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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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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

All Clear!

October 2, 2009 Leave a comment

2/10/2009public192 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 馃檪

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 馃檪 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

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

stress factor ten

August 24, 2009 Leave a comment

24/08/2009public300 visits notify me ?

I’d been dreading this day, absolutely dreading it, today was ‘let;s remove the ventilator day!’ Aaaaaaaah!

Now I know that removal of the ventilator is actually a good thing, that it is a step in the right direction. But still wahhhh!! I was so terrified of them taking it out that if I could’ve said no I honestly think I would’ve done. Scary, scary stuff!! So yesterday they dropped her morphine dose and gave her a big load of caffeine, and by this morning for the first time teeny tiny was drug free! Well not including the antibiotics I suppose 馃檪 And by lunchtime she had graduated to pressure assisted CPAP , so I’ve finally been able to see her little mouth! And boy is my baby a grumpy wee madam! Bless her, I suppose I’d be rather grumpsome too, but all she did was scream the tiniest scream at me every couple of minutes, and then frown a lot, sleep a bit, scream again…..and so on. Nearly broke me the first time tho, cos well, how the hell do you comfort a crying baby attached to all the wires in her little box? Just wanted to pick her up and give her cuddles and can’t, and cos she’s been stressed so much I wasn’t sure whether I could even lay my hands on her. POor little thing! The nurses were really pleased that she was screaming though, after all she needs to be feisty to get through all this, she needs to have a lot of fight in her! And a good bit of lung exercise certainly wont do her any harm.

Of course there is every chance that within the next day or 2 she could get tired trying to do all the breathing herself and have to go back onto ventilation and morphine again; and they’ve promised they will phone so that we don’t have a shock when we come for our next visit. So I’m hovering by the landline praying it doesn’t ring, god help anyone else that calls here right now!

The rest of the world ticks onward. Hubby is back to work today after having to bring home a pile of invoices and other fun stuff to catch up last night 馃槮 And the new shiny car (did I mention the new shiny car?) already has quite a large fault! THe beloved Pug got part exchanged for an immense N-reg Audi A6 automatic, bless DH, he got an auto thinking I would prefer to drive it as it is easy and I’m terrified of driving. Not really taking into account that I don’t have any issue with the gear changing bit, it’s the dimensions of the car and all the other tw*ts on the road I’m scared of…and now we have a boat! The Audi is huuuugggggeeee! It’s like a bus, I have no clue how the hell I’;m ever going to park that beast! And we live in Cornwall, where many of the roads only *just* fit 2 cars down them……bless him he really tried, I konw he did and I don’t want to say anything mch about it cos there’s rather a lot of stress going on just now, but for me and driving….big car bad. Tho I suppose if I put green P plates on an Audi, which are normally driven by boy racers, every other car in Cornwall is going to give me a really wide berth, I’ll practically have the road to myself I imagine! Anyway, I digress….. a lot! The shiny car’s electrics only work when they feel like it, we discovered at 10pm at the hospital that the headlights didn’t want to go on at all, and using the old switch it off, get out and start again seemed to do the trick. But the next time we got in it, it did exactly the same thing with the indicators, the next time with the windscreen wipers….it’s really random. I think it’s just one circuit that works intermittently, which is why it got through the MOT ok (part of the deal with the garage is a years MOT) so while the stereo, brake lights and dash, etc always work certain other importatn things don’t. The indicators, windscreen wipers, fans and headlights as far as we know….bless my poor hubby he’s quite upset! He’;s loving having what is effectively the biggest bumper car in the world, ah automatics. In some ways I can’t wait til I’m allowed to drive to give it a wee shot 馃檪

So much more to say so little time as always. And tjis is probably epic enough for the time being, meant to be a journal not a novel Jo.

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