9.12.13

9.12.13 has taken the cake for the absolute worst day in the history of my life. I never thought I would ever in my life experience the things that have taken place today. It has been a horrible, horrible, nightmare that I am praying I wake up at of. As you all know Tytan went in for surgery today. He was scheduled first case, so we walked down our starving baby to hand him over once again. I cried and it was hard, but not as hard as it was last week. I even mentioned to Jordan it wasn't as hard this week. I told him I'm not as worried and can't wait to hold him in just a few hours. I never in a million years expected our day to end the way it did. We handed our little man over at 7 AM and was told it would take 3-4 hours. They told us they would give us updates periodically and well they didn't. We heard from them for the first time at 11:00 and they told us things were going good, but it would be a few more hours. My parents came up and brought Az, so we played with her to try and keep our minds busy. We stayed in the room with her, took her to the play room, had lunch, and walked the halls. At about 2:30 the nurse came in and said they needed to clean Tytan's room upstairs and we needed to get our stuff out because after surgery he would be monitored in the CICU. I asked them if they would please call down and see how Tytan's surgery was going. At this point he had been in surgery for 7 1/2 hours. They said they were about done, Tytan was tolerating things well, and they should be finishing up in the next hour. As you can imagine at this point we were dying. My heart was skipping a beat and I COULDN'T wait to hold my sweet little man. We waited in the surgery waiting room until we FINALLY got the call to go speak with the surgeon.
At about 4-4:30 we met with Dr. Sarrel. She said things went really well, but the surgery was unsuccessful. They found out Tytan has multiple extra pathways and they were unable to ablate all of them because of where they were located. They did slow a few of the paths down though. She said how unique Tytan's heart was and that they only see a heart like his once in every 20-25 years. She said it was very interesting and showed us some pictures of his heart. She said Tytan tolerated it great, and they were just getting ready to take him upstairs to the Cardiac ICU. She said we would spend 1-2 nights there and go from there. It was such a relief and I was SOOOO excited to see my little man. We actually raced up the stair running through the hallway to meet our little man. We probably looked like 2 little kids running through the halls. Little did we know as we walked through those doors our lives would change FOREVER. We would never again laugh and be truly happy like we just were walking down those halls.
As I walked through the doors I had over the intercom, "CODE BLUE" I looked at one of the nurses and said, "Greg, that isn't my baby boy is it?" All he said is "I don't know but I would run down and see what is going on." I ran downstairs faster than I ran up them, but this time their was absolute fear in my heart instead of happiness. I ran in the Cath area and Dr. Adam Ware (formerly from Nephi) met me at the doors. He didn't have to say a word. I knew it was my baby. I knew he was gone. I said to him, "He's not gone yet is he?" He simply said, "Not yet. They are doing CPR now and doing all they can to bring him back." I instantly fell to my knees and pleaded with the Lord out loud.... NO, NO, NO Please don't take him yet. Please let me keep him longer. Doctors, Nurses, RT, and millions of other medical staff flooded the room trying to help. When I finally came to and back to reality I couldn't stop shaking. I asked Dr. Ware if he would please get in there and give my baby a blessing. I just knew that he needed a blessing. After waiting about 10-15 minutes I asked Adam if I could see my baby. I knew I couldn't touch him but I just wanted to see him. I wanted to know he was there. I wanted to make sure they were doing all they could to help him. Adam was very good to give us updates every few minutes. He got permission for me to come in and it was not what I was expecting. It was awful. It is like a scene from a bad movie that is constantly on repeat in my head. There were more people than I even imagined. My sweet little boy's limp body was laying on a large OR table limp & lifeless. Three men were taking turns doing CPR and with each compression blood would squirt from his incision. I kept thinking how can I hand over such a perfect happy smiling baby and return to this. After about 5 minutes I couldn't take anymore. I couldn't watch them torture my baby any longer. As I was walking out the ECMO circuit (life support) was entering. They would be hooking MY BABY up to a heart and lung machine. How could this really be happening?
 As I went back in the imaging room I see my poor 23 old husband with his head in his lap and eyes filled with tears. He said to me, "Babe he's taking our little boy home. We need to call and tell our families to get up here, so they can come say goodbye." I will never forget the fear and heartache in his eyes. My husband is tough, so tough, and very seldom cries. When he does I know things aren't good. We made calls to our family and continued to wait. Dr. Ware was so awesome and constantly updated us. Finally after 55 minutes Tytan was hooked up to ECMO and they would be transferring him to the CICU.
An hour later we finally got to see our little man, but it wasn't the little man we handed over and NOTHING could have prepared us for what he was going to look like. Another Nightmare. To be honest I didn't know babies looked this bad ever in their life. He was purple, cold, and covered in cords, blood, and IV's. It was pure chaos around him. He earned himself 3 nurses and a doctor in his room at all times. They were constantly drawing blood and chasing labs trying to get his vitals up. They were transfusing blood bag after blood bag into him. My heart was broken. My body was in shock. My mind was scared. It was happening. The thing I worried and worried and worried about since the day he was born was really happening.
Finally Adam came into the room with a Echo Tech and was able to give Tytan a blessing. It was the most beautiful blessing I have ever heard. I don't remember the exact words, but I will never forget the spirit in the room after that blessing. My body was overcome with such peace and I just knew that he was going to be okay. It wasn't his time yet and the Lord was aware of our needs. Even though I felt some peace it didn't make me any less scared. It was the longest night of my life. We got no sleep and received bad news after bad news. Jordan and I found ourselves in constant prayer pleading with our Heavenly Father to spare our baby boy's life.
Here are some pictures of Tytan. Beware they are hard, very hard!