would anyone be surprised if I said we’re *still* here?

19/10/2009·public·171 visits · notify me ?

we are. we have not moved anywhere at all yet. 12 days of being packed and ready to drop everything and go. Suppose I can’t really get much sympathy from a load of pregnant women approaching their due dates though haha!!! Well at least one aspect of the last bit of my pregnancy I’m still getting to experience, fabulous.I did ask the nurses what happens next, what happens if a cot doesn’t become available but they were suitably vague, said they’d just keep phoning every day. I’m trying not to worry about it, they seem confident that a cot will appear, but I’m starting to doubt it a little. One must come available at some point I suppose, bah. Trying not to worry about how the wait will affect Ivy, they don’t want to start feeds until her belly has been sorted really, and my poor little chick seems so hungry. Bless her poor poppet! But with each passing day that she’s not being treated, her going home date is going back, yeah I know we don’t have a ‘going home’ date as such, but it’s still going to delay things. So much for aiming for her due date, it seems really unlikely we’ll be home by the 28th its less than 10 days! Boo.

Ivy is still in ICU, though she has ditched her antibiotics now! Hooray! infection 2 cleared, well done poppet! Not really much to say further than that.

Just this interminable bloody waiting! Starting to send me bonkers I think.

pixiejo · you!
Updated 19/10/2009

Aw bless you Karen!!!

Yeah I must admit to being a teency bit jealous of all those lovely ladies getting to take their babies home when 9 and a half weeks in I still have to ask permission to get a cuddle and don’t get to every day 😦 Aaah our times will come!!! Waiting sucks!

Jo x

pixiejo · you!
Updated 19/10/2009

So much waiting with these babies!!! Hope the next couple of weeks goes quickly for you Antonella!

Until the babies and the cuddles come, chocolate, lots and lots of chocolate!! No point dieting before Xmas after all!! 🙂

Jo x

pixiejo · you!
Updated 21 hours ago

Heard today they’re going to start giving Ivy 0.5mil of milk every 6 hours; more of a tease than food really, bless her! But it’s a start at least 🙂

Antonella, there are crisps if you prefer! 😉 hee!

Jo, you’re right it is a long time, haven’t been able to do a proper shop for a fortnight just in case – amazing how buying little bits to last a couple of days costs so much more! I was thinking of just going to Bristol and plonking my big, fat, post pregnancy bottom down the moment anyone moves an inch to bagsy the space for Ivy. But I know that really all the cots are being taken by babies with more urgent problems and I’d feel awful for them if I did that! So indeed fingers crossed for a quick recovery for some gorgeous little mite to go home with their mum!!! 😀

Hope you’re all well lovelies xxxx

Jo x

2 months old!

15/10/2009·public·194 visits · notify me ?

Ivy is 2 whole months old today! She’s been weighed and has reached a grand 2lb 13! So officially more than violet did when she was born, which is sort of a milestone in itself 🙂 and considering she’s been nil by mouth for a week, and while back on tpn no fats with it cos of all the antibiotics and blood products! Her infection markers have come all the way down to 7 so nearly clear of this bug and all ready for her travels. There was briefly a cot yesterday, but it got filled quickly. So they’re still phoning every few hours. I suppose i’ve spent most of the year expecting to spend october poised and ready to get to hospital quickly, with bags packed and babysitters on stand-by. So I shouldn’t complain too much, we’ve been assured they wont keep us in bristol long as the demand for cots is so high. Fingers crossed! Anyway I hope all you lovely ladies are keeping well! Thanks for all your lovely comments to my previous journals, wish I had more time to reply to you all, y’all rock! Xxx

originally posted on babycentre community board; x-posted to www.handprints.org.uk/pixiejos-previous-blogs.html

See previous titles

14/10/2009·public·133 visits · notify me ?

Yup we’re still in sunny Cornwall, for the time being.So thought I’d pop up here and say hi!

After all I was saying about giving blood the other day; I had blood taken yesterday by one of the neonatal drs, they did it with a butterfly thing instead of the usual vacuum things the midwives use. Sorry that’s less than clear huh? And for the first time ever I came over all wooshy as it was being done! I’ve never fainted or anything when having blood taken before, even after Violet was born when they took my blood every few hours cos of the pre-eclampsia!! Nuts! Maybe it was the watching it go down the tube…who knows!

Things are tootling along here, still not sure what’s happening re: Bristol. Ivy’s infection markers have come down, everything else seems stable, we got to have a cuddle last night too! They’ve had to put another long line in, poor chick, they had such trouble getting one in her arm, and she had cannulas in both legs at the time, so sh’es had to have it through a vein in her scalp. It sounds much worse than it is to be honest! At least in her scalp she can still swing her arms about, which she seems to enjoy, and she can’t pull on it, which has to be uncomfortable. And if the infection passes, which it looks like it is, then she can go back onto milk and it can come out again.

It’s been a tough week, hopefully we’re past the worst now. Glad that today, so far, there’s not been any phone calls. Of course it’s lovely that our families take an interest in it all, bless them. I try and keep them updated by text and, sadly, by facebook *ahem* and naturally if there was any important news I’d phone them all. But they all phone, inevitably all on the same day, and it’s tiring. I feel like I need to adjust everything I say according to how they’re taking it; when I said to my dad’s wife today that we’re still here, she started gushing about how wonderful news that was, hooray how fabulous, etc. It thoroughly confused me, I don’t know if she picked me up wrong, we are still going to Bristol, just not today….. And when I told gran that Ivy had another infection the other day she came rushing over and hovered at me. It’s tough, I don’t want to worry family unnecessarily, but I don’t want them thinking everything is just shiny either! When Violet was in hospital it was easier to let everyone believe everything was dandy, and largely everything was mainly ok, but I feel I need them to be aware of how much more delicate Ivy is. Even if just to stop them asking me when she’s coming home, which I imagine is as annoying as the questions all you pregnant ladies get ‘when is that baby coming?’ ‘haven’t you had that baby yet?’ I remember my mum getting really annoyed and telling people that in fact yes, the baby was here and she was pregnant again already. And offering people photos to save them staring…..Anyway, doesn’t really work for me. Must think of something witty.

Also I don’t want them thinking all is well cos they keep buying Ivy things, and I find it really hard to take. I’m still scared she’s not here to stay, I can’t imagine bringing her home, every time I start enjoying her something knocks us back. I have a few photos about but everything else gets put away, I don’t want to see these reminders everywhere that my baby isnt with me, even when it’s going well really. It’s lovely that they’re excited about having a new addition to the family, but in many ways I’m trying to treat it like I’m still pregnant, but the fact that she’s not home doesn’t have any impact on them, we have to live in it. I wish they’d give us the space to come to them to tell them things rather than phoning demanding all the time, I don’t have the energy for it. And the recurrence of PMT and the witch does not help any!

Wow that all turned out to be much more miserable than I had intended! Sorry! Ark at me all maudlin, when today actually things are going well. Meh. Must tidy the kitchen and phone up to see how my little chick is getting on, hooray! 😀

pixiejo · you!
Updated 14/10/2009

Bless you lovely! I should really only post journals after I’ve visited Ivy, when my sun is shining 😀 ((((big hugs)))) Thanks for your lovely message chick!

There’s also an element of excitement to the not being able to imagine her coming home though, if that makes any sense?! I know her coming home is going to change everything about all of our lives unrecognisably and I just can’t imagine it, but I am looking forward to finding out. 🙂 And yeah in my more maudlin moments like earlier, I can’t imagine her coming home and I don’t want to try and picture it just in case she doesn’t. But I try not to think about it too much, to be honest I couldn’t picture Violet coming home either, and she’s been here for 2 years and now I can’t imagine there ever being a time when she was not here!!

Sometimes it is easier to give people the answer they want to hear when they ask how things are isnt it?! Bless you you’ve not had an easy pregnancy, I’m sure you must be sick to the back teeth of people saying stupid things like ‘oh you’ll be blooming soon’  so I’ll refrain 🙂 Take care lovely xxxx

Jo x

originally posted on babycentre community board; x-posted to www.handprints.org.uk/pixiejos-previous-blogs.html

We’re STILL here.

12/10/2009·public·219 visits · notify me ?

Humpf. There hasn’t been a cot, though in fairness ivy has still been poorly and the consultant didn’t want to transfer her until she’s stable. When I last posted her blood sugar was really high, it then dropped far too low and didn’t recover even after various dextrose top ups, poor chick. Seems to be fine and stable now. It was a urine infection this time, the bacteria bein the most common type to infect premmies apparently so they can narrow down the amount of antibiotics they’re giving her. Still updating for meningitis same as last time, they don’t want to do a lumbar puncture as they’re only just got her clotting sorted, so it’s a just in case at least. She seems perkier and obviously hungry which is good. It took her longer to seem perky last time, so hopefully that is her getting better. Also me and dh have been asked to have blood tests so they can rule stuff out and they wont tell me over the phone what the test is for… Hmmm probably not nearly as exciting as it sounds. Anyway, must get on with cooking tea so we can go visiting. As for bristol, who knows? Wednesday they say, perhaps. Not holding my breath though, question is should I go shopping? Don’t want to buy food that we wont get to eat… Feeling a bit bleh.

pixiejo · you!
Updated 12/10/2009

Ha! Forgot posting from a phone means predictive text! Who knew treating and updating used the same keys? 🙂

Jo x

pixiejo · you!
Updated 12/10/2009

Just back from our evening visit, doesn’t look like we’ll be off anywhere tomorrow either, they want to make sure ivy is more stable so leaving it until wednesday until they start talking to bristol again. So more waiting certainly. I got to have cuddles tonight which was lovely as its been nearly a week since my last cuddle. It would have been lovely but ivy started taking huge breaths and big twitches, not jittering like a fit but twitches. I got to stroke her head while they took blood, it’s truly amazing how quickly they can run the basic tests, less than 10 minutes, all came back clear. Glad the dr was there though, she was explaining the blood tests we have to have. Something to do with enzymes and blood sugar, to further rule out conditions that may be causing ivy’s prolonged jaundice. They can’t use her blood as too much of its not actually hers currently! So not that exciting. Anyway i’m just typing again. Rambling. Starting to get quite depressed, not sad just numb, so in a way doing this from a phone is quite therapeutic. I can only see 3 lines at a time and can’t over think. Just get it out! So, i’m very sorry if i’m boring you all to pieces with my miserable ramblings on! Meh maybe the david attenborough program will take my mind off it a little.

Jo x

originally posted on babycentre community board; x-posted to www.handprints.org.uk/pixiejos-previous-blogs.html

Still here!

11/10/2009·public·190 visits · notify me ?

Ivy seems to have perked right back up,  she was fairly quiet yesterday while I was there until they gave her a blood transfusion, I swear it’d only been going 5 minutes when you could see a marked improvement in here. Oxygen sats when straight up, her heart rate came back up to what I think of as normal (it had been in a normal range, but at the low end of it) and she stared wriggling! And before 10mils of new blood had gone in she was screaming and trying to suck anything that went remotely near her mouth – her hands, tubes, blankets, think she may be hungry!

She had to have a plasma transufusion too as the infection had meant her clotting factors had come right down and the consultant did not want to transfer her while she was anaemic and not clotting properly.

Please remind me to bite the bullet and give some blood when all this is done! Even if I only do it once! She’s had at least 5 red blood cell transfusions, 3 of plasma and 2 of platelets, all in such teeny tiny amounts (biggest was a grand 23 mils yesterday!), but there’s no doubt in my mind she’d not be here were it not for them. And now I feel silly for not having done it before now, having crap veins isn’t the best excuse is it? They can find veins on Ivy and all the other dinky tiny bambinis, I’m sure the people who do it everyday for their job can find mine! Right?!

Meh, anywho, no cots came available yesterday anyway. Nothing was said earlier when I called, guess we’ll see after the ward round today. Today would be a good day to go, all our babysitters are available, traffic would be ok and parking shouldn’t be too much of a nightmare; tomorrow however…..

originally posted on babycentre community board; x-posted to www.handprints.org.uk/pixiejos-previous-blogs.html

and the early morning call said

10/10/2009·public·237 visits · notify me ?

she is grumpy! Hurrah!

Ivy woke at 1 and demanded to know why she had not been fed for 12 hours, she’s been sucking on her dummy clearly hoping that sucking harder will produce milk! (yeah I thought dummies were evil too, amazing how a screaming baby changes your mind no?!) She’s looking a lot pinker this morning, which is fab cos she had gone an awful funny colour by the time I left last night….

And when they did the standard Bristol call at 5am (!?!?!) to check for cot availability there was not a cot, but there may well be a cot later. So still potentially go for lift off; so they must be happier with Ivy than they were yesterday!!! She’s on all the antibiotics she was on last time, and also the antibiotics they use to treat NEC even though they’re fairly sure that’s not causing the problem. Which is good cos frankly NEC sounds nasty. I have learned my lesson about googling things, repeatedly unfortunately, but this is one of the more common nasties and so it’s covered in the premmie book I have.

I’m beginning to wonder whether Ivy has in fact read the premmie book too and is using it as some kind of check list ofthings to do before she leaves hospital…..well so long as she doesn’t try and find herself a twin at this point……

THank you all so much for your lovely comments, I really appreciate it! I am honoured, humbled and flattered you all take the time to read and comment. Bless ya all, you are lovely! yuor babys and bumps are very lucky to have mummmys like you guys xxxxx

originally posted on babycentre community board; x-posted to www.handprints.org.uk/pixiejos-previous-blogs.html

aaaah swearing, lots of swearing!!!!!

9/10/2009·public·208 visits · notify me ?

gah what a super lame day! Yesterday I hovered over the phone and while it rang repeatedly, it wasn’t the hospital once. We’re all packed, all our babysitters are poised and ready, well as ready as this lot will ever get anyway!

I was updated by doctors, they hope it’s just a plug of meconium still; not completely blocking the intestines, but blocking it enough to fill her with gas and make her uncomfortable. So the plan of action would be to do a more specialised enema in the hope of osftening it and removing it. Sorry that’s probably TMI, but still. And obviously if that doesn’t solve it then surgery would be necessary, initially as investigation so we’d have to be in Bristol for that anyway.

Today I got to spend most of the day in the hospital; this morning they said that we would probably be heading for Bristol tomorrow asthey were looking to discharge someone tomorrow morning. But they had raised suspicions of another infection at the ward round and over the course of the day my poor little chick has become rather poorly again and this evening she has been moved back into intensive care. Again. THis morning as well as her distended tum and water retention, they thought they heard a crackly chest, then her blood sugar started to rise, and she started getting cold. By the time the confirmation came through with her CRP getting higher they had already put her nil by mouth and back on antibiotics. They think the infection is the same as last time, and quite probably caused by whatever is making her belly distended so they’re using the same antibiotics as before. Of course I dread that it’s something that we’ve taken in accidentally and given her.

They will still move her even with the infection, if she stays stable overnight, but when I phoned last they had had to give her pain medication as she keeps having braddies; so they’re assuming she’s in pain.so it looks like it’ll all be delayed. definately still goin, just probably not tomorrow.

And there’s no room in the hospital for us as they have quite a few out of counties, so we’d need to find our own place to stay.

I just want to go and get it over with, deal with whatever it brings and move on instead of being in this hideous limbo land waiting for the phone to ring, piosed to drop everything and go. As if merely having a baby in the NNU wasn’t limbo land enough, no longer pregnant – but no baby with you so not really a mum either. Just a ridculously regular visitor to the hospital sitting by a perspex box, hoping.

I’m so scared, and so tired of being scared all the fucking time. It just seems all so fucking unfair. I just hate having to watch her fight and fight always being so scared that this will be one fight too many. I hate leaving every night worried that this will be the last time I see her. I hate not being able to be there for more than a couple of short hours that fly by too quickly, I just wanted it all to be dull and normal and boring, why was boring too much to ask?

So maybe I’ll be able to update tomorrow, maybe we’ll be250 miles away from here

originally posted on babycentre community board; x-posted to www.handprints.org.uk/pixiejos-previous-blogs.html

A very quiet Hooray!

I daren’t go for a huge Hooray in case somehow I celebrate too loud and break it… But for the last 2 days ivy has returned to high dependency! It is so much nicer there, they have a radio, comfy chairs and everything! Just don’t quite believe she’s back there, it’s fab but just don’t quite feel comfortable really celebrating it a second time round. Don’t know if it makes sense really. Hmmm. Maybe it’s having our bubble burst once already or maybe it’s meeting other babies and parents. Ivy’s neighbour when she was in hdu last time had been doing really well, there was talk of the ‘h’ word we all wanna hear. And she’s just been transferred via intensive care to a different bigger hospital, it’ll be the third time she’s been. Just awful to go from planning homecoming to having such a leap backwards. My heart goes out to them 😦 ivy is doing really well though! The thing they measure in her blood (crp) has come right down, though not gone yet and she’s now on 4mils of milk an hour! And in clothes! She’s such a wee star! But somehow all going well seems to worry me more. Blah, think I just need much more sleep!!! Anyway hope this makes sense, updating from phone means I can’t proof read… Sorry if it makes no sense at all 🙂

originally posted on babycentre community board; x-posted to www.handprints.org.uk/pixiejos-previous-blogs.html

For the last 56 hours and counting

pixiejo · you!

Posted 24/9/09

Ivy has been breathing all by herself!

They’re confident enough in her ability to breathe that they’ve taken the CPAP machine away altogether! And today she should finish her antibiotics – I never did ask what type of infection she had, I’d rather not know I think!

We would be up the hospital right now, but she’s having a day out off across the hospital to the x-ray department with 2 nurses all to herself. All the investigations that had been paused while she was poorly are starting back up, so today they’ll have a look and see if there is a reason why she’s stopped pooing again (sorry tmi, it’s amazing how babies make you obsessed with these things, I swore it’d not happen to me, but there we go!) And when the antibiotics finish she’ll be back on the phenobarbitone ready for her HIDA scan to see if there’s a reason why she’s jaundiced.

And that’s my hubby back with his new haircut…..hope yuo’re all well lovely ladies! Thank you so much for all your PMA, yuo bunch of stars! love ya all xxxxx

Jo x

pixiejo · you!
Updated 24/09/2009

I am so super excited and proud of her! Can’t believe this time last week she was all sleepy and on CPAP 24 hours a day, not even able to have little bits of time off for ‘nose-breaks’ . Must be her stubborn Scottish blood! 🙂 She hated that machine so much! I wonder what she’ll choose to pick on now.

I will give her teeny tiny high fives and kisses from yuo all when we visit later! woooo! xxx

Jo x

originally posted on babycentre community board; x-posted to www.handprints.org.uk/pixiejos-previous-blogs.html

Other people’s stupid comments!! Just having a wee rant to myself :)

21/09/2009·public·585 visits · notify me ?

When Violet was born I was warned by a thread on a board that people make some rather strange and somewhat annoying comments about premmie babies. Many of these comments are well meaning, but still are enough to drive yuo demented! Well they drove me demented certainly!

From the baffling ‘Oh I hope my babies are that small, look how cute she is’ and ‘well at least the labour was quicker and easier’ to the downright annoying things like ‘oh I bet yuo’re glad she’s normal now’/ ‘when will she be considered normal?’ ‘when will she get all cute like a normal baby?’ ‘ooh she looks like she’s made of plastic!’ (yeah, I have no idea either) Seriously, normally nice people say these stupid things! And they don’t even see that they’re being offensive normally!

Well anyway I had thought I would escape them this time, seeing as we’ve all been there, done that. But yet still my family come shining through with some real gems, at least they don’t disappoint! My dad said earlier this week ‘she’s not really that ill is she?’ No dad, she’s been kept in intensive care cos the nurses enjoy her company so much. The mind boggles.And all of them have attempted to make me feel better with comments like ‘At least you missed out on all the stretch marks/piles/sore back/etc!’ cos like nearly 3 months in hospital watching your baby fight is so much better than a few temporary ailments that you knew you were going to get! Grrrraaaaaahhhh!¬

But by far the most offensive comments I have had so far, with either of my babies have come in the last fortnight. And the same comment has been made by *2* different, entirely unrelated family members…my gran and my MIL.

‘you shouldn’t worry so much about going to visit Ivy Jo, it’s not like she’s knows you’re there’

Words. Fail. Me.

originally posted on babycentre community board; x-posted to www.handprints.org.uk/pixiejos-previous-blogs.html

pixiejo · you!
Updated 21/09/2009

Oh bless you ladies! I do feel much better for the rant 🙂 I try to remember that our families are stressed too and that they are trying to say helpful things. I did have to point out about babies being able to hear our voices, and that I am ‘learning’ ivy, what she likes, dislikes etc and I can only do that sitting with her. I really appreciate your comments, you fabulous bunch! I’m glad it’s not just me that thinks my family’s comments are daft and insensitive! Thank you all!

Jo x