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.
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