32 weeks, amazing to think how far jazz has come in such a short time!! To me she really and truly is an honest to goodness miracle.
Today was a short visit as Storm had a scholarship exam to sit before we visited.
After the exam, Storm and I; and Granny and another big brother, Zak, visited.
Jazz was wearing her first premmie gro suit!! Granny was completely blown away by Jazzies size, but thought she was gorgeous.
Storm got his first real touch, he was instantly in love.
Unfortunately we couldnt hang about because Storm could only take so much!!
She started to become tachycardic at times (high heart rate) and her oxygen had gone up to 32%
32+ 1
It was Mothers day today, and while I loved spending it with Jazz, it was hard to be away from my other beautiful babies!! But they were going to be going out for lunch with their cousins and having a great day despite me not being there. When I arrived, I found that the nurses had made me a beautiful card with Jazzies hand and foot prints on it, just gorgeous and they'd taken a special photo of Jazz and printed it with mothers day 2009 on it.
I also got to have a beautiful Mothers day Kangaroo cuddle.
Jazzies oxygen has increased again to 42%....Im not happy 'bout that!!
She got weighed today, and had put on 52g bringing her up to 1078g!
She spent hours farting like a little champion! And when it was all finished, she had lost 2cm in girth!! Thats a brilliant effort I think!! Its usually poo's that reduce her girth!
10.45pm update, Jazzies oxygen had come down to 39%, and her sats were up and down, and she was still a bit tachycardic
32+2
Still great, but having a few desats, less tachycardic though, oxygen 40%
She was saluting a lot ( it looks like the nazi salute, and they do it when something is stressing them) and I couldnt figure out what her problem was for ages. It turned out to be the open blinds, as soon as I closed them her sats came back up and her arm went down.
Had an appointment with the OT, it went well, shes going to make up a developmental care plan for Jasmine.
32+3
I got to have another big cuddle today, I live for cuddles with Jazz at the moment!!! Its wonderful!
Oxygen at 42%, Im getting concerned that it keeps going up. She had her weigh today and is now 1148g!
She had her eye test today. I had been dreading the eye test because its a bit nasty. They have drops put in their eyes to dilate the pupils, then a clamp is put on the eyelids to keep them open. The opthalmologist then uses the rounded end of a paper clip to gently move the eye around while he looks in it to assess whether or not there is any retinopathy of prematurity. ROP is very common and is where the retinas detatch, often due to oxygen being too high or too low etc. Given that Jazzies oxygen had beeen so up and down I was really worried that she'd have it . This eye test was usually very distressing for the bubs, understandably, so I wanted to be there for her. They give sucrose to the bubs before they do many procedures, once they reach a certain age. So Jazz had sucrose for the first time.....she was in heaven!! lol They put it on her CPAP dummy, which is tiny, but so immense compared to her that it has to be held in her mouth for her to suck it!
She had been desatting a fair bit that day, and despite how nasty that eye test was, the sucrose just sent her into a blissful state of being, she mustve had some sort of sweet filled out of body experience, tripping off to lolly land, because she was relaxed and saturated beautifully the whole time!! It was like anything could be done and she just wouldnt care because she had sweeeet, sweeeet sucrose!!! So it seems I had been worried about nothing when it came to her ability to cope with such a nasty test, and to top it off, her eyes were perfect so far!!!
When I got my evening update, her CRP and white blood count were slighlty elevated.....
32+4
Rang this morning at 4.30 while I was up for expressing, I was a bit concerned about the elevated infection markers.
She was in 50% oxygen, co271 and Natalie thinks she seems a bit off. Her haemoglobin is getting low, so she may need either a blood transfusion, antibiotics, or both. And if she continues struggling she may have to go back onto the IMV setting.
By the time I got there, she had been put back onto the IMV setting and was in 47%, maybe doing all the breaths on her own was a bit too tiring. Thankfully her crp and white cell count are back to normal. Her haemoglobin was still a bit low so shes having her blood transfusion, they thunk that should help reduce her o2 a bit too.
Dr Alex said she's rebounding since the steroids stopped and if she keeps declining she'll need a second course to keep her from being reintubated.
9.50pm
Been good since her transfusion- 50% oxygen.
32+5
According to the nurses, Jazz is doing ok, but not as good as theyd like. Shes on 8ml per hour feeds and tolerating it, and has put on 62g bringing her up to 1.210g!!!
Her oxygen and co2 is still rising. They will do everything they can to avoid it, but she may end up reintubated.
I got a 30min Kangaroo cuddle, not long enough, but magnificent nonetheless!!
When I left that afternoon, she was on 59%o2 and co2 was in the 60's
Rang at around 7.30pm
Nancy had Jazzies o2 down to 40% while she was prone, but it was now back up to 55%, co2 still in the 60's.
Theyve tried putting a different feeding tube in, its an oral jeujeunal tube, the end of the tube, rather than going into her stomach, goes straight into the first part of her intestines. They are wondering about two possibilities - a) her tummy gets too full, putting pressure on her lungs making it difficult to breathe, or b) she has severe reflux.
We'll get an indication if this helps from by midnight.
Midnight- 60% oxygen, co2 mid 50's, starting steroids again.
32+6
Jazz is much better today. Oxygen down to 50% and got to 49% when I left.
Her new feeding tube seems to be working, she gets fed continuously now, small amounts straight into the intestine. Having lots of big poos!!!
She had her music therapy assessment today and coped really well, so now she can begin music therapy. She'll be listening to music for dreaming to help her settle and relax.
I got a short cuddle today and for the first time she was fussing and showing signs that the smell of my milk was driving her wild!! We gave her her cpap dummy and she really enjoyed sucking it. She also started the rooting reflex!! Hopefully this means she'll do well when it comes time for breast contact!
6.27pm- o2 49%, co2 50. Tolerating feeds, respiratory rate drops low.
11.52pm- o2 45%. tolerating feeds.
It had been another huge week!! Hopefully the next week would be better!!
No comments:
Post a Comment