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14/10/2009·public·133 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! 😀

pixiejo · you!
Updated 14/10/2009

Bless you lovely! I should really only post journals after I’ve visited Ivy, when my sun is shining 😀 ((((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. 🙂 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’  so I’ll refrain 🙂 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!!!!!

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

anyone have any PMA I can steal?

pixiejo · you!

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 😦 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

15/09/2009·public·193 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. 😦

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

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