Day 106, 107 & 108 - One week adjusted!

Day 106 - Cuddle day

Yay, Jett and I finally had cuddles. We hadn't had a cuddle since Sunday :) It was so nice :).. Jett's oxygen has come down heaps and he was fluctuating between 23 and 30% which is great. Dr D thinks it could be the antibiotics helping.(I can't remember if I mentioned this but Jett was put on ampicillin and gentamicin for e coli.)

Jett also got weighed today. Normally weighs and cuddle are on alternate days but both hadn't been done for ages. He weighed in at 3870gms which is pretty good. He didn't lose weight which is great considering he was only on fluids from Saturday to wednesday! Jett's platelets were 201 and the rest of his blood results were pretty good.

No date for surgery as yet. Not even sure when the 3rd contrast will be

Day 107

I have hardly seen my baby today, there was a new admission so the room has been closed for most of the day. I have been there to do Jett's cares and give him a bath though.. The contrast stuff is coming out of all ends. He did a big spew last night and has mucousy stuff coming out of his bottom. I can't wait til after the surgery. When I saw the surgical reg last night I told her I wanted to have a meeting with the surgeons next week to discuss best and worst case, what they hope to achieve etc.. I think the main goal is to get Jett feeding, so hopefully they will go in and be able to form a stoma. They can get him feeding after that and worry about the rest later. I told Dr D that I am totally fine with going home with a stoma and an NG tube if necessary. I just want him home.. I'm scared of the upcoming surgery, but hoping that my strong brave little man will ok..

Day 108

This morning when I came in my baby was very unsettled so instead of having a cuddle in the arvo like I normally do I had one this morning to settle him. He loved his cuddle, I had him skin to skin and he was awake looking around. Then he did something that made my heart break... He attached to my chest and started sucking. Then when he realised no milk was coming out he kept moving his head and attaching to different parts of my chest :(.. He so wants to breast feed and I really want to feed him. I love that he has such a strong instinct to try and find the milk and latch on but it's so hard when he can't. I absolutely can't wait til this surgery is over and he can feed. The day we can breast feed will be the best. I had to end up giving him his dummy so he would stop looking for milk on my chest.

Our cuddle ended abruptly when I noticed blood all over my gown. Jett's central line had leaked. We put him to bed and the nurses took his dressing down. Luckily the line was still secure in his arm, but the catheter bit that leads to the IV pump had a hole in it. One of the consultants had to come and re thread it. So glad his central line was still ok. He only had it put in on Wednesday.

Even though we only had a short cuddle it was enough to settle Jett. We put him on his tummy and was fast asleep for 3hrs. His oxygen went down to 21% which is as low as it can go. 21% is the same as room air :)

Still no date for surgery, not even sure when the 3rd contrast study will be done. I do know that surgery will be fairly soon though. It's just a matter of getting the team together. I think they plan to have 2 surgeons like they did last time. I keep getting warned what a big operation it will be.. I know it will and I'm scared, but sometimes it's nice to be in a bit of denial and look past the surgery and see him recovered and feeding.. Hopefully that's what will happen. I have no idea what I will do the day of the surgery. I doubt I'll leave the hospital though. It'll be over at the kids. I hope they have good waiting rooms. Jett's first surgery was 3 hrs this one will probably be much longer. I just hope they can do something and he tolerates it well. I don't want anymore talks like last time. After his first op I got the "He may not survive the night" talk. He did though!! My little man is so brave and strong. He just has to be ok!

Jett's CO2 from his last gas was only 45 :) I am wondering if Dr D will bring his rate down on his vent. Maybe not, maybe she'll just wait til after surgery. Jett should be having an echo on Monday to check his duct. He was supposed to have it the other day but Dr D wants someone in particular to do it.

I think that's all that has been happening. Jett still looks very cute :)