It is safe to say that I didn't learn everything I needed to know in kindergarden, but am instead learning everything from my 3 week old (tomorrow!) daughter. Even down to simple things like really using soap EVERY time washing my hands, not just running them under hot water. Vivian is forcing me everyday to stretch in my faith, my trust, and my hope in Christ.
Last night was truly the first night I thought I was losing everything. When every nurse on the floor was in our room, when the doctor was called in from dinner, and a table full of meds was wheeled in front of our room, I knew it was a moment to freak. Although everyone was calm, I couldn't help but ssense the undercurrent of stress that was filling our room. Vivi, after being extubated all day, went into distress in similar fashion to the last attempt to extubate last week. This time, an EKG was done while she was at her peak, a rapid 200 beats/minute, when she should be 120-165, the graph showed she was having similar waves to people having a heart attack. Luckily, we caught it fast enough, quickly reintubated her, and strapped in for an emotionally long night. When the doctor sat down to discuss with us what was happening, I couldn't help but verbalize the scariest thought I have ever had, "is she going to make it through the night?" Obviously, he isn't God, but his response was hopeful that we had caught the problem early and she would be sedated and become stable again. He was right, and we were blessed to have another day with Vivian here with us. How quickly I forget that everyday we have, period, is a blessing.
Today Vivi went through the ringer again as the doctors are stumped as to what is happening inside her body. She had a procedure done that had a camera video her heart. The doctors were hoping to find a mechanical problem, that could be fixed by another surgery. Not to our surprise, that wasn't the case. The Norwood surgery she went through is textbook perfect. Looks beautiful. It is her little heart, the muscle itself that isn't strong enough to sustain her being. That being said, we spoke with the transplant doctor today. This seems like Vivian's best option with this finding. If you have been following my blog from the beginning, this is something we have prayed wouldn't happen, and we are here.
It is amazing how God works--last night, my hope was gone. I wept in the chapel until nothing else could come out. Although immense peace was upon me, I couldn't get back to a hopeful place. I was in and out of sleep, and began the day with doctors once again all outside our door, puzzled and apologetic for not having answers. At 2 this afternoon Rod and I met with the transplant doctors. We discussed this option, and the doctor said something that brought me so much peace, and a renewed Hope, I knew God was in the room with us. My fear of a heart transplant is the fact that Viv's body could reject the heart. Her body right now is revulting against the surgery she has already had. Maybe this idea of a 3 part surgery isn't good for her. The doctor continued to say, not that this will happen, that when a liver and heart transplant are done together, the lihe ver protects the heart and the probability of rejection lowers. Immediately, I felt so hopeful! Maybe this is why God wants her to have a heart transplant, so both her liver and heart will be new. We don't even know 100% that transplant is the new route, but it is seeming to be. We will know tomorrow after the doctors meet and evaluate all Viv's information.
I have been repeating a mantra in my head since last night: "I praise you Lord! It is good to be here. My hope is in you Lord!" I have had to remind myself of these truths. I think all of you would know I am lying if I said this has been great. It honestly, bare bones, totally sucks. I hate to watch Vivian be poked, and intubated, extubated. I hate how with each ding of the monitors I jump to check Vivi's stats. I have a love/hate relationship with the fact that nurses come in and out every 5 seconds. I hate that I can't do anything--I can't hold my baby, I can't feed her, I can't hear her cry, I can't even change her diaper since she is back on a catheter. However the peace that transends all understanding and the great hope in the will of Christ calms me down, and brings back to my heart the positive thoughts and attitude to get me through each moment. My nurse today has blessed my heart--she is a mom, and can understand my heart. As I cried to her today about not being able to hold Viv, she came back when I woke up from a much needed nap with news that made me cry again. She spoke with the doctors, and we are removing all the lines that prohibit me from holding her tonight and tomorrow morning so I can hold her tomorrow afternoon. As she told me this, my heart exploded. I cannot wait until I get to fully embrace her....not just stroke her head and rub her arm. It's another one of those things we take for granted. To be able to give my daughter a real hug....I get teary eyed thinking about it!
Like I said tomorrow I will have more news. Please continue to pray for Vivian, that God's will for her is done. Pray for the doctors to have great wisdom as they meet tomorrow. Pray for our nurses that they continue to have the compassion and tenderness to work with us and Viv. Pray for all the families that are on our floor. There is so much suffering. Please pray for Rod and I...that we have the grace to continue to be the best we can be for Viv and each other, and that we have the strength to continue through these next days.
I am attaching some links of songs that have been so great for me during these past few weeks. In some of your comments, you have shared that Hope is something you struggle with. Know, that I am praying for all of you as I struggle with hope too during this journey. Maybe these songs will pop in your mind when you need some umph!