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

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

Ivy is off to bristol

7/10/2009·public·347 visits · notify me ?

Well not quite yet, but as soon as a non-emergency bed and the fancy ambulance team are ready then she’s off 😦 could be tomorrow, more likely a few days though. She has to have investigative tests to see why her belly keeps blowing up. Hopefully it’ll be something that will self correct and we’ll only be there a few days, but there’s a chance she could need surgery, hard to know when they don’t know what’s causing it! Apart from that she’s well, her and the baby in the bed next to her both span 180 degrees today, don’t know how, why or if they discussed it first just to freak the nurse out…. Anyway I must pack violet’s bags ready to go at short notice and get a washing on, thought maybe typing it out would help me digest it.

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

All Clear!

2/10/2009·public·192 visits · notify me ?

Yesterday flew past at 100 miles an hour, but it was a good day!

Ivy finally made it over to Nuclear Science and got her HIDA scan, she looked really rather cosy in the travel incubator bless! And as you may have guessed it has come back all clear! Hooray! So today she’s back onto that king’s regime of vitamins to clear the jaundice out, and now she’s no longer fed TPN it should clear quickly too 🙂

While I was in visiting during the day (which only happens on DH’s days off) the eye dr was doing the rounds. So I got to hold her while she was having her retinas looked at; and one the other lovely mummys was good enough to keep me distracted so I didn’t look, the dr told me not too as they have to pin the poor little poppet’s eyes open! Not for the faint hearted. He’s happy with the way the blood vessels are growing, so that too is all clear!

And also as she’s passed 35 weeks now (36 actually!) the parameters have changed on the monitors, so she had been in a little oxygen to keep her sats up and yesterday had it have it through nasal cannulas which she hated! Last night she went back into air, cannulas gone from the nose; and as all the antibiotics have been finished the cannula is out of her foot too!

I had my post natal check, which apart from relaying the whole story to my Dr and having a bit of laugh, was really rather dull.

Violet had her first speech and language session. Well, she played in the nursery and us parents got talked through various tips on how to encourage our reluctant chatterboxes. It was really lovely to be with other parents and not have to explain why Violet is like she is, as we’re all in the position!

And we got a tumble dryer 🙂 nice, warm, dry washing instead of a kitchen constantly smelling of damp hooray!!!

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

Magic PMA!!!

pixiejo · you!

Posted 18/9/09

Hiya ladies!

Thank you so much for yuor PMA yesterday, it really helped! I feel like I’m still clinging to some semblance of sanity by the skin of my teeth, but still clinging!

Ivy is having a better day today, her platelets have stayed at a number they like after yesterdays transfusion and, more importantly the infection markers in her blood have started to come down. So they’re upping the doses of her antibiotics and keeping an eye on it. She’s started to demand time off her CPAP again, mainly by pulling the pipes off herself and managed to tolerate two hour and a half spells with no breathing help, and after nearly a week of having a little extra oxygen she’s back to just being in air.

But most importantly, somehow amidst all this madness and despite being nil-by-mouth for the last couple of days she has managed to put 105grams! Meaning she’s now 2lb 2, just shy of the weight of a bag of sugar!!!

So we’re not out of the woods yet, but definitely having a better day today! Will keep yuo all posted, many, many thanks and huge hugs to you all!!!!

Jo x

pixiejo · you!
Updated 19/09/2009

She is a cracker isn’t she? I’m so proud of her!

As she was starting to protest at her CPAP pipes yesterday they decided to cycle her 6 hours on 2 hours off, but Ivy had other ideas and has so far done 4 hours on 2 off, 3 hours on 2 off, 2 on 2 off…..just hope she doesn’t tire herself out being stubborn! She’s 34 weeks now so theoretically should be able to breathe by herself all the time! She certainly seems to think she can!

THanks so much ladies, yuo’re all stars! x

Jo x

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

anyone have any PMA I can steal?

pixiejo · you!

Posted 17/9/09

Hi ladies, hope yuo’re all cooking well! Can’t believe I’d be 34 weeks today, not long for you all now huh?

Thanks so much to yuo lovely ladies reading and replying to my journal, I’m sorry I seem to have no time to reply at the moment, but I do read them all and I appreciate yuor advice and stuff! I would journal this too but somehow I don’t want the world to know. Not really sure why, but there we go!

My Ivy is poorly, I’m try hard to keep my chin up but it’s really tough. She got moved back to intensive care on monday and was found to have an infection on tues 😦 She’s gone all quiet and is off her milk and solidly back on her cpap so not breathing by herself at all at the moment. She had a blood transfusion last night too. They tried to do a lumbar puncture overnight but only got blood, currently her platelets are low so she needs to have a transfusion of them before they want try a LP again – so they can rule out meningitis officially. They ultrasounded her head and not found anything so they think most likely an infection in her gut or in her blood. X-rays of her chest are clear at least, they think her chest and heart are fine so that’s something. She’s on lots of antibiotics and antifungals at the moment, the nurse likens them to domestos – kills all know germs dead – fingers crossed she’s right eh?!

So if it’s not too greedy of me I could really do with a big BC hug and some PMA for Ivy if you have any spare. Thanks so much girls. Hope yuo’re all well, I’ll update you all hopefully with better news when I get some x

Jo x

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