Somewhere along the line I have recorded his weight wrong. His last weight was actually 3288gms. Today he got weighed and he was 3398gms :) I do think he is a bit more edematis since he has been having oral lasix, but he still looks good and his nappies are still very wet, so at least we know some of it is getting absorbed somewhere :)
He is doing the same ventilation wise, his rate and pressures remain the same and his oxygen averages 34%. I think I mentioned in the last post, but his morph and medaz have been gradually weaned so are now at 3mcgs. His drain has been draining, but it was oozing onto his skin. The surgeons thiought the tube was blocked so we cut the drain short to only a few cms long and put a colostomy bag around it, so the drain just drains into that. It's much better. The bag is tucked into his nappy and clothes, so now when you move him he doesn't have a long tube hanging out of his clothes. He looks neat and tidy :) The only lines he has now is his central line and ventilator, he's much easier to transfer now, they just quickly disconnect the ventilator while moving him. I love seeing him breath on his own! He copes well for short amounts of time :)
Sometimes he gets really unsettled, it's hard to tell if he's hungry, in pain, or just having a whinge because he's older and he's a bit bored. I HATE that when he cries I can't just pick him up.. Instead I lay my head as close to him as I can and hold his hand while singing to him. I hope my closeness makes him feel more secure, kind of like a cuddle but not quite. He seems to settle when I do this. I also sometimes put some EBM on his dummy, but I don't want to make his hunger worse if that's the problem. Last night I had a cuddle and he was a bit unsettled during it, but it was late at night and that's often his awake time anyway. He sleeps and wakes throughout the day, but I have noticed at night he's always awake from 9.30 til about 11pm. He was still awake when I left last night, it was the night the nurses replace all the IV and central lines so because it's sterile I have to leave. They left me there until 12.45am though, so that was ok. I just hate leaving him awake. I don't want him to think he has to self settle. I like to be there so he feels secure while going to sleep. I know that when he has his 4am cares he has to settle himself to sleep, I hate that thought, but selfishly I am too tired to get up go at that time of the morning although I normally wake to express around then. I wish I could just sleep there right next to him..
I bought his xmas present today. A cot mobile. At least it's something he can use. It will brighten up his cot anyway. I can't wait to unwrap it with him. My first xmas with a living baby. Wow, so special. We are having a cuddle that day :) I can't wait! I know that it's not ideal, but this is our first xmas together. I hope it's our first of many.
MUMMYI am ok. I swing between sad and happy. A couple of days ago I felt sorry for myself and Jett and thought how unfair the world is, but today I feel good. I am so glad Jett is still here with me :) Christmas will be special this year. I just hope next Christmas is better cos we will be at home :)
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