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
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