Lately, sleep has not been my friend. I lay in bed doing my best to clear my mind and fall asleep. Yet, I watch the hours pass on my clock while my mind races a mile a min. I don’t just think about stuff…I play millions of scenarios over and over…I have millions of conversations with people I’ve met and people I’m not sure even exist. The things I think about are of course centered around my pregnancy, birth, and NICU experience with Taryn, and this pregnancy. And because I’m crazy I always start at the top and work my way through to present day or the future. It must be a linear flow of thought.
Almost all of Taryn’s stay in the NICU was at Los Robles. Walking into that NICU became like walking into another room of my house. But when we had to transfer to UCLA, my world fell apart. I sat for 94 days in Los Robles always wondering if the fact that Taryn was on the vent and not able to get off, would that mean it could ultimately kill her? The vent was giving her life but, could it also turned into the machine that took her life. I never really asked the question, but I knew it wasn’t a good thing that she couldn’t get off it. I talked it over all the time with her Dr.s and Nurses and RTs…and I could always feel what they knew was a possibility but never really came out and said.
My poor little girl fought so hard to get better, but all the lung tissue she was able to grow would end up getting destroyed by the vent and her infections She was fighting a losing battle.
When we transferred her to UCLA, I can’t even express to you the finality of what this decision represented. As faithful as I remained that God would heal her, I knew in my heart, His voice was never silent…He was going to take her soon.
As a child, my mom always said that I had this very matter-of-fact attitude and air about me that Jesus and I were buddies and we talked and I very clearly heard His voice. I never feared death, I always said when He decides it’s my time, its my time…and it’s cool cuz I’ll be with Jesus so it won’t be scary. When something big and unpleasant was going on in my life I’ve always heard His voice and knew He was there. I usually had this sense if the outcome was gonna be good or bad. I’ve never questioned whether the Lord was standing with me.
The afternoon after I was admitted into the hospital, I remember it was just me and my Mom in my room, I love Lucy was on and I was so exhausted I couldn’t keep my eyes open. I remember my mom giving me a hug and I remember me crying and telling her it wasn’t fair…I picked out a name for her…I want to have a daughter running around with her name. (Choosing a name for this child is proving to be a very hard thing for me.) I’ve never shared this, but it was in that moment Gods voice was as clear as if he was a physical person in my room speaking to me…my little girl wasn’t going to make it. I knew then that everything I did to help her live was going to be the biggest battle I’ve ever faced. God was going to take her in his time, and my job was to put my faith in him and fight for her life.
Satan was an ever present force in this battle. We had a Dr tell us to just abort her…we had more kids frozen we could try again. While I was on the Mag, right before I delivered, it was as if satan was physically in my hospital room taunting me to give up. I remember writing a post asking everyone to pray for me because he was tormenting me. When my water broke, it brought such a relief because my body had made a turn we couldn’t rally back from. I wasn’t given the option to quit, my body told me where we were going next. But ohh did he give me good reasons to try and stop the Mag, and stop trying to get my body not to go into labor. I was so physically exhausted it felt as though I was physically fighting a battle with satan.
We fought every step of the way for life for our daughter. The day before she passed I knew it was my one last plea with God, that he leave her with me, that he would change his mind and let me keep her. The more I prayed that prayer the louder his voice was that he was going to take her and it was going to be ok. But I never stopped asking him. The morning she passed she woke up and spent some time holding our fingers looking at us. In that moment even though she made it hrs longer than we thought she was going to be able to, I knew it was happening. God was giving us our last moment with her. And then my heart stopped feeling. It was as if all my emotions were paused. She started de-sat’ing. Ben and I clung to each other…me begging and asking him what do we do! What do we do?! We said we should let them bag her and by that time the RT, was already getting set up and the Dr was there helping. We watched the monitor and she came back up for a split sec and then her O2 dropped to 15. By this time we were standing there next to her. I didn’t even look at Ben, I just put my hand on the RT’s hand to tell him to stop and at the same time Ben looked at the Dr and said it’s ok to stop. I prayed my baby into heaven. I remember telling her it was all ok now, and how wonderful she must of felt and how much we loved her and wanted her but God loved her so much she was going Home.
The one thing I feared most finally happened. The thing that was constantly lurking around the corner and me never knowing exactly when it was going to appear…finally appeared. I knew at 19w2days pregnant that my baby was not going to live a full life. I could have helped her go Home months earlier, I could have ignored Gods voice and ended this whole experience really quickly. But his voice is so powerful and so comforting there was no way I could have ignored him. My biggest struggle was to make sure I was interpreting It correctly so as not to make a mistake. But He knew my heart and He knew I was constantly wanting His will for Taryn’s life not mine. And when I would make the wrong decision, he would step in and make it clear what His plans were.
I can honestly say deep down I have had God’s peace about this pregnancy. But, I’m human and I am ridiculously in-tune with my body. In times like this it is a heavy burden. I feel every twinge, and every pinch, and every pull. I am constantly running through a mental checklist of pre-term labor signs and running a diagnostic from head to toe of how my body is feeling. I am hyper vigilant and afraid that if I give myself a break from the monitoring, I’m going to miss something and end up with a repeat. I’m constantly in prayer asking to be relieved of that burden, and as soon as God relieves me….I yank myself back to the crazy thinking, often times scolding myself for letting my guard down. Its a ridiculous cycle, and night time is the worst.
I need to stop driving myself crazy. I need to be 100% ok with trusting in God’s plan. But there are times when I am so darn scared of His plans even though I know He knows best. This last year has stretched me so thin I can’t believe I am still alive at times. God has been faithful and continues to carry me through the majority of my days. I just can’t wait for the day when Ben, myself and our little munchkin are cuddled in bed together. That is my goal and the one reward I so desperately need. That one moment of closeness that only Ben and I can share with our baby, that moment I need so badly to help patch some of the holes in my heart.