Heaven Sent.....Heaven Bound

This is something I have sat down and tried to write over and over again, but my emotions get the best of me every time I do so. I usually end up an ugly mess and shut the laptop for another day. It's a day I want to remember the feelings I felt and the bittersweet experiences we had, so I am determined to finally get it down  in words. It has taken me over 6 months, piece by piece, to write about this special, yet completely life changing day.
Tytan had an awesome week. He was more alert than ever, acted more content, and things seemed to finally be moving in the right direction. What was about to come never crossed my mind and took me by complete shock. To be honest I thought we were past the point of "losing him" and we were focusing on the other obstacles that lied ahead of us in Tytan's life. It was the first night I didn't stay at the hospital and chose to go stay down the road with Azleigh, so she could have some mommy time. I called multiple times throughout the night and called 6:00 that morning. They said they had a quiet night and he was doing pretty good, so once again I chose to eat breakfast and get Azleigh dressed for the day (something I had missed so much in the last months). I got to the hospital to his bed about 9-9:30, and to my surprise the entire CICU staff was surrounding his bed. I got to my boy and he just didn't look good, so as a team and myself we talked of what it might be. One of the suggestions was one of the arrhythmia medications he was on was rough on the liver, so they lowered the dose and sent blood to the lab to check his liver function. The test came back that his liver was failing due to the med, but they still felt like something more was wrong. I think I was still a bit confused and naive to what was really going on at this point. I still had so much hope and felt like we were over the word "death". They decided to order an echo and check his heart function. Usually they let the echo tech do his job then wait for the results. Not this time. All of them stayed and watched Tytan's echo. I could tell by the look on the face that it wasn't good, and they were extremely concerned. I had tried to focus on my baby vs. the screen, but I happened to glance at the screen. I had seen multiple echos in the past 6 months, and by no means was a pro but knew the basics. I could tell that there was blood flowing in the wrong direction. Dr. Vernon, the ICU doc, pulled me aside into a room across the hall. I was all alone and I heard the words no parent ever in their life wants to hear. We have had many hard talks, but never had this words been said. The doctors had fought so hard for Tytan because of me. They knew I wasn't going to give up and they could see the hope, hurt, and desire to have my son so badly. He begin to tell me that Tytan's heart is failing and failing fast. His AV common valve is regurgitating and his body was not receiving the blood supply that it needed to keep surviving. Then came the dreaded words.... Teisha, I know you want this boy more than you want your own life. You both have fought a long hard battle. As a team we have worked so hard to get her little boy better. In fact, we have tried harder and longer than we do with most because of your drive and determination, but Teisha THERE IS NOTHING MORE WE CAN DO. You need to get your husband and whatever other family you would like because Tytan's time is short, and I honestly don't know how much longer he will make it. At that moment, my body froze and I felt my heart shatter into a million little pieces. I couldn't let go. I couldn't go on without him. He had become my whole life over the past 6 months. I got on the phone and told Jordan who immediately left Vernal and headed to the hospital. I begin to call my parents and my brothers letting them know if they would like to say goodbye they should probably come up that night. The staff moved us to a bigger room to make things as comfortable as possible for all of us. Jordan made it to the hospital faster than he ever has before. When he walked through the door the tears fell. As he kissed Tytan, all he could say is I couldn't wait to take you on your first fishing trip sweet boy. I guess its going to be a lot longer than I thought before I get to do that. He kissed him and he kissed him. Jordan has always been the tough one between the two of us. He doesn't cry very often, and he doesn't usually show his emotion around people, including me. So to see my "tough" husband this way broke my heart even more. Our family came one by one to kiss our boy and say goodbye. I will never forget watching my parents rock their grandson who had stole their heart since he came home to their house. Living with my parents temporarily has given them an opportunity to bond with both our babies in a special way. They sobbed and they sobbed. Azleigh rocked her brother over and over again singing "I am a Child of God". Being 20 months old, she understood way more than we gave her credit for. To be honest, I think she's known more from the beginning and that is what she has handled things so well and fell head over hills for her baby brother from day 1.

The Now I Lay Me Down to Sleep organization sent someone over to take some pictures of Tytan and our family. Our surgeon and cardiologist spent much of the afternoon in our room talking with us. Later that night I was able to do something I had missed so badly. We had the sweetest nurse in the world who went above and beyond to organize our room and a bed, so I could sleep with my little guy for one of the very last times. It is a night I will never forget, and for the first time in 2 months I felt whole whole again. I was able to hold my baby all night long with my hand on his chest feeling his chest rise and fall. I'm pretty sure Tytan loved it just as much as I did.

Friday is the day I think I finally accepted what was about to become our reality. Over the past 2 months, I don't think I was in denial or really naive to what was going on, but I truly felt in my heart that it wasn't Tytan's time yet. I couldn't possible imagine his mission being over when he had touched SO SO many people in 6 short months. I just knew the Lord had a miracle for us, and Tytan was going to continue to change lives. Friday day was a pretty quiet day with just the 4 of us. We spent the day reading books, cuddling, and enjoying some of our last moments as a family of 4. Tytan actually started to look a little better, and the doctors even came and talked to us about trying to get us home on hospice because Tytan could be around for days or even weeks. Friday night at about midnight our world changed and we as parents witnessed the hardest night of Tytan's life. Every night Tytan would go into SVT. Usually they could get him out after shocking him once or twice. This night was different. Tytan wouldn't come out of SVT. His poor little body was shot, and the docs were trying every possible thing. They first started to shock him and after about 10 times they decided to call the EP doctors and ask for their suggestions. They told them to 4x the Adenisene and give to him. This was the absolute highest dose they had ever given to a baby. They gave him the shot and we all watched his heart flatline (which it is what it's suppose to do) and pretty soon it started right back into SVT. They tried gagging him over and over again to hopefully get his heart to restart. At this point, they once again sat us down. They told us the only thing they had left to do was to try the shocking paddles. They informed us that this could stop his heart completely, and he would be gone right then unless we chose to do CPR. Jordan and I briefly talked about it as a couple and knelt down in prayer. We both felt we would try it ONE time, and if he didn't come out of SVT we would keep him comfortable until his little heart couldn't beat any longer. At this point, we had 3 different doctors in tears, Tytan's nurse in tears, and many who were ready to walk out because they truly felt like they were torturing Tyt. They were trying to help him but truly he was tortured that night. As a parent you can't comprehend the pain it causes you to witness such a thing. Finally we all crossed our fingers and got the paddles hooked up. I couldn't watch my little baby's body lift off the bed, so I stayed in the hall while Jord stayed close to his bed. It worked and his heart went back to sinus rhythm, BUT he wasn't breathing. The respiratory therapist bagged him for about 10 minutes until he started breathing regularly on his own. They needed another IV, and his poor body was so done. They couldn't get a vein and poked him 9 times before they finally got something. Once he was settled medically, we finally rocked him and rocked him and rocked him half the night. Finally Jord decided he was going to go get some sleep in a sleep room down the hall, so I decided to go with him for a second to change out of my clothes. As we got to the room, we both knew we had to make some decisions. We couldn't put Tytan through the torture he had went through tonight anymore. Jordan and I once again felt we needed to get down on our knees. We prayed more in the 2 and a half months we were there than we did our entire lives. We were in constant fasting and pray. I swear we fasted every other day for our little boy to be healed. We prayed every single night and had a constant prayer in our heart that he would be healed, and that we would be able to watch him learn and grow. This was the first night in Tytan's ENTIRE life that we prayed for something more, something different. We prayed for the strength to let go of our will and trust in the Lord's will. We prayed that the Lord would take Tytan home if he wasn't going to heal him, and we prayed that Tytan and the Lord would declare when it was Tytan's time to go, so we as a parent didn't have to make that choice or live with the fact we had to make that choice. We prayed that Tytan would be out of pain and would pass peacefully when that time approached. We cried and we cried and we cried, but as we ended our prayer we both were overwhelmed with a sense of peace, and we knew Tytan's mission on this earth was coming to an end. I kissed Jord goodnight and headed back to sleep in my baby boy's room. For the first time in this journey, I had accepted the Lord's plan for Tytan. I no longer pleaded with him to save him, and I no longer asked him to let me keep him. I was filled with the reassurance that he would be safe, not here, but in the arms of our loving Heavenly Father. I knew he was mine forever, and I would have the opportunity to raise him again, but not this life. Tytan was valiant enough that it was almost time for him to return home, and as a earthly mother I had to let him. I now know this is what both Tytan and Heavenly Father were waiting for. They were waiting for me to accept it and to be okay with it. Of course I will never be okay with losing my son, but after this particular night I had a whole new concept of HAVING to let him go.

I can't begin to tell you how wonderful the staff was with us. They tried so hard to make things just a little easier. They accommodated my every wish and let me do everything I wanted, that you can with a super sick babe in ICU, with my two little ones. We took Tytan and Az on one last wagon ride together. They both loved it. It tore me apart knowing these moments on earth wouldn't be possible for much longer, but I tried not to think of it and tried to enjoy BOTH my babies together. Saturday we also had to meet with the team ONCE AGAIN and make some decisions. We had to make the choice to DNR or not where there was no other life saving equipment that could be used on Tytan. CPR would only hurt Tytan and keep him here until he crashed again. Along with the team, we chose we would continue to treat Tytan medically meaning we would keep him on all his heart meds, pain meds, etc. but we would not do anything invasive anymore. Watching her write DNR on Tytan's chart felt like I was writing "kill my child". If it was for me I would have given him CPR for the rest of his life to keep him here with me, but I had to realize as a parent you can't be selfish. It wasn't about me. It was about Tytan. Tytan didn't deserve to suffer any longer. When his body, mind, and spirit declared it was time to go that as a mother I had to let him go whether it's what I wanted or not. Tytan did well for most of the day. Once again, late that night Tytan's stubborn little whacked heart went into SVT AGAIN. :[ We chose to try shocking him one time and nothing else. If it didn't work we were going to once again keep him comfortable until that little heart stopped beating. Luckily it worked and we were able to spend one more night with our boy. Jord slept in the fold out bed in his room, and I slept in the rocking chair with Tyt.

Tytan was blessed in the hospital when he was just 5 days old the night before his first OHS.My mom's wonderful friend sewed him a little tux, but I never got the chance to have pictures of him taken in it. Thanks to one of my friends who had another friend who was a photographer in the area we were able to get a few pictures of him in his suit. He looks so sick, yet so angelic. He is definitely a little angel who was patiently waiting to earn his wings.

Sunday was Tytan's half birthday, so we decided we would throw him a party because the reality was he wouldn't be here for his 1st birthday. The night before Jord stayed with Tyt while I ran to the store for a minute to get balloons and a few decorations. My sister in law offered to make a cake, and Child Life let me use their supplies to make a poster. My dad came early so he could hold Tytan while I got the room decorated and changed my clothes. We got Tytan dressed up, and I just have to say he looked like such a little stud in his colored jeans and button up. All of our family/friends came up for his party at 2:00.
We had no idea Tytan was going to pass that day, but now looking back there was a spirit in the room that day that wasn't present any other day. There was always a sweet spirit, but not like this one. Tytan's little body was so wore out and things were slowly shutting down, but on this day he was so awake. He knew it was last day on earth, and he was sure he told everyone goodbye. He spent much of his time looking upward, and I now know he was conversing with the angels. We sang happy birthday to our boy, took pictures, had cake, and just visited. Tytan hadn't had anything by mouth in over 2 months, but we made sure he got a taste of frosting that day. Most of our family had left or at least were out in the waiting room. Jord had stepped out to talk on the phone. I was holding my boy and visiting with my friends: Tammy, Kristal, Aidaly, & Leah. Tytan has been given some pain medication about a half hour before. I turned and noticed his heart rate was a little lower than usual. I asked his nurse Brandon if that was normal, and he assured me it wasn't anything to worry about. Sometimes the pain meds can lower your heart rate. I continued to watch the monitor and within seconds his heart rate started to drop. It went from 120 to 109 to 91 to 89 to 70 to 62 to 48 to 27 to 18 to 11 to 7 to 0. Yes I very vividly remember each one of those numbers. Tytan was asleep until his heart hit O, and he opened those big bright blue eyes in fear. I could tell he was scared, torn, and not sure what was happening. At that moment.... I said the hardest words as a parents. "You can let go now Tytan. You've passed your test. Mommy will be okay!" I watched his little chest rise about 3-4 more times after and he was gone. My friends ran to grab Jord, so he could be with us as he passed. 
At 4:00 P.M in room 7 in the Cardiac ICU, the same room he started life in, our sweet little boy was pronounced passed. Our prayers were answered. No not in the way we had hoped for or originally planned. He answered our prayers by freeing him from pain, letting Tytan declare it was his time, and allowing our boy to pass quick and peacefully. I will never forget the peace and spirit that filled the room and my heart. I was surrounded by my amazing husband and the doctors and nurses who I had learned to love so much. I couldn't help but cry out "He's free. He's whole. He is no longer suffering." My heart was broken and I wasn't sure how I would ever survive, but all I did know is my baby boy was finally free. He never again in his life would have to be poked, shocked, cut open, or hurt in anyway. To a mother who had watched their baby fight and struggle for their entire life, but especially the past 2 months this brought more comfort and peace than anything in the world at that particular moment.
The next 6 hours were the most spiritual moments of my entire life. I have never felt the spirit the way I did that night in Room 7 in the ICU. Right after Tytan passed I requested that everything "medical" be removed. For the first time in over 2 months I was able to see my baby's body completely free of cords, IV's, 02, and any other tubes. For the first time in 2 months I was able to walk around the room without worrying about going too far from the bed. Soon after all our family came in and seen Tytan. We were able to rock him, to love him, and to treat him like we did at home. Azleigh got to come sing to her baby one last time. I know during these moments it was only his body, but his spirit was SO SO close I felt like I still had my baby boy. After a few hours, we asked our family to leave, so Jordan and I could spend some alone time with our boy. We rocked him, sang to him, told him everything we wanted to, and kissed his sweet little lips at least a million times. We called the mortuary and asked them to be there at 10:00 that night. Time passed by so quickly, and it was getting close. We were able to bath our baby for the last time here on earth. We dressed him in his "superman" outfit and wrapped him tight in one of his favorite blankets. They told us they could take him downstairs to their morg until our mortician came to get him, but the thoughts of that freaked me right out. I felt it was my responsibility as his mother to take care of his body as long as I could. Jordan packed up our room, which basically looked like a house after 2 months there, and the time. Our nurses took turns holding our boy, kissing him, and we said our farewells to the ICU staff who became family to us. We met Mike, the mortician, and we walked downstairs. The time came to hand over my baby for the last time. I'll never forget what Mike said... There is nothing harder than taking a baby out of their mother's arms. I promise I will take the best possible care of him. He walked out one door with my baby, and we walked out another hand in hand. For the first time..... Reality hit & it hit hard. We were left empty handed and broken heart. We never again would enter into those doors to see our baby Tytan. We would never again be walking out of the doors with our baby in our arms. He was gone from this earth.
As soon as we left the hospital we returned to the Ronald McDonald House to stay the night. Azleigh stayed with us and asked for her baby Tyt multiple times through the night which was like pouring salt on an open wound. As you can imagine no one got much sleep that night. Our pillows were wet from all the tears and our bodies were mentally, physically, and emotionally exhausted.
As much as I long to hold my baby boy that night and every night since I couldn't help but think of the reunion when my sweet valiant baby boy passed through the veil. I could vividly picture my boy on the lap of our Heavenly Father both grinning as the Father said, "Well done, my son. You passed your test and you passed your test well. You completed your mission on earth, and now it is time to teach the people here on the other side." I wish so badly I could have been there for that reunion. I know how proud I am of my son, so I can only imagine how proud our Heavenly Father was and still is today.
It is a day I will never forget and a day I never ever in this life want to relive. We have witnessed much heartbreak but also many miracles and tender mercies of the Lord throughout this journey. We ache to hold our Tytan boy every second of every day, but we know his is safe and happy. We never have to worry about him and what he is doing. We are so grateful the Lord trusted us to be the parents of such a valiant, perfect, celestial, and righteous little boy who is ours forever and ever as long as we do our part. Every single day is a struggle, but with the gospel, faith, and the prayers of so many loved ones each day we feel a little more hope, a little more peace, and a little stronger to get through another hard day. We love you Tytan and look so forward to our reunion! Thank you for choosing to be our son and stepping up to pave the way for our family!!