Mixed Feelings

The day finally arrived that we were going to find out how much progress we have made. I'll admit I had feelings of excitement and terror. I knew what all it was going to require but it still scared me. We finally made it through traffic and got to the hospital. She was agitated because she could not eat but she was excited to see us. She was smiling at Cullie. Seeing her smile for the first time was something I can't describe. She again showed me that she was going to be ok.

Her procedure lasted longer than last time. The entire time she was down there I felt sick. I knew she was going to be fine but it's not something you ever get used to. She finally made it out and the surgeon was on his way up to talk with us.

When he walked in, I could immediately tell it was not what he hoped. He told us she didn't make much progress. We were still a long way away and we needed to discuss options. I could have thrown up. I kept telling myself how could we keep up this pace anymore. He told us the part of her esophagus connected to her stomach was not going to be salvageable. This basically meant the magnet study was out. He later told us he recommended esophageal replacement surgery. He would use a part of her stomach to make the repair. This was kind of a worst case scenario for us. It is going to be a major surgery and will require her to have more small feedings later on. He said he wanted to do the procedure with another surgeon and on a day when they both were rested.

I will say that hearing that news killed us, but hearing it from him made it better. I hope one day he realizes how thankful we are he is Levins' surgeon. I know God will guide his hands during her surgery. He is a man of God and it makes this whole process much easier on us. He told us he wants Levins to be home. I will never be able to thank him enough for saying those words.

We got a call yesterday from the surgeon's nurse. We were on the schedule for Friday 12-11 at 7am. I had mixed feelings immediately. The words I had wanted to hear for almost 3 months were finally said and I didn't know what to say. I knew all along that this day was coming and did know that it was going to be a rough surgery on her. I know that we will get through it and she will be home. I can finally see a glimmer of light at the end of the tunnel.

I will never get used to seeing my children and wife in pain. Seeing Cullie cry when Levins is in pain is something I can not explain. I tried to talk the nurses into letting me donate part of my esophagus so it wouldn't be as painful for Levins. They told me it was not possible. I pray that I could change places with Levins during her surgery and recovery. I pray I could take the pain away from Cullie. I pray that Rett will have her Baby Sister home soon.

Please pray for the surgical team in the coming days. Pray that God will use their hands to repair Levins. Pray that she will recover quickly and as painlessly as possible. Pray for Cullie that she will have strength to hold us together during the coming weeks. Pray for her wonderful care team in the NICU. I don't think they will ever realize how much we appreciate them giving our Levins the opportunity to live. Pray for our families as the stress of surgery is almost here. I am going to say the same prayers and also pray that God gives me the strength to be the rock my family needs. Our fighter is going to be able to breathe and swallow on her own soon!