Day 80, 81 & 82

JETT

Saturday, Day 80

Tonight my baby and I had a looong cuddle :) I had my baby in my arms from 5pm to 9pm and it was bliss. Jett has been fairly settled ventilation wise, still needing frequent suctions though. The secretions aren't really blood stained anymore so that's good. No changes to any meds today, IV is still in with caffeine and frusemide going through it.

Sunday, Day 81

A big day for my darling :) My lil fatty had his wash and weigh today! 3114gms :) He had a nice bath and most of his cradle cap has finally gone. I have been using coconut oil the physio gave us then giving him a good exfoliation :) My brave boy had his tube re taped today and his NG tube changed. It took many goes and 3 nurses to get his NG tube in for some reason. His little nostril ended up bleeding, it was awful. That's why I want to be there when they do things like this. Although most of the time it is straight forward there can be that 1 time where it is difficult, therefore being traumatic for Jett. I was glad I was there to give him EBM on his dummy and hold his little hand.

I have noticed the older and more alert Jett is, the more he cues he's hungry. I hate that he can't eat. I try to put EBM on his dummy and he loves it :) I am also trying to make sure he doesn't need the dummy to settle, trying other techniques like singing to him, patting his bum etc.. It works most of the time. He loves it when I sing to him. He likes his head stroked too sometimes. He likes to be swaddled tight. I find if his arms are flapping about he hits himself with his cannula. Before I leave at night I turn him on his side, snuggle him up tight and pat his bum. I always wait until he's sound asleep before I leave. I still haven't got used to leaving him. I still find it so hard. I just wish we were at home :(

Monday, Day 82

Today Jett had a cap gas and full bloods done. His CO2 is lower, it was only 71 which is good for him. His HB was also low unfortunately, 75, so he has blood running now. Luckily that IV was still in. :)

Jett also has some sediment in his wee. He had a sample taken, so they will send it off. I am hoping it's not faeces, but it's possible that some sort of fistula has formed in there. Anyway, they will test it and if they think it is, they'll let the surgeons know. It probably wont change anything, they'll just keep an eye out for infection. The other possibility is a urinary tract infection. I hope it's not that, but at least if it is, it's easy to treat.

Jett also had an echo today. His heart is still enlarged and the duct in his heart is still moderate, measuring at 2mm. They were hoping it was smaller or had closed but, no, it's still there. Not sure what plan of action will be taken for that, if any, at this stage. I haven't seen Dr D since he had the echo..

ETA: Jett just had his eye test. I wanted the consultant to do it, but he wasn't there so I let the registrar do it. She said this time stage 2 zone 3. I don't want her to do it anymore. Last time she said stage 2 and when the consultant looked he said it was stage 1. Not that I don't believe her, but.... I will be having a loong chat again with Dr D about it again. he's almost term now, so I don't think it's necessary if there hasn't been major changes. 6 monthly tests, even monthly, but not weekly.. I hate it so much, Jett coped really well though, no brady's this time :).. He also had his HC measured, it's now 34cms :) The average size of a full term bubba :) He's got lots of brain in there :) He's so clever!!

I am getting a cuddle tonight :) I can't wait

I think we are all caught up, Jett is such a busy bubba :)