Day 109 & 110

Day 109

Jett and I had an awful night last night. Jett cried for 3hrs straight, from 11pm til 2am. It was really heartbreaking not being able to pick him up and comfort him. :( All I could do was rock his cot, sing to him and hold his hand or put my hands on his body. It didn't help that the nurse was a bit patronising, she kept telling me to go home and get some rest. Yeah, like I'm going to go sleep while my son is in distress.. There is no way while I am alive Jett will knowingly be left to cry all alone. She certainly didn't offer to sit with him, Which is fine, he was in such a state I wouldn't have left anyway, but with some nurses you just know that they will sit with your babe to comfort them if you're not there. I definitely didn't trust her to do that. So for 3hrs I tried to do my best to settle him. Nothing worked. I asked the nurse to reposition him and that worked for all of 2 seconds. I tried everything, rocking, singing, talking, I took my hands off him in case he didn't want to be touched and still nothing. The nurse suctioned him, checked his IV sites I made sure he wasn't laying on anything and I still couldn't find anything that would have made him uncomfortable. He just kept crying. I wanted to hold him so much. Eventually he took the dummy, (he didn't even want that for ages) and I held it there until he was fast asleep. A couple of times I thought he'd calmed down but it never lasted long. It was so distressing and really distressing not being able to do anything. One of the other nurses came down to the room and asked why I was there so late and when I said Jett wouldn't settle she asked his nurse if I could pick him up but the nurse said no because of what happened with his central line :(. I hate this, I hate that my son was so upset and I couldn't comfort him :(.. I hate that I felt pressured to get him to sleep so I could go. FUCK being in hospital with people watching me with my son. I just want to be at home with my baby with him in my arms. The way it should be!

Today was a much better day. Little Jett wore himself out last night and slept all morning lol. I did too. I just put my neck pillow on his cot and rest my head down. It's not the most comfortable, sitting in a chair with my head on his bed, but it works. His oxygen had come up to about 30% during the day, but when he settled it came back down to 21% again :)After quiet time he had his wash and weigh, he weighed 3858gms so he had lost a bit of weight. He was really settled tonight which was good, so I managed to get home and get some sleep.

Day 110 - Cuddles :)

Today was another good day for Jett. He was settled all day sitting on only 21% oxygen with sats of 100 :)

I had a chat with the surgeon today, Dr R. She is the one who did his op last time and will be doing it again. Jett wont be having the 3rd contrast, she is pretty happy there isn't a fistula between his bladder and bowel which is great news..

I signed the consent form for surgery which is booked for next week. We spoke about the risks and what she is hoping to do. It's really complicated. She said the contrast showed a blockage high up from the stomach. She said if she makes a stoma that high he wont have enough bowel to absorb nutrients, basically the food will go in his stomach and pour straight out. So what they want to do is kind of form 2 stomas. This is really hard to explain as I don't fully understand it myself, but I'll do my best to explain what I understand of it.. Basically he'll eat, it'll go into his stomach and come out of the stoma formed. Gastric juices and partly digested food will then go back into the bowel through another stoma and then the nutrients can be absorbed..(It's called re feeding) They will then wait til he's bigger and stronger and hopefully go back in and reverse the 2 stomas and connect his bowel.. Hopefully.. All this depends on if she can even get in to do that. Dr R said she is very concerned about what could happen while she is trying to untangle his bowel. She said the risks are: Bleeding out, damage to liver and holes in the bowel. She said they may not be able to do anything because getting through all the scarring and adhesions is going to be a huge job and it's risky. I am scared, but I know she had to give it to me straight. Jett may not come out of this. The worst case scenario is that he dies on the table. They will have blood ready to transfuse, but she said with little babies and such a big operation, the risk of bleeding out is very real. That is my worst fucking nightmare. He can't die on the table..

So as you can imagine I was a mess this morning. We have been waiting nearly 10wks for this surgery and now it's here I'm scared. I know it will go one way or the other. I need a fucking miracle. I need to bring this baby home.

Today wasn't all bad news though. Jett had an echo and the duct in his heart has closed.. All by itself! He didn't even have medication! I'm hoping that this is a sign of things to come.. :)

Jett and I had snuggles this afternoon. He's so big now I can't believe it. I just sit and stare at him, kiss him and I am savouring each second with him. I love him so much. He was so settled during our cuddle. Still only on 21% oxygen and sats of 100 :)..

As far as surgery goes, he is in the best health he can be for it. His ventilation is remaining very stable and there aren't really any other concerns.. The registrar is going to speak to Dr D about giving him vit K on Saturday rather than the Thursday it would be due. That would give his blood the best clotting result when he has his coagulation factors tested before his operation.

Jett had his head circumference done today, it is 37cm.. He has the most kissable head :) He is back in his cot now, not the open care system :) When I got in this morning he was crying, cried all through his nappy change then we sat him up. He was so happy. He has gorgeous inquisitive eyes that check everything out. I'm so blessed to have Jett. I had a nurse last night tell me that Jett has definitely become part of many peoples hearts. She was saying that he is very loved by many of the nurses there and they are all cheering him on :) Jett has touched the lives of so many, people that know him, or people that know about him. He just has to get through this operation. I have to believe in miracles :. He is such an amazing little boy, it is a privilege to be his Mama..