Wow, 28 weeks! For a little girl who wasnt expected to live past 20 weeks gestation, she'd done incredibly well! And while her oxygen had been ever so slowly creeping up over the past 4 weeks I had no doubt her incredible strength would overcome any obstacle put in her path! I am by nature a generally positive person but I was also a realist enough to know that Jazzies life was still teetering on a knife edge, however it was so very important to me that I keep those thoughts of what could still go wrong tucked safely away in those darkest recesses of my mind, and focus only on positives. I continued telling her how strong and healthy she was as I really believe the power of positive thinking is an extremely powerful thing.
Having been diagnosed with Rheumatoid Arthritis so young, I have seen many older people only recently diagnosed (months rather than years) quickly become almost completely crippled, and I have seen many children not let it defeat them at all. For myself; I never let it beat me down, at 19 I was told I'd be completely bedridden by the time I was 30......I'm now 40 and the arthritis has burned itself out....yes, ive been left with deformities and some limited use of hands...but I can still do almost anything I attempt because I wont give in to negative thinking!!
So, Jazz was bombarded by so much positivity that a couple of the younger nurses I think became a bit concerned that I may be completely deluding myself. With looks of pity on their faces, every now and then, they kind of tried to bring me back to their version of reality. And after living the NICU experience, I can understand, to an extent, their concerns. They do see a lot of babies that dont make it, and theres just no way to predict each bub's outcome, but I told them that I was aware of all that could go wrong, and that I believed it didnt matter if I was positive or negative about the outcome. If my baby passed I'd be just as shattered either way.
So at 28 weeks, Jazz continued her little pattern of desats and oxygen ups and downs. She'd been having lots of secretions suctioned from her tube, and each time she desatted less when it was done. Her tummy remained big at 21cm, but still soft, she looked like one of those malnourished world vision babies. Huge tummy and stick figure arms and legs. We still had no official report on the PDA. Jazz was weighed again and had put on 59g in 3 days bringing her weight up to 722g!! Getting closer to that first big miestone of 1kg and earning her 1 kilogram certificate!! and the ability to wear premmie clothes! She got so angry this day that when I changed her, she arched literally 2 inches off the bed....what a temper!! Her oxygen was between high 40's and mid 50's.
When I got my update that night, she was on 58% O2 and Co2 was 66 which was within acceptable limits! AND, she was still tolerating her feeds!
28+1
Easter. The boys were spending Easter at their dads this year, so Paige and I went to the hospital and had ourselves a girly day. Paige was allowed to touch Jazz and was so impressed by just how soft her skin was, she couldnt bring herself to stop touching her! The boys were going to be very green!!!!
Jazz got her first barbie doll at Easter, I guess the Easter bunny wanted her to have a keepsake that would show her just how small she was......barbie was longer than her! lol
Her oxygen was around 52% and Paige actually watched the nurses replace her nasogastric tube!! I cant believe she watched it and didnt gag!! Jazzies feeds were increased to 5ml per hour.
Unfortunately I couldnt stay all day; too hard on Paigey. So after ages with Jazz, then expressing, Pip and I had lunch at Zoukis, needless to say, it was a very late lunch! and went home.
At my 9pm update Jazz was still desatting lots, o2 55-60% and she'd had a HUGE poo!! Glad I missed that one!
28+2
Having a much better day today with oxygen at 48% and no where near the amount of desats as usual!
I got another isolette hold today while Stacey changed her sheets, and it was just as incredible as the first! She doesnt desat when mummy and Daddy hold her!
The doctor listened to her heart today and couldnt hear a murmur! But he did say that doesnt always mean anything, but it sure sounded good to me!
Weighed again today and this time she'd lost weight, this was becoming a bit of a pattern.
at 9pm update she was much the same as she'd been for the day, o2 48%, desatting hadnt increased, and she'dhad another massive poo....bugger....there goes more weight! That last one shed had even reduced her girth by 1cm!!!
28+3
Having a much better day, no where near the amount of desats! Doctor Tan could hardly hear a murmur, but said hearing it is not a good indication of size, so its not necessarily indicative of a narrowing, but I think its gotta be a good sign! She would have bloods done today and another cerebral scan and echo had been ordered. Still tolerating the 5ml per hour feeds. Doc said she'll also be tested for infection, but he said she doesnt look like she has one. Bec made her a little nightie and thenurse said that at this afternoons cares they'd dress her in it!
9pm - doing great still, not desatting much and blood gas is at an all time low of 41!! Her bone bloods and echo would be done tomorrow. Feeds upped to 5ml and 6ml alternating
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