Our new "normal"

Macsen is already 10 weeks old! And he is 9lbs12oz today. At his pediatrician appt yesterday his doctor said he was gaining weight like a "normal" baby. I know he's not normal but he seems so most days. That's a good thing. Good that the meds, the tracking and perpetual appts don't make us look at him any differently than we look at our girls. But when the home monitoring nurse tells me she has to change the time of our biweekly FaceTime appt because his CHOP cardiologist wants to talk to me. That's not normal so I know we are going to get some news. Maybe our next surgery date. I thought I was ready for it - it will help him and all the other heart families I talk to say life is so much easier after this interstage period is over. Macsen will be less tired and his heart won't have to work so hard after some of the blood it has to pump is diverted. He won't be as fragile so we can start venturing out more. The girls can go to school. BUT first we have to go through surgery again. Have to hand him off and watch him being wheeled away again to a place I can't help or comfort him. And when they bring him back only time will tell how he will do with the sedation, the heavy narcotic pain medications, the rewiring of his circulation, the fluid... I am afraid. Everyday I love him more and more and to see him hurting is unbearable. I know with his first surgery I found courage I never knew I had and I hope with prayers for strength I find that again. Right now though I am happy living in our little bubble trying not to think of the future and loving my smiley sweet little man.