Update

Jasiu is doing pretty well ! Thank God ! He is still recovering and so far no setbacks, except our little JJ still is depending on more oxygen than they would like so they are slowly weaning him off of it and slower rate so that he gets used to breathe on his own. The plan is to extubate tomorrow or Wednesday. He just wasn't ready yet today.  But we ARE progressing.

On Sunday he was off of Epinephrine, a drug that went directly to his heart to help him keep up the heart  rate and a few other things. He tolerated this well and his heart is doing well. Also the JP drain line went out, it drained some of the fluid from around the heart.  Still getting the lasix, Tylenol and fentanyl and versed and a few other meds. On Saturday they started to give him breastmilk, only 3ml/hour, and see if he's absorbing it and tolerating it. Unfortunately it was ok at first but then they had too much residual so the doctors discontinued it and allow him to focus on the breathing and then work on the feedings. Baby steps. I'm ok with that. I personally like to take things one step at a time, so I'm confident that Jasiu does too.

Today they took out the Foley  catheter and Jasiu can pee into a diaper like any other baby. He has mastered the poopsters quite well. I even got to assist with the diaper change a few times yesterday.  Than they bothered him some more and took out another line that went straight into his heart and was used to administer different medicines. it had 3 outputs so before that they had to transfer the 3 lines to one of the IV lines in his leg.  This is where I go on a rant... We had a "student nurse" today that is being supervised by our registered nurse. I saw that she's not as experiences, how can she be, she's a student. but she was changing  the lines. This is a sterile procedure, we all wear masks in the room  (even little JJ) and it took quite a while to do, when I saw this being done a lot quicker. Nothing was done wrong and it wasn't hurting him as it does not require poking, but I was still a little uncomfortable.  Since nothing was done wrong, I decided not to say anything, but as advice I got from other heart moms as soon as I feel something is wrong I will speak up.
Jasiu was also aggravated today when they tried to put another IV in and poked both of his feet once and without luck, than the assistant manager nurse came in and tried in his hands and was lucky enough to get it done on the first try. But now our little boy has no free hands to be able to hold our finger since he has an IV in each one.  I LOVED WHEN HE HELD MY FINGER, AND SO DID JOE.  Hopefully he will be able to get rid of more lines/meds over then next week and he will once more have a free hand to hold.

Other than that, today is the first day Joe went back to work and since I like to keep the noise level down in his room we have been doing a lot of texting. I think we will run out of text messages within the week if we keep texting back and forth. He will take the evening shift at the hospital while I spend some time with Emily in the evening.  Hopefully we are here for a short while and once we get used to this routine it will be time to go home :)   I can't wait.