Day 86 - Cuddles :)

JETT

Today I had a nice long chat with Dr D. She said the contrast study will be done in about 2wks and it might be done over a few days. They will put contrast first in Jett's NG tube, then depending where it goes, they will then decide whether they put contrast in his drain, up his bottom, or both.. Then comes surgery a week or so later.. This means that surgery is probably about 4wks away. I asked her if she thinks it will drag out til Feb and she said No, Jett is probably as stable as he will get. It's really really fucking scary. I asked her if she thought the actual surgery was risky or if the biggest risk was that they wouldn't be able to fix his bowel, and she said she feels he is strong enough for the surgery, he has already proven he's a fighter, but fixing his bowel is another matter. They have to cut through all the adhesions that formed first of all, then from there see how much bowel is viable. It will be a massive surgery. What we are hoping is that will be able to form a stoma, start him on feeds then have the stoma reversed.. I am hoping he has enough bowel to live.. If he doesn't then it will be decision time.. I don't want to have to do that again.

Ventilation wise, things are the same. He has been taking a bit to recover after suctions today, but he recovers eventually. We had a cuddle from 5pm til just after 8pm. He was so snuggy and comfy :) Mummy had a nap too, it was so nice.

Jett seems to be doing well on the oral frusemide, his nappies are still really full and he has a bit of fluid but not too much. They are using 3kgs as his working weight. His Morph and Medaz got weaned again by 1 today, so now he's only on 2mcgs/kg/hr.

As his surgery draws nearer I am getting very scared. I am aware that the next 4wks or so is very very precious. I can't lose my Son, I just can't, not after the twins, not after coming so far with him, but if I do I know I have been the best Mummy I can be. He has brought so much joy to my life, I feel like my heart is going to burst with love every time I look at him. I am just hoping for a miracle, because I honestly think if he has enough viable gut to survive, and this surgery is a success the rest will be a breeze and we will be home in no time.. He is a miracle already. Christmas will be bittersweet for me this year, having Jett here, but in hospital and of course always missing my twins, but I'm really looking forward to Jett's first Christmas, and I hope it's the first of many we spend together :)

I need Jett, I have no idea how I would be able to function in normal daily life if I lose my 3rd Son. He is my last chance at being a Mother to a living baby. He simply HAS to be ok. Surely my motherhood journey will extend to further than the NICU? He's gotta come home, There's just no other option :)