Wow, its hard to believe that just 10 weeks ago, I was told Jazz was going to die, and yet here she is, still kicking....literally!!! Its wierd to go through the whole NICU process, Im finding time to be a very strange concept at the moment, in some respects it seems to go slow, but in many more it seems to be flying! And every day, every gram, every feed, every breath and even every poo is a massive milestone!!
Its a strange ride that we're on.....
3 days post roids and shes still on between 26-28% oxygen, although Luan had her down to 23% overnight. Heart rate has been going a little high at times. That happened last time she finished the roids too.
When I looked through my journal- she was on 27% o2 when she had her final dose last time, next day was 37% o2, by day 3 post roids she was on 42%. This time she finished on 23%- next day 26-28% and day 3 post roids is basically the same, 26-28%.......much better than last time, trying not to get my hopes up, but its difficult not to!!!
Had a lovely cuddle today, shes so gorgeous!
She cracked the shits twice while I was there today, both times 'cos she lost her dummy! She was crying, kicking and throwing her arms around 'til she got her beloved dummy back!
Her girth reduced by 1cm from 27cm to 26cm, but its still soft.
7pm update- Claire said she was doing great still on 26% and sleeping soundly. They havent done a blood gas yet. Satting low 90's like she has most of the day!
34+1
Jazz got weighed this morning and had put on 79g!!! 1283g! Still doing extremely well, oxygen 26-28% and co2 is in the mid 50's.
Didnt have a cuddle today 'cosI didnt want to tire her out too much, I want her to keep doing well so she remains extubated.
Claire had her o2 down to 25, and so did sandy tonight!
She cracked it this afternoon, wouldnt settle rooting around and doing shark attaks on her dummy and just going insane! I was an hor late to express 'cos she wanted me to keep holding her dumy for her!
34+2
Oxygen still 26-28%, the doctors are impressed! I got a beautiful cuddle today....well, they are always beautiful cuddles!
She did the most massive, loose and extremely revolting poo!!!
Dr Alex is happy shes not rebounding too bad so far! Her haemoglobin is low, so they are keeping an eye on it.
5.15pm- Very well now, but earlier was having continuous desats to 55-60 and her o2 went up to 30%.
Her tape holding the O.J tube inhad slipped down and was over her mouth they said maaybe she's a mouth breather, they retaped it and she improved. Oxygen 26% and satting at 92
9pm- no change....she's just incredible!
34+3
9am- mums morning update- Claire has Jazz again today. Oxygen 26% and satting 93
co2 has come down!!! its now 52.8
When I arrived, Jazz was on 25% o2 and satting 93 then it went to 24% and satting 97-98!!! Then down to 23% and satting at 93, shes amazing!
She was weighed today and has put on 7g, shes now 1291g. Poor poppet was in a mood today- after her weigh, it took ages to settle, she kept taking her prongs out and funnily enough, when they were out she satted at 96 for quite a while!
But she kept desatting to 80 and had a couple down to 69, her o2 had to be put back to26%. Her ventilator was changed over today and she really loved having those annoying prongs out and having the neopuff instead (the neopuff uses a face mask rather than nasal prongs).
evening update- Cathy has her tonight- shes still on 26-27% and is behaving well!
Champion!!!!
34+4
Nanny visited todaay. Jazz was magnificent as always. 29% o2 when we arrived, but down to 26% by the time we left. The nurses had put her in a baby born gro suit!!
Got an amazing cuddle today. This time we had our first breast contact!!! Jazz had a little lick of milk.....and promptly went to sleep! lol
Poor little poppet, during that lick she copped a full letdown and nearly drowned!!! Its amazing to see just how tiny she is compared to my boob!!! My boobs arent huge but compared to Jazz I might as well be Dolly Parton!!!!
One of the younger doctors, Simon, told the new neonatologist in handover that Jazz was remarkable!! He's amazed and impressed that she came from HFO on 80% o2 down to air on CPAP in the beginning of the first course of steroids, then doing so well now after her second course.!!
I think shes remaarkable too!!! She is utterly incredible and we must just be so blessed to have her so healthy and strong!!!
Shes now on 9ml per hour continuous feeds, hopefully she's porked up more when she gets weighed tomorrow!!
Had to go back in tonight because I'd forgotten to take in some milk!!! Good excuse to see her again though anyway!
Claire has her til 9.30pm, and Amanda had her today.
Amanda is jazzies 'lucky' nurse!! Amanda was one of the "hundreds" of people that materialised in the delivery room when Jazz was born, it was Amandas first time going down to delivery to save a premmie! Poor thing, I'm glad her first 24 weeker ended on a good note!!!
Shes had a few desats and just cant stand being on her back!!!
34+5
Oxygen between 26-30%, co2 this morning was 53!!
he had Kim today. We did a weigh, Kim said to have a cuddle 'cos its no more tiring as she has to come out anyway for the weigh. Shes up 77g to 1368g!!
During my cuddle, Kim told me to squeeze some of my milk out to let her taste it, and she actually got onto the nipple and sucked like her life depended on it!!! She spent an hour licking and sucking and satted so well that when she started sucking, Kim put her on low flow!!! The whole time on low flow she satted between 97-100%!!! wow, she LOVES breast feeding!!!
It was just an awesome day. She was on low flow for almost an hour and coped amazingly!!
8.30pm update- Cathy has her tonight, she was amazed with how well she was doing!! She thought she'd be totally exhausted after her big day, but she's still 27-30% mostly sitting on 28% with only a couple of small desats! She reckons we can do it again tomorrow!
34+6
7.30am phone update- Kate has Jazz today, shes on 29-30% with occasional desats, but theyre not profound. B.P a little high, but the cuffs are not always accurate so she'll try again later. co2 is 51!! Shes doing brilliantly!
She was awesome today, well, when is she not awesome!!!! by the end of the day her o2 had reduced to 26%. She's now officially having 1 hr per day of breast contact on low flow!!!!
I bonded with her from the minute she was concieved, I've never felt that I hadnt bonded, actually for me it was the opposite, I've felt extremely bonded!!! So for me the breast contact wasnt about feeling bonded for the first time like it can for a lot of people, but breast contact with your baby, 75 days after she was born is the most special thing ever!! Now theres more I can do to pysically help my child, no longer just a bystander but now an active participant in her growth and development!!!!
She didnt suck a lot today, too sleepy, but she did have lots of lovely licks
Got bloody mastitis again, boo. Its excruciating, it took 45 mins with a hot compress to express a tiny bit of sticky, yellow-green revolting milk......
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