I had delivered my babies on Sunday morning, so Monday brought on a new challenge. I needed to be with Ben. Paul and I had talked our entire relationship about having a son and naming him Ben and then calling him BenBen because his last name would be Bennett. He was my little dream come true. I woke-up ready to get out of the ICU and go see my baby. I got up and started walking to prove that I was ready. I begged to have my foley discontinued so I could get around a little quicker. Everyone kept telling me to take it easy, I kept thinking you can go take it easy, I had a baby that needed me. If you know me, I am pretty stubborn and I had made my mind up to spend as much time as possible with my baby, nobody loved him like I did.
Paul had done everything I had asked. If you know me, I usually have a plan ready. I told him that my mom could stay with me after the c-section, but I wanted him to stay with our son. Paul would come back and tell me about the different drugs Ben was on and repeat whatever the nurses had told him. I know he was exhausted from taking all of our family back to the NICU to meet our baby. I am so glad that everyone got to meet him. He was so cute and so tiny, only 2 lbs and 13 oz. Amazing how something so little could have perfectly formed fingers and toes, a tiny nose, precious ears, and hair. I guess one hidden blessing was that I was a nurse, so I knew what every value on the monitor meant, I knew what each drug he was receiving purpose was, I knew the side effects, I knew why his vent settings were being changed, I understood it all. I don't remember any physical pain from my c-section, but my doctor thought I should be in a lot of pain because he was so rushed throughout the whole surgery. I only remember this feeling in the pit of my stomach, my knees feeling weak, and my spirit feeling broken. This was not my life, it wasn't, I had to be stuck in a nightmare.
And then, I started my angry conversations with God. I would tell Him how I had waited until I was married to have sex, I had served Him my whole life, I had done everything He said, Why was He doing this to me? Raise my babies up like Lazarus!! You have to, you owe me. Take me instead, take me please, I don't want to live without them. I had already planned on them playing baseball together, one a pitcher, the other a catcher. God, I already had this autoimmune illness, why are you doing this to me too? WHY? Tell me now. I still don't have answers to my questions, but I never want to feel self righteous again. That is what I was feeling, I honestly thought I deserved a baby more than someone else and I know that is wrong. I know this is wrong by knowing so many of the most amazing people in my life that are unable to bear children. One in particular is Misty Reim Williston. Little does she know that she has helped me heal and given me peace. If I had to list a person that I only can think of good things to say about, it would really include the entire Reim family. The first thing I think of when I think of this family is Jesus-He oozes out of this family. Joining a bootcamp in March, I was reunited with the Reims and Misty is gracious enough to share her story of infertility. I honestly can't think of anyone more deserving to be a mother than Misty. Her baby would literally be the luckiest kid in the world. She has lived her life as a light for Christ and if I could, I would have a baby for her. I do not understand why God has not allowed her to bear a child, but I still pray that He will give her this blessing. Misty made me realize that I am not more deserving than her. If I had to go through all of this pain again to be able to have Thomas, then I would, Thomas is worth it. She hasn't had this opportunity, but she deserves it even more than me.I know God loves Misty, therefore, He must love me too.
I visited Ben several times on Monday and I talked so much to him. I told him how much I loved him and how much I needed him. I told him that it didn't matter if he had cerebral palsy, brain damage, or anything else wrong with him, he was still mine and I loved him no matter what. I could handle anything. Ben still had not peed, this is very important because his kidneys were not functioning and he was too little for dialysis. Suddenly, I was the mom wishing I could give my baby my kidneys. He started having seizures, they were constant and I felt more helpless. I have seen hundreds of seizures, but I had never seen my baby have a seizure. I started praying so specifically, please let my baby pee, please let him stop seizing. During one of my last visits on Monday night, they had to start bagging him and I noticed his oxygen sats were a little lower each time I came to visit. I wanted to be positive, but it was getting harder by the second to be positive, I needed a glimmer of hope, I needed a sign from God. Please talk to me God, do not leave me. All night while I slept in my Antepartum room, the nurses who had taken care of me came in and cried with me, hugged me, sat with me, protected me from too many visitors, and they pampered me. I have no complaints about the care I received, I felt loved the whole time.
Tuesday morning was hard, really hard. Paul left with his parents to go eat breakfast and make funeral plans for Jacob. I was alone when they came in to do a test to check for brain activity. This is the only time I got angry with a worker. This lady, who I could tell just finished smoking a cigarette, came and without putting on gloves, started putting these electrodes all over Ben's face and head. The nurse caring for Ben told her that I was a nurse and I was familiar with this test. She started doing the test and I could tell by her gestures that there was no brain activity, but I simply couldn't stand how she was acting like my baby didn't matter. I asked her to get her hands off of Ben. The charge nurse had already caught on and intervened and had a very nice elderly man come and complete the test. The news was grim. No activity, no pee, still seizing.God, I need a little ray of hope here. They ordered an ultrasound of his brain next. He had two major Grade 4 brain bleeds and they found that he had several "white spots" meaning that in utero, he had been deprived of oxygen, he had brain damage. I could tell by the monitors and the way he was starting to look that he was dying right before my eyes. NO, please God, you have to take me, I already have something wrong with me anyways, Please God, don't do this, forgive me for whatever I did to make you hate me, please stop punishing my son for my sins. Why God, why have you abandoned me? Save Him and I will never sin again Save him. Save my baby.
Dr. Bedi came up to me and my Aunt Kay was there with me, it was her turn to visit with Ben. He said it, he said it out loud. "There is nothing else we can do for him, he is dying, he is suffering, you need to let him go." My knees failed me, I hit the floor, this was real. I was crying, wailing, and saying that this doctor didn't know me, I would change my kid's diapers until he was 100 years old, I loved him, I wasn't ready to lose him. Wasn't losing Jacob enough. I can't have more babies. What am I supposed to do? I don't want to be selfish and make my son suffer just so I could have a son. My aunt Kay had lost a baby too. She knew my pain, she knew what I needed. She held me up and then she went to get my momma. I called Paul and told him he had to get back to the hospital asap, Ben is dying. They shut the monitors off so that I couldn't see his vital signs anymore, I couldn't stop looking at them, his blood gas came back and his blood was so acidic, he was turning purple, even with the vent. I heard them talking about an oscillator vent and I said NO, I hated those ventilators and I had never seen a kid live after being placed on one. Paul arrived in record time and we were able to hold Ben as he took his last breath. Oddly enough, a childhood friend of my cousins Robby and Mike, named Jake was Ben's respiratory therapist and he is the one who disconnected him from the vent. My baby never took a breath on his own, I never heard him cry, he never peed, he never threw a ball, he never ate or drank anything, but he did exists and he stole my heart. I can't tell you why, but everytime I think about Dr. Bedi talking to me that day, I cry. I can't get past it. My aunt doesn't know this, but sometimes just being around her makes me emotional and I have to compose myself. I'm so glad my family all grew up on the same street and that we are all so close.
I saw the looks on the faces of the other moms in the NICU, the fear that their baby could be next. After Ben died, I wasn't as open. I just leaned on Paul and somehow he got me back to my room. I was mad now, no I was pissed. I was mad at Dr.Rowe, why didn't he take my babies out on Saturday before the twin to twin transfusion occurred? I know now that he is not psychic, but I still wonder. I said some awful things to God, but in the same instance I had a new respect for Him, He had lost His son as well. He watched His son suffer too. I wanted to curl up in my bed and die, that is the real truth. I was hoping for every post surgical complication in the world. I would have gladly taken a blood clot, massive bleeding, a terrible infection, you name it. Paul and I spent time with Ben in our room and then our immediate families came in separately to visit and hold Ben. I will never forget the look on my Pawpaw's face. It was pain, pain from losing his baby girl more than 50 years ago, he had never properly grieved for her. By the way he was looking at me, I know how much he loves me, he looked like he was in physical pain. For me, every breath was a struggle. For the first time in my life, I had no desire to eat, no desire to open my eyes, no desire to continue. I knew I was a different person, I would never be the same again, I would never be as carefree as I used to be. Blind faith, that is something I would have to regain, or had I ever truly had blind faith? These events would start me on a soul-searching journey that I am still traveling. Paul and I held Ben until the early morning hours of Wednesday morning, we fell asleep in a tiny hospital bed with our son in between us. I wanted to keep him forever, it was so hard to hand him over to the nurse to deliver him to the funeral people. Ugh, how would I survive a funeral? I am tough, I don't like for people to see me sad or weak, but I had no idea how I would survive the next few days, much less the rest of my life.