Today was a good day for Bela girl. Her doctors and surgeons are meeting tomorrow morning to discuss her situation and the exact plan for her surgery. They will most likely do the surgery on Friday. It will be the next huge hurdle for her to get past. She has been doing so well latley, but she is just being kept stable. Her real work will start once they operate on her little heart and her body must go through the hard work of recovering from bypass surgery at 1 week old. We are meeting with the genetisist tomorrow to discuss the success rate for these babies using the little data that is out there. We're a little nervous to hear what she will say to us, but have to keep positive even if the data isn't. One great news of today is that they are going to start giving her my breast milk!! THey are putting an NG tube down her nose to her tummy right now. I'm so excited to feel like I am doing something for her. It's been difficult for me to feel like I'm not doing anything for her that I would normally be able to do for my baby, so I am really happy about that.. They aren't sure if she will accept the milk though so we'll have to wait and see how it goes. We are praying that she will..
Benson stayed with us all day today at the hospital and did really well. It was so good to be with both my babies today at the same time. Tanner is with Bela tonight, and I got to come home tonight to put Bens to bed and it was soo nice to do his normal bedtime routine with him. He has been an angel through all of this. We left Bela's room to take a little walk outside today and before we left he stopped at the door and said, "We'll be right back Bela."
I feel very hopeful at times and then something will happen that brings me back down to the reality of the situation. It's constantly up and down. It's so hard to see her going through so much. I just pray my heart out that she gets strong enough over the next couple of days to be ready to take on surgery...that is all I can do.
I almost forgot...the best moment of our time with her so far was last night. Tanner and I both got to hold our sweet girl for the first time. It took three nurses to move her and all her tubes and cords, but we got to hold her each for a little while. We sang to her and she tried so hard to open her eyes and look at us. We knew she was trying to tell us she knew we were there. She is pretty sedated right now, so it's hard for her to get her eyes open, but she kept on trying and trying. It was the most response we have gotten from her yet. It was a very sweet experience for us, and one we hope to have again before Friday.
Thanks for all your comments..it means so much to us to know that there are so many people thinking and praying for her, and it really helps to get through this. I'll update again soon..