Day 114 & 115 - 2 weeks old adjusted

Not much to report, Jett has been very settled. Ventilation still the same. Cuddle day was yesterday and I was upset my cuddle was cut short and he was put back to bed after only an hour. His TPN was going to run out which is normally not a problem, but it was line night so they didn't want to fill it, they wanted to change the whole line which is a sterile procedure. I think the nurse wanted to re tape his tube before she did his line, so that took extra time.. His tube gets loose so quickly, he only had it re taped that morning, he is just so strong whipping his head from side to side. He also slobbers a lot which doesn't help. He has grazes on the left side where the tape ripped the skin. Bactroban is being applied with his cares. It's such a shame he has to have it re taped so frequently.. Better than self extubating though..

The nurse last night said because he wasn't out long I may get a cuddle today, but when I asked this morning I was given the choice of today or tomorrow. I chose tomorrow as he is having bloods etc done in the morning so I think it will be nice for him to have a cuddle after all that. I am planning a long cuddle in the evening, there is nothing to stop us and it's not line night. Just have to pray that if the room gets an admission its through the day..

Today was wash and weigh day. He also had his vitamin K injection today.. The nurse was going to give him a big bath but was advised against it. They didn't want to risk his central line getting wet so he had sponge bath. It'll be a long time before he has a big bath again. Jett was weighed I can't remember exactly what his weight was 3984gms maybe?.. I forgot to write it down. I'll check when I go back tonight..

As today closes in we are another day closer to surgery. I'm a wreck.. For 10wks I have been waiting for this.. Now it's here I'm terrified. My milk supply is suffering big time, I am producing not much more than 200mls a day.. I am sick of pumping.. I still pump 9 times in a 24hr period. I just hope that once Jett has recovered from surgery and we are looking towards a future at home my milk will come back. I can't have gone through all this pain and agony of pumping for nothing.. I have to have a bit of faith, it's just hard when my body is failing me. (Again).

I'm sick of the uncertainty I face every day. Who is looking after Jett today? Has she looked after him before? Does she know he needs suctioning frequently, does she know how involved I am? Will she just let me do my thing or will she hover over me? Will she have him for 8 or 12hrs? Will he be allowed a big bath? Will he be allowed a cuddle? When will she be happy for these things to happen? It all depends on the nurse. I'm tired. I'm over it. I want Jett home.

ETA: After I wrote this post I went back to see Jett and find out who has Jett overnight. I was happy to see the nurse who had him. She is a beautiful compassionate nurse and I feel confident that if I'm not there overnight and Jett is upset she would take the time to sit and comfort him.. Anyway, I got there and said hello to my baby and she came up to me and whispered "Do you want a cuddle?" Of course I did but first clarified that if I cuddle tonight I still get my cuddle tomorrow night and she said yes of course... So I expressed and we got my precious boy out. I had him skin to skin for 2 and a half hours. After that I had to leave so another family could spend precious time with their very sick baby.. She wont be Earthside much longer :(

That nurse really made my night.. She is an amazing woman who has had her own challenges and has just found out she is pregnant. I am so happy for her, she will make an awesome Mummy..

During the lead up to this surgery, my mind is going 100 miles an hour. Normally I am asleep within 15mins of getting Jett but tonight my mind wouldn't stop. I felt his soft skin and smelt his baby smell. I told him how thankful I am he is here with me. I told him he can't give up, he has to be strong.. I told him all about the life we were going to have outside hospital.. He was wide awake listening to every word.. Then I read him a story and sang to him. He fell asleep soon after.. I love it when he is asleep on my chest. That is where he belongs..

Now I am desperately trying to wind down..I can't stop thinking about the week ahead..