Life as a Heart Mom

Life as a Heart Mom. Wow, every second I'm thinking- is he okay? How's he doing? Is that okay? Is that normal? Should I do this? How long do we have? Daniel has already proven everyone wrong, again we were told he had 30 minutes with us. He is now 12 days old, my miracle boy has been here for 12 days. 30 MINUTES! I pray and hope and wish and pray and pray and pray and pray some more that he has a lot more time with us. We are taking Dan back to PCMC tomorrow for another echocardiogram, and then we are going to talk to a surgeon just to get another opinion- from the surgeons point of view. They are not very hopeful for Dan, I have talked to one cardiologist and the fetal heart coordinator and they both tell me they don't feel like they will find anything different. I do believe in miracles, and I know that anything is possible. If they tell me what I don't want to hear, I will come to accept it (painfully) but I want to take him back in and hear it again and be able to say that we did EVERYTHING we could do for him. I want second and third opinions. So, Dan's main reason why they are telling us he can't have surgery is because of his TAPVR (total anomolous pulmonary venous return) his is called "obstructed TAPVR" which is worse than TAPVR. I have found a few blogs, websites, medical journals that had talked about obstructed TAPVR and they seemed hopeful, and they had surgeries that were sucessful. There were complications, and several medications and follow up precautions and etc but they still did surgery. It is so hard to accept. I didnt expect Dan to come home with us after what the doctors told us, to have him still with us is amazing! I am so grateful to my Heavenly Father for letting him be here with us. It has been amazing to change his diapers (and even get peed on) I have fed him, changed him, loved him, kissed him, bathed him- tomorrow I get to leave the house with  a diaper bag and take my baby somewhere! I will look like a normal mom with a normal baby in a normal carseat with the cute peanut posh cover on it. :) I cant even tell you all how grateful I am for your prayers, and oh my gosh they are working. I KNOW they are working. I have people that I went to high school with- that I havent talked to in 7 years, that are facebooking me and telling me they are thinking about me and my family- and praying for us. It brings tears to my eyes, and it means so much to me to know how much all of you care. I can NEVER say I'm not loved. I have felt so much love. We have friends bringing meals, Grandma & Grandpa Jones, and Grandma & Grandpa Wynn have helped us SOOOOOOO much. We always have someone here with us as back up- they would do anything for us. It is such a blessing to have such a great family. I don't know what I would do without them. I love my husband Tyler with all of my heart, he is such a great Daddy, he has so much fun with his little Dan. They are so cute together. Please continue to pray and hope and wish for our miracle baby. He makes my heart melt when he looks into my eyes. Love you all!