Day 90 & 91

JETT

Day 90 - Cuddle day :)

Jett had his blood gas today, they are only done twice weekly now, his CO2 was 89 so his ventilation rate was increased to 40. His platelets were 71, so have dropped again :(.. He had a liver ultrasound, they are checking to make sure his liver isn't enlarged and that the bile ducts are working correctly and aren't blocked. Apart form that it was a fairly uneventful day, still has thick lung secretions and brady's if he's not suctioned regularly. The secretions are only stained with old blood, it's not fresh blood which is good.

When I spoke to the nurse about organising my cuddle time she said it was handed over that I had been having too many cuddles. I was really upset and confused by this as Jett is stable and his Dr said she was happy for me to have regular cuddles. Anyway, upon further investigation, she said it was because I had been having cuddles every day, which i haven't. It was clarified that I was only having 2nd daily cuddles which is what I am allowed to have, so I got my cuddle after his afternoon cares. It was soo nice, I didn't cradle hold him, I had him upright on my chest and he slept beautifully (so did I) for over 3hrs :)

I was really upset when the nurse thought at first I couldn't have a cuddle. It is so fucked that I have been a Mum for 90 days and have never been alone with my son. It sux that I have to 'arrange' to hold him. It sux that I am trying to get as many cuddles as I can get because I am so scared that this is the extent of my motherhood. I am so scared of him having surgery. I am scared I'm going to lose my baby and not know what it's like to be a mother outside of the hospital.

This really sux that we are still here in hospital. I'm so over not being able to mother my son the way I want. :( I just want to get my baby home.

Day 91 - Wash and weigh day

Today jett was weighed and he weighs 3852gms! Dr D thinks he has a little bit more fluid since going on to the oral lasix, so she has put his dose up to 4 times a day instead of twice. The lung secretions are ok now, still thick with the occasional blood staining, so Dr D still wants to do coagulation tests. This involves an arterial stab :( She is going to do it tomorrow when his blood gas is due. My poor little baby :( So fucking unfair.

The surgeons were talking about putting Jett on profylactic antibiotics because the sediment in his wee could be faeces , so he is at risk of a kidney infection apparently. They think it could be caused by a fistula. Trust my boy to be weeing poo! Not nice at all.. I am dreading this surgery, I am so terrified of what they will find in his tummy. I am scared they wont be able to fix him. I'm so scared he's going to die. The thought that this could be it sickens me. Every day I am with him, I am trying to make the most of each day so I have no regrets. I hate thinking about it, but both the Dr and the surgeon have confirmed that it is a very real possibility nothing can be done for him. I haven't lost hope though, I still express and I still talk about getting him home, I have to try to be positive. I can't give up on him. I have to believe that this isn't how our story ends.. I am just hoping for a miracle.