Although I havent gotten up to date yet on Jazzies journey, I have so many thoughts and feelings racing through my head, threatening to completely send me spiraling out of control in an emotional explosion the likes of which have never before been experienced by sentient beings!!!!! So I believe a good venting may perhaps circumvent a tragedy of epic, and more than likely humourous (to my kids at least!), proportions!!!
So Jazz and I were paroled yesterday evening after another, fortunately brief, incarceration at Monash paediatrics!! As always, She was hyper, and it took quite some time in ED before the nurses and doctors saw that she was in fact desaturating and requiring more oxygen. Even when she's hypoxic, my Jazz is a whirlwind of energy!!! I think if we could somehow harness it, she could quite possibly power the town of Cranbourne in its entirety, single handedly!! No exaggeration!!!!
Whilst I'm so grateful that she's only been admitted twice this year both times for viral exacerbation of Asthma, first time for 2 nights, this time 1 night; instead of weeks at a time like last year, I'm finding as she's getting older and even more hyperactive its so much more difficult to deal with her being confined in a hospital room. Over night she was so insanely active ( more than usual thanks to prednisolone and ventolin burst therapy!!!!) that her nurse asked the doctor if we could sedate her!!
But even harder to deal with, is how my other kids are coping....or not coping as the case may be. Having a prem for your fourth child, and being a single mother.......its just crazy!! Throw in the fact that the two boys have additional needs and it becomes utterly mind boggling. I know this may sound offensive to some people, and believe me thats not my intention, but I really do envy those mums who's first child is the prem. I know there are heartaches and grief that they feel. Not having the perfect pregnancy, the "normal" full term baby, all the associated guilt that we all feel regardless of whether its first, second, third child etc. But needing to be there for your prem AND other children is a delicate juggling act, which I fear I'm failing at.
My eldest son has an anxiety disorder and my 10 year old has ADHD, borderline I.D and sensory processing disorder...my daughter is 8 going on 28, but still struggles emotionally. The past 2.5 years, for my eldest son in particular, have been horrendous and was initially made worse for him by his father describing in very graphic, sickening detail, late term abortions not long after the boys met Jasmine when she was a week or two old. He also, despite having no knowledge of the subject, told my sons that their sister was always going to have health problems and would be disabled....I wanted to smash that man!
The kids managed reasonably well while Jazz was in hospital, and were so excited when she came home, they absolutely adore her and spoil her rotten....theyre totally besotted!! Which makes it all the more difficult when she has hospital admissions.
My eldest son is going through puberty, which exacerbates his anxiety disorder and he has become very rude and disrespectful as well as having some anger management issues. Ive been told he is hyper vigilant, which means he's always on 'high alert', adrenal glands pumping adrenalin, almost continuously on the verge of 'fight or flight', and the tiniest thing tips him over. Unfortunately his response is not flight but rather fight and when he is running on adrenalin and his body and mind have been taken over by the primitive 'reptilian' brain, rather than the cerebral cortex which is used for executive functioning (reason, thought, rationale etc),he is impossible to reason with. Despite screaming for help from CAMHS and medical practitioners, naturopaths, dieticians, private psychologists etc, over the past 5 years, no help has been forthcoming for him and in september when he sees a new paediatrician....it'll be our last hope. He struggles at school, which is hard for me to deal with as he has an iq of 120, yet hes failing because he cant concentrate, cant sit still and flies off the handle often. He has been known to quite often run away from teachers who consequently find him hiding in corners or under tables in the classroom. It just makes me want to cry. So much potential that cant be utilised. On the up side, when hes not out of control he is an amazing, kind, loving boy who wants to help everyone....(well, except me with the housework!!!)
So each time Jazz is admitted, my son gets worse. Its gotten to the point that his relationship with my mother is ruined. Mum and Dad have been incredible, and are my only support, but they find it too difficult to deal with my son, and believe me, he IS hard work!!!. They struggle to see beyond the bad behaviour, to a boy who is having some severe difficulties dealing with everything. They are seeing an ill-mannered, rude, 'bad' boy......which of course he can be, just like any other child.
With each hospital admission, I feel so much stress, not just because my precious baby is sick again, but because I know my son and my mother will be fighting. My son has seemingly no respect for my Mum and is very rude, and mum is very tired and struggling herself, so the littlest things irritate her. Its so hard because Im helpless at the other end of a phone line knowing the remainder of my family is being torn apart and theres nothing I can do. I cant leave Jazz, aside from the fact that she becomes hysterical and desats to 50 if I'm not there, she needs to be constantly watched as she climbs out of the hospital cot!! And I have no one to 'tag team' with....its just me.
I'm fervently praying that as winter begins to draw to a close, hopefully we can avoid any more hospitalisations.
Now that Ive had my little sook and rant. Another thing that I feel is guilt. Nope, not guilt over my baby being born early, I had no control over that and reconciled myself with that early on. The guilt I feel is probably a bit odder and probably not entirely rational!!!
Jazz has severe chronic lung disease....but she's home and safe on home oxygen, yes she's been admitted to hospital a lot, often for 2-3 week stints....but we always know we'll be going home relatively soon; we can always see the light at the end of the tunnel. I get stressed, and I get sad and I find it difficult when she's hospitalised. And, like right now, I have a bit of a sook......and THATS where the feelings of guilt come in. Two months after Jazzie was born, we were joined in Bay 7, the isolette next to Jazzies, by the most incredible baby and her amazing mother. At the time it was just another very sick and amazing prem, but after meeting her mother Rebecca the next night, I found out that baby Taylor was the most miraculous little person I would ever meet. She was 'The pacemaker' baby. Beautiful Taylor was the amazing little soul who defied everything and was the smallest person to ever have a pacemaker. The pacemaker was bigger than her!! She broke boundaries and changed rules and pushed the medical team to the limits of their understanding and then beyond! Miraculous was a term that just didnt do justice for Taylor!!
Rebecca was from Wodonga and being so far away, she stayed at Ronald Macdonald house. Taylor endured many surgeries and mishaps and came through like the amazing fighter she was every time. Jazz and I were honoured to help celebrate Taylors first birthday in May 2010 and I honestly believed nothing could beat her! Also during May 2010, Bec gave birth to another amazing premmie, so now she had two incredible babies in NICU, fortunately Ella didnt have the same problems as Taylor. In september 2010, beautiful Taylor got too tired and after some illnesses, her poor little body couldnt cope any more and she passed away. I was shocked and devastated, I thought she would beat everything that was thrown at her! Ella is still in NICU, bay 5 and still on CPAP and she is 14 months old. Rebecca has been living at Ronnie Macs for 27 months with her incredibly resilient and wonderful son Dylan, and the light at the end of the tunnel is still not quite visible to them yet.
Rebecca is the most amazing person Ive met so far on my NICU/prem journey. Shes been a constaant 'fixture' in NICU and has endured heartache that I could barely even attempt to understand. She gets tired, misses her home and family, and sometimes gets sad, but shes resilient and strong and supportive and mostly a happy, wonderful, positive person. She really is an inspirational woman and I feel honoured and blessed to have met her.
So when I go off feeling sorry for myself and having a whinge, which I know is just normal, we all do it, I cant help but also feel guilty. Because whilst severe, jazzies chronic lung disease is only mild compared to Ellas severe chronic lung disease. And although Ive been in hospital a lot with Jazz, I get to go home with her and Bec is yet to experience that.
So over the past 2.5 years i've learned MANY things-
Like every other premmie mum - gratitude that my baby lived despite the odds being stacked against her, gratitude for my healthy (?) other children, for my amazing and supportive parents etc.
And so much gratitude that I always get to go home with my baby. Home is something that we too often take for granted.
Wednesday, 27 July 2011
Sunday, 3 July 2011
The rest of June- a little bit of calm
9th June
Having a better day today, still on half a litre but her heart rate has stopped dropping so far during this mornings sleep.....terrible night last night though with the wretched bloody alarm going off all night!!!
Got almost no sleep!
Drank pretty well today too.
Jazz took one step unaided towards me tonight!!
10th June
Much better today, I've turned her o2 down to a quarter and shes satting high 90's in her sleep. Didnt alarm much overnight thank god! But low heart rate alarm went off a few times during her morning sleep.
I took the rubbish out this morning and when I came back in, Jazz was standing on a chair! Later in the afternoon she climbed into her toybox and had a lovely play.
o2 went back to half this afternoon. She wasnt dropping too low, just to low 90's, but I figured a bit of extra help was ok. Will see how she goes with trying to drop it again tomorrow.
11th June
Jazz is much better again, still on half a litre, will try to turn her down tomorrow. She's been dancing (wiggling from side to side) since she was in ICU (when she was feeling better of course) Storm was listening to music today and she was dancing for him, she's such a clever girl!
Low HR alarm didnt go off during this mornings sleep.
12th June
Doing great! o2 down to 1/4 overnight and she satted high 90's all night! Low HR alarm didnt go off at all.
She hasnt been having as many siezures as she was. I think its definately an indicator that she's coming down with something when she has up to 30 in a day. She has her sleep deprived EEG on the 16th, should be interesting, I hope we get some answers
15th June
Jazz is doing brilliantly of course, still on a quarter of a litre o2, but could manage on an eighth, but i'll keep her on a quarter a little bit longer to build her strength a bit more. Sally weighed her today, she put on 340g and is now 6.96kg!! Yay! Back to her March weight!!
Today she waved her hand and said 'bye bye', she's so clever!!
Having a better day today, still on half a litre but her heart rate has stopped dropping so far during this mornings sleep.....terrible night last night though with the wretched bloody alarm going off all night!!!
Got almost no sleep!
Drank pretty well today too.
Jazz took one step unaided towards me tonight!!
10th June
Much better today, I've turned her o2 down to a quarter and shes satting high 90's in her sleep. Didnt alarm much overnight thank god! But low heart rate alarm went off a few times during her morning sleep.
I took the rubbish out this morning and when I came back in, Jazz was standing on a chair! Later in the afternoon she climbed into her toybox and had a lovely play.
o2 went back to half this afternoon. She wasnt dropping too low, just to low 90's, but I figured a bit of extra help was ok. Will see how she goes with trying to drop it again tomorrow.
11th June
Jazz is much better again, still on half a litre, will try to turn her down tomorrow. She's been dancing (wiggling from side to side) since she was in ICU (when she was feeling better of course) Storm was listening to music today and she was dancing for him, she's such a clever girl!
Low HR alarm didnt go off during this mornings sleep.
12th June
Doing great! o2 down to 1/4 overnight and she satted high 90's all night! Low HR alarm didnt go off at all.
She hasnt been having as many siezures as she was. I think its definately an indicator that she's coming down with something when she has up to 30 in a day. She has her sleep deprived EEG on the 16th, should be interesting, I hope we get some answers
15th June
Jazz is doing brilliantly of course, still on a quarter of a litre o2, but could manage on an eighth, but i'll keep her on a quarter a little bit longer to build her strength a bit more. Sally weighed her today, she put on 340g and is now 6.96kg!! Yay! Back to her March weight!!
Today she waved her hand and said 'bye bye', she's so clever!!
When will the rollercoaster end!!!??!!! RSV, Whooping cough and ICU
It has been extremely hectic lately!
Jazz put on 530g in the first month after starting polyjoule and the extra scoop of formula.
On the 21st May, Jazz spent the night with Paul while I stayed overnight on a chips camp with Kai and Paige. I had to wait until Jazz went to bed before I could leave though because every time I left the room Jazz freaked out! Paul was quite nervous because Jazz is still on the o2 and since the 17th of may has been having 30 of her little siezures a day, and they're just the ones I've seen!
The neurologist Michael Fahey wants to see more video, and she needs to have a sleep deprived EEG, he also wants me to keep a siezure diary.
Jazz did ok on the Saturday because I wasnt there when she woke up, but she was ultra clingy with Paul and wouldnt let him out of her sight until I got home.
As soon as she heard my voice she didnt want a bar of Paul and wouldnt even look at him!!
Throughout the next week, it seemed Jazz might be coming down with something and on Thursday the 27th May, I almost took her to Monash, but he was managing ok, I upped her ventolin as per her asthma plan and decided to see how she was on the Friday. She was having her RSV shot and seeing the infectious diseases doctor on the Friday.
We saw Dr Buttery on Friday at 9.30am, I told him I thought she was coming down with something as she had that whooping cough sound again. He checked her out and spoke to Dr armstrong, they said she was ok to have the shot and wasnt ED criteria yet.
We had to hang around at the hospital all day as she had an audiology appointment at 2pm (which she passed, but it did show some fluid or something in one ear) She had a long sleep before her audiology appointment. She refused any bottle and just wanted to go back to sleep.....very unlike her to sleep so much.
I decided to get her checked out after audiology. She had only had 160ml for the day and was pale and tired. When they checked her sats she was saturating at 87
She was admitted and put onto half a litre of oxygen.
On the saturday morning they did an NPA. She was tired, grizzly and not herself. o2 increased to 2.5l
Saturday night we got moved to a private room.
The sunday or Monday morning, Jazz started desatting, her o2 had gone up to 3 lt since friday, but was slowly coming down, she was on 2lt and she was dropping to the 80's, she was bumped up to 3lt , and the nurse left. Immediately I called her back because Jazz was still desatting. She bumped her up to 4lt and told me not to call again as she was going home, and to wait for the next nurse. Thomas wasnt far away thankfully and he gave a saline nebuliser in the hopes it would clear the mucous. Everything turned to shit so fast!! Within minutes she had 2 more nurses in with her, including Russell. Russell looked after her a bit up in Bay 5 as well, so he knew her quite well. They thought she had a mucous plug blocking her lung. A chest Xray was taken and ICU were called to assess her condition. Her oxygen via nasal prongs had increased to 10lt and she was having nebuliser after nebuliser with 8lt through the mask. Each time the nebuliser finished and was taken away and she was left with only 10lt, she desatted down to the 60's. Icu decided she needed to be there, so around 10.30am we went off to ICU on 18lt, it took 13-14 nebulisers to get her there.
She settled a bit once she got to ICU. She was put onto humidified oxygen with a mixer and initially was on 12lt at 100%. Slowly the o2 went down to 10lt at 60%. Npa and xray results came back. She had RSV, Whooping cough AGAIN, had aspirated a feed AND had a mucous plg!!! She came very close a few times to being put onto CPAP, only narrowly avoiding it when she again went up to 12 litres at 100%
I was shattered. It brought all the NICU memories rushing back in. I hadnt seen her look so sick since she was tiny in Bay 7. She was again having heel prick blood tests numerous times a day to monitor her sugars, phosphate and blood gasses, she had I.V's, nasogastric feeding and was so lethargic. Once again I was going through the rollercoaster of emotions, nurses had said she would likely end up on CPAP and could even need intubation and after living the NICU experience all the old worries about whether she'd make it came flooding back as well. I didnt want to leave her, and thankfully I didnt have to. They have special recliners that they bring in for a parent to sleep on, very uncomfortable, and I didnt get much sleep, but I certainly wouldnt be sleeping if I was at home!!
By Tuesday her oxygen was on 6 litres, I went on a break and when I returned she was once again back up to 12lt!!! They then realised that she was being lazy!! The machine that she was on, whilst not CPAP, does give a small amount of pressure and Jazz went back to her old ways.....dont need to breathe, machine will do it for me!! They finally twigged to it when they realised her breathing rate kept dropping. They decided to put her on the normal wall oxygen and lo and behold she started working again and o2 came down to 2lt at 100%!!!
Wednesday afternoon she made it back to the ward, thank goodness. Its hard staying in ICU, very scarey!
She still had a drip and the ng tube had been removed because the poor thing kept coughing it out. Wednesday evening the drip came out as it had tissued.
Thursday she was drinking a bit better. Shes been on 2-2.5lt oxygen awake and 3 lt asleep.
As I wrote this, it was Friday 4th June, shes drinking quite well, not eating though. Better within herself, but o2 is still 2-3lt. She was put back onto humidified o2 last night because the normal o2 dried her nose out and she started having nose bleeds. Her poor little nose was so sore looking!
When I saw Marc, he said the medical terinology for all that had happened was 'crap'!!!!
Jazz was 6.9kg when we got here, so far shes down to 6.6kg, but it could be a bit less as shes had 5 big vomits.
5 June 2010
Jazz is drinking a bit better, but hasnt been eating much. Her cough seems to be freshening a bit again....hope I'm wrong about that! Shes still on 2 lto2 and has been satting around 91-95
She might be turning a corner. Aside from the coughing fits and vomiting every time she has a coughing fit. Tonight she has dropped to 1-1 1/2lt o2 and has been satting low to mid 90's.
Shes also perkier!
6 June
Jazz managed to stay on 1.5lt all night! Little cow was up at 5.30am, oh god, I REALLY didnt want to get up!!
Sheplayed in her cot 'til 6.30am, drank 150ml formula!!!!! and went back to sleep, satting up to 96!
On the positive, Jazz is now on 1 litre and satting up to 96, on the downside, she had a very minor coughing fit followed by 5 big vomits.
David Armstrong saw her, he's very happy with her sats and said he'd really like to avoid the vomiting. There are 2 possible reasons for the vomiting, either she has a belly full of mucous or shes picked up gastro. He said its very common for bubs with RSV and whooping cough to vomit. If its gastro we'll know by this afternoon, but its unlikely because she's so active and perky and looks much better than yesterday!
12.40pm
Came back from my break to find the little bugger had dropped her sats to 86. We changed the sats probe and upped the o2 to no avail. Changed her sleeping position to a more upright one and she put herself on her tummy and her sats came back up to 95, but shes back on 1.5lt.
Jazz didnt sleep all afternoon. Mum brought the kids in to visit. Storm cried as soon as he saw her. By this time, 5pm, she was on 1.5litres o2 and satting nicely. She had a bottle and some custard, but vomited it up because I went to the toilet!! We are in a private room and I held the door open so she could just see me, but the minute I leave the room she becomes so hysterical that she vomits!!!
6.06pm
Jazz has drunk a bit more and is also coughing a bit more still. But o2 has dropped down to half a litre and she's satting low to mid 90's. Very unsettled though tonight. Shes tired, but as soon as you put her down ahe wakes. Refused strawberry mousse, had a nibble of a chicken chippee.
She finally fell asleep at 8.30pm. Bruna and Elvis came to see her around 9pm and the little ratbag woke up and wouldnt go back to sleep 'til 10.45pm!! She was just invincible!
7th June
So far so good oxygen wise. She's currently on a quarter of a litre. When the PSA came in this morning with the breakfast tray, Jazz woke just in time to see someone leaving the room and assumed it was me! She broke her little heart 'til I sat up in bed and said I'm still here!!!!
When she went to sleep this morning, she desatted and had to go back up to half a litre. When she woke, she was put back on half a litre and satting low 90's.
She staayed on a half and has been sent home with oximeter in tow. So excited to be home, but she wouldnt sleep!!When she finally did go to slepp at 11pm, she kept dropping her heart rate all night.
8th June
The Carelink nurse, Sally, came out to see Jazz. We tried Jazz on 1/4 of a litre, but she desatted when she was asleep, to mid to high 80's. So back up to half a litre. Sally weighed her, she's 6.6kg
She had a better day as far as bottles go- 500ml for the day!!! Thats her best effort for a very long time!
Forgot to mention that 3 weeks ago, Jazz started walking with her little block wagon. She walks the length of the loungeroom, then turns to see you clap and 'hooray', turns herself around and rides it back as though it was a scooter!!
She's been so happy to be home. Loves wandering around and playing with her toys. She can stand alone now for 30seconds!!!
Jazz put on 530g in the first month after starting polyjoule and the extra scoop of formula.
On the 21st May, Jazz spent the night with Paul while I stayed overnight on a chips camp with Kai and Paige. I had to wait until Jazz went to bed before I could leave though because every time I left the room Jazz freaked out! Paul was quite nervous because Jazz is still on the o2 and since the 17th of may has been having 30 of her little siezures a day, and they're just the ones I've seen!
The neurologist Michael Fahey wants to see more video, and she needs to have a sleep deprived EEG, he also wants me to keep a siezure diary.
Jazz did ok on the Saturday because I wasnt there when she woke up, but she was ultra clingy with Paul and wouldnt let him out of her sight until I got home.
As soon as she heard my voice she didnt want a bar of Paul and wouldnt even look at him!!
Throughout the next week, it seemed Jazz might be coming down with something and on Thursday the 27th May, I almost took her to Monash, but he was managing ok, I upped her ventolin as per her asthma plan and decided to see how she was on the Friday. She was having her RSV shot and seeing the infectious diseases doctor on the Friday.
We saw Dr Buttery on Friday at 9.30am, I told him I thought she was coming down with something as she had that whooping cough sound again. He checked her out and spoke to Dr armstrong, they said she was ok to have the shot and wasnt ED criteria yet.
We had to hang around at the hospital all day as she had an audiology appointment at 2pm (which she passed, but it did show some fluid or something in one ear) She had a long sleep before her audiology appointment. She refused any bottle and just wanted to go back to sleep.....very unlike her to sleep so much.
I decided to get her checked out after audiology. She had only had 160ml for the day and was pale and tired. When they checked her sats she was saturating at 87
She was admitted and put onto half a litre of oxygen.
On the saturday morning they did an NPA. She was tired, grizzly and not herself. o2 increased to 2.5l
Saturday night we got moved to a private room.
The sunday or Monday morning, Jazz started desatting, her o2 had gone up to 3 lt since friday, but was slowly coming down, she was on 2lt and she was dropping to the 80's, she was bumped up to 3lt , and the nurse left. Immediately I called her back because Jazz was still desatting. She bumped her up to 4lt and told me not to call again as she was going home, and to wait for the next nurse. Thomas wasnt far away thankfully and he gave a saline nebuliser in the hopes it would clear the mucous. Everything turned to shit so fast!! Within minutes she had 2 more nurses in with her, including Russell. Russell looked after her a bit up in Bay 5 as well, so he knew her quite well. They thought she had a mucous plug blocking her lung. A chest Xray was taken and ICU were called to assess her condition. Her oxygen via nasal prongs had increased to 10lt and she was having nebuliser after nebuliser with 8lt through the mask. Each time the nebuliser finished and was taken away and she was left with only 10lt, she desatted down to the 60's. Icu decided she needed to be there, so around 10.30am we went off to ICU on 18lt, it took 13-14 nebulisers to get her there.
She settled a bit once she got to ICU. She was put onto humidified oxygen with a mixer and initially was on 12lt at 100%. Slowly the o2 went down to 10lt at 60%. Npa and xray results came back. She had RSV, Whooping cough AGAIN, had aspirated a feed AND had a mucous plg!!! She came very close a few times to being put onto CPAP, only narrowly avoiding it when she again went up to 12 litres at 100%
I was shattered. It brought all the NICU memories rushing back in. I hadnt seen her look so sick since she was tiny in Bay 7. She was again having heel prick blood tests numerous times a day to monitor her sugars, phosphate and blood gasses, she had I.V's, nasogastric feeding and was so lethargic. Once again I was going through the rollercoaster of emotions, nurses had said she would likely end up on CPAP and could even need intubation and after living the NICU experience all the old worries about whether she'd make it came flooding back as well. I didnt want to leave her, and thankfully I didnt have to. They have special recliners that they bring in for a parent to sleep on, very uncomfortable, and I didnt get much sleep, but I certainly wouldnt be sleeping if I was at home!!
By Tuesday her oxygen was on 6 litres, I went on a break and when I returned she was once again back up to 12lt!!! They then realised that she was being lazy!! The machine that she was on, whilst not CPAP, does give a small amount of pressure and Jazz went back to her old ways.....dont need to breathe, machine will do it for me!! They finally twigged to it when they realised her breathing rate kept dropping. They decided to put her on the normal wall oxygen and lo and behold she started working again and o2 came down to 2lt at 100%!!!
Wednesday afternoon she made it back to the ward, thank goodness. Its hard staying in ICU, very scarey!
She still had a drip and the ng tube had been removed because the poor thing kept coughing it out. Wednesday evening the drip came out as it had tissued.
Thursday she was drinking a bit better. Shes been on 2-2.5lt oxygen awake and 3 lt asleep.
As I wrote this, it was Friday 4th June, shes drinking quite well, not eating though. Better within herself, but o2 is still 2-3lt. She was put back onto humidified o2 last night because the normal o2 dried her nose out and she started having nose bleeds. Her poor little nose was so sore looking!
When I saw Marc, he said the medical terinology for all that had happened was 'crap'!!!!
Jazz was 6.9kg when we got here, so far shes down to 6.6kg, but it could be a bit less as shes had 5 big vomits.
5 June 2010
Jazz is drinking a bit better, but hasnt been eating much. Her cough seems to be freshening a bit again....hope I'm wrong about that! Shes still on 2 lto2 and has been satting around 91-95
She might be turning a corner. Aside from the coughing fits and vomiting every time she has a coughing fit. Tonight she has dropped to 1-1 1/2lt o2 and has been satting low to mid 90's.
Shes also perkier!
6 June
Jazz managed to stay on 1.5lt all night! Little cow was up at 5.30am, oh god, I REALLY didnt want to get up!!
Sheplayed in her cot 'til 6.30am, drank 150ml formula!!!!! and went back to sleep, satting up to 96!
On the positive, Jazz is now on 1 litre and satting up to 96, on the downside, she had a very minor coughing fit followed by 5 big vomits.
David Armstrong saw her, he's very happy with her sats and said he'd really like to avoid the vomiting. There are 2 possible reasons for the vomiting, either she has a belly full of mucous or shes picked up gastro. He said its very common for bubs with RSV and whooping cough to vomit. If its gastro we'll know by this afternoon, but its unlikely because she's so active and perky and looks much better than yesterday!
12.40pm
Came back from my break to find the little bugger had dropped her sats to 86. We changed the sats probe and upped the o2 to no avail. Changed her sleeping position to a more upright one and she put herself on her tummy and her sats came back up to 95, but shes back on 1.5lt.
Jazz didnt sleep all afternoon. Mum brought the kids in to visit. Storm cried as soon as he saw her. By this time, 5pm, she was on 1.5litres o2 and satting nicely. She had a bottle and some custard, but vomited it up because I went to the toilet!! We are in a private room and I held the door open so she could just see me, but the minute I leave the room she becomes so hysterical that she vomits!!!
6.06pm
Jazz has drunk a bit more and is also coughing a bit more still. But o2 has dropped down to half a litre and she's satting low to mid 90's. Very unsettled though tonight. Shes tired, but as soon as you put her down ahe wakes. Refused strawberry mousse, had a nibble of a chicken chippee.
She finally fell asleep at 8.30pm. Bruna and Elvis came to see her around 9pm and the little ratbag woke up and wouldnt go back to sleep 'til 10.45pm!! She was just invincible!
7th June
So far so good oxygen wise. She's currently on a quarter of a litre. When the PSA came in this morning with the breakfast tray, Jazz woke just in time to see someone leaving the room and assumed it was me! She broke her little heart 'til I sat up in bed and said I'm still here!!!!
When she went to sleep this morning, she desatted and had to go back up to half a litre. When she woke, she was put back on half a litre and satting low 90's.
She staayed on a half and has been sent home with oximeter in tow. So excited to be home, but she wouldnt sleep!!When she finally did go to slepp at 11pm, she kept dropping her heart rate all night.
8th June
The Carelink nurse, Sally, came out to see Jazz. We tried Jazz on 1/4 of a litre, but she desatted when she was asleep, to mid to high 80's. So back up to half a litre. Sally weighed her, she's 6.6kg
She had a better day as far as bottles go- 500ml for the day!!! Thats her best effort for a very long time!
Forgot to mention that 3 weeks ago, Jazz started walking with her little block wagon. She walks the length of the loungeroom, then turns to see you clap and 'hooray', turns herself around and rides it back as though it was a scooter!!
She's been so happy to be home. Loves wandering around and playing with her toys. She can stand alone now for 30seconds!!!
April 2010- the ups and downs continue part 2
14/4
Jazz had a great night. When Marc came by he was astounded and said we could go home!!
He said she has incredible resilience!!
16/4
Jazz's cough sounds like its freshening again and its been a HUGE struggle to get the bottle into her!
She had speech therapy today and did brilliantly, the speech therapist said to keep doing what I've been doing, which is giving her little lumps from time to time and to increase the lumpiness a bit. With miniscule lumps she gags and with bigger lumps she actually vomits.
17/4
Still fighting the bottles. The kids and I went to the market, and for a picnic today, they had a ball!! Jazzies cough freshened up again late afternoon so we came home. They said it was the best day they'd had in a long time!
18/4
Jazz had coughing fits throughout the night, but not bad enough to go to Monash.
She took 90ml in a bottle this morning, thats promising
19/4
Jazz had her neurology appointment today Jazz does have mild C.P. The neurologist said it will either be diplegic (both legs) or left hemiplegic. The eye rolling siezures are related to the scarring on the brain that has caused the CP. He said she have a limp, or could even have no symptoms but we do need to keep an eye on things. According to Tiff the physio, we will know more by the end of the year. This year the myelin gets laid down over the nerve endings which is why things are showing up now. As the process goes on, it'll either get worse or stay the same. She wont lose the abilities she has though. The neurologist wants me to catch the eye roll clusters on video.
20/4
Saw the dietician today. She said Failure to thrive, I say insanely active child!!! Jazz is on the 10th centile of the premmie chartfor corrected age for length, but no where near the chart for weight.
Have to add an extra scoop of formula, and add polyjoule to her food and try a high energy diet for a while. We'll see her again in June.
26/4
Jazz looks like she's putting on weight.
Still having the coughing fits off and on but hasnt needed to go to hospital. We went to rachels birthday party on the 24th, Jazz was really good!!
On the 25th, Jazz had a few coughing fits that caused her to throw up everywhere!!
Jazz had a great night. When Marc came by he was astounded and said we could go home!!
He said she has incredible resilience!!
16/4
Jazz's cough sounds like its freshening again and its been a HUGE struggle to get the bottle into her!
She had speech therapy today and did brilliantly, the speech therapist said to keep doing what I've been doing, which is giving her little lumps from time to time and to increase the lumpiness a bit. With miniscule lumps she gags and with bigger lumps she actually vomits.
17/4
Still fighting the bottles. The kids and I went to the market, and for a picnic today, they had a ball!! Jazzies cough freshened up again late afternoon so we came home. They said it was the best day they'd had in a long time!
18/4
Jazz had coughing fits throughout the night, but not bad enough to go to Monash.
She took 90ml in a bottle this morning, thats promising
19/4
Jazz had her neurology appointment today Jazz does have mild C.P. The neurologist said it will either be diplegic (both legs) or left hemiplegic. The eye rolling siezures are related to the scarring on the brain that has caused the CP. He said she have a limp, or could even have no symptoms but we do need to keep an eye on things. According to Tiff the physio, we will know more by the end of the year. This year the myelin gets laid down over the nerve endings which is why things are showing up now. As the process goes on, it'll either get worse or stay the same. She wont lose the abilities she has though. The neurologist wants me to catch the eye roll clusters on video.
20/4
Saw the dietician today. She said Failure to thrive, I say insanely active child!!! Jazz is on the 10th centile of the premmie chartfor corrected age for length, but no where near the chart for weight.
Have to add an extra scoop of formula, and add polyjoule to her food and try a high energy diet for a while. We'll see her again in June.
26/4
Jazz looks like she's putting on weight.
Still having the coughing fits off and on but hasnt needed to go to hospital. We went to rachels birthday party on the 24th, Jazz was really good!!
On the 25th, Jazz had a few coughing fits that caused her to throw up everywhere!!
April 2010- and the ups and downs continue part 1
1/4
Jazz had a bad night, lots of coughing fits, desatting to 80.
This morning she had 2 massive coughing fits with desats to the 60's and increased o2.
David Armstrong said when shes on 1/4 of a litre of o2, no suctions and no desats she can come home. After 5 days on antibiotics, the pertussis bacteria is dead so she wont be contagious, but the damage is done and she could have a very nasty cough for up to 3 months. She could even end up back in hospital with it!
Easter Bunny came around this morning, he wasnt allowed in Jasmine's room, but Jazz got close to the glass, she loved him! He gave her a cadbury soft toy Easter bunny, she loved it too!!! She was also given a lovely quilt and knitted teddy that had been made by volunteers, its her third gorgeous quilt from Monash.
2/4
Jazz had a better night, a couple of coughing fits but o2 stayed the same and no desats. Saw David today and he said we can go home!!!! On o2 of course. Had to wait all day for the meds, didnt leave until 2.30pm!!
So glad to be home with the kids!!! Jazz was rapt to see them and they were so excited to see us!
3/4
The kids love having Jazzie home. Shes having a ball, cruising around everywhere. Shes still not drinking well, but not toooo bad.
The carelink nurse came to see how she was going, she said Jazz is doing very well and one of them will be back to see her again next week.
Jazz is still doing the eye rolling thing and also arching, but predominately the eye rolls.
4/4- Easter Sunday
Jazz had a lovely day at my brothers , loved her eggs, loved playing with all the kids....so glad we got to be home for Easter....didnt want to do Easter again in hospital!!
6/4
Saw the carelink nurse. She said Jazz really should be seeing a dietician as you can see every rib and bone and vertebrae in her body...she said Jazz looks like a ridge back!! The nurse spun out because shes 13 months old and only 6 kilos, but shes really 9 months old.
10/4
Jazz got sick again on the 7th, she had a roaring temperature, as it was late we gave her panadol and kept an eye on her. On the 8th I took her to the GP, her temp was 40 so I was told to take her to Monash. They said if she drank a bottle and stayed still long enough to check that her sats were ok we could go home......took a couple of hours!!!! Temp was gone on the 9th, but shes still a bit under the weather- hard to know if shes coughing from the whooping cough or something else.
She started waving hello and goodbye today.
11/4
Jazz has been having coughing fits progressively getting worse. This afternoon she was having her lunch (around 2pm, her times are off cos shes been off her bottles again since yesterday) she had a massive coughing fit and went very blue. I turned her o2 up a bit and patted her back lots, she started breathing again, she was coughing so much she just couldnt get a breath!! I thought she'd inhaled some food from coughing and choked
Shes been having a few coughing fits since then, turning red, no more blue episodes.
Watching her very carefully, I dont want to take her out in this cold weather to wait in a germy hospital if I dont have to!!
Jazz got progressively worse, no more blue spells but the nasty coughing fits and turning red every half hour.
I went to put her in the car to go to Monash and she had another nasty coughing fit. I got really scared, what if she had one of the blue ones while I was driving on my own in the dark and cold.......
So I called the ambulance. They checked her out and took us straight to Monash.
12/4
Jazz wasnt having a huge amount of coughing fits by the time we got to Monash, but finally had a really bad one in front of the doctor, they decided to admit her, its the whooping cough.
We finally got up to the ward at 5.30am....and I got woken at 7am
Jazz slept a lot today and Marc said she could possibly stay in for up to 12 days!!
13/4
Jazz had a much better night. When Marc saw her this morning he was amazed at the turn around and said she wouldnt be in for 12 days after all!! Shes incredible!
Jazz had a bad night, lots of coughing fits, desatting to 80.
This morning she had 2 massive coughing fits with desats to the 60's and increased o2.
David Armstrong said when shes on 1/4 of a litre of o2, no suctions and no desats she can come home. After 5 days on antibiotics, the pertussis bacteria is dead so she wont be contagious, but the damage is done and she could have a very nasty cough for up to 3 months. She could even end up back in hospital with it!
Easter Bunny came around this morning, he wasnt allowed in Jasmine's room, but Jazz got close to the glass, she loved him! He gave her a cadbury soft toy Easter bunny, she loved it too!!! She was also given a lovely quilt and knitted teddy that had been made by volunteers, its her third gorgeous quilt from Monash.
2/4
Jazz had a better night, a couple of coughing fits but o2 stayed the same and no desats. Saw David today and he said we can go home!!!! On o2 of course. Had to wait all day for the meds, didnt leave until 2.30pm!!
So glad to be home with the kids!!! Jazz was rapt to see them and they were so excited to see us!
3/4
The kids love having Jazzie home. Shes having a ball, cruising around everywhere. Shes still not drinking well, but not toooo bad.
The carelink nurse came to see how she was going, she said Jazz is doing very well and one of them will be back to see her again next week.
Jazz is still doing the eye rolling thing and also arching, but predominately the eye rolls.
4/4- Easter Sunday
Jazz had a lovely day at my brothers , loved her eggs, loved playing with all the kids....so glad we got to be home for Easter....didnt want to do Easter again in hospital!!
6/4
Saw the carelink nurse. She said Jazz really should be seeing a dietician as you can see every rib and bone and vertebrae in her body...she said Jazz looks like a ridge back!! The nurse spun out because shes 13 months old and only 6 kilos, but shes really 9 months old.
10/4
Jazz got sick again on the 7th, she had a roaring temperature, as it was late we gave her panadol and kept an eye on her. On the 8th I took her to the GP, her temp was 40 so I was told to take her to Monash. They said if she drank a bottle and stayed still long enough to check that her sats were ok we could go home......took a couple of hours!!!! Temp was gone on the 9th, but shes still a bit under the weather- hard to know if shes coughing from the whooping cough or something else.
She started waving hello and goodbye today.
11/4
Jazz has been having coughing fits progressively getting worse. This afternoon she was having her lunch (around 2pm, her times are off cos shes been off her bottles again since yesterday) she had a massive coughing fit and went very blue. I turned her o2 up a bit and patted her back lots, she started breathing again, she was coughing so much she just couldnt get a breath!! I thought she'd inhaled some food from coughing and choked
Shes been having a few coughing fits since then, turning red, no more blue episodes.
Watching her very carefully, I dont want to take her out in this cold weather to wait in a germy hospital if I dont have to!!
Jazz got progressively worse, no more blue spells but the nasty coughing fits and turning red every half hour.
I went to put her in the car to go to Monash and she had another nasty coughing fit. I got really scared, what if she had one of the blue ones while I was driving on my own in the dark and cold.......
So I called the ambulance. They checked her out and took us straight to Monash.
12/4
Jazz wasnt having a huge amount of coughing fits by the time we got to Monash, but finally had a really bad one in front of the doctor, they decided to admit her, its the whooping cough.
We finally got up to the ward at 5.30am....and I got woken at 7am
Jazz slept a lot today and Marc said she could possibly stay in for up to 12 days!!
13/4
Jazz had a much better night. When Marc saw her this morning he was amazed at the turn around and said she wouldnt be in for 12 days after all!! Shes incredible!
March 2010- 1st birthday and the rollercoaster begins again
1/3
Been very busy lately..
Jazz was in hospital again the weekend before last. Mild bronchiolitis again, only 1 night this time thank goodness!
She's been a bitch to feed, but is happy, active and well hydrated so no ones too concerned. She has a pattern of losing weight one week and gaining the next.
While we were in hospital they told me I needed to prepare for winter- everyone has to have the flu shot and vaccinations up to date. So, of course, the ex-husband is kicking up a stink and wont allow the boys to be vaccinated (despite the fact that they are old enough that there will be no extremely adverse reactions) he said he didnt care if Jasmine died of a preventable disease. He eventually agreed, but wants the doctors number so he can threaten her with litigation....wanker
Jazz started crawling yesterday!!! Real crawling!! Very jerky in her right leg.....quite odd to watch.
Her first tooth is almost through and really giving her hell, I think thats definately contributing to her naughty feeding behaviour!!
7/3
Jazzies first tooth is juuuuuuust through!! My god she struggled getting that!! And she's had really nasty nappy rash for the past 3 days from it!
Shes a bit unsettled today...wondering if her next tooth is on the move
She's a funny girl, she likes to crawl/climb over things and she can open the baby gate and come into the kitchen if its not latched properly.
23/3
What a shit time we've been having!!
On the 15th march- the night before her 1st birthday we got the call from Nick to say Jazz could come off oxygen all together!!! It was so exciting, what a great birthday present! She had a good night with no oxygen, but on the morning of her birthday she woke sounding like a little freight train.
The kids gave her her birthday pressies, then mum got them ready for school while Jazz and I headed to Monash.
We got to Monash at 10am and she was pretty much admitted straight away and put back on oxygen. As there were no beds available, we spent 24 hours in emergency, poor little poppet, what a crappy birthday. I bought her a hocolate muffin from Zoukis and sang happy birthday to her....but the muffin was stale... :(
While we were there she started doing this wierd thing with her eyes, they'd roll back in her head, it was really odd.
She kept doing it more and more frequently over the time weve been here, I kept telling the nurses but none had seen it so I think they kind of put it down to me being a paranoid mum, but eventually she had a proper but thankfully brief siezure in front of a nurse. Turns out the eye rolls are some sort of siezure.
She was put straight onto half a litre of oxygen (usually on an eighth) as soon as we got into emergency. Since Tuesday she's been on o2 and has gone up to 3 quarters of a litre and is currently on half a litre when asleep and a quarter when awake. Its Tuesday again now, 1 week later. Marc, the respiratory consultant is happy for her to go home if we can get an oximeter!! Fingers crossed!! Hopefully we'll see the neeurologist today and she is booked in for an eeg. She hit another milestone in hospital- she pulls herself up to stand!
And also got her second tooth!
The neurologist didnt show up and no one seemed to know anything about it!! Later they said she'd be coming for the eeg as an outpatient, so I cracked the shits and spoke to Nick. Neurology sent a lacky up, we got no joy, but Marc said she IS booked for the EEg even though everyone else says shes not.
As far as respiratory goes, jazz will still be here for another 3-4 days, she's improving, but slowly. Nick wants her on 4 hrly ventolin and shes on a steroid inhalent twice a day.
Had the EEG this afternoon, hopefully we'll get some answers!
25/3
Well, the EEG came back normal....which is great that its not epilepsy...but it still doesnt give us any answers!
Bac and Ava, and Cushla and the twins came in to visit today, it was great!!
Later on Shweeta came in with Jay, hes so big and very gorgeous!
Had a bloody stupid nurse just stand and watch Jazz desatting to 82!! I told him to check her sats probe while I checked the prongs and connections. He had to turn her up to a litre and still she desatted, in the end, she needed a suction, poor thing. Bloody stupid nurse, lucky I'm in here!!!
26/3
Jazz is having really nasty coughing, choking fits. Shes coughing up mucous which the sounds like its choking her, she had been getting better so I dont know if the cold has freshened or shes picked up something else.
Had to have all her mucous suctioned out again.
She had a big eye rolling episode in front of a njurse today.
Shes very, very hyper, especially when she has the ventolin!! and spent half the day moving. beeping and blowing raspberries, then got extremely tired and slept from 6-8, then had ventolin and bottle and went straight back to sleep. Unsettled and coughing all night though.
30/3
Yesterday we were told we were ok to go to the playroom for the 'smile day' festivities with NOVA and the clown doctors. Jazz got a hannah montana purse that she loved chewing on!
Had to race up to the servo last night while Jazz was asleep. Turns out the little bugger power napped and when I returned she was surrounded by nurses and absolutely hysterical! They hadnt been able to calm her at all and Russell said she had herself so hysterical that she desatted to 50!!! Mums girl!!
Today shes having lots of coughing and choking fits and has needed suctioning quite a few times in order to reathe!! Poor little thing goes bright crimson! A couple of times the o2 has had to go up to 1 litre, suction needed and an o2 mask wafted in front of her face as well!! The other kids are sick now. Kai has a temp of 39.1 and headaches and Paige is 39.3 with headaches.
Shes been 'cruising' around her cot a lot too and wont know herself when she gets home!!
At around 2pm they told me the NPA (nasal pharangeal aspirate, in laymans terms, snot swab) results were back and Jazz had contracted whooping cough since she was admitted.
When you're beginning to graduate through the bays on your way home from NICU, you are warned that the first winter especially will be rough, but you really dont understand ( or I didnt) that what they really mean is that just because you leave hospital, it doesnt mean the rollercoaster ride has ended. It takes some new twists and turns, and dips and dives...and sometimes climbs to amazing heights....but you dont get off the ride yet.....
Been very busy lately..
Jazz was in hospital again the weekend before last. Mild bronchiolitis again, only 1 night this time thank goodness!
She's been a bitch to feed, but is happy, active and well hydrated so no ones too concerned. She has a pattern of losing weight one week and gaining the next.
While we were in hospital they told me I needed to prepare for winter- everyone has to have the flu shot and vaccinations up to date. So, of course, the ex-husband is kicking up a stink and wont allow the boys to be vaccinated (despite the fact that they are old enough that there will be no extremely adverse reactions) he said he didnt care if Jasmine died of a preventable disease. He eventually agreed, but wants the doctors number so he can threaten her with litigation....wanker
Jazz started crawling yesterday!!! Real crawling!! Very jerky in her right leg.....quite odd to watch.
Her first tooth is almost through and really giving her hell, I think thats definately contributing to her naughty feeding behaviour!!
7/3
Jazzies first tooth is juuuuuuust through!! My god she struggled getting that!! And she's had really nasty nappy rash for the past 3 days from it!
Shes a bit unsettled today...wondering if her next tooth is on the move
She's a funny girl, she likes to crawl/climb over things and she can open the baby gate and come into the kitchen if its not latched properly.
23/3
What a shit time we've been having!!
On the 15th march- the night before her 1st birthday we got the call from Nick to say Jazz could come off oxygen all together!!! It was so exciting, what a great birthday present! She had a good night with no oxygen, but on the morning of her birthday she woke sounding like a little freight train.
The kids gave her her birthday pressies, then mum got them ready for school while Jazz and I headed to Monash.
We got to Monash at 10am and she was pretty much admitted straight away and put back on oxygen. As there were no beds available, we spent 24 hours in emergency, poor little poppet, what a crappy birthday. I bought her a hocolate muffin from Zoukis and sang happy birthday to her....but the muffin was stale... :(
While we were there she started doing this wierd thing with her eyes, they'd roll back in her head, it was really odd.
She kept doing it more and more frequently over the time weve been here, I kept telling the nurses but none had seen it so I think they kind of put it down to me being a paranoid mum, but eventually she had a proper but thankfully brief siezure in front of a nurse. Turns out the eye rolls are some sort of siezure.
She was put straight onto half a litre of oxygen (usually on an eighth) as soon as we got into emergency. Since Tuesday she's been on o2 and has gone up to 3 quarters of a litre and is currently on half a litre when asleep and a quarter when awake. Its Tuesday again now, 1 week later. Marc, the respiratory consultant is happy for her to go home if we can get an oximeter!! Fingers crossed!! Hopefully we'll see the neeurologist today and she is booked in for an eeg. She hit another milestone in hospital- she pulls herself up to stand!
And also got her second tooth!
The neurologist didnt show up and no one seemed to know anything about it!! Later they said she'd be coming for the eeg as an outpatient, so I cracked the shits and spoke to Nick. Neurology sent a lacky up, we got no joy, but Marc said she IS booked for the EEg even though everyone else says shes not.
As far as respiratory goes, jazz will still be here for another 3-4 days, she's improving, but slowly. Nick wants her on 4 hrly ventolin and shes on a steroid inhalent twice a day.
Had the EEG this afternoon, hopefully we'll get some answers!
25/3
Well, the EEG came back normal....which is great that its not epilepsy...but it still doesnt give us any answers!
Bac and Ava, and Cushla and the twins came in to visit today, it was great!!
Later on Shweeta came in with Jay, hes so big and very gorgeous!
Had a bloody stupid nurse just stand and watch Jazz desatting to 82!! I told him to check her sats probe while I checked the prongs and connections. He had to turn her up to a litre and still she desatted, in the end, she needed a suction, poor thing. Bloody stupid nurse, lucky I'm in here!!!
26/3
Jazz is having really nasty coughing, choking fits. Shes coughing up mucous which the sounds like its choking her, she had been getting better so I dont know if the cold has freshened or shes picked up something else.
Had to have all her mucous suctioned out again.
She had a big eye rolling episode in front of a njurse today.
Shes very, very hyper, especially when she has the ventolin!! and spent half the day moving. beeping and blowing raspberries, then got extremely tired and slept from 6-8, then had ventolin and bottle and went straight back to sleep. Unsettled and coughing all night though.
30/3
Yesterday we were told we were ok to go to the playroom for the 'smile day' festivities with NOVA and the clown doctors. Jazz got a hannah montana purse that she loved chewing on!
Had to race up to the servo last night while Jazz was asleep. Turns out the little bugger power napped and when I returned she was surrounded by nurses and absolutely hysterical! They hadnt been able to calm her at all and Russell said she had herself so hysterical that she desatted to 50!!! Mums girl!!
Today shes having lots of coughing and choking fits and has needed suctioning quite a few times in order to reathe!! Poor little thing goes bright crimson! A couple of times the o2 has had to go up to 1 litre, suction needed and an o2 mask wafted in front of her face as well!! The other kids are sick now. Kai has a temp of 39.1 and headaches and Paige is 39.3 with headaches.
Shes been 'cruising' around her cot a lot too and wont know herself when she gets home!!
At around 2pm they told me the NPA (nasal pharangeal aspirate, in laymans terms, snot swab) results were back and Jazz had contracted whooping cough since she was admitted.
When you're beginning to graduate through the bays on your way home from NICU, you are warned that the first winter especially will be rough, but you really dont understand ( or I didnt) that what they really mean is that just because you leave hospital, it doesnt mean the rollercoaster ride has ended. It takes some new twists and turns, and dips and dives...and sometimes climbs to amazing heights....but you dont get off the ride yet.....
February.......mild CP.....WTF??
7 months corrected!!
Jazz is being a bit naughty! Slowly starting to take her bottles better, but going off the solids over the past 2 days! I cant win! She lost 60g this time. It appears as though that delightful great feeding, weight gain honeymoon may be well and truly on the way out!
She had physio today, minor kick in the guts. She pushes back A LOT when you try to sit her up, I just thought she REALLY wanted to lie down, but according to Rochelle it could be a sign of mild CP. The same with the tippy toes when she stands, and this wierd shaking/vibrating thing she does sometimes....almost siezure-like. Why a kick in the guts you may be asking, its only mild. Yep, it is. The kick in the guts comes from believing there was nothing at all wrong, she was THE miracle baby!! (of course, she still is) but given how well she'd done, it was something I absolutely never expected!! One of the reasons it was unexpected was because I was under the impression that the CP came from brain bleeds and Jazz had none. I was told the ventilator, steroids and of course meningitis could cause developmental delays etc...but no one actually said CP when in fact those things of course can cause it, so I thought we were out of the CP woods!! And even though its mild, we wont know for a while just how that will affect her. It didnt get me down at all, just completely unexpected!!!!
She's doing everything else brilliantly, rolling onto her tummy and moving around all the time now so I think if it does turn out to definately be CP I dont think it'll be a handicap.
16/2
On the 12/2 Jazz started trying to get up on her hands and knees! On the 14th not only did she succeed but she started the rocking motion!!!!!
Last week she was weighed, shes being weighed weekly again due to her losses, and that week she actually gained 290g!!!! Way to go Jazz!!.......weighed again today and lost 85g, OMG!! We just cant figure her out!
Shes happy and active, probably too active, drinking her bottles a bit better (except for today!) but not eating much....cant win!
She starts early intervention tomorrow, at Biala, which is where Kai had his early intervention.
Jazz is being a bit naughty! Slowly starting to take her bottles better, but going off the solids over the past 2 days! I cant win! She lost 60g this time. It appears as though that delightful great feeding, weight gain honeymoon may be well and truly on the way out!
She had physio today, minor kick in the guts. She pushes back A LOT when you try to sit her up, I just thought she REALLY wanted to lie down, but according to Rochelle it could be a sign of mild CP. The same with the tippy toes when she stands, and this wierd shaking/vibrating thing she does sometimes....almost siezure-like. Why a kick in the guts you may be asking, its only mild. Yep, it is. The kick in the guts comes from believing there was nothing at all wrong, she was THE miracle baby!! (of course, she still is) but given how well she'd done, it was something I absolutely never expected!! One of the reasons it was unexpected was because I was under the impression that the CP came from brain bleeds and Jazz had none. I was told the ventilator, steroids and of course meningitis could cause developmental delays etc...but no one actually said CP when in fact those things of course can cause it, so I thought we were out of the CP woods!! And even though its mild, we wont know for a while just how that will affect her. It didnt get me down at all, just completely unexpected!!!!
She's doing everything else brilliantly, rolling onto her tummy and moving around all the time now so I think if it does turn out to definately be CP I dont think it'll be a handicap.
16/2
On the 12/2 Jazz started trying to get up on her hands and knees! On the 14th not only did she succeed but she started the rocking motion!!!!!
Last week she was weighed, shes being weighed weekly again due to her losses, and that week she actually gained 290g!!!! Way to go Jazz!!.......weighed again today and lost 85g, OMG!! We just cant figure her out!
Shes happy and active, probably too active, drinking her bottles a bit better (except for today!) but not eating much....cant win!
She starts early intervention tomorrow, at Biala, which is where Kai had his early intervention.
Subscribe to:
Posts (Atom)