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Posts Tagged ‘cpap’

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

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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

Jojo stuck at home and sulking

September 10, 2009 Leave a comment

10/09/2009public250 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 馃槮 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!

pixiejoyou!
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

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

so I’ve finally been discharged, Ivy is 3 weeks old!

September 5, 2009 Leave a comment

5/09/2009public352 visits notify me ?

For the difference it makes to be discharged, I’m in hospital every day anyway, just now I only have to visit one ward rather than 2!

I think I may have overdone it though, as Violet has been off with various babysitters she’s caught nits, just what we need right now! So I spent yesterday nit-combing a 2 year old, I’m sure you can all imagine how much fun that was. But because she was off staying at my bro’s last night I didn’t want to send her with the dreaded bugs just in case she hadn’t caught it from them, so I had to stomp all the way into town to buy the treatment stuff, which was probably silly seeing as I’m not meant to be pushing her anywhere right now, and then had to lift her in and out of the bath. But it had to be done. Only now I’m bleeding again, which I’m fairly sure I’m not meant to….and cos I’ve finally been discharged I don’t have any of the relevant phone numbers to see if it’s something to worry about….but at least I’m going back to the hospital this afternoon anyway. Sure it’s fine. Right?

Ivy is still pootl;ing along nicely, slow and steady. They have started weighing her, she did lose weight down to 1lb 6 so they started giving her fat (lipid) in her drip and she’s back up to 1lb7. And shes’ started to have some milk, just half a mil every 3 hours, and it’s still blowing her up like a balloon! She seems to have gone on poo strike again so they’re testing her for cystic fibrosis in case that’s whats causing it; but at least the lack of poo has meant they can get all the wee samples they need to find out whats causing her grey jaundice. She’s much more active and awake now which is lovely, her little mouth seems to constantly be on the search for food, and she’s having great fun removing her tubes and pulling off her CPAP. So while they say that she’s having 3 hours off breathing by herself every 6 hours, she’s actually having more cos she keeps pulling all the pipes off! When we arrived the other night she was chewing on them!

Anyway the phone is ringing again. It rings every 20minutes all morning, for the first week I panicked every time as I thought it was the hospital and would run for it. But it would seem that most of the family want daily bloody updates, despite my assurances that we woudl call if there was any news and that I am really busy expressing and dealing with Violet and being bloody knackered. So I’m call screening. Oh for a ringer off switch. I should at least 1471 tho….Hope everyone is well!!! xxxxx

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