7 days corrected
Jazz had her bath and weigh today, weight is up 31g to 2191g!!
The nurses were astounded by Jazz doing the most adult, manly, sounding fart today!! It would put a truckie to shame!!!!
8 days corrected
Jazz is off her big monitor and on a small basic model. All chest and tummy leads are gone and only the foot sat probe remains!! Awesome!!
She had her infacol and pentavite straight out of the syringe this morning, she hated the pentavite and pretended to upchuck!!
Took her bottle really well of course, she loves the bottle! Had 1 tiny posit and big farts and burps, very unladylike!!
Its so great to be able to say its actually quite boring now!! I come in and feed her, burp her, put her to bed, drink copious amounts of coffee; feed her again at 12, burp, settle, coffee, home!! Its wonderful and has been such a long time coming!!!
Whenever I call at night now, I just get told, she's sleeping and took her bottle well.......just like a regular baby!
Cant wait to get the o2 installed at home, hopefully they'll get onto it quickly during the week!
It'll be incredible to have her home!!
She still squeeks all the time, very cute!!!
9 days corrected
Should be home late this week or early next week!!!! OMG!!
Weight today- 2266g, up 75g!
Diuretics have been halved now, fortifier will go soon!
Paul and I have to do CPR tomorrow at 11am, then were off to get me a new car! One with heating!!!!!
10 days corrected
I'm getting so excited now its just not funny!!! They say she'll be home next wednesday.!!!
Monash media contacted me, the herald sun want to do a coming home story on Jazz!! They'll come and take pics Friday, then do a phone interview, she'll be in the paper on the 22nd or 23rd July to coincide with her homecoming!! What a legend!
Oxygen will be installed this week sometime.
Got my new car, 2005 BA XT station wagon. Pick it up Thursday 10.30am!!
11 days corrected
Had a weigh today, 2316g! Slowly getting there!
Taking all her feeds well, she's a cleer girl! She still farts like a bloke, they are honestly the loudest farts ever!!!
Diuretics have been cut down again
12 days corrected
Not a lot to tell at the moment! She's just doing so extremely well!! Taking her bottles, pooing almost constantly, every nappy has skiddies!!!
Paul and I took Storm to see Jazz in the new car, The car is awesome! Storm adored Jazz , kept saying how much he loved her!
13 days corrected
Had our photo shoot today! She was a star of course! She was peaking afterwards and didnt sleep for four hours!
She's completely off diuretics and fortifier now, only having ferrous and pentavite- she HATES the pentavite!!!
Weight today - up 10g to 2326g
14 days corrected.
For the first time since she was born I couldnt go near her :(
I have a snotty nose and raspy throat. Its been a very miserable and extremely long day, I miss her so much!!! Rang lots of course, but thats not the same.
Up til now I havent missed seeing her at all.......I feel sad, sorry for myself and also guilty that she's alone...even though she's surrounded by other bubs and nurses...she doesnt have mummy. And mummy doesnt have her beautiful cuddles
I need to take milk in tomorrow, but not sure if I'll be able to see her.
Monday, 27 June 2011
Sunday, 26 June 2011
40 weeks- officially a newborn!!!
Jasmines due date today and I'm just so excited!
She was weighed, after a feed though, we subtracted 30g, but maybe couldve taken more, will know for sure tomorrow. I just wanted her term stats!!
She's 2123g (4lb 6oz) H.C 32cm and length 42cm. She's so big now!!!
Theyre still very happy with her and still want to send her to Dandenong.....and I still dont want to go!! We know Monash and Monash knows all Jazzies quirks...theyve even begun getting used to her girth!! (which always freaks out the nurses who're new to Jazz!!!) The thought of going to a strange hospital is really, honestly frightening!
I did 'term' hand and footprints today, a bit dodgy though 'cos she was not being at all cooperative!!, i'll redo them in a couple of days.
I bought her a big teddy bear chair from Zouki's today....she had to get her due date pressie!!!
1 day old corrected!!!
Wow, no more of the gestational age plus business, we're now into actual days corrected!! wow!!
Its a bit hard to get used to this corrected age business at first!!! She's 4 months old, but 1 day old corrected....strange!
She is, as always, magnificent today!! She actually had a great feed at 8am, got 3 let downs and had lots of wind!!
Had a bath and a proper weigh, her real weight is 2110g!!
She's doing so well with her feeds that her nurse today said it could only be a matter of weeks before she comes home!! I hope so!! I miss her so much when I leave! Its much harder now that she's well and its really only feeds keeping her in!!
She'll be shipped off to Dandy as soon as a bed is available....I told them how much I dont want to go.....hope a bed doesnt come up 'til we're outta here!!!!
Its going to be so scarey to leave!
2 days corrected
Wasnt really happy with her nurse today, she hadnt been in the country long and she found it difficult to understand things! She wouldnt listen or understand when I told her Jazz had a big feed and was colicky, thankfully I ended up settling her by putting her on her belly. Shamilly also did all the meds when Im supposed to do it and that annoyed me too. I've noticed the Indian nurses dont seem to understand that when we mums/dads are in, its OUR job to change, bathe etc, for goodness sake Ive been doing her bum since she didnt even have a bum so its quite annoying to be brushed aside and have these other people take over when I'm in (happened in Bay 3 a lot also)
Jazz sucked well on 4pm and 8pm bottles, she's just brilliant!
3 days corrected
Jazz was much less colicky today. She has infacol with each feed now, so she now has her booby and passes out instead of being unsettled and upset for hours. Its interesting to re read this and see how she went from loving booby and passing out instantly to being colicky and upset so quickly, wonder what changed it?.......
She spent most of the morning farting -big, manly farts I might add, nothing petite or princessy about these farts!!!
Still waiting to move to Dandy (well, they are, I'm not!!!) Tony wanted the respiratory team to know about Jazz before she goes and they said they want a download tonight. they also want her to have a go at 15 minutes with no oxygen!!!!
She had her 15 minutes off o2 and utterly shit it in!!!!!!!!!!
No desats!! They were so happy with that they said they wanted to see if she could cope with an hour!!
She had her eye exam around 2pm. The ROP in her left eye is improving, she needs another exam in 3 weeks, if she's home we'll see Marcell in Cranbourne.
She had both breastfeeds today and settled well after each! No top ups!
Weigh- she only put on 1g!!! What a letdown! The nurse said maybe its because she's been so unsettled and not sleeping well and burning off too many calories.
8.30pm- Started her download, and she had her hour off o2 earlier.....and shit that in too!!!! Only 1 small desat and that was when she was squirming!
She also has staph in her eye and is having eye cream. I asked where staph comes from and was told it lives in the nose....since Jazz cant get anywhere near her nose due to the massive size of those prongs in her nose, and the fact that NICU turned me into a germophobic, obsessive-compulsive hand washer; and since I noticed something wrong with her eye and brought it to the doctors attention in Bay 3, I can only assume it was that bloody coughing, snotty Bay 3 nurse!!! Snotting all over my baby...grrrr
4 days corrected
Jazz was fussing at the boob again today, very unsettled, doesnt know what she wants!! Once again Im wondering if whether I should just put her on the bottle....so confusing!!!
Its difficult to know what to do at the best of times, but when you've been through all this......one of the things I was really looking forward to all the time she has been in NICU and special care was to be able to breastfeed her. When she started off and was doing so well I was so happy...now....dont know. At the end of the day, I know the whole breastfeeding thing is really again about me. It really doesnt matter for her because whether its bottle or breast, she still gets breast milk so she's still getting the best thing for her regardless of the packaging!......but I was really wanting to breastfeed.......we shall see...
In every other area, she's doing magnificently!! The download report came back (but its yet to be assessed by respiratory) it says she desatted 1 hour out of 12, that sounds pretty good to me! It also said she spends 45% of her time moving!! Just need to wait for the official results.
Sandy hadher this afternoon, she was annoyed that they keep topping Jazz up nasogastrically. When I called that night, she said she believes the reason Jazz fusses at the breast is because she LOVES the bottle, she just chugs it down like a little piggy!! I guess thats it then! If Jazz wants bottle, she'll get bottle!
Sandy also removed the NG tube!! Yay!! All suck feeds!! NEARLY HOME!!!!!!!
5 days corrected
Jazz started her first day on all bottle feeds, she does really well on them. After talking with her nurse we came to a conclusion. Jazz had begun a pattern on the breast of 'suck, suck, wait...then some quick sucks and waiting...then a couple more suck, wait.....ahhhhh, letdown...swallow, swallow, gulp, gulp.....fuss and tanty cos the let down stopped...' so basically the lazy little bugger just doesnt want to put the effort in to sucking and was getting plenty of fore milk with the let downs, but none of the good, satisfying hind milk....the bottle is easy, you dont need to suck much!!
She's off caffiene again now, hopefully she'll do well off it this time, then we just need diuretics reduced and to gain a bit more weight and she can come home!!!!!
The only other thing that needs doing is that Paul and I need to learn resuscitation before she gets the ok to come home...oh, and oxygen needs to be delivered, installed and need to learn what to do with the machine and thats it!! So I told them ok, we're good to go now!! I want out!
She had her weigh today, up 49g to 2160g.
So close now, Ive started getting the house in some semblance of order in preparation for Jazzie coming home!
6 days corrected
Jazz is a little champ!!
Loving her bottles and even hasher meds in them, although today she had her hydro and spiro (sounds like a playstation game!!) and infacol straight from the syringe.....and didnt seem to mind it!!!
She has little posits after eachof her bottles though.
Etta said they are organising everything for us to go home!!! Needs to come off the fortifier, and have her diuretics down to once a day!
The speed with which she's been improving over the past few weeks has been absolutely phenomenal to me!!! If you'd told me it was going to be like this, while she was on that bloody HFO monster, I wouldve thought you were totally insane!!!!
Its something I never expected and I'm loving it, cant wait to get her home, and its becoming especially hard now that she's so very close!!!!! It'll be better than Christmas!
She was weighed, after a feed though, we subtracted 30g, but maybe couldve taken more, will know for sure tomorrow. I just wanted her term stats!!
She's 2123g (4lb 6oz) H.C 32cm and length 42cm. She's so big now!!!
Theyre still very happy with her and still want to send her to Dandenong.....and I still dont want to go!! We know Monash and Monash knows all Jazzies quirks...theyve even begun getting used to her girth!! (which always freaks out the nurses who're new to Jazz!!!) The thought of going to a strange hospital is really, honestly frightening!
I did 'term' hand and footprints today, a bit dodgy though 'cos she was not being at all cooperative!!, i'll redo them in a couple of days.
I bought her a big teddy bear chair from Zouki's today....she had to get her due date pressie!!!
1 day old corrected!!!
Wow, no more of the gestational age plus business, we're now into actual days corrected!! wow!!
Its a bit hard to get used to this corrected age business at first!!! She's 4 months old, but 1 day old corrected....strange!
She is, as always, magnificent today!! She actually had a great feed at 8am, got 3 let downs and had lots of wind!!
Had a bath and a proper weigh, her real weight is 2110g!!
She's doing so well with her feeds that her nurse today said it could only be a matter of weeks before she comes home!! I hope so!! I miss her so much when I leave! Its much harder now that she's well and its really only feeds keeping her in!!
She'll be shipped off to Dandy as soon as a bed is available....I told them how much I dont want to go.....hope a bed doesnt come up 'til we're outta here!!!!
Its going to be so scarey to leave!
2 days corrected
Wasnt really happy with her nurse today, she hadnt been in the country long and she found it difficult to understand things! She wouldnt listen or understand when I told her Jazz had a big feed and was colicky, thankfully I ended up settling her by putting her on her belly. Shamilly also did all the meds when Im supposed to do it and that annoyed me too. I've noticed the Indian nurses dont seem to understand that when we mums/dads are in, its OUR job to change, bathe etc, for goodness sake Ive been doing her bum since she didnt even have a bum so its quite annoying to be brushed aside and have these other people take over when I'm in (happened in Bay 3 a lot also)
Jazz sucked well on 4pm and 8pm bottles, she's just brilliant!
3 days corrected
Jazz was much less colicky today. She has infacol with each feed now, so she now has her booby and passes out instead of being unsettled and upset for hours. Its interesting to re read this and see how she went from loving booby and passing out instantly to being colicky and upset so quickly, wonder what changed it?.......
She spent most of the morning farting -big, manly farts I might add, nothing petite or princessy about these farts!!!
Still waiting to move to Dandy (well, they are, I'm not!!!) Tony wanted the respiratory team to know about Jazz before she goes and they said they want a download tonight. they also want her to have a go at 15 minutes with no oxygen!!!!
She had her 15 minutes off o2 and utterly shit it in!!!!!!!!!!
No desats!! They were so happy with that they said they wanted to see if she could cope with an hour!!
She had her eye exam around 2pm. The ROP in her left eye is improving, she needs another exam in 3 weeks, if she's home we'll see Marcell in Cranbourne.
She had both breastfeeds today and settled well after each! No top ups!
Weigh- she only put on 1g!!! What a letdown! The nurse said maybe its because she's been so unsettled and not sleeping well and burning off too many calories.
8.30pm- Started her download, and she had her hour off o2 earlier.....and shit that in too!!!! Only 1 small desat and that was when she was squirming!
She also has staph in her eye and is having eye cream. I asked where staph comes from and was told it lives in the nose....since Jazz cant get anywhere near her nose due to the massive size of those prongs in her nose, and the fact that NICU turned me into a germophobic, obsessive-compulsive hand washer; and since I noticed something wrong with her eye and brought it to the doctors attention in Bay 3, I can only assume it was that bloody coughing, snotty Bay 3 nurse!!! Snotting all over my baby...grrrr
4 days corrected
Jazz was fussing at the boob again today, very unsettled, doesnt know what she wants!! Once again Im wondering if whether I should just put her on the bottle....so confusing!!!
Its difficult to know what to do at the best of times, but when you've been through all this......one of the things I was really looking forward to all the time she has been in NICU and special care was to be able to breastfeed her. When she started off and was doing so well I was so happy...now....dont know. At the end of the day, I know the whole breastfeeding thing is really again about me. It really doesnt matter for her because whether its bottle or breast, she still gets breast milk so she's still getting the best thing for her regardless of the packaging!......but I was really wanting to breastfeed.......we shall see...
In every other area, she's doing magnificently!! The download report came back (but its yet to be assessed by respiratory) it says she desatted 1 hour out of 12, that sounds pretty good to me! It also said she spends 45% of her time moving!! Just need to wait for the official results.
Sandy hadher this afternoon, she was annoyed that they keep topping Jazz up nasogastrically. When I called that night, she said she believes the reason Jazz fusses at the breast is because she LOVES the bottle, she just chugs it down like a little piggy!! I guess thats it then! If Jazz wants bottle, she'll get bottle!
Sandy also removed the NG tube!! Yay!! All suck feeds!! NEARLY HOME!!!!!!!
5 days corrected
Jazz started her first day on all bottle feeds, she does really well on them. After talking with her nurse we came to a conclusion. Jazz had begun a pattern on the breast of 'suck, suck, wait...then some quick sucks and waiting...then a couple more suck, wait.....ahhhhh, letdown...swallow, swallow, gulp, gulp.....fuss and tanty cos the let down stopped...' so basically the lazy little bugger just doesnt want to put the effort in to sucking and was getting plenty of fore milk with the let downs, but none of the good, satisfying hind milk....the bottle is easy, you dont need to suck much!!
She's off caffiene again now, hopefully she'll do well off it this time, then we just need diuretics reduced and to gain a bit more weight and she can come home!!!!!
The only other thing that needs doing is that Paul and I need to learn resuscitation before she gets the ok to come home...oh, and oxygen needs to be delivered, installed and need to learn what to do with the machine and thats it!! So I told them ok, we're good to go now!! I want out!
She had her weigh today, up 49g to 2160g.
So close now, Ive started getting the house in some semblance of order in preparation for Jazzie coming home!
6 days corrected
Jazz is a little champ!!
Loving her bottles and even hasher meds in them, although today she had her hydro and spiro (sounds like a playstation game!!) and infacol straight from the syringe.....and didnt seem to mind it!!!
She has little posits after eachof her bottles though.
Etta said they are organising everything for us to go home!!! Needs to come off the fortifier, and have her diuretics down to once a day!
The speed with which she's been improving over the past few weeks has been absolutely phenomenal to me!!! If you'd told me it was going to be like this, while she was on that bloody HFO monster, I wouldve thought you were totally insane!!!!
Its something I never expected and I'm loving it, cant wait to get her home, and its becoming especially hard now that she's so very close!!!!! It'll be better than Christmas!
39 weeks- ever closer to the exit!!!
Jazz is officially NOT a morning person! She just cant be bothered waking for a breastfeed at 8am- too much like hard work!
Before her 11am feed, we weighed and bathed her she's 1998g, little bugger!! I'm sure she knew I was waiting for the big 2 kilos!! and she poo'd off 2g!
After her bath she was ravenous and spent 20 minutes sucking, she wouldve gotten a lot of milk!! By the 2pm feed she was still full and sleepy so she had a nasogastric feed.
The doctors have upped her allowed feeds to 5 a day- 3 breast feeds and 2 bottles overnight!
Saw Leah in the hallway, she was amazed to see Jazz in bay 3, she said she's incredible....just need all suck feeds to get home.
On 0.06 all day, anelle said thats awesome, 'just a sniff'
8pm- O2 was reduced to 0.04!! That must be half a sniff!
39+1
Jazz was too tired again for the 8am feed, but she had her two bottles over night.
She's doing well on 0.04 still, although her prongs just will not stay in her nose!! The tape wont stick to one side because of the way the NG tube is taped. So she had quite a lot of desats because of that!
Blood gasses were done, Co2 is 57 so they want to repeat it tomorrow and her haemoglobin is low again too- 74.
She's been farting almost constantly, sounds like a truck driver!!!
Had a good breast feed at 11am- filled herself up. Then at 2pm she had a massive feed. Once again I was overdue to express and she got a lot all at once and promptly threw the lot up again!! Then she turned her head and gave me a look like she was saying "what the hell are you doing to me!!!?!!"
I fed her slowly after that, booby in- gulp a lot, booby out- have a break. She had a big feed and got very drunk!
She's very cuddly and delicious when she's milk drunk!
39+2
Jasmine is still doing brilliantly, but I wasnt too thrilled with her nurse! She was snorting and coughing and sniffling all over the place!!
Jazz is a bit fussy at the breast at the moment. Dont know what to do. I think maybe my milk flow is too much for her?? She's now on 4hrly feeds.
Weighed her today, shes now 2002g, only 4g in 2 days, maybe shes not getting enough from me.
Paul and I went in late tonight and he got to give her a bottle feed.
39+3
Fussy at the breast again today. Not sure if I should keep trying or if she'll do better on the bottle. She'll be getting breast milk either way.
She got moved to Bay 2!!! OMG!!! She's just amazing! I can literally almost see the door from here!!!
39+4
Had a better feed today, we tried a nipple shield and she does much better on it.
Everyone is still astounded at how well she's doing! nd we have the family meeting tomorrow!!!!
Oxygen 0.06 and she had a nice, big poo!
Had a bath and a weigh, put on 41g this time, much better!!! Now 2046g And now she smells nice too!
39+5
Jazz had to be topped up for this mornings feed, just not a morning person.
The family meeting was good. Tony thinks Jazz is brilliant! Of course she is!!!
He said all she needs is to have all suck feeds, and we will go home on oxygen, thats ok, thats what I always assumed anyway.
He said we will be moved to Dadenong very soon for fattening up and establishing feeds....dont want to go to Dandy at all....I have started doing all of Jazzies meds in preparation for going home.
She had her hearing test today, and incredibly, despite all the o2 and meningitis, she passed!!! Astounding!!! I've been concerned about that since she had meningitis!
39+6
Once again Jazz was too tired to be bothered working at the booby this morning. Got a nice cuddle though! Paige spent the day with us, she got big cuddles too and loved it!
Jazz had a massive breastfeed after her weigh and bath! She got 6 letdowns!! and ended up with lots of pains in her tummy, took ages to settle and when we left Jeneane was still cuddling her!!
8pm- Slept all afternoon once she settled after her big feed. Took a bottle at 7pm and sucked well.
Before her 11am feed, we weighed and bathed her she's 1998g, little bugger!! I'm sure she knew I was waiting for the big 2 kilos!! and she poo'd off 2g!
After her bath she was ravenous and spent 20 minutes sucking, she wouldve gotten a lot of milk!! By the 2pm feed she was still full and sleepy so she had a nasogastric feed.
The doctors have upped her allowed feeds to 5 a day- 3 breast feeds and 2 bottles overnight!
Saw Leah in the hallway, she was amazed to see Jazz in bay 3, she said she's incredible....just need all suck feeds to get home.
On 0.06 all day, anelle said thats awesome, 'just a sniff'
8pm- O2 was reduced to 0.04!! That must be half a sniff!
39+1
Jazz was too tired again for the 8am feed, but she had her two bottles over night.
She's doing well on 0.04 still, although her prongs just will not stay in her nose!! The tape wont stick to one side because of the way the NG tube is taped. So she had quite a lot of desats because of that!
Blood gasses were done, Co2 is 57 so they want to repeat it tomorrow and her haemoglobin is low again too- 74.
She's been farting almost constantly, sounds like a truck driver!!!
Had a good breast feed at 11am- filled herself up. Then at 2pm she had a massive feed. Once again I was overdue to express and she got a lot all at once and promptly threw the lot up again!! Then she turned her head and gave me a look like she was saying "what the hell are you doing to me!!!?!!"
I fed her slowly after that, booby in- gulp a lot, booby out- have a break. She had a big feed and got very drunk!
She's very cuddly and delicious when she's milk drunk!
39+2
Jasmine is still doing brilliantly, but I wasnt too thrilled with her nurse! She was snorting and coughing and sniffling all over the place!!
Jazz is a bit fussy at the breast at the moment. Dont know what to do. I think maybe my milk flow is too much for her?? She's now on 4hrly feeds.
Weighed her today, shes now 2002g, only 4g in 2 days, maybe shes not getting enough from me.
Paul and I went in late tonight and he got to give her a bottle feed.
39+3
Fussy at the breast again today. Not sure if I should keep trying or if she'll do better on the bottle. She'll be getting breast milk either way.
She got moved to Bay 2!!! OMG!!! She's just amazing! I can literally almost see the door from here!!!
39+4
Had a better feed today, we tried a nipple shield and she does much better on it.
Everyone is still astounded at how well she's doing! nd we have the family meeting tomorrow!!!!
Oxygen 0.06 and she had a nice, big poo!
Had a bath and a weigh, put on 41g this time, much better!!! Now 2046g And now she smells nice too!
39+5
Jazz had to be topped up for this mornings feed, just not a morning person.
The family meeting was good. Tony thinks Jazz is brilliant! Of course she is!!!
He said all she needs is to have all suck feeds, and we will go home on oxygen, thats ok, thats what I always assumed anyway.
He said we will be moved to Dadenong very soon for fattening up and establishing feeds....dont want to go to Dandy at all....I have started doing all of Jazzies meds in preparation for going home.
She had her hearing test today, and incredibly, despite all the o2 and meningitis, she passed!!! Astounding!!! I've been concerned about that since she had meningitis!
39+6
Once again Jazz was too tired to be bothered working at the booby this morning. Got a nice cuddle though! Paige spent the day with us, she got big cuddles too and loved it!
Jazz had a massive breastfeed after her weigh and bath! She got 6 letdowns!! and ended up with lots of pains in her tummy, took ages to settle and when we left Jeneane was still cuddling her!!
8pm- Slept all afternoon once she settled after her big feed. Took a bottle at 7pm and sucked well.
38 weeks gestation!
In by 9am this morning for Jazzies breastfeed. Changed her bum, cleaned her up and put her on.
She got a big let down and passed out drunk! Was on low flow in 0.08. o2 on high flow between 26-30%
Has a very sore looking bottom, I had been putting sorbolene on it, but it was getting worse so I asked Rosemary if there was something else we could use, she got me some icthamol in zinc. (today, 2 yrs down the track. I can safely say icthamol in zinc is amazing stuff and if a pharmacist was smart they'd make it and sell it over the counter, they'd make a fortune!!! Its the only positive of Jazzies admissions since she came home!!!)
Dr Tan is happy with Jazz and has upped her low flow to 4hrs twice a day . She was a good girl all day and at 2pm we weighed and bathed her. She lost 4g, but thats ok, she's working more now that she's having some breastfeeds.
When i put her in the bath she started carrying on and sucking on her hand, she thought she was starved!!! When I washed her face she tried to suck the face washer! Got her dried and dressed and popped her on the breast, she went nuts!!! Got a big feed, 2 huge let downs and had both sides! Passed out VERY drunk!!
8pm- Lyn said she woke with a very sore bum at 5pm, she plastered her with icthamol. She had a cluster of desats with her feed, Lyn thinks its the reflux.
I asked why she doesnt get the reflux with a breast feed, she reckons its 'cos Jazz controls the breastfeed and is able to take her time too, whereas the EBM, fortifier and thickener are just pushed into her tummy relatively quickly.
Low flow 9pm-1am. o2 on high flow 28%, still on a flow of 4
38+1
Jazz was waiting for her feed when i got there, wide awake and looking for her booby!
She latched on and sucked like a champion straight away! Her nurse Jenny, said she'd never seen a prem do so well on the breast!! She says she acts just like any full term newborn!! Well, I guess she's almost a newborn!! 2 more weeks 'til shes 'due'
She fed for 45 minutes and wanted more!!! Had to stop her'cos she got 4 let downs! She certainly didnt want to stop.
Dr Tan thinks shes doing great! He's upping her feeds to 3 hourly and she's back on 6 hrs low flow twice a day. All day she was on 0.06 on low flow, yesterday she was on 0.07
Got to cuddle her most of the day today, it was awesome! When she's on high flow, she's on 26-28% o2.
Aunty Dawn and Jodie came to see her. They both saw her when she was about 2 weeks old and I didnt find out until only recently, that Jodie was a bit traumatised when she saw Jazz. Seeing a baby so tiny and see through can be a very confronting experience and some people really do struggle with it. So they were amazed by how big she had gotten! and they both had a lovely cuddle.
i was overdue to express, again, by 3pm and Jazz got a couple of massive let downs, she passed out drunk very quickly! The nurses thought she was gorgeous!
8pm- Doing wonderfully!!!! Low flow is down to 0.05, tolerating feeds, good temperature.
38+2
Jazz is still absolutely amazing!!!
She was awake from 1am 'til 8am 'cos the poor bugger desperately wanted a suck feed!! The nurses couldnt accomodate her though because they didnt have my permission to give her a bottle!! But they do now. So, azz was thoroughly exhausted after her hard night and too tired for her 9am breastfeed, but did manage a bit of a suck. Dr Tan said she can now have 3-4 suck feeds a day!! So far tolerating them 3 hrly.
And she is doing 6hrs twice a day on low flow, so far, so good.
According to Doreen, when she's on low flow and having 4 suck feeds a day, she might be sent off to Dandenong or Casey, although a lot of the longer term bubs do come home from Monash......I hope she comes home from Monash.
7.40pm- Been great!! o2 is on 28%, sats in the low 90's. Starting her 6 hrs of low flow.
No nurses available for Bay 6 tomorrow so she'll be moved somewhere else for a bit.
38+3
Heart sunk this morning, Jazz got moved to Bay 8. Although I know shes only there cos they were short staffed, its still not nice being back in the critical care bays. Only thing is that I get to catch up and say Hi to a few Bay 8 friends a bit more. On a brighter note, Jazz has hit 100 days old which is yet another milestone to celebrate!! She had a 100 days old certificate made up and she recieved a beautiful '100 days quilt' to commemorate the occasion!!
Had a great breastfeed at 11am, fed for 40mins and didnt want to stop!!
Amanda gave her her first bottle feed last night, she chugged it down really well!! What a legend!! (even Dr David tells me she's a legend!! :))
Ken has put her on 8 hrs twice a day of low flow and if she copes she'll be trialled off high flow tomorrow!! Yay! Just incredible how far she's come and how fast she's improving just in the last two weeks, it amazing!!
She saw the opthalmologist, Marcell, today. The doctors still hadnt been able to see the little white spot, but Marcell did. He said its a congenital cataract. He said its anterior and hopefully it shouldnt cause any vision problems but its something she'll need to be followed up on when shes 6 months old. She has mild ROP now, but Marcell thinks it will rectify itself and will most likely be improved by her next eye test in 2 weeks time.
Got weighed today- 1935g! Had her bath, and another breast feed at 5pm. She'll have one or two bottle feeds overnight.
Currently on low flow she's on 0.05, which will be less than she'll be on when she comes home! If she copes with low flow, she'll move to bay 3 or 4, then in about 2 weeks odd they'll have an idea of whether she'll be likely to come home on oxygen. And she'll probably also be moved to Dandenong, but more than likely will come home from Monash if shes coming home on o2.
All she needs now is to get big and take all suck feeds, and come off her meds.
11.20pm- Doing great on low flow, still 0.05. Might just stay off high flow completely!!! About to have her bottle, and if she's awake, another will be offered at 2am
38+4
Got in at 8am. Jazz had a good night and had a bottle at 2am. Amanda said she took it well. She was moved back into Bay 5 this morning after her breastfeed, thank goodness were out of NICU again!! Dr Tan has taken her off high flow, she's now on 0.04 on low flow!!
Cathy had her in Bay 5 today and was stunned, its the first time she's seen her since she was in NICU, she kept saying "she's a real little miracle!!!" very loudly in a very asian accent, it was quite funny!! And of course I was very proud!!! Cathy just cant get over how well she's doing. No one really expected her to get off the HFO!!
Cathy even had her o2 down to 0.02 for a couple of hours today! Incredible!!
Co2 results came back - 49!!! Awesome!!
She settled very well back in Bay 5 and even attempted a feed at 11am- but really she just wanted to lick and grin!!
Saturating beautifully on the low flow!
We were interviewed and had lots of pics taken for an article in the leader newspaper, so Jazz will be in there next week sometime!
Still doing great tonight!!!
38+5
In for a feed at 8am again. We're back staying with Mum and Dad so they can get the kids to school while I go in and feed Jazz. Jazz just wanted to sleep this morning though.
She had Gary today, he's really lovely and sings and talks all the time to the bubs.
Dr tan is so happy with Jazz that he is taking her off caffiene and said she'll have her first download next week! A download is where they record all her oxygen and heart rate sats via the oximeter all night, then download and interpret that information to understand exactly how much oxygen is required. He said it could even be possible for her to come home without oxygen!! That is something I initially NEVER expected, I was under the impression that home oxygen was basically standard for a micro prem due to the severity of the chronic lung disease they cop!!!
The nurses however, are pretty sure she'll come home with it, they said its very unusual for a 24 weeker to go home with no oxygen....for me, just that Dr Tan thinks its possible is testament to how well he believes she's doing!!! Whether she has it or not, she's amazing and a true miracle!!!!!!
This afternoon around 1pm Jazz was transferred to Bay 3!!! Incredible!!! She's just flying through those bays!!! She'll be out the door in no time at this rate!
She was very tired after her move and her big day on low flow.
Dr Tan thinks she'll be really focussing on feeding within the next 2 weeks, she just needs to get bigger and take suck feeds now!! I reckon she'll be home in July sometime!
8.30pm- She was having frequent desats to the low 80's and was put back up to 0.08, currently on 0.06 and back on caffiene.
Blood gas normal.
38+6
Things just keep getting brighter and better!! Jasmine is ultra amazing! She had a great breastfeed this morning, hooked in like there was no tomorrow!
Docs were impressed with her, she has Flora now. Flora hasnt seen her since the HFO! She's keento do a download next week and Jazz is allowed 3 breastfeeds in a row and 1 bottle overnight!
vernight she had the biggest, continuous poo the nurse has ever seen!! lol
Jan, the social worker, came to see me this afternoon, we are having "THE FAMILY MEETING" on Friday!!!! The family meeting is when its close to home time! I cried all the way home I was so happy!
Tonight she was doing very well.
She got a big let down and passed out drunk! Was on low flow in 0.08. o2 on high flow between 26-30%
Has a very sore looking bottom, I had been putting sorbolene on it, but it was getting worse so I asked Rosemary if there was something else we could use, she got me some icthamol in zinc. (today, 2 yrs down the track. I can safely say icthamol in zinc is amazing stuff and if a pharmacist was smart they'd make it and sell it over the counter, they'd make a fortune!!! Its the only positive of Jazzies admissions since she came home!!!)
Dr Tan is happy with Jazz and has upped her low flow to 4hrs twice a day . She was a good girl all day and at 2pm we weighed and bathed her. She lost 4g, but thats ok, she's working more now that she's having some breastfeeds.
When i put her in the bath she started carrying on and sucking on her hand, she thought she was starved!!! When I washed her face she tried to suck the face washer! Got her dried and dressed and popped her on the breast, she went nuts!!! Got a big feed, 2 huge let downs and had both sides! Passed out VERY drunk!!
8pm- Lyn said she woke with a very sore bum at 5pm, she plastered her with icthamol. She had a cluster of desats with her feed, Lyn thinks its the reflux.
I asked why she doesnt get the reflux with a breast feed, she reckons its 'cos Jazz controls the breastfeed and is able to take her time too, whereas the EBM, fortifier and thickener are just pushed into her tummy relatively quickly.
Low flow 9pm-1am. o2 on high flow 28%, still on a flow of 4
38+1
Jazz was waiting for her feed when i got there, wide awake and looking for her booby!
She latched on and sucked like a champion straight away! Her nurse Jenny, said she'd never seen a prem do so well on the breast!! She says she acts just like any full term newborn!! Well, I guess she's almost a newborn!! 2 more weeks 'til shes 'due'
She fed for 45 minutes and wanted more!!! Had to stop her'cos she got 4 let downs! She certainly didnt want to stop.
Dr Tan thinks shes doing great! He's upping her feeds to 3 hourly and she's back on 6 hrs low flow twice a day. All day she was on 0.06 on low flow, yesterday she was on 0.07
Got to cuddle her most of the day today, it was awesome! When she's on high flow, she's on 26-28% o2.
Aunty Dawn and Jodie came to see her. They both saw her when she was about 2 weeks old and I didnt find out until only recently, that Jodie was a bit traumatised when she saw Jazz. Seeing a baby so tiny and see through can be a very confronting experience and some people really do struggle with it. So they were amazed by how big she had gotten! and they both had a lovely cuddle.
i was overdue to express, again, by 3pm and Jazz got a couple of massive let downs, she passed out drunk very quickly! The nurses thought she was gorgeous!
8pm- Doing wonderfully!!!! Low flow is down to 0.05, tolerating feeds, good temperature.
38+2
Jazz is still absolutely amazing!!!
She was awake from 1am 'til 8am 'cos the poor bugger desperately wanted a suck feed!! The nurses couldnt accomodate her though because they didnt have my permission to give her a bottle!! But they do now. So, azz was thoroughly exhausted after her hard night and too tired for her 9am breastfeed, but did manage a bit of a suck. Dr Tan said she can now have 3-4 suck feeds a day!! So far tolerating them 3 hrly.
And she is doing 6hrs twice a day on low flow, so far, so good.
According to Doreen, when she's on low flow and having 4 suck feeds a day, she might be sent off to Dandenong or Casey, although a lot of the longer term bubs do come home from Monash......I hope she comes home from Monash.
7.40pm- Been great!! o2 is on 28%, sats in the low 90's. Starting her 6 hrs of low flow.
No nurses available for Bay 6 tomorrow so she'll be moved somewhere else for a bit.
38+3
Heart sunk this morning, Jazz got moved to Bay 8. Although I know shes only there cos they were short staffed, its still not nice being back in the critical care bays. Only thing is that I get to catch up and say Hi to a few Bay 8 friends a bit more. On a brighter note, Jazz has hit 100 days old which is yet another milestone to celebrate!! She had a 100 days old certificate made up and she recieved a beautiful '100 days quilt' to commemorate the occasion!!
Had a great breastfeed at 11am, fed for 40mins and didnt want to stop!!
Amanda gave her her first bottle feed last night, she chugged it down really well!! What a legend!! (even Dr David tells me she's a legend!! :))
Ken has put her on 8 hrs twice a day of low flow and if she copes she'll be trialled off high flow tomorrow!! Yay! Just incredible how far she's come and how fast she's improving just in the last two weeks, it amazing!!
She saw the opthalmologist, Marcell, today. The doctors still hadnt been able to see the little white spot, but Marcell did. He said its a congenital cataract. He said its anterior and hopefully it shouldnt cause any vision problems but its something she'll need to be followed up on when shes 6 months old. She has mild ROP now, but Marcell thinks it will rectify itself and will most likely be improved by her next eye test in 2 weeks time.
Got weighed today- 1935g! Had her bath, and another breast feed at 5pm. She'll have one or two bottle feeds overnight.
Currently on low flow she's on 0.05, which will be less than she'll be on when she comes home! If she copes with low flow, she'll move to bay 3 or 4, then in about 2 weeks odd they'll have an idea of whether she'll be likely to come home on oxygen. And she'll probably also be moved to Dandenong, but more than likely will come home from Monash if shes coming home on o2.
All she needs now is to get big and take all suck feeds, and come off her meds.
11.20pm- Doing great on low flow, still 0.05. Might just stay off high flow completely!!! About to have her bottle, and if she's awake, another will be offered at 2am
38+4
Got in at 8am. Jazz had a good night and had a bottle at 2am. Amanda said she took it well. She was moved back into Bay 5 this morning after her breastfeed, thank goodness were out of NICU again!! Dr Tan has taken her off high flow, she's now on 0.04 on low flow!!
Cathy had her in Bay 5 today and was stunned, its the first time she's seen her since she was in NICU, she kept saying "she's a real little miracle!!!" very loudly in a very asian accent, it was quite funny!! And of course I was very proud!!! Cathy just cant get over how well she's doing. No one really expected her to get off the HFO!!
Cathy even had her o2 down to 0.02 for a couple of hours today! Incredible!!
Co2 results came back - 49!!! Awesome!!
She settled very well back in Bay 5 and even attempted a feed at 11am- but really she just wanted to lick and grin!!
Saturating beautifully on the low flow!
We were interviewed and had lots of pics taken for an article in the leader newspaper, so Jazz will be in there next week sometime!
Still doing great tonight!!!
38+5
In for a feed at 8am again. We're back staying with Mum and Dad so they can get the kids to school while I go in and feed Jazz. Jazz just wanted to sleep this morning though.
She had Gary today, he's really lovely and sings and talks all the time to the bubs.
Dr tan is so happy with Jazz that he is taking her off caffiene and said she'll have her first download next week! A download is where they record all her oxygen and heart rate sats via the oximeter all night, then download and interpret that information to understand exactly how much oxygen is required. He said it could even be possible for her to come home without oxygen!! That is something I initially NEVER expected, I was under the impression that home oxygen was basically standard for a micro prem due to the severity of the chronic lung disease they cop!!!
The nurses however, are pretty sure she'll come home with it, they said its very unusual for a 24 weeker to go home with no oxygen....for me, just that Dr Tan thinks its possible is testament to how well he believes she's doing!!! Whether she has it or not, she's amazing and a true miracle!!!!!!
This afternoon around 1pm Jazz was transferred to Bay 3!!! Incredible!!! She's just flying through those bays!!! She'll be out the door in no time at this rate!
She was very tired after her move and her big day on low flow.
Dr Tan thinks she'll be really focussing on feeding within the next 2 weeks, she just needs to get bigger and take suck feeds now!! I reckon she'll be home in July sometime!
8.30pm- She was having frequent desats to the low 80's and was put back up to 0.08, currently on 0.06 and back on caffiene.
Blood gas normal.
38+6
Things just keep getting brighter and better!! Jasmine is ultra amazing! She had a great breastfeed this morning, hooked in like there was no tomorrow!
Docs were impressed with her, she has Flora now. Flora hasnt seen her since the HFO! She's keento do a download next week and Jazz is allowed 3 breastfeeds in a row and 1 bottle overnight!
vernight she had the biggest, continuous poo the nurse has ever seen!! lol
Jan, the social worker, came to see me this afternoon, we are having "THE FAMILY MEETING" on Friday!!!! The family meeting is when its close to home time! I cried all the way home I was so happy!
Tonight she was doing very well.
37 weeks!!
Jasmine is totally and utterly magnificent as usual!!
Kai came in to see Jazzie today, he was so great, he was taking lots of photos and videos of her!! And it turns out hes actually very good at taking photos!
When we got there, she was crying and grumping 'cos she was hungry, and also had a belly full of wind. As soon as I sat her up in the isolette she burped.
She had a weigh- 1776g!!! Then had a bath and really enjoyed it! Got her dried and dressed, had a cuddle....then Kai had a cuddle. He was very, very chuffed to bethe first of the siblings to have a cudlle with her!!!
Shes doing really well on the low flow, and sats around 28-30% on CPAP.
Still tolerating 10ml and 11ml feeds alternating. Tummy girth 30cm.
Leanne did her hand and foot prints again, they are sooo big!!!! Its awesome to see how much shes grown!
10pm- she'd gone back onto CPAP at 8pm, currently on 28% o2. I'll have to buy her some new clothes 'cos soon she'll be in her big girl open cot!!! As soon as she hits 1800g!!!
37+1
Jazz amazes me, she's hit the ground running now!!
Arvand came to see me, Etta and some other doctors are taking over her carenow. He said she'll begin upgrading to 2 hrly feeds, and when shes tolerating that she'll start low flow 8 hrs at a time!!!
Had my beautiful cuddle, she had a little play at the breast but mostly wanted to sleep. Held her for 2 and a half hours, wish it couldve gone longer.
This afternoon, the kids and I went out to buy outfits for Jazz, she needs to be nice and warm when she's moved into the open cot which will be very soon!
She had Yvonne looking after her tonight. 8pm update- Doing great, 28% o2 and just had a 15ml feed, she'd be having another 5ml soon and by 1pm she would be on 2 hrly feeds like a big girl!! So far she was tolerating the new feeding regime.
37+2
Oh my god this child is amazing!! never ceases to astound me! Mum and I got in at 9.30am, Leah had her and said she's now on high flow and being cycled onto low flow!!! The magic of steroids in action! She's doing so well that she's now offivially a part of the red team- special care!!!
They were going to move her to Bay 6, which is usually quarantine, but is currently Bay 4's spill over, but got really busy with admissions.
Nanny got to put her on the scales and helped give her a bath, Jazz loves the bath now.
Physio came to see her as well and she'll have a physio assessment soon, but looks good so far. Had my usual cuddle, still the highlight of my day!!
Shes still tolerating 2 hrly feeds.
8pm- Jo said shes a star....I know!!!
Having her vaccinations right now. Had panadol before and will continue having it over night. Her o2 went up to 40% but they said it was a mechanical error something to do with the humidity, it has since come down to 35%.
10.30pm She's been moved into her big girl cot!! and shes doing fine! 33-36% o2
37+3
Rang at 8am- Jo had her again and said she's still a star!! Had one big braddy and 1 desat an hour after her vaccinations, but doing great otherwise!
Maintaining her temperature in the open cot so far, o2 28%!!
She didnt go on low flow today, Jo thought she should have a bit of a rest after such a big couple of days. David has her for the rest of the week, he thinks she's doing extremely well! Everyone's very inpressed with her!
Jo thinks she'll probably be home in 6-8 weeks, that'll be late July-early August!! So not long after her due date! After seeing so many micros staying in MUCH longer than their due dates, this is amazing to me!!
She's looking great in her big girl cot. Had to get mum to get some more bankets.
Bec, Ava and Bec's mum came to visit and couldnt believe how much she's grown!! Ava was an absolute champion and got home before her due date!! What a star!!
Ava has grown heaps and she's just gorgeous!
Jo thinks Jazz may have reflux which is really common in prems, but thinks its fairly mild. Jazz will start having an actual breastfeed tomorrow!!!!! Then in the next week or 2 it'll go to 2 a day! She's also going to go up to 3 hrly feeds soon!
8pm- Best behaved! No desats!! 30% o2
37+4
Jazz had her first real breastfeed today!!!
She was crying for her feed, it was the first proper cry I've heard from her, normally its little grizzles, this was a real cry, but sounded like she was crying "meow", haha
She latched onto the left breast with no worries and pigged out!! A little trouble on the right, but we'll get it sorted. She got two let downs and was very 'drunk' and passed out! Slept 'til her next feed so there was no wondering if she'd got enough!
We are able to breastfeed once a day now!
Temperature was a little low after her feed so no weigh today. Had blood gas done-51, what a legend!!
Doing great on high flow, still getting a break from low flow due to immunisations, having the RSV shot tonight or tomorrow, so she'll probably not go back onto low flow for another day yet.
Natalie will be coming to talk to me tomorrow about what will be happening now that shes in special care, and what happens when we go home!! Wow! Getting exciting now!! She'll be home soon!
Cant wait to get home. NBS is a very sad place sometimes. One of Jazzies Bay 5 roomies passed last night, she was 6 months old and had been almost term when she was born, sadly she had an incurable degenerative lung problem. She was so chubby and beautiful and had the most gorgeous eyelashes. I had bumped into her mum in the cafe and told her how beautiful Maria was.....she responded by breaking down and saying Maria wasnt coming home, I cried and said im so sorry.....what do you say??? Its just heartbreaking. Too many beautiful little lives lost. I dont know how the nurses cope, they are amazing people to do what they do.
Jazz was moved to bay 6 this afternoon because Bay 5 is specifically for CPAP babies and they needed Jazzies spot, but she wont go to bay 4 'til shes off high flow.
She was unsettled at first with her new room, but settled fairly quickly and is great! o2 isat 30% and she had a huge poo and wee'd all over her clothes.
37+5
8am- Claire said she's been behaving all night, o2 30%, sats 95-96
When I got in, the doctors thought she might be unwell. They were worried once again about her girth, which had gone up to 33.5cm.
She was nil by mouth for 4 hrs, abdominal x-ray showed a lot of gas and a bit of impacted poo. Shehad a suppository and was allowed to have a breast feed.
She went nuts on the breast! I was overdue to express and told them she might get a lot, she got 2 big let downs and drank really well, although at one stage she did forget to breahe!!
Haemoglobin is a bit low, David is considering whether to give her a transfusion. She still hadnt had a poo by the time I left at 3.30pm. She seems to like to just hang on to those suppositories nowadays!!
They are weaning her off high flow now. Her flow reduced from 6 to 5 and then down to 4.
Had her weigh today - 18549g. She had her RSV shot today, began crying 'til she got her beloved sucrose!!
7pm- Fausta has her tonight, she had an 8ml aspirate at 5pm- they think she mustve gotten a ripper of a breast feed!!!
11.40pm- 1 desat, not unusual after an immunisation. Straining and squirming, but no poo yet. Temp is fine, o2 is 30%. Haemoglobin is still low but they havent decided on the top up yet.
Had 2 hrs low flow today with no dramas, and only had 4 desats for the whole day!!! Wow!!!
37+6
7.30am-She has Mel. Being good, although she was a bit naughty at 5am with 1 braddy and 1 desat. Temp fine. HUGE poo, lost 2.5cm girth!!
Had a lovely breast feed at 11am. She just didt want to stop! Every time I sat her up for a burp she just went nuts for more!!! o2 28-30% but was on 24% part of the day.
Came back at 7pm for a second feed ( she's allowed 2 a day now!) She was so tired, and just kept grinning with the booby in her mouth!!!! Starting tomorrow it'll be 9am and 3pm breast feeds!!
Kai came in to see Jazzie today, he was so great, he was taking lots of photos and videos of her!! And it turns out hes actually very good at taking photos!
When we got there, she was crying and grumping 'cos she was hungry, and also had a belly full of wind. As soon as I sat her up in the isolette she burped.
She had a weigh- 1776g!!! Then had a bath and really enjoyed it! Got her dried and dressed, had a cuddle....then Kai had a cuddle. He was very, very chuffed to bethe first of the siblings to have a cudlle with her!!!
Shes doing really well on the low flow, and sats around 28-30% on CPAP.
Still tolerating 10ml and 11ml feeds alternating. Tummy girth 30cm.
Leanne did her hand and foot prints again, they are sooo big!!!! Its awesome to see how much shes grown!
10pm- she'd gone back onto CPAP at 8pm, currently on 28% o2. I'll have to buy her some new clothes 'cos soon she'll be in her big girl open cot!!! As soon as she hits 1800g!!!
37+1
Jazz amazes me, she's hit the ground running now!!
Arvand came to see me, Etta and some other doctors are taking over her carenow. He said she'll begin upgrading to 2 hrly feeds, and when shes tolerating that she'll start low flow 8 hrs at a time!!!
Had my beautiful cuddle, she had a little play at the breast but mostly wanted to sleep. Held her for 2 and a half hours, wish it couldve gone longer.
This afternoon, the kids and I went out to buy outfits for Jazz, she needs to be nice and warm when she's moved into the open cot which will be very soon!
She had Yvonne looking after her tonight. 8pm update- Doing great, 28% o2 and just had a 15ml feed, she'd be having another 5ml soon and by 1pm she would be on 2 hrly feeds like a big girl!! So far she was tolerating the new feeding regime.
37+2
Oh my god this child is amazing!! never ceases to astound me! Mum and I got in at 9.30am, Leah had her and said she's now on high flow and being cycled onto low flow!!! The magic of steroids in action! She's doing so well that she's now offivially a part of the red team- special care!!!
They were going to move her to Bay 6, which is usually quarantine, but is currently Bay 4's spill over, but got really busy with admissions.
Nanny got to put her on the scales and helped give her a bath, Jazz loves the bath now.
Physio came to see her as well and she'll have a physio assessment soon, but looks good so far. Had my usual cuddle, still the highlight of my day!!
Shes still tolerating 2 hrly feeds.
8pm- Jo said shes a star....I know!!!
Having her vaccinations right now. Had panadol before and will continue having it over night. Her o2 went up to 40% but they said it was a mechanical error something to do with the humidity, it has since come down to 35%.
10.30pm She's been moved into her big girl cot!! and shes doing fine! 33-36% o2
37+3
Rang at 8am- Jo had her again and said she's still a star!! Had one big braddy and 1 desat an hour after her vaccinations, but doing great otherwise!
Maintaining her temperature in the open cot so far, o2 28%!!
She didnt go on low flow today, Jo thought she should have a bit of a rest after such a big couple of days. David has her for the rest of the week, he thinks she's doing extremely well! Everyone's very inpressed with her!
Jo thinks she'll probably be home in 6-8 weeks, that'll be late July-early August!! So not long after her due date! After seeing so many micros staying in MUCH longer than their due dates, this is amazing to me!!
She's looking great in her big girl cot. Had to get mum to get some more bankets.
Bec, Ava and Bec's mum came to visit and couldnt believe how much she's grown!! Ava was an absolute champion and got home before her due date!! What a star!!
Ava has grown heaps and she's just gorgeous!
Jo thinks Jazz may have reflux which is really common in prems, but thinks its fairly mild. Jazz will start having an actual breastfeed tomorrow!!!!! Then in the next week or 2 it'll go to 2 a day! She's also going to go up to 3 hrly feeds soon!
8pm- Best behaved! No desats!! 30% o2
37+4
Jazz had her first real breastfeed today!!!
She was crying for her feed, it was the first proper cry I've heard from her, normally its little grizzles, this was a real cry, but sounded like she was crying "meow", haha
She latched onto the left breast with no worries and pigged out!! A little trouble on the right, but we'll get it sorted. She got two let downs and was very 'drunk' and passed out! Slept 'til her next feed so there was no wondering if she'd got enough!
We are able to breastfeed once a day now!
Temperature was a little low after her feed so no weigh today. Had blood gas done-51, what a legend!!
Doing great on high flow, still getting a break from low flow due to immunisations, having the RSV shot tonight or tomorrow, so she'll probably not go back onto low flow for another day yet.
Natalie will be coming to talk to me tomorrow about what will be happening now that shes in special care, and what happens when we go home!! Wow! Getting exciting now!! She'll be home soon!
Cant wait to get home. NBS is a very sad place sometimes. One of Jazzies Bay 5 roomies passed last night, she was 6 months old and had been almost term when she was born, sadly she had an incurable degenerative lung problem. She was so chubby and beautiful and had the most gorgeous eyelashes. I had bumped into her mum in the cafe and told her how beautiful Maria was.....she responded by breaking down and saying Maria wasnt coming home, I cried and said im so sorry.....what do you say??? Its just heartbreaking. Too many beautiful little lives lost. I dont know how the nurses cope, they are amazing people to do what they do.
Jazz was moved to bay 6 this afternoon because Bay 5 is specifically for CPAP babies and they needed Jazzies spot, but she wont go to bay 4 'til shes off high flow.
She was unsettled at first with her new room, but settled fairly quickly and is great! o2 isat 30% and she had a huge poo and wee'd all over her clothes.
37+5
8am- Claire said she's been behaving all night, o2 30%, sats 95-96
When I got in, the doctors thought she might be unwell. They were worried once again about her girth, which had gone up to 33.5cm.
She was nil by mouth for 4 hrs, abdominal x-ray showed a lot of gas and a bit of impacted poo. Shehad a suppository and was allowed to have a breast feed.
She went nuts on the breast! I was overdue to express and told them she might get a lot, she got 2 big let downs and drank really well, although at one stage she did forget to breahe!!
Haemoglobin is a bit low, David is considering whether to give her a transfusion. She still hadnt had a poo by the time I left at 3.30pm. She seems to like to just hang on to those suppositories nowadays!!
They are weaning her off high flow now. Her flow reduced from 6 to 5 and then down to 4.
Had her weigh today - 18549g. She had her RSV shot today, began crying 'til she got her beloved sucrose!!
7pm- Fausta has her tonight, she had an 8ml aspirate at 5pm- they think she mustve gotten a ripper of a breast feed!!!
11.40pm- 1 desat, not unusual after an immunisation. Straining and squirming, but no poo yet. Temp is fine, o2 is 30%. Haemoglobin is still low but they havent decided on the top up yet.
Had 2 hrs low flow today with no dramas, and only had 4 desats for the whole day!!! Wow!!!
37+6
7.30am-She has Mel. Being good, although she was a bit naughty at 5am with 1 braddy and 1 desat. Temp fine. HUGE poo, lost 2.5cm girth!!
Had a lovely breast feed at 11am. She just didt want to stop! Every time I sat her up for a burp she just went nuts for more!!! o2 28-30% but was on 24% part of the day.
Came back at 7pm for a second feed ( she's allowed 2 a day now!) She was so tired, and just kept grinning with the booby in her mouth!!!! Starting tomorrow it'll be 9am and 3pm breast feeds!!
Friday, 24 June 2011
36 weeks!! incredible week
Amanda has Jazz again this morning, and so far Jazz is being very good for her! O2 22-24%, currently on 24% satting ast 90, co2 46.
She was good when i was there, still very squirmy and seems to have a belly full of wind, poor thing. Had a lovely cuddle, I love cuddling her, I get to give her lots of kisses. I suppose a positive of her being born so ealry is that I can cuddle and kiss her more than she wouldve gotten if she had gone to term!
8.30pm-Rebecca had her. Jazz has graduated onto bubble CPAP! and is doing fine! And her flow has decreased, just another step closer to graduating off CPAP altogether!
Rebecca is very impressed with her! Currently on 27% o2 and tolerating her 10ml feeds!
36+1
Jazz has put on 100g!! But looking at her poor tummy I think its all poo!!!
She's not overly thrilled at being on buble CPAP 'cos she has to work harder! Her oxygen is between 25-30%. Feeds have been reduced to 9ml to give her tummy a break, she'llbe ok once she starts pooing properly again! Co2 is up to 58, but they think thats fine. Haemoglobin is 84 today, yesterday it was 78, so shes making blood cells ok and hopefully will not need any more blood transfusions! What a clever girl!
Leanne had her today, got a breast contact cuddle, she loves booby!! She was saturating beautifully on low flow. Spent the whole cuddle straining and squeeking!, she managed a bit of a poo, but not enough!
When she went back into the isolette, I massaged her tummy lots, then Leanne poked a lubricated cotton bud up her bottom a little to see if that would help, she ended up having a couple of huge poo's!! I kept massaging and Leanne used two more cotton buds, poor poppet, but it worked!
When I left her, she was on her side on 24% o2.
Rang at 5pm- Amanda has her again. She was now on 28%, on her back, she hates her back, I reckon desatting on her back is her little form of tanty to try and get her own way!! Like those kids who hold their breath and turn blue in an effort to panic their parents into submission!!! She was still very squirmy, but hadnt had any more poo's. Will possibly have another suppository later if she doesnt get that bowel going! After the big poo she'd had earlier, her girth had reduced by 1.5cm, bringing it down to 29cm......if only it were that easy for us to lose girth!!!!!!!!
11.50pm- 28-30% o2. Still up and down with the desats.
Had her suppository, no poos so far.
36+2
8.45am- Amanda has her again today and shes been a bit ratty, currently sucking her summy and listening to her music. On her back, 28% and her flow has been turned down more.
She spent most of the day on 25%. Big girl had 2 and a half hours of low flow today!! Saturated beautifully and coped extremely well!! Had breast contact for half an hour and she was very squirmy, straining and squeeking! Tried a few different ways of burping her and finally got a real burp out of her!!
Still no joy with the poos, she just decided she'll keep the suppository too!
The doctors are very impressed and want to begin increasing her time on low flow!! She is just extraordinary! She'll have more bone bloods done tomorrow and if it comes back ok, she'llstop phosphate and fortifier. The bone bloods are done, and the phosphate etc given because these guys are prone to getting rickets, so they do what they can to avoid that! Fortifier sometimes makes their tummies big like Jazzies.
7pm update- she has Janelle. 24% and behaving
36+3
8am- doing realy well today and currentlydown to air!! on her tummy of course! Very awake and listening to her music. Finally had a big poo this morning!
On 25% when I got there this morning and was cracking the shits over something! Heart rate goes over 200 when she's angry!! Gave her the dummy and she was fine.
weigh today- 1643g!! Awesome!!
Got an hour long cuddle on low flow and loved it as usual. Arvand wants her on low flow 2 hrs twice a day now, way to go Miss Jazzie!!!
Because of that I got to go and express, then come back and have more cuddles and breast contact! for another 1 and a half hours!!!
She went nuuts on the booby, actually guzzled a fair bit, then nearly threw up! Greedy girl! Then got 2 big nurps out of her! She's been pooing lots today.
Had her bone bloods done and didnt even bat an eyelid cos she had sucrose and her dummy! Janelle reckons if she continues going as well as she has, she could even be off CPAP as early as next week!!
9.45pm- fast asleep, beinggood. 26-27%. 6ml aspirate at 5pm (after her salt) nothing at 7pm. only 2 brads for the day.
36+4
8.20am- Had a great night, minimal desats. 27% o2, saturation 97
Got in at 10.30am, expressed, then had a lovely cuddle. Coping well on 2 hours twice a day of low flow, and Arvand said that tomorrow she can begin trialling 4 hrs twice a day!!
She had a bt of a crack at the breast, goes off tap when she loses it!!! She just coped beautifully with the 2 hrs low flow!
Paul and I went in tonight. She'd just gone back onto CPAP and was buggered and fast asleep so we missed out on bathing her together. He said for me to go ahead and do it tomorrow....just quietly, she stinks!!!
Bone bloods are fine! Phosphate has been reduced. Today I noticed a tiny white spot in her iris, but the nurses couldnt see it.
36+5
OMG!!! Walked in today to find Jazz was being moved to bay 5!!!!!!!!!! I watched as she was moved, waited til she was settled, took photos of her in bay 5...then ran out the front in tears of happiness to call mum. My first thought (in my naivety) was that she's not going to die now!!!! Moving from NICU to NICU special care is an enormous step. Its exhilerating and exciting, but its also a little scarey!! And its her first step on her way home!! Shes utterly amazing, an absolute miracle!
She had a weigh and is now a whopping 1689g!! Thats 3 pound 11.5ounces!! Thats a far cry from her birth weight of 526g, 1 pound 2 and a half ounces!!
After her weigh, I gave her her first bath!!! The OT toldme to swaddle her in a cloth nappy to begin with, then slowly remove it as she gets used to the water. She coped well, but didnt want to let go of that nappy!! She was cold when we finished, I dried her off and swaddled her in blankies after she was dressed and cuddled her for an hour, she slept the whole time.
When she was put back into her isolette, she didnt budge, bloody exhausting having a bath for the first time after 87 days!! its hard work!! Even when the low flow was removed and she was put back onto CPAP she barely noticed!! Very big day for the very big girl!!
The Doctors are going to look at her eye tomorrow to check the spot.
8pm- very settled! he pulled her oral gastric tube out and had to get it reinserted, she was none too happy!!! She had a couple of small desats and one big one. on 28% o2.
36+6
Had a great night as usual! 28% all night.
9am- on low flow now until 1pm.
Had parent teacher interviews so I didnt get in 'til 12.30pm, thoughtI'd only get half an hour with her on low flow, but Arvand decided to try her on 6 hrs twice a day!!!!
Arvand came and spoke to me and said she's doing so well that she often doesnt even have her prongs in and still copes!! He found them in her eyes the other day! lol
He said that she'll have an echo over the weekend at some stage to see if the PDA is still there or not.
As its not causing any dramas if it is there they wont need to treat it, but she'd be scanned again before she goes home, then 8 months later etc.
She'll also have her vaccinations next week.
had a wonderful 2 hr cuddle!! She had 10 minutes of breast contact and had a couple of lletdowns, she was slack today and mostly just let it run into her mouth and she just swallowed!! (I have a great let down)
Because she had some milk, she only ,had half a feed but it seems she may have gotten more than we thought, I had to keep sitting her up 'cos she looked like she was going to throw up. She was a very tired girl when she went back onto CPAP at 3pm!
Leanne had her this afternoon and was rapt to see her in Bay 5!!! asked if she thought Jazz might crash and go back a bit, but Leanne reckons she's doing so well that she probably wont.
10pm- Jazzies been good and is awake at the oment. She had her prongs out earlier and desatted to 80, and before that had them out again and dropped to 70. Pretty good though considering thats no oxygen at all!!!! Girth is 30cm, tolerating 10ml and 11ml alternating feeds.
Had a good poo, o2 28-30%
What an incredible week!!! So many changes and every one of them positive. Finally moving closer to the exit and I can begin to see a light at the end of the tunnel.
She was good when i was there, still very squirmy and seems to have a belly full of wind, poor thing. Had a lovely cuddle, I love cuddling her, I get to give her lots of kisses. I suppose a positive of her being born so ealry is that I can cuddle and kiss her more than she wouldve gotten if she had gone to term!
8.30pm-Rebecca had her. Jazz has graduated onto bubble CPAP! and is doing fine! And her flow has decreased, just another step closer to graduating off CPAP altogether!
Rebecca is very impressed with her! Currently on 27% o2 and tolerating her 10ml feeds!
36+1
Jazz has put on 100g!! But looking at her poor tummy I think its all poo!!!
She's not overly thrilled at being on buble CPAP 'cos she has to work harder! Her oxygen is between 25-30%. Feeds have been reduced to 9ml to give her tummy a break, she'llbe ok once she starts pooing properly again! Co2 is up to 58, but they think thats fine. Haemoglobin is 84 today, yesterday it was 78, so shes making blood cells ok and hopefully will not need any more blood transfusions! What a clever girl!
Leanne had her today, got a breast contact cuddle, she loves booby!! She was saturating beautifully on low flow. Spent the whole cuddle straining and squeeking!, she managed a bit of a poo, but not enough!
When she went back into the isolette, I massaged her tummy lots, then Leanne poked a lubricated cotton bud up her bottom a little to see if that would help, she ended up having a couple of huge poo's!! I kept massaging and Leanne used two more cotton buds, poor poppet, but it worked!
When I left her, she was on her side on 24% o2.
Rang at 5pm- Amanda has her again. She was now on 28%, on her back, she hates her back, I reckon desatting on her back is her little form of tanty to try and get her own way!! Like those kids who hold their breath and turn blue in an effort to panic their parents into submission!!! She was still very squirmy, but hadnt had any more poo's. Will possibly have another suppository later if she doesnt get that bowel going! After the big poo she'd had earlier, her girth had reduced by 1.5cm, bringing it down to 29cm......if only it were that easy for us to lose girth!!!!!!!!
11.50pm- 28-30% o2. Still up and down with the desats.
Had her suppository, no poos so far.
36+2
8.45am- Amanda has her again today and shes been a bit ratty, currently sucking her summy and listening to her music. On her back, 28% and her flow has been turned down more.
She spent most of the day on 25%. Big girl had 2 and a half hours of low flow today!! Saturated beautifully and coped extremely well!! Had breast contact for half an hour and she was very squirmy, straining and squeeking! Tried a few different ways of burping her and finally got a real burp out of her!!
Still no joy with the poos, she just decided she'll keep the suppository too!
The doctors are very impressed and want to begin increasing her time on low flow!! She is just extraordinary! She'll have more bone bloods done tomorrow and if it comes back ok, she'llstop phosphate and fortifier. The bone bloods are done, and the phosphate etc given because these guys are prone to getting rickets, so they do what they can to avoid that! Fortifier sometimes makes their tummies big like Jazzies.
7pm update- she has Janelle. 24% and behaving
36+3
8am- doing realy well today and currentlydown to air!! on her tummy of course! Very awake and listening to her music. Finally had a big poo this morning!
On 25% when I got there this morning and was cracking the shits over something! Heart rate goes over 200 when she's angry!! Gave her the dummy and she was fine.
weigh today- 1643g!! Awesome!!
Got an hour long cuddle on low flow and loved it as usual. Arvand wants her on low flow 2 hrs twice a day now, way to go Miss Jazzie!!!
Because of that I got to go and express, then come back and have more cuddles and breast contact! for another 1 and a half hours!!!
She went nuuts on the booby, actually guzzled a fair bit, then nearly threw up! Greedy girl! Then got 2 big nurps out of her! She's been pooing lots today.
Had her bone bloods done and didnt even bat an eyelid cos she had sucrose and her dummy! Janelle reckons if she continues going as well as she has, she could even be off CPAP as early as next week!!
9.45pm- fast asleep, beinggood. 26-27%. 6ml aspirate at 5pm (after her salt) nothing at 7pm. only 2 brads for the day.
36+4
8.20am- Had a great night, minimal desats. 27% o2, saturation 97
Got in at 10.30am, expressed, then had a lovely cuddle. Coping well on 2 hours twice a day of low flow, and Arvand said that tomorrow she can begin trialling 4 hrs twice a day!!
She had a bt of a crack at the breast, goes off tap when she loses it!!! She just coped beautifully with the 2 hrs low flow!
Paul and I went in tonight. She'd just gone back onto CPAP and was buggered and fast asleep so we missed out on bathing her together. He said for me to go ahead and do it tomorrow....just quietly, she stinks!!!
Bone bloods are fine! Phosphate has been reduced. Today I noticed a tiny white spot in her iris, but the nurses couldnt see it.
36+5
OMG!!! Walked in today to find Jazz was being moved to bay 5!!!!!!!!!! I watched as she was moved, waited til she was settled, took photos of her in bay 5...then ran out the front in tears of happiness to call mum. My first thought (in my naivety) was that she's not going to die now!!!! Moving from NICU to NICU special care is an enormous step. Its exhilerating and exciting, but its also a little scarey!! And its her first step on her way home!! Shes utterly amazing, an absolute miracle!
She had a weigh and is now a whopping 1689g!! Thats 3 pound 11.5ounces!! Thats a far cry from her birth weight of 526g, 1 pound 2 and a half ounces!!
After her weigh, I gave her her first bath!!! The OT toldme to swaddle her in a cloth nappy to begin with, then slowly remove it as she gets used to the water. She coped well, but didnt want to let go of that nappy!! She was cold when we finished, I dried her off and swaddled her in blankies after she was dressed and cuddled her for an hour, she slept the whole time.
When she was put back into her isolette, she didnt budge, bloody exhausting having a bath for the first time after 87 days!! its hard work!! Even when the low flow was removed and she was put back onto CPAP she barely noticed!! Very big day for the very big girl!!
The Doctors are going to look at her eye tomorrow to check the spot.
8pm- very settled! he pulled her oral gastric tube out and had to get it reinserted, she was none too happy!!! She had a couple of small desats and one big one. on 28% o2.
36+6
Had a great night as usual! 28% all night.
9am- on low flow now until 1pm.
Had parent teacher interviews so I didnt get in 'til 12.30pm, thoughtI'd only get half an hour with her on low flow, but Arvand decided to try her on 6 hrs twice a day!!!!
Arvand came and spoke to me and said she's doing so well that she often doesnt even have her prongs in and still copes!! He found them in her eyes the other day! lol
He said that she'll have an echo over the weekend at some stage to see if the PDA is still there or not.
As its not causing any dramas if it is there they wont need to treat it, but she'd be scanned again before she goes home, then 8 months later etc.
She'll also have her vaccinations next week.
had a wonderful 2 hr cuddle!! She had 10 minutes of breast contact and had a couple of lletdowns, she was slack today and mostly just let it run into her mouth and she just swallowed!! (I have a great let down)
Because she had some milk, she only ,had half a feed but it seems she may have gotten more than we thought, I had to keep sitting her up 'cos she looked like she was going to throw up. She was a very tired girl when she went back onto CPAP at 3pm!
Leanne had her this afternoon and was rapt to see her in Bay 5!!! asked if she thought Jazz might crash and go back a bit, but Leanne reckons she's doing so well that she probably wont.
10pm- Jazzies been good and is awake at the oment. She had her prongs out earlier and desatted to 80, and before that had them out again and dropped to 70. Pretty good though considering thats no oxygen at all!!!! Girth is 30cm, tolerating 10ml and 11ml alternating feeds.
Had a good poo, o2 28-30%
What an incredible week!!! So many changes and every one of them positive. Finally moving closer to the exit and I can begin to see a light at the end of the tunnel.
35 weeks
9am
Good, occasional desats, 28-30% o2
Doreen has Jazz today. Couldnt stay long today unfortunately. But while I was there she was in 29%. Shes scrumptious as usual and while I was there she did two massive, EXTREMELY loud follow-through farts!!! Amazing that such a sound could come out of such a tiny bum!!!
She was weighed this afternoon and had put on 24g, up to 1392g!! Luane had her this afternoon and said she was great, she said she was very surprised at how well she's doing!! A few small desats, 27% o2.
11pm- 26-27%, no change, just what I like to hear!! What a champion!!!
35+1
Cassie had her today. Jasmine is still astounding everyone!!! I rang early this morning, she had a very settled night, on her tummy, 25% oxygen.
Currently she was on her side in 27%
When I got in, she was great, but VERY squirmy, I think the poor poppet has tummy pains!
Had a lovely hour long cuddle with Jazz on low flow the whole time and saturating really high until she got a bit too much milk, had reflux and braddied. I cant put words to the pride and joy you feel as you're holding your tiny, on low flow and drinking from the breast, when the doctors do their rounds!! To see how thrilled, yet surprised they are that shes doing THAT well is great!!
Shes looking a bit pale, she'll have a blood test overnight.
7pm update- at 5.30pm she had a severe desat to 40, but thankfully picked herself up, she spent half an hour up and down with desats. Currently on 27%
Luane has her and said she copped a massive, never ending, 4 nappy poo!! lol, what a good girl to leave all the yuckiest poos for the nurses!!
35+2
8am- Ben has her today. She had an ordinary night. And had a cluster of desats between 4 and 7am, but has been good since Ben's had her. She got down to 26% o2 overnight, prone of course, and was now on 28%.
When I got in she'd had a huge poo, I cleaned her up and got her ready for weighing, just about to get her out and onto the scales and the little bugger decided she needed more poo's!!.......then more again!!!
Got her on the scales, shes up 31g to 1423g!! Almost ready for bath time!!
After weighing, I got a cuddle for a while. On low flow again, brilliant of course!!!
She was back on her tummy when I left and her oxygen went down to 24%
7.30pm update- She's been playing up a bit according to Luane, sml but frequent desats, o2 27-28%
35+3
Jasmine is still kicking goals!!! Oxygen 25-30%. Very, very squirmy, think she has lots of wind!
She's having more desats, but not profound.
During our cuddle today Jazz was desatting, even had a couple down to 50! I couldnt understand, but when I went to reposition her, I noticed her prongs were out!! Joanne thought perhaps her prongs were too small now and too much o2 was leaking so she put in some larger ones.
On 28% when I left.
8pm update- Luane said she's settled beautifully and on 27% and it could even go down more!
35+4
Desatting a bit on her back as usual, hardly any though since she's been prone. Beth has her today.
26% oxygen, co2 51, What a star!!!!
When I got back from having a mastitis ultrasound, she was satting up to 97% and with only one prong in...and in the wrong nostril to boot!!!
Tried to fix it, but she cracked the shits hard!! Heart rate went up to 209, bad tempered bugger!
evening update- Russel has her tonight, her girth was 27 at 6pm, then 29.5 at 8pm. He popped in an oral gastric tube and aspirated 18ml of air from her poor little tummy!!! o2 25-26%
34+5
Had to get the car serviced today so I couldnt get in 'til late night with Paul. I missed her soooo much!!!
Rang a few times
8am- o2 25-27%, occasional desats, 1 fleeting braddy. Had a suppository at midnight, poo'd at 5am.
later- she was a good girl for Russel, o2 unchanged.
6.30pm- Good, but keeps taking the prongs out!, o2 25%
Paul got a cuddle. She was desatting lots 'til she got her dummy!
34+6
Weighed today.......1505g!!!!!!!!!!!!!
Bath time next time Paul comes in!!
Had a good day today, was on 27% overnight. Girth still large. Claire had her today. Got a lovely cuddle and she saturated great!
7pm- Leaanne has her- being good. O.J tube has been replaced by an oral gastric tube and shes up to 10ml per hour feeds and tolerating them so far.
Tummy 28cm down from 30cm.
Had another suppository
Good, occasional desats, 28-30% o2
Doreen has Jazz today. Couldnt stay long today unfortunately. But while I was there she was in 29%. Shes scrumptious as usual and while I was there she did two massive, EXTREMELY loud follow-through farts!!! Amazing that such a sound could come out of such a tiny bum!!!
She was weighed this afternoon and had put on 24g, up to 1392g!! Luane had her this afternoon and said she was great, she said she was very surprised at how well she's doing!! A few small desats, 27% o2.
11pm- 26-27%, no change, just what I like to hear!! What a champion!!!
35+1
Cassie had her today. Jasmine is still astounding everyone!!! I rang early this morning, she had a very settled night, on her tummy, 25% oxygen.
Currently she was on her side in 27%
When I got in, she was great, but VERY squirmy, I think the poor poppet has tummy pains!
Had a lovely hour long cuddle with Jazz on low flow the whole time and saturating really high until she got a bit too much milk, had reflux and braddied. I cant put words to the pride and joy you feel as you're holding your tiny, on low flow and drinking from the breast, when the doctors do their rounds!! To see how thrilled, yet surprised they are that shes doing THAT well is great!!
Shes looking a bit pale, she'll have a blood test overnight.
7pm update- at 5.30pm she had a severe desat to 40, but thankfully picked herself up, she spent half an hour up and down with desats. Currently on 27%
Luane has her and said she copped a massive, never ending, 4 nappy poo!! lol, what a good girl to leave all the yuckiest poos for the nurses!!
35+2
8am- Ben has her today. She had an ordinary night. And had a cluster of desats between 4 and 7am, but has been good since Ben's had her. She got down to 26% o2 overnight, prone of course, and was now on 28%.
When I got in she'd had a huge poo, I cleaned her up and got her ready for weighing, just about to get her out and onto the scales and the little bugger decided she needed more poo's!!.......then more again!!!
Got her on the scales, shes up 31g to 1423g!! Almost ready for bath time!!
After weighing, I got a cuddle for a while. On low flow again, brilliant of course!!!
She was back on her tummy when I left and her oxygen went down to 24%
7.30pm update- She's been playing up a bit according to Luane, sml but frequent desats, o2 27-28%
35+3
Jasmine is still kicking goals!!! Oxygen 25-30%. Very, very squirmy, think she has lots of wind!
She's having more desats, but not profound.
During our cuddle today Jazz was desatting, even had a couple down to 50! I couldnt understand, but when I went to reposition her, I noticed her prongs were out!! Joanne thought perhaps her prongs were too small now and too much o2 was leaking so she put in some larger ones.
On 28% when I left.
8pm update- Luane said she's settled beautifully and on 27% and it could even go down more!
35+4
Desatting a bit on her back as usual, hardly any though since she's been prone. Beth has her today.
26% oxygen, co2 51, What a star!!!!
When I got back from having a mastitis ultrasound, she was satting up to 97% and with only one prong in...and in the wrong nostril to boot!!!
Tried to fix it, but she cracked the shits hard!! Heart rate went up to 209, bad tempered bugger!
evening update- Russel has her tonight, her girth was 27 at 6pm, then 29.5 at 8pm. He popped in an oral gastric tube and aspirated 18ml of air from her poor little tummy!!! o2 25-26%
34+5
Had to get the car serviced today so I couldnt get in 'til late night with Paul. I missed her soooo much!!!
Rang a few times
8am- o2 25-27%, occasional desats, 1 fleeting braddy. Had a suppository at midnight, poo'd at 5am.
later- she was a good girl for Russel, o2 unchanged.
6.30pm- Good, but keeps taking the prongs out!, o2 25%
Paul got a cuddle. She was desatting lots 'til she got her dummy!
34+6
Weighed today.......1505g!!!!!!!!!!!!!
Bath time next time Paul comes in!!
Had a good day today, was on 27% overnight. Girth still large. Claire had her today. Got a lovely cuddle and she saturated great!
7pm- Leaanne has her- being good. O.J tube has been replaced by an oral gastric tube and shes up to 10ml per hour feeds and tolerating them so far.
Tummy 28cm down from 30cm.
Had another suppository
34 weeks gestation- onward and upward!!
Wow, its hard to believe that just 10 weeks ago, I was told Jazz was going to die, and yet here she is, still kicking....literally!!! Its wierd to go through the whole NICU process, Im finding time to be a very strange concept at the moment, in some respects it seems to go slow, but in many more it seems to be flying! And every day, every gram, every feed, every breath and even every poo is a massive milestone!!
Its a strange ride that we're on.....
3 days post roids and shes still on between 26-28% oxygen, although Luan had her down to 23% overnight. Heart rate has been going a little high at times. That happened last time she finished the roids too.
When I looked through my journal- she was on 27% o2 when she had her final dose last time, next day was 37% o2, by day 3 post roids she was on 42%. This time she finished on 23%- next day 26-28% and day 3 post roids is basically the same, 26-28%.......much better than last time, trying not to get my hopes up, but its difficult not to!!!
Had a lovely cuddle today, shes so gorgeous!
She cracked the shits twice while I was there today, both times 'cos she lost her dummy! She was crying, kicking and throwing her arms around 'til she got her beloved dummy back!
Her girth reduced by 1cm from 27cm to 26cm, but its still soft.
7pm update- Claire said she was doing great still on 26% and sleeping soundly. They havent done a blood gas yet. Satting low 90's like she has most of the day!
34+1
Jazz got weighed this morning and had put on 79g!!! 1283g! Still doing extremely well, oxygen 26-28% and co2 is in the mid 50's.
Didnt have a cuddle today 'cosI didnt want to tire her out too much, I want her to keep doing well so she remains extubated.
Claire had her o2 down to 25, and so did sandy tonight!
She cracked it this afternoon, wouldnt settle rooting around and doing shark attaks on her dummy and just going insane! I was an hor late to express 'cos she wanted me to keep holding her dumy for her!
34+2
Oxygen still 26-28%, the doctors are impressed! I got a beautiful cuddle today....well, they are always beautiful cuddles!
She did the most massive, loose and extremely revolting poo!!!
Dr Alex is happy shes not rebounding too bad so far! Her haemoglobin is low, so they are keeping an eye on it.
5.15pm- Very well now, but earlier was having continuous desats to 55-60 and her o2 went up to 30%.
Her tape holding the O.J tube inhad slipped down and was over her mouth they said maaybe she's a mouth breather, they retaped it and she improved. Oxygen 26% and satting at 92
9pm- no change....she's just incredible!
34+3
9am- mums morning update- Claire has Jazz again today. Oxygen 26% and satting 93
co2 has come down!!! its now 52.8
When I arrived, Jazz was on 25% o2 and satting 93 then it went to 24% and satting 97-98!!! Then down to 23% and satting at 93, shes amazing!
She was weighed today and has put on 7g, shes now 1291g. Poor poppet was in a mood today- after her weigh, it took ages to settle, she kept taking her prongs out and funnily enough, when they were out she satted at 96 for quite a while!
But she kept desatting to 80 and had a couple down to 69, her o2 had to be put back to26%. Her ventilator was changed over today and she really loved having those annoying prongs out and having the neopuff instead (the neopuff uses a face mask rather than nasal prongs).
evening update- Cathy has her tonight- shes still on 26-27% and is behaving well!
Champion!!!!
34+4
Nanny visited todaay. Jazz was magnificent as always. 29% o2 when we arrived, but down to 26% by the time we left. The nurses had put her in a baby born gro suit!!
Got an amazing cuddle today. This time we had our first breast contact!!! Jazz had a little lick of milk.....and promptly went to sleep! lol
Poor little poppet, during that lick she copped a full letdown and nearly drowned!!! Its amazing to see just how tiny she is compared to my boob!!! My boobs arent huge but compared to Jazz I might as well be Dolly Parton!!!!
One of the younger doctors, Simon, told the new neonatologist in handover that Jazz was remarkable!! He's amazed and impressed that she came from HFO on 80% o2 down to air on CPAP in the beginning of the first course of steroids, then doing so well now after her second course.!!
I think shes remaarkable too!!! She is utterly incredible and we must just be so blessed to have her so healthy and strong!!!
Shes now on 9ml per hour continuous feeds, hopefully she's porked up more when she gets weighed tomorrow!!
Had to go back in tonight because I'd forgotten to take in some milk!!! Good excuse to see her again though anyway!
Claire has her til 9.30pm, and Amanda had her today.
Amanda is jazzies 'lucky' nurse!! Amanda was one of the "hundreds" of people that materialised in the delivery room when Jazz was born, it was Amandas first time going down to delivery to save a premmie! Poor thing, I'm glad her first 24 weeker ended on a good note!!!
Shes had a few desats and just cant stand being on her back!!!
34+5
Oxygen between 26-30%, co2 this morning was 53!!
he had Kim today. We did a weigh, Kim said to have a cuddle 'cos its no more tiring as she has to come out anyway for the weigh. Shes up 77g to 1368g!!
During my cuddle, Kim told me to squeeze some of my milk out to let her taste it, and she actually got onto the nipple and sucked like her life depended on it!!! She spent an hour licking and sucking and satted so well that when she started sucking, Kim put her on low flow!!! The whole time on low flow she satted between 97-100%!!! wow, she LOVES breast feeding!!!
It was just an awesome day. She was on low flow for almost an hour and coped amazingly!!
8.30pm update- Cathy has her tonight, she was amazed with how well she was doing!! She thought she'd be totally exhausted after her big day, but she's still 27-30% mostly sitting on 28% with only a couple of small desats! She reckons we can do it again tomorrow!
34+6
7.30am phone update- Kate has Jazz today, shes on 29-30% with occasional desats, but theyre not profound. B.P a little high, but the cuffs are not always accurate so she'll try again later. co2 is 51!! Shes doing brilliantly!
She was awesome today, well, when is she not awesome!!!! by the end of the day her o2 had reduced to 26%. She's now officially having 1 hr per day of breast contact on low flow!!!!
I bonded with her from the minute she was concieved, I've never felt that I hadnt bonded, actually for me it was the opposite, I've felt extremely bonded!!! So for me the breast contact wasnt about feeling bonded for the first time like it can for a lot of people, but breast contact with your baby, 75 days after she was born is the most special thing ever!! Now theres more I can do to pysically help my child, no longer just a bystander but now an active participant in her growth and development!!!!
She didnt suck a lot today, too sleepy, but she did have lots of lovely licks
Got bloody mastitis again, boo. Its excruciating, it took 45 mins with a hot compress to express a tiny bit of sticky, yellow-green revolting milk......
Its a strange ride that we're on.....
3 days post roids and shes still on between 26-28% oxygen, although Luan had her down to 23% overnight. Heart rate has been going a little high at times. That happened last time she finished the roids too.
When I looked through my journal- she was on 27% o2 when she had her final dose last time, next day was 37% o2, by day 3 post roids she was on 42%. This time she finished on 23%- next day 26-28% and day 3 post roids is basically the same, 26-28%.......much better than last time, trying not to get my hopes up, but its difficult not to!!!
Had a lovely cuddle today, shes so gorgeous!
She cracked the shits twice while I was there today, both times 'cos she lost her dummy! She was crying, kicking and throwing her arms around 'til she got her beloved dummy back!
Her girth reduced by 1cm from 27cm to 26cm, but its still soft.
7pm update- Claire said she was doing great still on 26% and sleeping soundly. They havent done a blood gas yet. Satting low 90's like she has most of the day!
34+1
Jazz got weighed this morning and had put on 79g!!! 1283g! Still doing extremely well, oxygen 26-28% and co2 is in the mid 50's.
Didnt have a cuddle today 'cosI didnt want to tire her out too much, I want her to keep doing well so she remains extubated.
Claire had her o2 down to 25, and so did sandy tonight!
She cracked it this afternoon, wouldnt settle rooting around and doing shark attaks on her dummy and just going insane! I was an hor late to express 'cos she wanted me to keep holding her dumy for her!
34+2
Oxygen still 26-28%, the doctors are impressed! I got a beautiful cuddle today....well, they are always beautiful cuddles!
She did the most massive, loose and extremely revolting poo!!!
Dr Alex is happy shes not rebounding too bad so far! Her haemoglobin is low, so they are keeping an eye on it.
5.15pm- Very well now, but earlier was having continuous desats to 55-60 and her o2 went up to 30%.
Her tape holding the O.J tube inhad slipped down and was over her mouth they said maaybe she's a mouth breather, they retaped it and she improved. Oxygen 26% and satting at 92
9pm- no change....she's just incredible!
34+3
9am- mums morning update- Claire has Jazz again today. Oxygen 26% and satting 93
co2 has come down!!! its now 52.8
When I arrived, Jazz was on 25% o2 and satting 93 then it went to 24% and satting 97-98!!! Then down to 23% and satting at 93, shes amazing!
She was weighed today and has put on 7g, shes now 1291g. Poor poppet was in a mood today- after her weigh, it took ages to settle, she kept taking her prongs out and funnily enough, when they were out she satted at 96 for quite a while!
But she kept desatting to 80 and had a couple down to 69, her o2 had to be put back to26%. Her ventilator was changed over today and she really loved having those annoying prongs out and having the neopuff instead (the neopuff uses a face mask rather than nasal prongs).
evening update- Cathy has her tonight- shes still on 26-27% and is behaving well!
Champion!!!!
34+4
Nanny visited todaay. Jazz was magnificent as always. 29% o2 when we arrived, but down to 26% by the time we left. The nurses had put her in a baby born gro suit!!
Got an amazing cuddle today. This time we had our first breast contact!!! Jazz had a little lick of milk.....and promptly went to sleep! lol
Poor little poppet, during that lick she copped a full letdown and nearly drowned!!! Its amazing to see just how tiny she is compared to my boob!!! My boobs arent huge but compared to Jazz I might as well be Dolly Parton!!!!
One of the younger doctors, Simon, told the new neonatologist in handover that Jazz was remarkable!! He's amazed and impressed that she came from HFO on 80% o2 down to air on CPAP in the beginning of the first course of steroids, then doing so well now after her second course.!!
I think shes remaarkable too!!! She is utterly incredible and we must just be so blessed to have her so healthy and strong!!!
Shes now on 9ml per hour continuous feeds, hopefully she's porked up more when she gets weighed tomorrow!!
Had to go back in tonight because I'd forgotten to take in some milk!!! Good excuse to see her again though anyway!
Claire has her til 9.30pm, and Amanda had her today.
Amanda is jazzies 'lucky' nurse!! Amanda was one of the "hundreds" of people that materialised in the delivery room when Jazz was born, it was Amandas first time going down to delivery to save a premmie! Poor thing, I'm glad her first 24 weeker ended on a good note!!!
Shes had a few desats and just cant stand being on her back!!!
34+5
Oxygen between 26-30%, co2 this morning was 53!!
he had Kim today. We did a weigh, Kim said to have a cuddle 'cos its no more tiring as she has to come out anyway for the weigh. Shes up 77g to 1368g!!
During my cuddle, Kim told me to squeeze some of my milk out to let her taste it, and she actually got onto the nipple and sucked like her life depended on it!!! She spent an hour licking and sucking and satted so well that when she started sucking, Kim put her on low flow!!! The whole time on low flow she satted between 97-100%!!! wow, she LOVES breast feeding!!!
It was just an awesome day. She was on low flow for almost an hour and coped amazingly!!
8.30pm update- Cathy has her tonight, she was amazed with how well she was doing!! She thought she'd be totally exhausted after her big day, but she's still 27-30% mostly sitting on 28% with only a couple of small desats! She reckons we can do it again tomorrow!
34+6
7.30am phone update- Kate has Jazz today, shes on 29-30% with occasional desats, but theyre not profound. B.P a little high, but the cuffs are not always accurate so she'll try again later. co2 is 51!! Shes doing brilliantly!
She was awesome today, well, when is she not awesome!!!! by the end of the day her o2 had reduced to 26%. She's now officially having 1 hr per day of breast contact on low flow!!!!
I bonded with her from the minute she was concieved, I've never felt that I hadnt bonded, actually for me it was the opposite, I've felt extremely bonded!!! So for me the breast contact wasnt about feeling bonded for the first time like it can for a lot of people, but breast contact with your baby, 75 days after she was born is the most special thing ever!! Now theres more I can do to pysically help my child, no longer just a bystander but now an active participant in her growth and development!!!!
She didnt suck a lot today, too sleepy, but she did have lots of lovely licks
Got bloody mastitis again, boo. Its excruciating, it took 45 mins with a hot compress to express a tiny bit of sticky, yellow-green revolting milk......
33 weeks gestation
I have to say, when those steroids work.....they bloody work fast!!! Theyve again been the magic bullet for Jazz.
When I arrived at 8.30am, she was on 39% and by the time I left that afternoon she'd dropped to 33% and finally 29% and saturating beautifully. She was weighed today and ufortunately because shed had to resume the diuretics she'd lost 60g and was 1150g.
Still tolerating continuous feeds and pooing like a champion!
Shes showing signs of being interested in sucking and milk and adores her CPAP dummy, its just a pity she needs someone to sit there and hold it in for her.
Paul, paige, Jazzies eldest brother Chris and I went in to visit tonight. Storm and Kai were at their dads. Chris was amazed and loves Jazz, he said he'll be very protective of her!! Paige of course just adores her baby sister and says she cant wait til she's home and she will halp with nappies and everything! We'll see!
Paul got his first real cuddle tonight. He didnt want it kangaroo style cos he was concerned shed find his chest hair uncomfortable!
33+1
Jazz is growing more and more beautiful; and getting stronger each day. Shes now on 29% oxygen and saturating well, tolerating feeds and co2 is good.
Had my cuddle, love my cuddles!! She was having a major poo day today and did a massive one all over the nurses hand! And when you'd open the isolette door youd be hit with a huge gust of stink!!! She just reeks!!! Looking forward to the day she can have a bath!!
Had my cuddles!!
Evening update- Leanne had her tonight and said she was very cranky for a few hours, leanne tried the music 3 times, dummy, patting her firmly (which worked while she did it but as soon as she stopped jazz was angry again!), until she was prone....then she promptly went to sleep.
In 23% oxygen, co2 in the 40's. Heart rate fine but shot up over 200 when she had her wobbly! Saturating at 90....Im lovin the roids!!
33+2
23% oxygen, co2 in the 50's
Had a few massive poos and the stink from the isolette was ridiculous, so she had her first wash down in the isolette, got weighed fresh nappy.....then poo'd again!
She hasnt lost or gained weight, just maintained. I got a little cuddle while her bedding was changed.
Evening update- on air!!!! 21% , awesome!!! Still on the dexamethazone (steroids) tolerating her continous feeds and behaving beautifully.
33+3
Oxygen between 23 and 25% today. The OT, Bernie came today to show me a developmentally appropriate containment hold massage for azz, Jazzy seemed to enjoy it.
Jazzie shocked Cathryn today it was the first time Cathryn had seen Jazzies temper and she couldnt believe it!! Im in for some trouble with this little chicky Im thinking!!!!!!
One of our friends bubs have RSV, theyre in quarantine and all the chronic lung disease bubs are getting RSV vaccinations, at $1,000.00 a shot, Im so glad I dont have to pay!!!
Jazz wasnt bothered by the injection, she had her magic sucrose and went far, far away to sugarland while they jabbed her! She loves her sucrose!
I didnt get a chance to have a cuddle today. Jazz had a busy day. Her ventilator needed to be changed for servicing, then I held her up in the isolette while her sheets were changed because when the doctor checked her tummy, he didnt do up her nappy properly and she wee'd everywhere!!! She chucked a tanty after that and took ages to settle so no cuddle :(
Dr Alex is really happy with her and seems to think she wont rebound as badly as before when she comes off the steroids again.
Tonight she was still on 25% oxygen and behaving.
33+4
This morning I could smell Jazz before the isolette doors even opened!!!!
She got weighed today 1164g!!! 24g gain!
Had a magnificent 1 hour long kangaroo cuddle, they are thehighlight of my day!
The doctor is very pleased with her and says shes doing well, she has her last dose of steroids tomorrow, he doesnt know how much she'll rebound but hopes its not much.
oxygen 25% co2 48.7
evening update- being a very good girl!!
33+5
23% oxygen, co2 good!!
Had a big blood test today, loved her sucrose so much she didnt even notice the blood test!
Today at 12.30 she had her last dose of roids. hope she does ok!
Missed out on a cuddle today as the nurses were preparing for a new little one to join us.
Evening update- 22-24% o2, a few small desats and co2 low 50's.
33+6
Oxygen has risen a little 26-28%, I hope shes not going to rebound, I dont know if Id cope seeing her reintubated after coming so far. Shes having brief desats, dropping to 80. They werent sure about me having cuddles today, but one of the nurses said she'll be fine. She cracked the shits until I gave her the CPAP dummy and the entire time I held her including when she cracked it, she was saturating between 92-100!
Weighed after cuddles, she put on 64g in 2 days!! and is now 1204g!! Yay
After that she got dressed and snuggled in for a lovely sleep, listening to her music for dreaming MP3.
Rang at 5pm- She had Rachel. Rachel said shes been really settled and sleeping since I left at 2pm.
She had a massive poo this arvo that oozed out the sides of her nappy and covered her sheets. haha, glad I didnt get that one!!!
Her oxygen had to go up to 29%
Otherwise she was being a good girl
When I arrived at 8.30am, she was on 39% and by the time I left that afternoon she'd dropped to 33% and finally 29% and saturating beautifully. She was weighed today and ufortunately because shed had to resume the diuretics she'd lost 60g and was 1150g.
Still tolerating continuous feeds and pooing like a champion!
Shes showing signs of being interested in sucking and milk and adores her CPAP dummy, its just a pity she needs someone to sit there and hold it in for her.
Paul, paige, Jazzies eldest brother Chris and I went in to visit tonight. Storm and Kai were at their dads. Chris was amazed and loves Jazz, he said he'll be very protective of her!! Paige of course just adores her baby sister and says she cant wait til she's home and she will halp with nappies and everything! We'll see!
Paul got his first real cuddle tonight. He didnt want it kangaroo style cos he was concerned shed find his chest hair uncomfortable!
33+1
Jazz is growing more and more beautiful; and getting stronger each day. Shes now on 29% oxygen and saturating well, tolerating feeds and co2 is good.
Had my cuddle, love my cuddles!! She was having a major poo day today and did a massive one all over the nurses hand! And when you'd open the isolette door youd be hit with a huge gust of stink!!! She just reeks!!! Looking forward to the day she can have a bath!!
Had my cuddles!!
Evening update- Leanne had her tonight and said she was very cranky for a few hours, leanne tried the music 3 times, dummy, patting her firmly (which worked while she did it but as soon as she stopped jazz was angry again!), until she was prone....then she promptly went to sleep.
In 23% oxygen, co2 in the 40's. Heart rate fine but shot up over 200 when she had her wobbly! Saturating at 90....Im lovin the roids!!
33+2
23% oxygen, co2 in the 50's
Had a few massive poos and the stink from the isolette was ridiculous, so she had her first wash down in the isolette, got weighed fresh nappy.....then poo'd again!
She hasnt lost or gained weight, just maintained. I got a little cuddle while her bedding was changed.
Evening update- on air!!!! 21% , awesome!!! Still on the dexamethazone (steroids) tolerating her continous feeds and behaving beautifully.
33+3
Oxygen between 23 and 25% today. The OT, Bernie came today to show me a developmentally appropriate containment hold massage for azz, Jazzy seemed to enjoy it.
Jazzie shocked Cathryn today it was the first time Cathryn had seen Jazzies temper and she couldnt believe it!! Im in for some trouble with this little chicky Im thinking!!!!!!
One of our friends bubs have RSV, theyre in quarantine and all the chronic lung disease bubs are getting RSV vaccinations, at $1,000.00 a shot, Im so glad I dont have to pay!!!
Jazz wasnt bothered by the injection, she had her magic sucrose and went far, far away to sugarland while they jabbed her! She loves her sucrose!
I didnt get a chance to have a cuddle today. Jazz had a busy day. Her ventilator needed to be changed for servicing, then I held her up in the isolette while her sheets were changed because when the doctor checked her tummy, he didnt do up her nappy properly and she wee'd everywhere!!! She chucked a tanty after that and took ages to settle so no cuddle :(
Dr Alex is really happy with her and seems to think she wont rebound as badly as before when she comes off the steroids again.
Tonight she was still on 25% oxygen and behaving.
33+4
This morning I could smell Jazz before the isolette doors even opened!!!!
She got weighed today 1164g!!! 24g gain!
Had a magnificent 1 hour long kangaroo cuddle, they are thehighlight of my day!
The doctor is very pleased with her and says shes doing well, she has her last dose of steroids tomorrow, he doesnt know how much she'll rebound but hopes its not much.
oxygen 25% co2 48.7
evening update- being a very good girl!!
33+5
23% oxygen, co2 good!!
Had a big blood test today, loved her sucrose so much she didnt even notice the blood test!
Today at 12.30 she had her last dose of roids. hope she does ok!
Missed out on a cuddle today as the nurses were preparing for a new little one to join us.
Evening update- 22-24% o2, a few small desats and co2 low 50's.
33+6
Oxygen has risen a little 26-28%, I hope shes not going to rebound, I dont know if Id cope seeing her reintubated after coming so far. Shes having brief desats, dropping to 80. They werent sure about me having cuddles today, but one of the nurses said she'll be fine. She cracked the shits until I gave her the CPAP dummy and the entire time I held her including when she cracked it, she was saturating between 92-100!
Weighed after cuddles, she put on 64g in 2 days!! and is now 1204g!! Yay
After that she got dressed and snuggled in for a lovely sleep, listening to her music for dreaming MP3.
Rang at 5pm- She had Rachel. Rachel said shes been really settled and sleeping since I left at 2pm.
She had a massive poo this arvo that oozed out the sides of her nappy and covered her sheets. haha, glad I didnt get that one!!!
Her oxygen had to go up to 29%
Otherwise she was being a good girl
Thursday, 23 June 2011
32 weeks gestation - more ups and downs
32 weeks, amazing to think how far jazz has come in such a short time!! To me she really and truly is an honest to goodness miracle.
Today was a short visit as Storm had a scholarship exam to sit before we visited.
After the exam, Storm and I; and Granny and another big brother, Zak, visited.
Jazz was wearing her first premmie gro suit!! Granny was completely blown away by Jazzies size, but thought she was gorgeous.
Storm got his first real touch, he was instantly in love.
Unfortunately we couldnt hang about because Storm could only take so much!!
She started to become tachycardic at times (high heart rate) and her oxygen had gone up to 32%
32+ 1
It was Mothers day today, and while I loved spending it with Jazz, it was hard to be away from my other beautiful babies!! But they were going to be going out for lunch with their cousins and having a great day despite me not being there. When I arrived, I found that the nurses had made me a beautiful card with Jazzies hand and foot prints on it, just gorgeous and they'd taken a special photo of Jazz and printed it with mothers day 2009 on it.
I also got to have a beautiful Mothers day Kangaroo cuddle.
Jazzies oxygen has increased again to 42%....Im not happy 'bout that!!
She got weighed today, and had put on 52g bringing her up to 1078g!
She spent hours farting like a little champion! And when it was all finished, she had lost 2cm in girth!! Thats a brilliant effort I think!! Its usually poo's that reduce her girth!
10.45pm update, Jazzies oxygen had come down to 39%, and her sats were up and down, and she was still a bit tachycardic
32+2
Still great, but having a few desats, less tachycardic though, oxygen 40%
She was saluting a lot ( it looks like the nazi salute, and they do it when something is stressing them) and I couldnt figure out what her problem was for ages. It turned out to be the open blinds, as soon as I closed them her sats came back up and her arm went down.
Had an appointment with the OT, it went well, shes going to make up a developmental care plan for Jasmine.
32+3
I got to have another big cuddle today, I live for cuddles with Jazz at the moment!!! Its wonderful!
Oxygen at 42%, Im getting concerned that it keeps going up. She had her weigh today and is now 1148g!
She had her eye test today. I had been dreading the eye test because its a bit nasty. They have drops put in their eyes to dilate the pupils, then a clamp is put on the eyelids to keep them open. The opthalmologist then uses the rounded end of a paper clip to gently move the eye around while he looks in it to assess whether or not there is any retinopathy of prematurity. ROP is very common and is where the retinas detatch, often due to oxygen being too high or too low etc. Given that Jazzies oxygen had beeen so up and down I was really worried that she'd have it . This eye test was usually very distressing for the bubs, understandably, so I wanted to be there for her. They give sucrose to the bubs before they do many procedures, once they reach a certain age. So Jazz had sucrose for the first time.....she was in heaven!! lol They put it on her CPAP dummy, which is tiny, but so immense compared to her that it has to be held in her mouth for her to suck it!
She had been desatting a fair bit that day, and despite how nasty that eye test was, the sucrose just sent her into a blissful state of being, she mustve had some sort of sweet filled out of body experience, tripping off to lolly land, because she was relaxed and saturated beautifully the whole time!! It was like anything could be done and she just wouldnt care because she had sweeeet, sweeeet sucrose!!! So it seems I had been worried about nothing when it came to her ability to cope with such a nasty test, and to top it off, her eyes were perfect so far!!!
When I got my evening update, her CRP and white blood count were slighlty elevated.....
32+4
Rang this morning at 4.30 while I was up for expressing, I was a bit concerned about the elevated infection markers.
She was in 50% oxygen, co271 and Natalie thinks she seems a bit off. Her haemoglobin is getting low, so she may need either a blood transfusion, antibiotics, or both. And if she continues struggling she may have to go back onto the IMV setting.
By the time I got there, she had been put back onto the IMV setting and was in 47%, maybe doing all the breaths on her own was a bit too tiring. Thankfully her crp and white cell count are back to normal. Her haemoglobin was still a bit low so shes having her blood transfusion, they thunk that should help reduce her o2 a bit too.
Dr Alex said she's rebounding since the steroids stopped and if she keeps declining she'll need a second course to keep her from being reintubated.
9.50pm
Been good since her transfusion- 50% oxygen.
32+5
According to the nurses, Jazz is doing ok, but not as good as theyd like. Shes on 8ml per hour feeds and tolerating it, and has put on 62g bringing her up to 1.210g!!!
Her oxygen and co2 is still rising. They will do everything they can to avoid it, but she may end up reintubated.
I got a 30min Kangaroo cuddle, not long enough, but magnificent nonetheless!!
When I left that afternoon, she was on 59%o2 and co2 was in the 60's
Rang at around 7.30pm
Nancy had Jazzies o2 down to 40% while she was prone, but it was now back up to 55%, co2 still in the 60's.
Theyve tried putting a different feeding tube in, its an oral jeujeunal tube, the end of the tube, rather than going into her stomach, goes straight into the first part of her intestines. They are wondering about two possibilities - a) her tummy gets too full, putting pressure on her lungs making it difficult to breathe, or b) she has severe reflux.
We'll get an indication if this helps from by midnight.
Midnight- 60% oxygen, co2 mid 50's, starting steroids again.
32+6
Jazz is much better today. Oxygen down to 50% and got to 49% when I left.
Her new feeding tube seems to be working, she gets fed continuously now, small amounts straight into the intestine. Having lots of big poos!!!
She had her music therapy assessment today and coped really well, so now she can begin music therapy. She'll be listening to music for dreaming to help her settle and relax.
I got a short cuddle today and for the first time she was fussing and showing signs that the smell of my milk was driving her wild!! We gave her her cpap dummy and she really enjoyed sucking it. She also started the rooting reflex!! Hopefully this means she'll do well when it comes time for breast contact!
6.27pm- o2 49%, co2 50. Tolerating feeds, respiratory rate drops low.
11.52pm- o2 45%. tolerating feeds.
It had been another huge week!! Hopefully the next week would be better!!
Today was a short visit as Storm had a scholarship exam to sit before we visited.
After the exam, Storm and I; and Granny and another big brother, Zak, visited.
Jazz was wearing her first premmie gro suit!! Granny was completely blown away by Jazzies size, but thought she was gorgeous.
Storm got his first real touch, he was instantly in love.
Unfortunately we couldnt hang about because Storm could only take so much!!
She started to become tachycardic at times (high heart rate) and her oxygen had gone up to 32%
32+ 1
It was Mothers day today, and while I loved spending it with Jazz, it was hard to be away from my other beautiful babies!! But they were going to be going out for lunch with their cousins and having a great day despite me not being there. When I arrived, I found that the nurses had made me a beautiful card with Jazzies hand and foot prints on it, just gorgeous and they'd taken a special photo of Jazz and printed it with mothers day 2009 on it.
I also got to have a beautiful Mothers day Kangaroo cuddle.
Jazzies oxygen has increased again to 42%....Im not happy 'bout that!!
She got weighed today, and had put on 52g bringing her up to 1078g!
She spent hours farting like a little champion! And when it was all finished, she had lost 2cm in girth!! Thats a brilliant effort I think!! Its usually poo's that reduce her girth!
10.45pm update, Jazzies oxygen had come down to 39%, and her sats were up and down, and she was still a bit tachycardic
32+2
Still great, but having a few desats, less tachycardic though, oxygen 40%
She was saluting a lot ( it looks like the nazi salute, and they do it when something is stressing them) and I couldnt figure out what her problem was for ages. It turned out to be the open blinds, as soon as I closed them her sats came back up and her arm went down.
Had an appointment with the OT, it went well, shes going to make up a developmental care plan for Jasmine.
32+3
I got to have another big cuddle today, I live for cuddles with Jazz at the moment!!! Its wonderful!
Oxygen at 42%, Im getting concerned that it keeps going up. She had her weigh today and is now 1148g!
She had her eye test today. I had been dreading the eye test because its a bit nasty. They have drops put in their eyes to dilate the pupils, then a clamp is put on the eyelids to keep them open. The opthalmologist then uses the rounded end of a paper clip to gently move the eye around while he looks in it to assess whether or not there is any retinopathy of prematurity. ROP is very common and is where the retinas detatch, often due to oxygen being too high or too low etc. Given that Jazzies oxygen had beeen so up and down I was really worried that she'd have it . This eye test was usually very distressing for the bubs, understandably, so I wanted to be there for her. They give sucrose to the bubs before they do many procedures, once they reach a certain age. So Jazz had sucrose for the first time.....she was in heaven!! lol They put it on her CPAP dummy, which is tiny, but so immense compared to her that it has to be held in her mouth for her to suck it!
She had been desatting a fair bit that day, and despite how nasty that eye test was, the sucrose just sent her into a blissful state of being, she mustve had some sort of sweet filled out of body experience, tripping off to lolly land, because she was relaxed and saturated beautifully the whole time!! It was like anything could be done and she just wouldnt care because she had sweeeet, sweeeet sucrose!!! So it seems I had been worried about nothing when it came to her ability to cope with such a nasty test, and to top it off, her eyes were perfect so far!!!
When I got my evening update, her CRP and white blood count were slighlty elevated.....
32+4
Rang this morning at 4.30 while I was up for expressing, I was a bit concerned about the elevated infection markers.
She was in 50% oxygen, co271 and Natalie thinks she seems a bit off. Her haemoglobin is getting low, so she may need either a blood transfusion, antibiotics, or both. And if she continues struggling she may have to go back onto the IMV setting.
By the time I got there, she had been put back onto the IMV setting and was in 47%, maybe doing all the breaths on her own was a bit too tiring. Thankfully her crp and white cell count are back to normal. Her haemoglobin was still a bit low so shes having her blood transfusion, they thunk that should help reduce her o2 a bit too.
Dr Alex said she's rebounding since the steroids stopped and if she keeps declining she'll need a second course to keep her from being reintubated.
9.50pm
Been good since her transfusion- 50% oxygen.
32+5
According to the nurses, Jazz is doing ok, but not as good as theyd like. Shes on 8ml per hour feeds and tolerating it, and has put on 62g bringing her up to 1.210g!!!
Her oxygen and co2 is still rising. They will do everything they can to avoid it, but she may end up reintubated.
I got a 30min Kangaroo cuddle, not long enough, but magnificent nonetheless!!
When I left that afternoon, she was on 59%o2 and co2 was in the 60's
Rang at around 7.30pm
Nancy had Jazzies o2 down to 40% while she was prone, but it was now back up to 55%, co2 still in the 60's.
Theyve tried putting a different feeding tube in, its an oral jeujeunal tube, the end of the tube, rather than going into her stomach, goes straight into the first part of her intestines. They are wondering about two possibilities - a) her tummy gets too full, putting pressure on her lungs making it difficult to breathe, or b) she has severe reflux.
We'll get an indication if this helps from by midnight.
Midnight- 60% oxygen, co2 mid 50's, starting steroids again.
32+6
Jazz is much better today. Oxygen down to 50% and got to 49% when I left.
Her new feeding tube seems to be working, she gets fed continuously now, small amounts straight into the intestine. Having lots of big poos!!!
She had her music therapy assessment today and coped really well, so now she can begin music therapy. She'll be listening to music for dreaming to help her settle and relax.
I got a short cuddle today and for the first time she was fussing and showing signs that the smell of my milk was driving her wild!! We gave her her cpap dummy and she really enjoyed sucking it. She also started the rooting reflex!! Hopefully this means she'll do well when it comes time for breast contact!
6.27pm- o2 49%, co2 50. Tolerating feeds, respiratory rate drops low.
11.52pm- o2 45%. tolerating feeds.
It had been another huge week!! Hopefully the next week would be better!!
Tuesday, 21 June 2011
31 weeks gestation
Jazz didnt get extubated today 'cos her gorgeous little 5 day old, 24 weeker, friend had to have surgery for NEC. Nec is necrotising enterocolitis, its where the bowel tissue dies and perforates and is very common in prems, that was one of the reasons for all the nurses constant worrying about Jazzies distended tummy. Alexandra had to have her surgery in Bay 7 as she was too unstable to move so I had to leave early.
Had an update, and Jazz is incredible! I'm loving those steroids! Her oxygen is between 21% (Air) and 30% with hardly any desats!! Her feeds are 7-8ml alternating and she'll probably be extubated tomorrow!!
Wow, thats a far cry from my panic about the HFO, and everyones concerns about ventilator dependancy!
31+1
Another amazing day!! Shes come so far from just recently having meningitis, the huge PDA, collapsed lung and ventilator dependancy......she was extubated at 11am!!!
I watched as Leanne removed the tube and put the cpap prongs in, poor bugger had size 1 prongs though and needed size 0 prongs!!! She was furious at these massive things up her nose!
Over the past few days I'd been hearing a funny noise that sounded exactly like a kookaburra coming from Jazz, it was wierd. When I told one of the nurses, she listened and said that Jazzie had grown around her tube and there was now air leaking and going past the vocal chords.....she was crying!! Now that the tube was gone completely I really heard her cry, it was raspy from having had the tube there so long, but gorgeous!! Now she was sounding a bit like a real baby!!
Its the small things that really get you, hearing her cry got me all weepy again!! Its a huge thing really when you think about it!
She hated the nasal prongs and kept rubbing her head on the bed in an effort to remove them!
She was on 40% oxygen and doing great! Now we just wait and watch and see if she can manage to remain extubated
Rang twice for updates that night, and she was doing well, oxygen between air and 30% and only a couple of desats. Her feeds were stopped so theres not too much pressure on her little lungs to breathe, it'll be interesting to see how she goes when shes back on feeds.
The first 24 hours are are the most important to see if she can stay on cpap.
31+2
Rang at 8am and she was still doing beautifully!! She had gotten ratty between 10pm and 2am cos the poor little mite is starving!!!! and she sucked vigorously on jackies hand!! Jackie asked me if it was ok for her to have a dummy, so now she has the tiniest dummy ever......which is immense in proportion to her!!!
Shes still on predominately air and up to 25%
When I got there, Jackie said she had to weigh Jazz and clean her house. It needed a clean!! When you opened the door it was like being hit with a shit bat, quote from paul!! lol
she stunk!!!
I was looking forward to her being big enough to bath!!
Jackie had already booked the recliner so I could have a Kangaroo cuddle while she cleaned! My first CPAP cuddle, and the first cuddle since I broke her!!!
Aside from that excitement it was my first ever 'boring' day, finally!!! Jazzie slept all day....that breathing business is bloody hard work!!! And I didnt fret too much cos she was doing so well.
She also had another cerebral scan, and she finally hit the big 1kilo!!! Yay!!! 1005g to be precise!!!
31+3
So far Jazz is still doing brilliantly! Oxygen ranging from air to 27%! Flora is weaning down the steroids. She seems really pleased with how well Jazz is doing and Ive even had a few of the younger doctors coment on how amazed they are by her! Her feeds have been started again and she got up to 5ml per hour before they had to stop them again. She got a distended, loopy tummy and then poo'd all over the poor radiologist as he was preparing to xray her and lost 2cm girth in the process!! lol
She still a bit distended though despite the massive poo so shes off feeds for a bit longer yet. They say she has CPAP belly, some of the air goes into the gut....basically she needs a couple of good farts and she'll be right!
She needed her I.V resited today as it had tissued (blocked) again, the doctor tried 3 times with no success to find a vein, poor thing was getting really distressed, as was I!!!, so they decided to give her a break and try again later.
By Saturday she should be I.V free and I wont have to worry about infection risk as much, she has one I.V for nutrients while shes off feeds and the antibiotics finish Friday.
The results of her latest cerebral scan came back - No Abnormalities Detected!!! Woohoo, still no bleeds, thank God!!! And to top it off, Flora said shes out of the woods now as far as cerebral bleeds are concerned! Cerebral bleeds have been a constant worry, they are so common in these tinies and I was initially told it would be a matter of how seriously she'd bleed rather than whether she would!! This was a massive milestone!!!
At 10.30pm, she was doing great! She'd been taken off IMV setting and was on straight CPAP. The difference bein that the IMV supplied breaths, as well as pressure to keep thelungs open a little, now she was doing all the breathing on her own for the first time ever!!! Currently her o2 was 27% and they were going to re start her feeds at 6pm, she finally got the I.V resited in her poor little foot, she only narrowly avoided having it sited in her scalp!!
31+4
This morning Jazz had her prongs in her eyes....but still saturated well!!! She is coming along in leaps and bounds!!! Shes still in 27% o2 and feeds were re started at 12am. She was weighed today and my 1kg excitement had been short lived....bloody fluid!! She was currently 954g....so not long to go now!!
I had another Kangaroo cuddle today! My god I love them so much!! And Jazz seemed to enjoy them too, she really relaxes and goes right to sleep, she got extremely angry when she was put back in the isolette!!!
Sweet bub Alexandra passed away today and I was devastated. Her parents were so lovely and I had hoped Alexandra would share the journey with Jazz. As soon as I saw the curtains go up around her isolette, I knew what was happening and I just couldnt stay. I was bawling by the time I got to the carpark and when I got home and expressed, I threw that milk out, I didnt want Jazz having such sad milk....it might sound wierd, but emotions have been proven scientifically to have an effect on the physical body, and since everything we ingest etc goes into our milk, it stands to reason that the milk wouldve been filled with whatever chemical the body produces when its that sad or grieving....my theory and Im sticking to it!!! Its very hard when a bub passes in NICU, youre not only devastated for the child and their family, but you also know that your child is still in danger, anything can happen. And while you tend not to think about it, particularly when your bub is doing well, seeing another baby pass just brings reality thundering back in for a time.
I prayed for the day we'd get out of NICU (naivelly thinking that she'd be safe then) and I also fervently prayed I didnt see any more babies die.
31+5
Shes just a legend is my poppet!! Doing incredibly well, I was very impressed! O2 ranging between 23 and 30% and steroids are almost finished. Antibiotics finished today, andher co2 was 29, what a legend!
Shes on full feeds again, 7ml and 8ml alternating and they have restarted fortifying it too. Everyone seems to be very impressed by her!
I had a 2hr Kangaroo cuddle, wow! Her little mate Myka was under the phototherapy lights, and the light was really bothering her, she pulled back off me, almost arching trying to get away from it, shes bloody strong!!
Night time update she was on 23% o2, and had only had one desat, what a clever girl!!
31 +6
27% oxygen, and finished the steroids. She put on 72g, she was now 1026g!! Yay!!! Now we could get the 1 kilo club certificate! She was tolerating her feeds, saturating well and her co2 was good.
Had a beautiful 1 hr kangaroo cuddle, they are the highlight of my day!
I did get totally freaked by her nurse though. In all the time weve been there, I have never seen any other nurse distress Jazz so much. When she put Jazz back in the isolette after our cuddle, she unplugged the CPAP, rather than fixing it up and plugging her back in, she started mucking around with the leads which were so tangled it wasnt funny!! She was mucking around so much that I moved in and untangled the ng tube to plug the CPAP back in, Jazz was getting distressed and starting to desat. Then I noticed there was o2 escaping from somewhere down the bottom of the machine, I kept telling the nurse, but rather than listen to me, the silly cow kept turning the o2 up!! What was the point of that!!?? She was desatting cos she wasnt getting ANY bloody o2 at all!!!!!!! She then mucked around trying to position her, but she kept forgetting to do stuff. So shed pick jazz up jerkily go to flip her over, realise shes forgotton something and jerk her back down while Jazz freaked out and arched and startled and saluted all over the shop, she did this to my poor Jazz 4 times!!!!!! I have never seen Jazz so distressed even after all thats been done to her! So while this nurse was practically torturing her, im over the other side of the isolette trying to give Jazz containment holds (special, firm holds that the OT teaches premmie parents, which are calming and soothing to prems) to try and calm her down!
THEN, still not happy with the amount of distress shes so far caused, this nurse starts to obsessively mess around with Jazzies prongs!! Shed try to straighten them, bend down to look, not happy with that, repeat. This went on for a ridiculousamount of time and I was getting extremely distressed myself, Jazz was desatting and freaking out. I dont know why she couldnt leave her alone!! The prongs were in, she was recieving oxygen, give the child a chance to calm down and relax before you try to make the bloody prongs asthetically pleasing to yourself idiot!!!
The nurse then had the nerve to tell me Jazz desats because she doesnt like the handling...moron.....its only handling like that which causes the desats now!!! I put in a complaint with the head nurse and asked that this nurse not lok after Jazz again....as far as nursing (taking obs etc) goes, she was very good, as far as having a clue what to do with a tiny prem she was useless!!!!!
The music therapist came and saw me that afternoon, Jazz would have an assessment to see if she could cope with music therapy on Monday
Had an update, and Jazz is incredible! I'm loving those steroids! Her oxygen is between 21% (Air) and 30% with hardly any desats!! Her feeds are 7-8ml alternating and she'll probably be extubated tomorrow!!
Wow, thats a far cry from my panic about the HFO, and everyones concerns about ventilator dependancy!
31+1
Another amazing day!! Shes come so far from just recently having meningitis, the huge PDA, collapsed lung and ventilator dependancy......she was extubated at 11am!!!
I watched as Leanne removed the tube and put the cpap prongs in, poor bugger had size 1 prongs though and needed size 0 prongs!!! She was furious at these massive things up her nose!
Over the past few days I'd been hearing a funny noise that sounded exactly like a kookaburra coming from Jazz, it was wierd. When I told one of the nurses, she listened and said that Jazzie had grown around her tube and there was now air leaking and going past the vocal chords.....she was crying!! Now that the tube was gone completely I really heard her cry, it was raspy from having had the tube there so long, but gorgeous!! Now she was sounding a bit like a real baby!!
Its the small things that really get you, hearing her cry got me all weepy again!! Its a huge thing really when you think about it!
She hated the nasal prongs and kept rubbing her head on the bed in an effort to remove them!
She was on 40% oxygen and doing great! Now we just wait and watch and see if she can manage to remain extubated
Rang twice for updates that night, and she was doing well, oxygen between air and 30% and only a couple of desats. Her feeds were stopped so theres not too much pressure on her little lungs to breathe, it'll be interesting to see how she goes when shes back on feeds.
The first 24 hours are are the most important to see if she can stay on cpap.
31+2
Rang at 8am and she was still doing beautifully!! She had gotten ratty between 10pm and 2am cos the poor little mite is starving!!!! and she sucked vigorously on jackies hand!! Jackie asked me if it was ok for her to have a dummy, so now she has the tiniest dummy ever......which is immense in proportion to her!!!
Shes still on predominately air and up to 25%
When I got there, Jackie said she had to weigh Jazz and clean her house. It needed a clean!! When you opened the door it was like being hit with a shit bat, quote from paul!! lol
she stunk!!!
I was looking forward to her being big enough to bath!!
Jackie had already booked the recliner so I could have a Kangaroo cuddle while she cleaned! My first CPAP cuddle, and the first cuddle since I broke her!!!
Aside from that excitement it was my first ever 'boring' day, finally!!! Jazzie slept all day....that breathing business is bloody hard work!!! And I didnt fret too much cos she was doing so well.
She also had another cerebral scan, and she finally hit the big 1kilo!!! Yay!!! 1005g to be precise!!!
31+3
So far Jazz is still doing brilliantly! Oxygen ranging from air to 27%! Flora is weaning down the steroids. She seems really pleased with how well Jazz is doing and Ive even had a few of the younger doctors coment on how amazed they are by her! Her feeds have been started again and she got up to 5ml per hour before they had to stop them again. She got a distended, loopy tummy and then poo'd all over the poor radiologist as he was preparing to xray her and lost 2cm girth in the process!! lol
She still a bit distended though despite the massive poo so shes off feeds for a bit longer yet. They say she has CPAP belly, some of the air goes into the gut....basically she needs a couple of good farts and she'll be right!
She needed her I.V resited today as it had tissued (blocked) again, the doctor tried 3 times with no success to find a vein, poor thing was getting really distressed, as was I!!!, so they decided to give her a break and try again later.
By Saturday she should be I.V free and I wont have to worry about infection risk as much, she has one I.V for nutrients while shes off feeds and the antibiotics finish Friday.
The results of her latest cerebral scan came back - No Abnormalities Detected!!! Woohoo, still no bleeds, thank God!!! And to top it off, Flora said shes out of the woods now as far as cerebral bleeds are concerned! Cerebral bleeds have been a constant worry, they are so common in these tinies and I was initially told it would be a matter of how seriously she'd bleed rather than whether she would!! This was a massive milestone!!!
At 10.30pm, she was doing great! She'd been taken off IMV setting and was on straight CPAP. The difference bein that the IMV supplied breaths, as well as pressure to keep thelungs open a little, now she was doing all the breathing on her own for the first time ever!!! Currently her o2 was 27% and they were going to re start her feeds at 6pm, she finally got the I.V resited in her poor little foot, she only narrowly avoided having it sited in her scalp!!
31+4
This morning Jazz had her prongs in her eyes....but still saturated well!!! She is coming along in leaps and bounds!!! Shes still in 27% o2 and feeds were re started at 12am. She was weighed today and my 1kg excitement had been short lived....bloody fluid!! She was currently 954g....so not long to go now!!
I had another Kangaroo cuddle today! My god I love them so much!! And Jazz seemed to enjoy them too, she really relaxes and goes right to sleep, she got extremely angry when she was put back in the isolette!!!
Sweet bub Alexandra passed away today and I was devastated. Her parents were so lovely and I had hoped Alexandra would share the journey with Jazz. As soon as I saw the curtains go up around her isolette, I knew what was happening and I just couldnt stay. I was bawling by the time I got to the carpark and when I got home and expressed, I threw that milk out, I didnt want Jazz having such sad milk....it might sound wierd, but emotions have been proven scientifically to have an effect on the physical body, and since everything we ingest etc goes into our milk, it stands to reason that the milk wouldve been filled with whatever chemical the body produces when its that sad or grieving....my theory and Im sticking to it!!! Its very hard when a bub passes in NICU, youre not only devastated for the child and their family, but you also know that your child is still in danger, anything can happen. And while you tend not to think about it, particularly when your bub is doing well, seeing another baby pass just brings reality thundering back in for a time.
I prayed for the day we'd get out of NICU (naivelly thinking that she'd be safe then) and I also fervently prayed I didnt see any more babies die.
31+5
Shes just a legend is my poppet!! Doing incredibly well, I was very impressed! O2 ranging between 23 and 30% and steroids are almost finished. Antibiotics finished today, andher co2 was 29, what a legend!
Shes on full feeds again, 7ml and 8ml alternating and they have restarted fortifying it too. Everyone seems to be very impressed by her!
I had a 2hr Kangaroo cuddle, wow! Her little mate Myka was under the phototherapy lights, and the light was really bothering her, she pulled back off me, almost arching trying to get away from it, shes bloody strong!!
Night time update she was on 23% o2, and had only had one desat, what a clever girl!!
31 +6
27% oxygen, and finished the steroids. She put on 72g, she was now 1026g!! Yay!!! Now we could get the 1 kilo club certificate! She was tolerating her feeds, saturating well and her co2 was good.
Had a beautiful 1 hr kangaroo cuddle, they are the highlight of my day!
I did get totally freaked by her nurse though. In all the time weve been there, I have never seen any other nurse distress Jazz so much. When she put Jazz back in the isolette after our cuddle, she unplugged the CPAP, rather than fixing it up and plugging her back in, she started mucking around with the leads which were so tangled it wasnt funny!! She was mucking around so much that I moved in and untangled the ng tube to plug the CPAP back in, Jazz was getting distressed and starting to desat. Then I noticed there was o2 escaping from somewhere down the bottom of the machine, I kept telling the nurse, but rather than listen to me, the silly cow kept turning the o2 up!! What was the point of that!!?? She was desatting cos she wasnt getting ANY bloody o2 at all!!!!!!! She then mucked around trying to position her, but she kept forgetting to do stuff. So shed pick jazz up jerkily go to flip her over, realise shes forgotton something and jerk her back down while Jazz freaked out and arched and startled and saluted all over the shop, she did this to my poor Jazz 4 times!!!!!! I have never seen Jazz so distressed even after all thats been done to her! So while this nurse was practically torturing her, im over the other side of the isolette trying to give Jazz containment holds (special, firm holds that the OT teaches premmie parents, which are calming and soothing to prems) to try and calm her down!
THEN, still not happy with the amount of distress shes so far caused, this nurse starts to obsessively mess around with Jazzies prongs!! Shed try to straighten them, bend down to look, not happy with that, repeat. This went on for a ridiculousamount of time and I was getting extremely distressed myself, Jazz was desatting and freaking out. I dont know why she couldnt leave her alone!! The prongs were in, she was recieving oxygen, give the child a chance to calm down and relax before you try to make the bloody prongs asthetically pleasing to yourself idiot!!!
The nurse then had the nerve to tell me Jazz desats because she doesnt like the handling...moron.....its only handling like that which causes the desats now!!! I put in a complaint with the head nurse and asked that this nurse not lok after Jazz again....as far as nursing (taking obs etc) goes, she was very good, as far as having a clue what to do with a tiny prem she was useless!!!!!
The music therapist came and saw me that afternoon, Jazz would have an assessment to see if she could cope with music therapy on Monday
Monday, 20 June 2011
30 weeks gestation
Jazzy was looking great! She'd put on so much weight and had a gorgeous chubby face!! At the time I thought she was clearly getting bigger and stronger, but over the next few days I would realise that rather than becoming a gorgeous chunky bubby, she was filling up and swelling with fluid! After a few days she looked awful, even her eyelids were swollen!!! Its amazing to look back at the photos and see the change and just how swollen she got!
But, I digress......
She had been swaddled tight in a futile attempt to keep her more relaxed, but telling this child to stay still was like telling her to stop breathing! (although thats probably not such a good comparison seeing as though she preferred not to breathe and let the machine do it for her!!! lol) She just wouldnt stop squirming and desatting.
David told the nurse that they'll do an echo when she'd finished the indomethicin, then look at putting her on steroids in an effort to get her extubated and onto cpap.
She was on 70% o2, but was often having stints up higher, particularly when she was on her back. Desatting into the 70's frequently.
30+1
When I got there in the morning, Jazz was in 80% o2, and the HFO machine was there just in case. This was terrifying to me, I had seen a 24 weeker go onto the HFO and she hadnt made it. So the HFO machine loomed at the end of Jazzies isolette like some wicked monster preparing to strike.
After an hour or so, the doctors did their rounds, because Jazz was desatting so much and so low, her chart was completely black with lines ruled for desats, you literally couldnt see any white! , and she was totally ventilator dependant, Flora decided she would go onto the HFO. I broke down, I thought this was the beginning of the end. Flora said that the HFO is gentler and would hopefully open her airways more and basically vibrate the co2 out of her!! But I could only see Evie.
Flora also said they'd be starting steroids in a few days. They had spent some time talking to us about the steroids. Steroids can possibly cause developmental delays, but the ventilator itself can also potentially cause developmental delays and also increases the damage to their already very damaged lungs, so to us the steroids were the lesser of two evils! Either way there was that potential for delays, but at least the steroids meant her little lungs might have a chance of improving. It was around this time that someone (dont recall who) told me of a recent death in Bay 8, the baby had been in NICU his whole life and was over a year old, he was ventilator dependant, his lungs were just too badly damaged. This was really scarey to hear!! The higher Jazzies o2 climbed and the more frequently she was desatting, the more anxious I got. To top it off, I could see from the really bad poker faces on some of the younger nurses that they didnt believe Jazz would make it, I was still putting on that positive front for Jazzie, but my composure was beginning to crack!!!
After being put on the HFO at 600 breaths per second, she was desatting a bit less and her o2 initially dropped to 60%. They were hoping to get it much lower. She had another blood transfusion that afternoon as I was leaving. And she was also going to be put onto diuretics to reduce some of the fluid, it would also reduce the fluid in her lungs. Both the PDA and the indomethicin can cause fluid retention
30+2
This morning when I arrived, jazzies o2 was 78% and the desats very frequent. She was often put up to 100% at times with desats but the oxygen I write down is the one she's on more often. David said he'd give her a couple of days and if she was still misbehaving she'd have her roids. If they still cant extubate, they'd leave her a bit longer to grow bigger. Today was the last dose of indomethicin. Shes tolerating 5ml per hour EBM, co2 50
at 5.30pm- lots of desats oxygen 80%.
10.30pm- they decided to start steroids! She had already had her first dose and her o2 is already down to 70%!
30+3
This morning Jazzie was on 68%!!!! and desastting a bit less, and her pressure had been reduced a little, and most importantly- her Co2 was in the 40's!!!
By 9.30am her oxygen was higher and she was still desatting lots, but also having lots of braddies. The doctors suggested that the nurses push the tube in a little further as it might be "tickling" the vagus nerve. Well, that fixed the braddies, but the desats gots worse. Oxygen went up to 90%. By 2.30 that afternoon though, her o2 had reduced again to the 80's.
Evening update- Oxygen back to 90 and pressures had increased again. She had another chest x-ray and it showed a collapsed lung. She needs to be nursed on her right side and prone, to help open the lung, but she's cracking the shits because for once she doesnt want to be on her tummy!!! Fussy little bugger!
30+4
hmmm......going through these journals, and somehow I missed writing a day!!!! I dare say it was the same as all the others. I kept being told by people to have a day off, but I couldnt do it, she doesnt get a day off!! Shes stuck there doing some really tough stuff and is probably scared or in pain often.....I need to be there for her every day! I found it difficult enough that I had to leave her at night. But, the other kids needed me too!
Not really surprising that Ive missed a day, although its probably just been a misdated day!!
30+5
At 8am update she was doing much better, her oxygen had reduced to 45-50%! Amazing! Those steroids were wonder drugs!!
Her collapsed lung is improving, I was told it happens a lot, its due to the mucous becoming so sticky in the lungs and just sticking to sides of the lung together!
Flora is so happy with her, thats she's talking about trying to extubate her tomorrow!!! Maybe I'll get another hold soon! She cant be held at all, not even an isolette hold, with the HFO as the tubing is too heavy and could extubate her very easily.
I forgot myself and stroked her head today! She loved it this time!! She used to hate a light touch, but today she peacefully went to sleep with me stroking her head!
PDA should be checked tomorrow, and shes on more diuretics to remove fluid from her lungs. Having steroids twice a day.
At my 8.30pm update- she was on 40% o2, and had sucked at some EBM that Kim rubbed in her mouth!
30+6
Jazz didnt get extubated today as her lung is still collapsed. Theyve pushed her tube in further in an attempt to inflate her lung. All going well they'll try to extubate tomorrow!! Had her echo- unofficially- NO PDA!!!
Whilst having her echo she braddied from being on her back so long, then her breathing stopped too and they had to rescue her with the neo puff. She was ok after a little while and her o2 was back to 35%. They suctioned her tube soon after and got a huge lump of yuck!! Hopefully thats the culprit that stuck her lungs together!!! They think it mustve dislodged and blocke her ET tube.
But, I digress......
She had been swaddled tight in a futile attempt to keep her more relaxed, but telling this child to stay still was like telling her to stop breathing! (although thats probably not such a good comparison seeing as though she preferred not to breathe and let the machine do it for her!!! lol) She just wouldnt stop squirming and desatting.
David told the nurse that they'll do an echo when she'd finished the indomethicin, then look at putting her on steroids in an effort to get her extubated and onto cpap.
She was on 70% o2, but was often having stints up higher, particularly when she was on her back. Desatting into the 70's frequently.
30+1
When I got there in the morning, Jazz was in 80% o2, and the HFO machine was there just in case. This was terrifying to me, I had seen a 24 weeker go onto the HFO and she hadnt made it. So the HFO machine loomed at the end of Jazzies isolette like some wicked monster preparing to strike.
After an hour or so, the doctors did their rounds, because Jazz was desatting so much and so low, her chart was completely black with lines ruled for desats, you literally couldnt see any white! , and she was totally ventilator dependant, Flora decided she would go onto the HFO. I broke down, I thought this was the beginning of the end. Flora said that the HFO is gentler and would hopefully open her airways more and basically vibrate the co2 out of her!! But I could only see Evie.
Flora also said they'd be starting steroids in a few days. They had spent some time talking to us about the steroids. Steroids can possibly cause developmental delays, but the ventilator itself can also potentially cause developmental delays and also increases the damage to their already very damaged lungs, so to us the steroids were the lesser of two evils! Either way there was that potential for delays, but at least the steroids meant her little lungs might have a chance of improving. It was around this time that someone (dont recall who) told me of a recent death in Bay 8, the baby had been in NICU his whole life and was over a year old, he was ventilator dependant, his lungs were just too badly damaged. This was really scarey to hear!! The higher Jazzies o2 climbed and the more frequently she was desatting, the more anxious I got. To top it off, I could see from the really bad poker faces on some of the younger nurses that they didnt believe Jazz would make it, I was still putting on that positive front for Jazzie, but my composure was beginning to crack!!!
After being put on the HFO at 600 breaths per second, she was desatting a bit less and her o2 initially dropped to 60%. They were hoping to get it much lower. She had another blood transfusion that afternoon as I was leaving. And she was also going to be put onto diuretics to reduce some of the fluid, it would also reduce the fluid in her lungs. Both the PDA and the indomethicin can cause fluid retention
30+2
This morning when I arrived, jazzies o2 was 78% and the desats very frequent. She was often put up to 100% at times with desats but the oxygen I write down is the one she's on more often. David said he'd give her a couple of days and if she was still misbehaving she'd have her roids. If they still cant extubate, they'd leave her a bit longer to grow bigger. Today was the last dose of indomethicin. Shes tolerating 5ml per hour EBM, co2 50
at 5.30pm- lots of desats oxygen 80%.
10.30pm- they decided to start steroids! She had already had her first dose and her o2 is already down to 70%!
30+3
This morning Jazzie was on 68%!!!! and desastting a bit less, and her pressure had been reduced a little, and most importantly- her Co2 was in the 40's!!!
By 9.30am her oxygen was higher and she was still desatting lots, but also having lots of braddies. The doctors suggested that the nurses push the tube in a little further as it might be "tickling" the vagus nerve. Well, that fixed the braddies, but the desats gots worse. Oxygen went up to 90%. By 2.30 that afternoon though, her o2 had reduced again to the 80's.
Evening update- Oxygen back to 90 and pressures had increased again. She had another chest x-ray and it showed a collapsed lung. She needs to be nursed on her right side and prone, to help open the lung, but she's cracking the shits because for once she doesnt want to be on her tummy!!! Fussy little bugger!
30+4
hmmm......going through these journals, and somehow I missed writing a day!!!! I dare say it was the same as all the others. I kept being told by people to have a day off, but I couldnt do it, she doesnt get a day off!! Shes stuck there doing some really tough stuff and is probably scared or in pain often.....I need to be there for her every day! I found it difficult enough that I had to leave her at night. But, the other kids needed me too!
Not really surprising that Ive missed a day, although its probably just been a misdated day!!
30+5
At 8am update she was doing much better, her oxygen had reduced to 45-50%! Amazing! Those steroids were wonder drugs!!
Her collapsed lung is improving, I was told it happens a lot, its due to the mucous becoming so sticky in the lungs and just sticking to sides of the lung together!
Flora is so happy with her, thats she's talking about trying to extubate her tomorrow!!! Maybe I'll get another hold soon! She cant be held at all, not even an isolette hold, with the HFO as the tubing is too heavy and could extubate her very easily.
I forgot myself and stroked her head today! She loved it this time!! She used to hate a light touch, but today she peacefully went to sleep with me stroking her head!
PDA should be checked tomorrow, and shes on more diuretics to remove fluid from her lungs. Having steroids twice a day.
At my 8.30pm update- she was on 40% o2, and had sucked at some EBM that Kim rubbed in her mouth!
30+6
Jazz didnt get extubated today as her lung is still collapsed. Theyve pushed her tube in further in an attempt to inflate her lung. All going well they'll try to extubate tomorrow!! Had her echo- unofficially- NO PDA!!!
Whilst having her echo she braddied from being on her back so long, then her breathing stopped too and they had to rescue her with the neo puff. She was ok after a little while and her o2 was back to 35%. They suctioned her tube soon after and got a huge lump of yuck!! Hopefully thats the culprit that stuck her lungs together!!! They think it mustve dislodged and blocke her ET tube.
Sunday, 19 June 2011
29 weeks and the rollercoaster really begins - meningitis
When you first begin your journey through NICU, you are told constantly that its a rollercoaster, many ups and downs, and Jazz had had a few but so far the dips hadnt been extreme.
This morning she'd been a little naughty and when I came in the doctors were again changing her ventilator settings. They hoped that doing this would stop all the braddy's and it seemed to work. She had hardly any desats and no brads while I was there between 9.30am and 1.30pm.
With some trepidation.....and a whole lotof excitement, I got another kangaroo cuddle, in the proper recliner, for an hour!! It was blissful! Once again she saturated beautifully, and she began licking me!! It was so sweet! When the cuddle was over, I was saturated as I'd been due to express and leaked everywhere; and Jazz had left a little puddle of spit from her licking between my boobs!! They said if she continues to behave Paul may even get his first cuddle that night!
Paul and I arrived that night around 1/4 to 9. Jazz had been naughty again, so Paul didnt get his cuddle. I felt really bad again, twice now I'd held her, and twice I'd broken her.
Her CRP is creeping up, they think she has a chest infection.
Due to the ventilator tube in her lungs, the lungs produce mucous to try and get rid of it. Because Jazz has chronic lung disease and is ventilator dependant, she doesnt breathe properly and the mucous sits in her lungs and becomes infected. She was put on another course of antibiotics, and I prayed the PDA wouldnt re open. Often when these guys get an infection so soon after the PDA narrows, it can re open.
Currently on 50% oxygenandher co2 is good so far.
29+1
Jazzies much the same so far today, desatting a bit and a few brads. Her CRP is 12, o2 45% and co2 is in the 50's
So other than the infection she seems to be doing well. She doesnt look sick and is active so I think thats a good sign. Gave her a lot of reiki and each time I did she saturated beautifully.
Rang in the evening and she hadnt changed much, but was desatting less. They had to change her I.V and took some blood to check CRP and FBE, results will be back tomorrow. Hopefully her CRP is coming down. Again I'd been feeling so bad that she was sick, I completely blamed myself and our cuddles, I walk through the hospital day in and day out, so many germs I couldve been exposed to!! Hand hygeine is so thoroughly drummed into us, but what if there was some germ sitting on my clothes waiting for its chance!!??? I know the kangaroo cuddles are so important, and I just loved them and wanted them, but at what cost?
29+2
I arrived to a big shock this morning. I was told that over night they had attempted to do a lumbar puncture on Jazz. They'd had to give up though because it so distressed her (and who can blame her!!!!) that she couldnt keep her sats up and braddied all over the place. The reason they wanted it is because her CRP jumped from 12-60 and they suspected meningitis. Thankfully her CRP had since reduced to 49 so they had no plans to re attempt the lumbar puncture yet.
David said that despite being sick with an infection, she was good, and he expected to begin weaning her ventilation down by the end of the week. He thinks she'll cope now. Shes looking good and is active, so I wasnt extremely concerned, but the thought of meningitis was disturbing me.
That evening I had a call, her CRP increased again to 65, this time they managed to complete a lumbar puncture and told me she did indeed have meningitis. Infection control had been to see them and found that the antibiotics Jazz had already been taking were the correct ones. The nurse said it was a very positive thing that Jazz had already been on antibiotics before she got the meningitis. I was told she was stable and active and her temperature was good, she might be ok, but Paul and I were not so good!
When you hear that your child has meningitis, its not a pleasant picture that your mind creates and I was so frightened that after fighting so hard and doing so well, that I was going to lose her. Briefly my positive thoughts were shattered.
29+3
After a very unsettled and very weepy night, Paul took the day off work and we both went in to see Jazz.
Dr David came and explained everything to us. They thought the infection from her lungs had crossed into the cerebral spinal fluid causing meningitis. For those who dont know, I'll get all medical again....meningitis means inflammation of the meninges (which are the membranes that cover the brain and spinal cord).......cant be a good thing. But luckily for Jazz she had been on anti's already and despite the lumbar puncture showing that her white cell count was through the roof, her cerebral spinal fluid was clear, and so far theyd been unable to culture anything. She would be on antibiotics for at least 14 days, and it would be a long time before we'd know if the meningitis had caused any hearing loss or developmental problems.
David was still confident that he could begin to wean her ventilation by the end of the week. He said clinically she looked good and wouldnt need another lumbar puncture. Her oxygen was good and she was desatting less, but her murmur was louder so it was looking as if her PDA had opened more. They would probably do another echo when she'd finished the atibiotics.
David said he preferred to manage PDA's by reducing over all fluid volume as opposed to meds or surgery...that sounded good.
Jazz had another blood transfusion and was given a diuretic to reduce the excess fluid caused by it. Oxygen 50%, mainly desatting with handling, blood gas 51 and tolerating feeds. Tough girl!!!!
29+4
Jazz had a great day! Looked good and was desatting marginally less, but she'd had a couple of brads. Once again her ventilation settings were changed in an effort to begin weaning and she was coping so far.
Her nurse, Rachel, almost broke me!!! She had me pick jazz up and turn her from her front to her back!! I was so terrified that my dodgy, clutzy hands would make me stuff up and hurt her or extubate her! But I was really brave and I did it!! Although I very nearly cried again!!!! Afterwards my hands were shaking!
Then I changed her bottom and Rachel again told me to pick her up, Rachel undid the ventilator and I put Jazz on the scales!!! Then I picked her up again and placed her back into her bed....Oh my god!!! It was incredible, yet oh so terrifying!!! To add to the brilliance of the moment, Jazz's weight had increased to 865g! Even though it hadnt taken a very long time to do all that, I was completely drained!!! Jazz was still tolerating her feeds and her CRP had come down to 9!
29+5
Jazz was doing really well, not desatting as much and she'd only had two brads by 2pm.
Her feeds had increased again to 2ml per hour and ventilation had gone down a bit more, she was so far coping really well. An alarm went off today for the first time saying the respiration rate was too high, which I was told means she was starting to take some of her own breath! On the advice of infection control, her antibiotics were changed and her oxygen had reduced a little.
David was really happy with her and was hoping to reduce her settings more over the weekend. Arvand did another echo and Jazzies PDA had enlarged to around 2mm- which is moderate, but unfortunately it had the characteristics of a large one, which means it was causing problems for her. She would be starting the 2nd course of indomethicin this afternoon, although at this age it only has a 10% chance of effectiveness, the doctors hoped that because she responded so well the first time, she would do likewise second time around.
When she was weighed in the afternoon she was a whopping 961g!!!! 1 kilogram, here we come!!!! I went out this afternoon and boughther a couple of premmie tops!
Oxygen 50%, co2 60.
At 10.45pm, she'd had 1 small brad and was still tolerating feeds.
29+6
Jazzies nurse, Leah, was stunned by the way Jazz was sucking on her ventilation tube today!
She has not been behaving as well as she should today, lots of desats, so many that they had to rule the desat lines on her chart with a ruler as they were so close together. The chart looked black! The doctor told me she may need another lumbar puncture when her antibiotics are finished to make sure her white cell count is down...
They aare still fiddling with her ventilation, trying to find a setting that will stabilise her, then they'll start weaning again. In handover, Leah said the doctors were trying to decide when they'll start steroids.
Her poor little foot is literally bruised black up to her calf from the I.V and all the squeezing when taking bloods. When the nurse went to do bloods again this afternoon, I nearly started crying and begged her not to touch that foot, she must be in so much pain.
Shes due for another weigh tomorrow if shes stable enough, I cant wait, hoping for the magic 1kg!! She only needs to have gained 39g!!! Feeds have been reduced to 4ml per hour.
So far, I was not enjoying this rollercoaster ride and couldnt wait for it to stop.
This morning she'd been a little naughty and when I came in the doctors were again changing her ventilator settings. They hoped that doing this would stop all the braddy's and it seemed to work. She had hardly any desats and no brads while I was there between 9.30am and 1.30pm.
With some trepidation.....and a whole lotof excitement, I got another kangaroo cuddle, in the proper recliner, for an hour!! It was blissful! Once again she saturated beautifully, and she began licking me!! It was so sweet! When the cuddle was over, I was saturated as I'd been due to express and leaked everywhere; and Jazz had left a little puddle of spit from her licking between my boobs!! They said if she continues to behave Paul may even get his first cuddle that night!
Paul and I arrived that night around 1/4 to 9. Jazz had been naughty again, so Paul didnt get his cuddle. I felt really bad again, twice now I'd held her, and twice I'd broken her.
Her CRP is creeping up, they think she has a chest infection.
Due to the ventilator tube in her lungs, the lungs produce mucous to try and get rid of it. Because Jazz has chronic lung disease and is ventilator dependant, she doesnt breathe properly and the mucous sits in her lungs and becomes infected. She was put on another course of antibiotics, and I prayed the PDA wouldnt re open. Often when these guys get an infection so soon after the PDA narrows, it can re open.
Currently on 50% oxygenandher co2 is good so far.
29+1
Jazzies much the same so far today, desatting a bit and a few brads. Her CRP is 12, o2 45% and co2 is in the 50's
So other than the infection she seems to be doing well. She doesnt look sick and is active so I think thats a good sign. Gave her a lot of reiki and each time I did she saturated beautifully.
Rang in the evening and she hadnt changed much, but was desatting less. They had to change her I.V and took some blood to check CRP and FBE, results will be back tomorrow. Hopefully her CRP is coming down. Again I'd been feeling so bad that she was sick, I completely blamed myself and our cuddles, I walk through the hospital day in and day out, so many germs I couldve been exposed to!! Hand hygeine is so thoroughly drummed into us, but what if there was some germ sitting on my clothes waiting for its chance!!??? I know the kangaroo cuddles are so important, and I just loved them and wanted them, but at what cost?
29+2
I arrived to a big shock this morning. I was told that over night they had attempted to do a lumbar puncture on Jazz. They'd had to give up though because it so distressed her (and who can blame her!!!!) that she couldnt keep her sats up and braddied all over the place. The reason they wanted it is because her CRP jumped from 12-60 and they suspected meningitis. Thankfully her CRP had since reduced to 49 so they had no plans to re attempt the lumbar puncture yet.
David said that despite being sick with an infection, she was good, and he expected to begin weaning her ventilation down by the end of the week. He thinks she'll cope now. Shes looking good and is active, so I wasnt extremely concerned, but the thought of meningitis was disturbing me.
That evening I had a call, her CRP increased again to 65, this time they managed to complete a lumbar puncture and told me she did indeed have meningitis. Infection control had been to see them and found that the antibiotics Jazz had already been taking were the correct ones. The nurse said it was a very positive thing that Jazz had already been on antibiotics before she got the meningitis. I was told she was stable and active and her temperature was good, she might be ok, but Paul and I were not so good!
When you hear that your child has meningitis, its not a pleasant picture that your mind creates and I was so frightened that after fighting so hard and doing so well, that I was going to lose her. Briefly my positive thoughts were shattered.
29+3
After a very unsettled and very weepy night, Paul took the day off work and we both went in to see Jazz.
Dr David came and explained everything to us. They thought the infection from her lungs had crossed into the cerebral spinal fluid causing meningitis. For those who dont know, I'll get all medical again....meningitis means inflammation of the meninges (which are the membranes that cover the brain and spinal cord).......cant be a good thing. But luckily for Jazz she had been on anti's already and despite the lumbar puncture showing that her white cell count was through the roof, her cerebral spinal fluid was clear, and so far theyd been unable to culture anything. She would be on antibiotics for at least 14 days, and it would be a long time before we'd know if the meningitis had caused any hearing loss or developmental problems.
David was still confident that he could begin to wean her ventilation by the end of the week. He said clinically she looked good and wouldnt need another lumbar puncture. Her oxygen was good and she was desatting less, but her murmur was louder so it was looking as if her PDA had opened more. They would probably do another echo when she'd finished the atibiotics.
David said he preferred to manage PDA's by reducing over all fluid volume as opposed to meds or surgery...that sounded good.
Jazz had another blood transfusion and was given a diuretic to reduce the excess fluid caused by it. Oxygen 50%, mainly desatting with handling, blood gas 51 and tolerating feeds. Tough girl!!!!
29+4
Jazz had a great day! Looked good and was desatting marginally less, but she'd had a couple of brads. Once again her ventilation settings were changed in an effort to begin weaning and she was coping so far.
Her nurse, Rachel, almost broke me!!! She had me pick jazz up and turn her from her front to her back!! I was so terrified that my dodgy, clutzy hands would make me stuff up and hurt her or extubate her! But I was really brave and I did it!! Although I very nearly cried again!!!! Afterwards my hands were shaking!
Then I changed her bottom and Rachel again told me to pick her up, Rachel undid the ventilator and I put Jazz on the scales!!! Then I picked her up again and placed her back into her bed....Oh my god!!! It was incredible, yet oh so terrifying!!! To add to the brilliance of the moment, Jazz's weight had increased to 865g! Even though it hadnt taken a very long time to do all that, I was completely drained!!! Jazz was still tolerating her feeds and her CRP had come down to 9!
29+5
Jazz was doing really well, not desatting as much and she'd only had two brads by 2pm.
Her feeds had increased again to 2ml per hour and ventilation had gone down a bit more, she was so far coping really well. An alarm went off today for the first time saying the respiration rate was too high, which I was told means she was starting to take some of her own breath! On the advice of infection control, her antibiotics were changed and her oxygen had reduced a little.
David was really happy with her and was hoping to reduce her settings more over the weekend. Arvand did another echo and Jazzies PDA had enlarged to around 2mm- which is moderate, but unfortunately it had the characteristics of a large one, which means it was causing problems for her. She would be starting the 2nd course of indomethicin this afternoon, although at this age it only has a 10% chance of effectiveness, the doctors hoped that because she responded so well the first time, she would do likewise second time around.
When she was weighed in the afternoon she was a whopping 961g!!!! 1 kilogram, here we come!!!! I went out this afternoon and boughther a couple of premmie tops!
Oxygen 50%, co2 60.
At 10.45pm, she'd had 1 small brad and was still tolerating feeds.
29+6
Jazzies nurse, Leah, was stunned by the way Jazz was sucking on her ventilation tube today!
She has not been behaving as well as she should today, lots of desats, so many that they had to rule the desat lines on her chart with a ruler as they were so close together. The chart looked black! The doctor told me she may need another lumbar puncture when her antibiotics are finished to make sure her white cell count is down...
They aare still fiddling with her ventilation, trying to find a setting that will stabilise her, then they'll start weaning again. In handover, Leah said the doctors were trying to decide when they'll start steroids.
Her poor little foot is literally bruised black up to her calf from the I.V and all the squeezing when taking bloods. When the nurse went to do bloods again this afternoon, I nearly started crying and begged her not to touch that foot, she must be in so much pain.
Shes due for another weigh tomorrow if shes stable enough, I cant wait, hoping for the magic 1kg!! She only needs to have gained 39g!!! Feeds have been reduced to 4ml per hour.
So far, I was not enjoying this rollercoaster ride and couldnt wait for it to stop.
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