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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

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

anyone have any PMA I can steal?

September 17, 2009 Leave a comment

pixiejoyou!

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 馃槮 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

steps forward, steps back

September 15, 2009 Leave a comment

15/09/2009public193 visits notify me ?

So while we had been awway from the hospital Ivy had done really well with her feeding, gradually making it up to 5 and a half mils of milk an hour and cycling 2 hours on CPAP 4 hours breathing by herself. She was doing so well that when we saw her on Saturday she had had all of her lines out as she was fully milk fed!

Yesterday (Monday) Ivy was supposed to go for her Hida test to check her gall bladder function, seems Ivy had other ideas though.First thing in the morning her tummy gets all blown up again, so distended the skin was shiny like it was for about a week after she was born. This swelling pushes up onto her lungs too making it much harder for her to breathe, so when they come to pop her in the travel incubator for the big journey across the hospital she had a big desat & brady episode. So in the end they decided to leave her on the unit and reschedule for when she;s more stable. And while they were waiting for her to become more stable she had to return back into the intensive care unit for more careful monitoring. Back onto Nil-By-Mouth and drip feeding. Back off the King’s regime thingy. Back out of the clothes she’d only just made it into. And back beside the family that take up all the space. 馃槮

I managed to spend most of the afternoon with her today and was there when the doctors decided that she can gradually start having milk again which was much more positive, but nobody knows for sure why her belly keeps blowing up. Her x-rays and barium scan pics have been studied by the surgical team at Bristol Children’s hospital (it was them that decided she could eat again) and they’re happy there’s no obstruction and doesn’t need surgery, but it seems she still has quite a bit of meconium stuck up there, despite many stinky nappies now. They don’t know whether her jaundice is linked to the belly blowing up problem, that maybe if she starts having milk all the time and it all gets to function properly it could all resolve itself. But they have to firstly check that it isn’t any one of a number of other things, she’s on 3 lots of anitbiotics even though her blood tests have come back clean for infection. I guess I’m glad they’re being cautious to be on the safe side.

Just feel really bleh and numb about the whole thing, I’m trying to be jollier about it, now she’s more settled and stable again, but don’t seem able to properly pick myself back up. I dreamt she had died and no one was listening to me which was a bit harsh, can’t seem to quite shake that feeling now. Just really bloody tired.Anyway the lovely tesco man brings my shopping hurrah!

Hope you lovely ladies are having better days than me xxxx

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

Moved up a nursery! One step closer…

September 6, 2009 Leave a comment

6/09/2009public294 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聽 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. 馃檪 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 馃槮 Anyway! Must go and express again, it really does seem to be never-ending!

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

pixiejoyou!
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 馃槈

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