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October 14, 2009 Leave a comment

14/10/2009public133 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! 馃榾

pixiejoyou!
Updated 14/10/2009

Bless you lovely! I should really only post journals after I’ve visited Ivy, when my sun is shining 馃榾 ((((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. 馃檪 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’聽 so I’ll refrain 馃檪 Take care lovely xxxx

Jo x

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

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Still here!

October 11, 2009 Leave a comment

11/10/2009public190 visits notify me ?

Ivy seems to have perked right back up,聽 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

October 10, 2009 Leave a comment

10/10/2009public237 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!!!!!

October 9, 2009 Leave a comment

9/10/2009public208 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

Do I do anything but rant really?

October 7, 2009 Leave a comment

7/10/2009public184 visits notify me ?

Hahaha! Well my hubby may be right all I do is rant, so please ladies excuse yet another rant taking up space on the right of your page! I rant in this journal too much I konw, but well, Violet doesn’t listen she just gets me to pretend to drink from her tea set, bless!!!

Anyway, Martin and Violet are ill again. As if I don’t spend enough of my time paranoid about getting poorly, now I’m living in a housefull of it! They have colds this time, and while I keep having paranoid flashes that my throat os sore or my nose is running I am actually fine so far. Drinkings lots of OJ and water and telling myself that I simply cannot get this frigging cold!

I am so mightily p*ssed off about it! My bro and family popped in to see us on their way back from holiday, see we’d given them the hol as a wedding present. We’d originally booked it for ourselves back before I knew I was pregnant and had been told by the midwife we’d not be able to go. They’d been skint when we got married in March and so had decided to buy us a week at the same place this time next year as a belated wedding gift, and they wanted to surprise us with the details. Bless them how sweet is that!!! So it may seem awfully surprising and ungrateful to start this with I’m so p*ssed off BUT…..their little girl had been as they put it ‘husky’ most of the week and they thought perhaps she may be coming down with a cold. And lo and behold here we all are 5 days later V and DH sniffling, coughing and snotting everywhere and so are they!

Yeah colds happen, I know we can’t lock ourselves away for the next year. BUT Why don’t they understand, even after Ivy’s last infection and how I ranted about it, that what is ‘just a cold’ for most folk, is a nightmare for us as we’re all stressed, not sleeping or eating properly and means we can’t visit are much poorlier little chick?!? And that most importantly it could be utterly catastrophic if we accidentally did take it into the hospital!!!! Why don’t they get it? Why when I rant about people coming round when they’re poorly does everyone think I’m talking about everyone apart from them? It’s not like they tell me on the door either, no. they wait until they’ve been here for half an hour playing with Violet and all her toys, “oh we think ..x… has got a sore throat” I’m fucking sick of being told that they’re sorry. It’s really driving me bonkers! I really feel like I’m banging my head on a brick wall. Surely to F-ing god this isnt unreasonable of me to ask people to not bring their ill kids to my house?I mean this was why we stopped Violet being babysat, after the nits and the hideous tummy bug in a fortnight it just seemed more trouble than it was worth. I really don’t get why my family thought it would be better to still take V and look after her when they’re poorly and send her ill back to my house? I know they’re trying to help and I don’t want to be awfully ungrateful, I konw they are trying. But really in what exact way is that any help to me at all!? Why can’t anybody just offer to do my sodding hoovering that would’#ve been much more helpful!

And cos V is still ill I’ve had to pull out of her speech therapy tomorrow too, I don’t want her either passing it round everyone else, that doesn’t seem fair! And I don’t want her picking up something else while her immune system is low.

Just hope everyone else feels better soon and that I don’t catch it! I’m only able to visit Ivy for half an hour a day at the moment while M and V wait in the car, and then I’m tooscared to hold her just in case I’ve brought the vile bug in. It just fucking sucks. Stoopid people.

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

For the last 56 hours and counting

September 24, 2009 Leave a comment

pixiejoyou!

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

pixiejoyou!
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! 馃檪 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

Magic PMA!!!

September 18, 2009 Leave a comment

pixiejoyou!

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

pixiejoyou!
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