Just a quick update, it's late and I'm exhausted.
Evan is doing so good, praise the Lord! He was taken off of the paralytic yesterday morning so he is more alert. He cracked his eyes open a couple times for us too. He is still on the prostaglandin (keeps his duct open to pump blood to the rest of the body), fentanyl (for pain), lasix (for liquid retention), lipids and a liquid diet stuff (for nutrition), milrinone (to help the heart function better), and his breathing machine. As hard as it is to see our little baby with a tube down his mouth, it's reassuring that he is doing so much better and not working as hard to keep functioning. Evan had several visitors yesterday. He finally got to meet his big sister! A counselor talked to Elli before she went back in the room and took pictures of what machines Evan is on and explained what they all did. She gave Elli crayons and a journal to draw pictures for Evan too. Elli drew a beach with sand and a boat and rainbow for him and it's in his little bed :) She only stayed in the room for a few minutes, she was a little scared, but she is already in love with him and can't wait to "hug him tight" when he gets home. My sister and parents also came by to see Evan as well as Scott's parents. I think it's hard for other people to see him the way he is right now.. Hopefully it's reassuring to them to see Scott and I so positive about his condition right now. We stayed with him until we met the night nurse yesterday then came back to our room to get much needed rest. We call the nurse to check in everytime I have to wake up and pump and he had a really good night last night too. This morning we went over early to see him and he was still doing great! The Drs came around and decided it would be best to give him some blood today. The DR said it would really help with all of the liquid he is retaining. It's so good to see Evan responding to us too, although it's SO SAD to see him make a crying face and not hear him actually cry. We left around 1030 to come home and spend the day with Elli. It was awful being at home for the first time without Evan. It took everything in me to get it together before Elli came home. She was so excited to get to spend time with us. It's very difficult to leave my sick baby to spend time with my other baby.. She knows her brother's sick but I don't think she likes me not being home. She did say Mama was taking very good care of her though. We watched Santa Paws together and played "Chefs" while we baked cupcakes. The nurse called us around 4 to let us know Evan was moved to another room. He was at the very end of the unit and now he's in a more central area. The nurse also said Evan did really good with the blood too. We came back too All Childrens about 830 and visited with the little guy. He still looked really good and was sleeping for a little bit. He woke up quite a bit before we left and responded so much to us! He has a great grip and his left hand doesn't have any Ivs in it so we hold his hand as much as we can. We've also developed a little game, not sure if he likes it too much though.. lol He sticks his little tounge out and as soon as you touch it he pops it right back in. Lol it's soooo cute and I got a video of it, I'll have to figure out how to post it. Tomorrow morning the surgeons get together and decide what surgeries need to be done, so Evan will hopefully be confirmed for Tuesday morning. Dr Chai (the surgeon) should be coming by to talk to us again about the procedure. We are going to hold Evan tomorrow too as long as that's still ok with the DR. We were given the go ahead on Friday but after everything that happened Thursday we wanted to just let him relax.
Today was a very rough day for me emotionally. I'm still trying to recover from having a baby 4 days ago while dealing with the stress of Evan's condition and Elli's life being disrupted. Going home not pregnant and with no baby is something I wasn't prepared to deal with. I still feel completely overwhelmed and sometimes I feel like I can't handle it all. It's a miserable feeling to have no control over your life and watch your new baby struggle the way Evan is. As a mom you naturally want to protect your child and not being able to help Evan breaks my heart. I don't think I will ever get over not being the first person to hold this child I carried for 9 months..
I will do my best to update tomorrow aftter we talk to the surgeon. Keep praying for our little warrior, his fight is just beginning.