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

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

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

addendum : not to be outdone by Ivy

When we visit the hospital Violet normally comes with us (as we have various spoiling issues with babysitters, long dull story for another journal rant no doubt!) We all go into say hello to Ivy, then DH takes V out into the waiting room to play with the bead thingys and run about daft! Normally she has a great time!

On Saturday I’d had time to change Ivy’s nappy, they’d only been outside about 10 minutes when I thought I could hear Violet in the corridor, and bless her there she was covered in blood with all the nurses fussing around her trying to clean her up! She’d fallen so hard onto the curved edge of the bead table she’d split the skin just below her eyebrow. So off to casualty for us. On a saturday night. Standing room only; even with a nurse phoning ahead for us it was still a 3 hour wait!!!

While we were sitting trying to stop Violet touching the cut, trying to stop her running off and trying to stop her dripping blood everywhere, when one of the neonatal nurses appeared out of the crowd. Bless her she’d phoned the only other casualty department in Cornwall to see if they were as busy, and hit on the genius idea of the Minor Injuries unit at our local hospital. When we got there we were the only people in the waiting room, the triage nurse had clearly been so busy that evening she was in painting overalls, repainting the children’s room! We were in, out, superglued and lollipopped within half an hour! So Violet was home in time for bed instead of still being sat in hospital at midnight. 😀

Minor Injuries Unit = genius.

And at both visits to Ivy yesterday and every time we’ve phoned bless them, all the nurses have been asking after Violet. I guess they don’t stop being one of their babies just because they’re  discharged, aren’t they lovely?! My girls are lucky to have such lovely aunties!

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

Where did the time go?

12/09/2009·public·180 visits · notify me ?

Ivy is 4 whole weeks old today! Where have 4 weeks gone? But yet and at the same time, it seems eons ago I was pregnant….And for the first time since tuesday we’ll be able to go and visit!!! And we have babysitters already in place (well they’ve had a week off haven’t they?! ;p) for tonight, tomorrow and possibly monday too!

I also figured out, somewhat sadly, that I only discovered I was pregnant 6 months ago on monday, how can she be 4 weeks old already?! I’d have only been 34 weeks this wednesday coming. Oh well I haven’t made this far with either baby, so at least I don’t konw what I’m missing now!

As of yesterday, Ivy is fully milk fed, all 5mils an hour of it, bless her, stil hardly a drop at a time! So she’s finally had her long line taken out!!! One less drip, in fact possibly all drips gone, but lets not celebrate til I can see to check! 😀 She was a big brave soldier about it too, they give the tinies dextrose syrup for pain relief (not sure how it works, but I’ve seen how Violet reacted to it, sugar – good!) and she just stared at them through the whole procedure! She’s also survived her newborn hearing screen, premmie eye test which’ll be done again in 2 weeks and she’s been put on something called the ‘King’s regime’ for her jaundice, which is apparently a variety of vitamins and supplements added to her milk developed by King’s College, but for once google is failing me, I can’t find anything about it! And it’s tough to get all the relevant details over the phone, guess we’ll find out tonight! Hooray!

Happy sunny saturday all!!! xxx

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

Jojo stuck at home and sulking

10/09/2009·public·250 visits · notify me ?

Sulking muchly!

When Violet was ill at the beginning of the week we thought it was something she ate, especially cos it came on suddenly. Seems we were wrong, both me and hubby spent yesterday sleeping in shifts, to watch Violet, feeling like death warmed up; or totally overheated in my case. I have not felt that bad since recovering from alcohol posioning when I was 17, just grateful it passed quickly! All back to vague tired normality today thankfully! Nits last week, bugs this week, I’m beginning to think getting Violet babysat is more trouble than it’s worth.

So obviously we didn’t go to the hospital yesterday, and we can’t go now for at least another 48 hours til we know the bug has cleared from everybody; so at best saturday night, but more likely Sunday 😦 Poor little Ivy wont have any visitors til Sunday!!!

Ivy’s being kept busy though, she has her eye test today; apparently some very prem babies eyes don’t develop properly, the retinas don’t attach, so they’re checking hers in an hour. Yesterday she had another x-ray on her tummy, she’s still not pooing without suppositries (lovely!) so they had to check that there’s no blockages or swollen bits. The Barium that they put up to get the xray done seems to have solved the problem entirely, I’m glad I missed that nappy, especially in the state we were in! And on monday she’s having a hida scan, as she has prolonged conjugated jaundice. So they’re giving her phenobarbitol from yesterday, apparently this will make all the bilirubin stuff gather in her gall bladder, or maybe her liver, and then when they put the dye in and take all the pics on monday they’ll be able to see whether everything is draining through the gall bladder and liver as it should do. It wasn’t til I got home that I realised phenobarbitol is a sedative (duh) so she probably wont notice that we’re not there at least…..poor tiny one.

Oh and when I saw her last she was having 1 mil of milk an hour; today she’s up to 3 and a half mils an hour!

pixiejo · you!
Updated 11/09/2009

Aw thanks for all your hugs ladies! We’re all much better and have been yesterday so fingers and toes crossed we’ll get to go and visit tomorrow!

Ivy is doing superbly on her milk, when I rang in the evening for an update she’d gone up to 4.5mil an hour, if she continues to tolerate that then her long line will come out as she wont need the I.V. nutrition (TPN)!!! She’s managed to drop that to a mil an hour from 4.6 which is awesome! I believe she’s off the lipid already too. It’d be really lovely to see her without a line in each arm/leg, and the long line looks particularly uncomfy cos it goes in the top of her arm poor little chick!

She’s back to doing well with her breathing, we think she took exception to being moved as she had a couple of days of desats and braddies which are just hideous to see, and had to have a whole day on cpap. Back up to 2 hours on 4 hours off at the moment!

Hope yuo lovely ladies are all well xxx

Jo x

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

Moved up a nursery! One step closer…

6/09/2009·public·294 visits · notify me ?

Sooo super excited! Ivy has officially been promoted from Intensive care into High dependency hooray!!!

Double good cos the parents of the baby  next to Ivy in ICU were doing my head in! I#m sure they’re very, very nice people, and obviously having a NICU baby is very stressful, so they probably didn’t realise they were SO annoying! but I rarely come so close to punching folk I have to leave the room like I did yesterday! Waaah! We could only get down one side of Ivy’s incubator as she was next to the wall, and generally most parents stick to sitting with their visitors on one side of the incubator as their as so many other babies and you don’t like to invade other people;s privacy. Not the folks next door to Ivy, no. They would normally be down both sides of their babies cot so I’d have to peer at Ivy through the end of her incubator. Yesterday Violet was being babysat so I was there early and sitting up on a stool level with Ivy’s face, and when next door arrived they just barged in behind me, so they could be on both sides of their baby’s cot, nearly knocked me off my stool – despite there being nothing down the other side of their baby’s cot. I was so upset I went and cried in the loo (how sad am I?! should’ve just said something to the staff!) They didn’t even acknowledge that I was there, didn’t say sorry or anything! They didn’t even move when the nurse was discussing Ivy’s blood transfusion or other tests she’s currently having, I’m trying to believe they’re not ignorant, just really involved and worried about their baby, but really! So in the evening my fella made sure he was standing at the end of Ivy’s incubator cos he’s not little, and so they couldn’t get past and shove into me again. FFS the only day I got to spend time with Ivy on my own without having to worry about dashing home for Violet. Grrrr!

I was on the bus home writing a letter to the ward sister and everything and now I don’t need to bother for Ivy has moved!! Hooray!!!!

thanks for all your messages yesterday! I was going to reply there but needed to share the excitement, and it would seem a bit more rant than I had intended! The bleeding seems to have calmed down, apparently it’s just my body saying that I am doing too much when I should be home resting…Ivy is *still* on poo strike, but the blood transfusion top up has meant her oxygen sats are holding much better, so she’s back to having more time breathing by herself again. 🙂 The transfusions are such small amounts it’s insane, the first one they gave her was so small they actually took more blood from me to crossmatch and figure out what blood type she was, which seems like a real waste! I’m not allowed to donate to her at all though 😦 Anyway! Must go and express again, it really does seem to be never-ending!

Hope all you lovely ladies are well!!!! xxxxx

pixiejo · you!
Updated 8/09/2009

Hello ladies!

HOw you all doing? I have told Ivy you’re all thinking of her and she looked at me like I was daft; but she normally looks at me like I’m daft, so hard to tell what she thinks really 😉

Karen, I’m not really sure what happens long term, try not to think about it to be honest! While Ivy was born very tiny for her gestation, her brain was as developed as she should be for 29 weeks, which stands her in good stead. The unit also scans for brain bleeds, which potentially could cause problems, especially if they occur in the first 4 days, so far she is clear which is good too. Violet did have a grade 1 bleed when she was a couple of weeks old and it all just got absorbed and as far as you can tell with a 2 year old – she’s fine! I know Ivy will be monitored until she has caught up to where any other child her age is developmentally, as Violet is still under the care of the same consultant! Violet has to see him every 6 months as she’s still not talking as much as she should for her age, and she will until it’s sorted or diagnosed as being a problem.

No results back on the jaundice or CF yet, the CF had to be sent to Bristol for chromosome tests. We got asked all kinds of questions like whether me and DH were related and stuff! It’s really an education this NNU!

THank you for your thoughts I appreciate it, and I appreciate yuo all taking the time to read and comment! You’re all fabulous!

Jo x

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