – and I’m very good at that!
Love to all,
Arthur x
Arthur x
Wednesday, 16 February 2011
Not good.
B3CD3
That Neonatal ICU code for Bradycardia (slow heart rate) level 3 - requiring vigorous stimulation, Cyanosis (where the baby goes blue) and Desaturation (where the oxygen levels drop) level3 - requiring vigorous stimulation.
Arthur had a run of B3CD3 lasting about 10mins in all. He became floppy and unresponsive to any stimulation. The nurses were excellent and doctors arrived after what felt like an eternity - but was probably no longer than 20 mins. He is a bit better now and looking pink and cross again but both Amy and I feel that he's not right. Hard to tell what is parental intuition and what is medical paranoia.
He's getting a septic screen and a chest x-ray as they suspect an infection.
As I type he is having a cannula placed, a drip in a vein. He has had daily blood tests and over a dozen cannulae so his veins are mostly clotted and useless. This makes putting in new cannulae very difficult, both to do and to watch.
He was due to be transfered to St Thomas' at 2.30 this afternoon but this got cancelled with 40mins notice. Entirely understandable but left Amy's nerves in a bit of a mess. He is now scheduled to be transfered first thing tomorrow. But that was before he had this episode.
Well he'd had many steps forward in the last few days so was probably overdue a setback. Still, not fun when it happens.
Amy's come back saying he's looking a bit brighter - and cross about his antibiotics going in which is a good sign. Though his breathing pattern is laboured. Hopefully, if this is sepsis then we've caught it early. And the transfer's off for the time being.
I do hope his nerves are holding up better than his parents!
Best wishes to all, Simon (and Amy and teeny Arthur)
10.15pm update
We've just been back in to see him, and he's doing much better. He's been put on 'vapotherm' a breathing aid which works like mild-CPAP whilst being very easy for him and looking like regular nasal-cannulae. This seems to be giving him the support he needs.
We're now home for much needed sleep. Thank you for your good wishes.
S, A & A
That Neonatal ICU code for Bradycardia (slow heart rate) level 3 - requiring vigorous stimulation, Cyanosis (where the baby goes blue) and Desaturation (where the oxygen levels drop) level3 - requiring vigorous stimulation.
Arthur had a run of B3CD3 lasting about 10mins in all. He became floppy and unresponsive to any stimulation. The nurses were excellent and doctors arrived after what felt like an eternity - but was probably no longer than 20 mins. He is a bit better now and looking pink and cross again but both Amy and I feel that he's not right. Hard to tell what is parental intuition and what is medical paranoia.
He's getting a septic screen and a chest x-ray as they suspect an infection.
As I type he is having a cannula placed, a drip in a vein. He has had daily blood tests and over a dozen cannulae so his veins are mostly clotted and useless. This makes putting in new cannulae very difficult, both to do and to watch.
He was due to be transfered to St Thomas' at 2.30 this afternoon but this got cancelled with 40mins notice. Entirely understandable but left Amy's nerves in a bit of a mess. He is now scheduled to be transfered first thing tomorrow. But that was before he had this episode.
Well he'd had many steps forward in the last few days so was probably overdue a setback. Still, not fun when it happens.
Amy's come back saying he's looking a bit brighter - and cross about his antibiotics going in which is a good sign. Though his breathing pattern is laboured. Hopefully, if this is sepsis then we've caught it early. And the transfer's off for the time being.
I do hope his nerves are holding up better than his parents!
Best wishes to all, Simon (and Amy and teeny Arthur)
10.15pm update
We've just been back in to see him, and he's doing much better. He's been put on 'vapotherm' a breathing aid which works like mild-CPAP whilst being very easy for him and looking like regular nasal-cannulae. This seems to be giving him the support he needs.
We're now home for much needed sleep. Thank you for your good wishes.
S, A & A
V. quick update
All's well today. I spent the WHOLE day breathing for myself with just a sniff of oxygen. I was very proud of myself - though not as proud as Dad!!
I'm still dropping my heart rate if I think I'm being ignored, but progress is good.
I may be moving to my new Riverside crib (St Thomas' Hospital, opposite Big Ben!) - But I'll keep you all posted
Love Arthur xx
I'm still dropping my heart rate if I think I'm being ignored, but progress is good.
I may be moving to my new Riverside crib (St Thomas' Hospital, opposite Big Ben!) - But I'll keep you all posted
Love Arthur xx
Monday, 14 February 2011
Arthur 'Bridget' Eccles' Diary
Monday 14th Feb 2011
Age: 29weeks and 5days or 3weeks and 2days depending on who's asking
Weight: 1.04kg (gained: 0.002kg)
Ventilatory requirements: Nasal cannulae NOT CPAP!!!
Songs sung: 10 green bottles, Twinkle Twinkle Little Star
Clothing: Slightly baggy body suit
Postcode: SW10
A big, if not HUGE, day for me. I know it’s Valentine’s day, but this way more impressive than the chocolates and fizz mum got for dad, or the beautiful photo album dad got mum….
After my false start on nasal cannulae over the weekend, the nurses and doctors persevered and tried me again this morning and as I get mum to type (17:30), I have been on nasal ventilation since 09:00 AND I’ve had a cuddle with mum without going blue and without making my mum’s blood pressure go up too much. Yippee!
I’m hatless and I’ve gained a little body suit! Mum saw me this morning after her revision session in the Radiology department and went shopping. She got me some little hats and mittens along with another body suit suitable for ‘early baby up to 5lb (2.3kg)’. I guess I’ll grow into it.
You lookin' at me? |
The doctors are so pleased with my progress that they’re trying to get rid of me but there’s no bed at St. Thomas’s at the moment so I get to stay in my West London penthouse with views over the rooflines of Chelsea. Mum says I might get a river view if I go to SE1 so I’m sure I’ll cope with the transfer. I do like the nurses and doctors here though and M+D have got to know and trust them too which is important to them.
The Cardiologists didn’t come round today so we still don’t know if the ibuprofen worked on my PDA but given my breathing is so good and I’m feeding OK, they’d probably leave it alone anyway. Phew.
Little clothes for a little person |
M+D’s kitchen is being fitted today so it’ll be ready for my arrival. A few issues with sinks and fitting it all in but dad, mum and the builder all had words with the company and it all got sorted. It sounds like Dad is very good at sorting things.
Thank you for even more blankets and cuddly toys! It won’t be long before I can have them with me, especially the ones that are smaller than me! And Mum wanted me to thank Bob and Jackie for the flowers. They brighten up their front room a treat.
Bye for now,
Arthur xxx
Sunday, 13 February 2011
Growing strong and stroppy
Hello to all,
Before we begin, let me just say that if I choose to express a certain exasperation with any aspect of my day, it is out of love and a particular blend of pedantry and perfectionism.
So it is wholly unreasonable to expect me to saturate between 84% and 93% simply because that is how you have set my monitoring devices. I will saturate between 75% and 98% and therefore you will have to constantly reset my alarms. This is what you are for. I will make myself into a little ball and sleep - thank you.
It is entirely fair for me to decide that today is not a day to try out nasal oxygen. I need CPAP support today. You should also understand that I don't like CPAP. The prongs squash my nose. So I will try to take it off. I fail to understand why you don't let me. And while I'm discussing self determination - why do my parents keep stopping me from removing my feeding tube? I am now over three weeks old. I should be able to determine my own care by now. Please see this little clip to show the way I am tormented.
I have now learned to do push ups and to look around. Just as soon as I can get my lungs' strength up - I shall remove these horrid tubes once and for all.
[Parents note - it may look like we keep lifting Arthur, but to our and the nurses surprise, he lifts his head and body off you chest during 'kangaroo care' and will really fight back if he's not happy. A quick change of nappy and then position and he stayed settled for two hours. Still dropping his O2 sats from time to time, to make sure we don't ignore him.]
Love to all,
Arthur - slightly stroppy crosspatch - Eccles
x
Before we begin, let me just say that if I choose to express a certain exasperation with any aspect of my day, it is out of love and a particular blend of pedantry and perfectionism.
So it is wholly unreasonable to expect me to saturate between 84% and 93% simply because that is how you have set my monitoring devices. I will saturate between 75% and 98% and therefore you will have to constantly reset my alarms. This is what you are for. I will make myself into a little ball and sleep - thank you.
Micro-sprog |
It is entirely fair for me to decide that today is not a day to try out nasal oxygen. I need CPAP support today. You should also understand that I don't like CPAP. The prongs squash my nose. So I will try to take it off. I fail to understand why you don't let me. And while I'm discussing self determination - why do my parents keep stopping me from removing my feeding tube? I am now over three weeks old. I should be able to determine my own care by now. Please see this little clip to show the way I am tormented.
I have now learned to do push ups and to look around. Just as soon as I can get my lungs' strength up - I shall remove these horrid tubes once and for all.
[Parents note - it may look like we keep lifting Arthur, but to our and the nurses surprise, he lifts his head and body off you chest during 'kangaroo care' and will really fight back if he's not happy. A quick change of nappy and then position and he stayed settled for two hours. Still dropping his O2 sats from time to time, to make sure we don't ignore him.]
"I know what I'm doing" |
Arthur - slightly stroppy crosspatch - Eccles
x
Saturday, 12 February 2011
PANIC.... and relax
So Mum and Dad waited until lunchtime before coming to see me today. And this is what they saw:
My lovely nurses had decided to give me some time breathing for myself. And everyone got to see my hair and ears. Mum and Dad were very excited and Dad decided to tuck me into his shirt:
But it's quite hard for me to do all my own breathing and I'd been off my support for over 2 hours. So I was struggling to keep my oxygen levels up. Dad tried and my nurses tried but it wasn't working and I dropped my sats (oxygen saturation percentage) to 50%.
So they agreed to put me back onto CPAP (the pressure support to help my breathing). This turned out to be trickier than expected. My sats dropped to 28% and my pulse rate to 40 (my normal is 170 beats per minute. They resuscitate at 70). I turned deep blue. Apparently this is not good.
Fiona, my nurse for today, managed to get me back on CPAP, rub me enough to get my heart beating faster, force me to breath enough, keep my parents calm and then rest me against Dad again - all in about 5 minutes. Everyone seemed very impressed. People said something about needing a change of underwear, but that's OK, I get mine changed every 4 hours.
Then I settled on Dad, so he could feed me and cuddle me.
He tried reading his magazine but I managed to stop him by dropping my heart rate so he had to squeeze me or by grabbing his chest hair - that kept him awake!
After two whole hours on Daddy, I was swapped over and spent over an hour having a cuddle from Mum:
I definitely prefer 'skin to skin' without the hairs - they taste funny.
And I have a new cover on for this week, to mark my third (week) birthday. It has lots of sheep on it. So many thanks to Jaqueline and Jules. I am also managing to grow and am now 36cms long - thats huge, I'm sure you'll agree.
Lots of love
Arthur x
Breathing for myself |
Snuggled - the calm before the storm |
So they agreed to put me back onto CPAP (the pressure support to help my breathing). This turned out to be trickier than expected. My sats dropped to 28% and my pulse rate to 40 (my normal is 170 beats per minute. They resuscitate at 70). I turned deep blue. Apparently this is not good.
Fiona, my nurse for today, managed to get me back on CPAP, rub me enough to get my heart beating faster, force me to breath enough, keep my parents calm and then rest me against Dad again - all in about 5 minutes. Everyone seemed very impressed. People said something about needing a change of underwear, but that's OK, I get mine changed every 4 hours.
Then I settled on Dad, so he could feed me and cuddle me.
Multi-tasking Dad |
He tried reading his magazine but I managed to stop him by dropping my heart rate so he had to squeeze me or by grabbing his chest hair - that kept him awake!
Grab then pull! |
Very proud Mum. |
And I have a new cover on for this week, to mark my third (week) birthday. It has lots of sheep on it. So many thanks to Jaqueline and Jules. I am also managing to grow and am now 36cms long - thats huge, I'm sure you'll agree.
Lots of love
Arthur x
Friday, 11 February 2011
TGI Friday!
What a yummy day – long cuddles with Mummy and I managed to settle; over 2½ hours in total.
And I learnt all the words to the Teddy bears picnic. Mummy tells me it’s the clean version, whatever that means.
And I’m learning to suck – and trying it out on my fingers.
And I’m doing so well on my feeds I’m up to 7 mls an hour which is the most they can give me.
And so they say they’ll be able to stop my TPN (food via the veins).
And that means they can take out my long line – the big venous drip running all the way from my foot to my heart. How far is it from your feet to your heart? It’s 22cm in my case.
And that will make me very happy.
Me, happy! |
I’m definitely learning where different bits of me are – so I’ll try and biff you if you tickle me on my tummy. Daddy thinks this is very funny and so tickles me. I have to grab his finger and squeeze with all my might. That seems to stop him.
Is this the cutest elbow ever? |
I don’t think I’ve shown you a proper picture of my new cover so here it is:
Thank you, Elena |
Following yesterday’s scan, Daddy had a long chat with a friend who’s another neonatologist – he confirmed that all possibilities are still on the table, and yes I’m likely to be a little lop-sided. My being able to wriggle my arms and legs so well doesn’t make this less likely – it’s too early to know. But it does mean my brain is bright enough to send good messages to my limbs. You’ll have to cross your fingers for me, as I haven’t got the hang of it yet.
Tomorrow is Saturday so that means I’ll be THREE weeks old. And I now weigh 1.042kgs so I’m almost a grown up. Mummy bought me a pressie to celebrate:
Apparently I'll grow into it. |
Have a good weekend everybody,
Love Arthur x
Thursday, 10 February 2011
Ain't misbehaving...much...
Welcome to my 100 followers and even more friends.
I’m still on HDU and still being a bit naughty and unsettled. My poor nurse has been backwards and forwards to my incubator as I cannot decide which oxygen level I want. Mum thought it was her fault as I started playing up when she got to the ward this morning but my nurse thinks it is more likely to be related to a full nappy as I am being very productive at the moment. I’m now on nappy changes every 4 hours not 6. I’ve also learnt a new trick to lower my heart rate which sets off another set of alarms. This seems to get Mum quite stressed so I’ll try hard not to do it too often.
I’m currently having a small blood transfusion as my haemoglobin is a bit low and because I’m on CPAP, the hospital’s protocol says I need it so I can’t come out for cuddle because I need to stay nice and still. Mum is a bit disappointed but she’s been talking to me so I know she’s there. Otherwise my blood tests are ok and the ibuprofen hasn’t affected my kidneys which is good.
I’ve finished my ibuprofen and will have another heart scan next Monday to see if it’s worked. The registrar could still hear a murmur when he listened to my heart this morning so I may still need this tiny operation but we’ll see after the weekend. The registrar also did another head scan whilst Mum was there. The blood on the left side has almost completely gone and the blood on the right is ‘organising’ and getting darker. No evidence of periventricular leukomalacia (PVL). This is cystic change within the brain itself that can cause disabilities. Lots more scans to come over the next few weeks, months if not years, to give the doctors an idea of structural appearances and as I get older they’ll have an idea of functional activities.
Mum went shopping for me today to get special clothes. She said she had to get me ‘petit petit nouveau’ which can fit babies weighing up to 2.5kg or 5 pounds. I currently weigh 1kg (1.024kg to be precise) so I’ve got room to grow into them. Dad says that I’m getting more and more like him: first I get daily caffeine and now I’m getting special clothes and blankets made just for me.
Nothing more to report as yet so will sign off for now.
Love,
Arthur xxx
Wednesday, 9 February 2011
Errrrgh! Frustrations, frustrations....
I promise I'm trying to grow |
After lunch Mum wanted to give me a hug but I simply couldn't get comfortable - wriggling and dropping my saturations. They want me to run between 84% and 93%. Too little and too much are both bad for me. Well while I was resting on Mum I stayed at about 74% and dropped down to below 60% quite often. The nurses had to keep adjusting my oxygen levels. Poor mum got more and more anxious - I picked up on this and got more tetchy. Horrid for everyone.
Dad managed to get me settled but had to cheat and turn the oygen reading round to him so the tension levels could drop all round. We both fell asleep for a little! But then it all went wrong again. Dad got so frustrated he had to leave - really not like him.
I'm beginning to look a bit like Winston Churchill but apparently this normal for babies!
And a big hello to my new friends from Mumsnet.
Love to all, Arthur x
One o'clock and all's well
Just a mini-up date (well I'm only a little man)
On HDU and stable - good.
Oxygen requirements are low - good.
CPAP pressure requirements are low - good.
Tolerating increasing feeds - good.
My tummy is soft - no signs of infection - good.
Still have my PDA but due for my third dose of Ibuprofen to try and close it. Worst case is I will require a small op to close it.
No neurological change (haven't I learnt some long words) - all good but too early to be reassuring.
Still wriggling and fighting like mad when Dad changed my nappy and managed to pee 3" straight up in the air when he turned his back for a second!
We may try for some cute photos later if I can distract Daddy from his DH paperwork (shouldn't be too hard!)
Love Arthur x
On HDU and stable - good.
Oxygen requirements are low - good.
CPAP pressure requirements are low - good.
Tolerating increasing feeds - good.
My tummy is soft - no signs of infection - good.
Still have my PDA but due for my third dose of Ibuprofen to try and close it. Worst case is I will require a small op to close it.
No neurological change (haven't I learnt some long words) - all good but too early to be reassuring.
Still wriggling and fighting like mad when Dad changed my nappy and managed to pee 3" straight up in the air when he turned his back for a second!
We may try for some cute photos later if I can distract Daddy from his DH paperwork (shouldn't be too hard!)
Love Arthur x
Tuesday, 8 February 2011
"I want to break free..."
Ladies and Gentlemen,
I now have a new address. I’ve been moved to the High Dependency Unit at Chelsea. This is a big deal even though it’s only just down the corridor as it means I don’t need such close monitoring. HDU is much quieter and there are less ‘inmates’. There are about 2 babies for each nurse so I still can’t away with much without someone noticing. Mum was quite worried about the move in case something happened during the long trip of about 4 metres but I’ve settled in nicely and have a good view out of the window with no builders outside so Mum can express her milk next to me without flashing them!
My Radley inspired incubator cover is now on. It’s got my initials on it and lots of scottie dogs. I haven’t counted them yet as I haven’t learnt how to do that but it’s very colourful and stylish.
Dad came this afternoon for the big move and took more photos. Sometimes I wish he’d give it a rest and I put on a really cross face but that just seems to encourage him. Humph!
Just a bit tetchy |
But my lovely Mum and nurses got me all settled down again.
It's much quieter here. I hope I keep well enough to stay. One of my little friends hasn't been so lucky so the mood has been very sombre here. One day at a time, just one day at a time.
Love Arthur x
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