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would anyone be surprised if I said we’re *still* here?

October 19, 2009 Leave a comment

19/10/2009public171 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.

pixiejoyou!
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 馃槮 Aaah our times will come!!! Waiting sucks!

Jo x

pixiejoyou!
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!! 馃檪

Jo x

pixiejoyou!
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 馃檪

Antonella, there are crisps if you prefer! 馃槈 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!!! 馃榾

Hope you’re all well lovelies xxxx

Jo x


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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

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

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

SPIDER!

August 18, 2009 Leave a comment

pixiejoyou!

Posted 18/8/09

hiya all,

i’ve just had all the night staff laughing at the speed i left my room, a f***-ing enormous huntsman spider just appeared and did a runner along the skirting! i swear i have not seen a spider that big outside a zoo! cos obviouslymy blood pressure was not high enough before. i’ve just had it retested at 150/96. fab.

ivy is doing ok, not much different. she is hating being touched or moved so we’re leaving her be as much as poss. can’t blame her for bein grumpy! she’s down 2 bein ventilated in just air and taking some breaths herself, and seems 2 finally be weeing, ah the stuff you celebrate huh?! she may have an infection but they’re hoping the antibiotics she’s already on will sort it, may just be a funny test result tho.

oh and another thing all yu 2nd timers聽 should know that no-one told me. i’ve been really worried as the bottom of my back has been really numb and my hips really sore, thought i’d overdone it or something, apparently it’s normal on ur 2nd baby. hormones moving it all back into place, even tho i’m this early! so be warned and don’t worry 馃檪 oh and you still get after pains even after a section, they were fun, but not too awful once i knew what it was that hurt and why. thought i’d give a heads up to ya all tho!!!/

hope you’re all well xxxx

Jo x

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

thanks ladies! ivy update :)

August 17, 2009 Leave a comment

Posted 17/8/09

morning all, hope you have all been keeping ok! thank you all so much for your messages over the last few days, l and g you are both fab, thankyou 4 updating 4 me!

i am still in hospital, tryin 2 do this onvthe overhead telly thing, if it makes no sense that’s why/! i am bein kept in 4 a few days, PE appeared again just before ivy was born BP is back 2 normal now with drugs but they’re keeping an eye just in case. trying 2 get upand about feels like i’ve been in bed forever!

ivy is doin ok, they are still worried about her, she does seemv2 b making progress tho. she has come off some drugs and has less help withbreathing but still ventilated fully. she had to have platelets blue-lighted downfrom bristol last night, they did tell me why but not much is really going in, and is under her sun lamp 4 jaundice right now. she does lookvcomfy lounging with her shades on! most of the nurses are the same as looked after violet and she has the same consultant, so at least we all know each other and webknow how it all works, 1 less thing 2 worry about! and hopefully if today goes okb4 her and i can stand for long enough i will get 2 change herbum! so nearly 48 hours down, still a way to go but apparently getting thru the first 2 days is good 馃檪

i’ll keep u posted, hope ur all still cooking well ladies and bumps! thanks again, love u guys xxxx

Jo x

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