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.