I’m sitting here on the couch snuggled up to the tiny blanket Aveline was wrapped in while I held her. I wish I could say that every day gets better, but it simply isn’t true. Every day hurts, but some days are absolutely heart wrenching. I close my eyes and I see her perfect face. The face I spent 31 hours memorizing after her last heartbeat. There are times when it still feels like a nightmare that I eventually will wake up from. Only recently has the reality that Aveline will never come home really started to set in. My body aches for her. I beg for her. I wish I could put into words the kind of pain that comes from experiencing the loss of a child. I thought I had experienced suffering and pain before this, but nothing compares. There’s no rationalizing it away, no reasoning, no “bright side” or light at the end of a the tunnel. My perfect, innocent, beautiful baby girl is gone. Saying that out loud kills me. A lifetime is too long to miss my baby this much. Unfortunately, as any parent who has lost a child knows, sadness isn’t the only emotion I experience each day.
There’s guilt: Guilt from feeling like I wasted so much of my pregnancy being anxious, worried, depressed. I loved Aveline from the moment I knew I was pregnant, but my anxiety and depression didn’t care. I took moments with her for granted, because never in my wildest dreams did I believe she wouldn’t be in my arms come October. I worry that I caused her stress, that I put her at risk. It makes me feel terrible.
Guilt from feeling like my body failed me. What I haven’t told you yet is that after Ava passed away, I had extensive blood work done. Third degree congenital heart block doesn’t just happen out of the blue. I learned after it was too late that I have antibodies in my blood that attacked the electrical system in Ava’s heart. My blood caused her heart block, and I never even knew I had these antibodies. I never had any symptoms. Of all mothers carrying these antibodies, only 2% of babies go on to develop a third degree heart block. Literally, 1 in 25,000 babies develop this condition. Our high risk doctor explained it as “winning the worst possible lottery.” The worst part: had they know about these antibodies before Ava was born, my pregnancy would have been handled completely differently, and Ava might still be growing peacefully inside my uterus. “What if” is a dangerous place for me to be. How do I live with this? I still don’t know. Ryan tells me I have to remember that it isn’t my fault that we didn’t know I had these antibodies before Ava was born, but when I face the fact that it was something in my body that attacked my baby, I can’t help but feel the most overwhelming sense of guilt. Why God chose to reveal the fact that these antibodies existed in this way, I’ll never know.
Guilt from feeling like I didn’t do enough to save my baby. The combination of anesthesia and pain medication post c-section made my memories of that first 24 hours with Ava SO fuzzy. I’ve tried remembering details about the first time I saw her, or conversations with doctor, but so far I haven’t been able to recall much of anything. I’m scared that I didn’t ask enough questions, that she didn’t feel loved, that I didn’t touch her enough, do enough of her care, tell her how much I loved her enough. I’m scared she was in pain, that she was frightened, that she didn’t know me. I feel guilty that we held on too long, and also that we didn’t hold on long enough. There are so many questions I have. So many memories I need to come back. I need to know that I did enough. That I was the best mommy I could be while my baby was with me.
There’s anger: Anger at the fact that I felt like the doctor made me deliver Ava way too early. A baby at 24 weeks is not only at a high risk for developing all sorts of problems later in life, but also is at high risk of fatality. She needed more time to grow inside my belly, and instead she was taken traumatically. Ultimately, it was most likely her prematurity that caused her passing. I’m angry that had the doctors only done and echocardiogram before my c-section, they would have suspected heart block and they wouldn’t have chosen to take her. Like I said before, those “what if” moments kill me. Angry at my body for making these useless antibodies that broke my baby’s heart. Angry at God for choosing to take my first born child. Angry towards those who don’t appreciate their children. Angry at myself because I feel like I didn’t do enough. So much anger.
There’s happiness: Ryan and I made the most beautiful little girl. Truly, she was perfect in every way. She had beautiful brown hair, and the cutest button nose. We were able to watch her chest rise and fall for two and a half days. I felt her warm body through the incubator. I cradled her head and her bottom to comfort her. I took her temperature and changed her diaper when I could. Her little hand grasped our fingers. I watched how much my husband adored her. I watched how much Ava loved her daddy. It made me love him even more. Some parents don’t get to meet their baby while she’s alive. We did. Thank God we did.
There’s SO much appreciation: The nurses were amazing. How they gathered so many things for Ava’s memory box in the short time she was alive, I’ll never know. The NICU nurses took pictures of her for us. They gave us her blood pressure cuff, her thermometer, the left over body wash we used to bathe her after she passed. The antepartem nurses cried with me, made sure I was eating, respected our time with our baby. Ava received two beautiful dresses from the hospital; one in which was a beautiful white gown she was buried in. We received professional photographs of Ava and ourselves from a bereavement photographers who do this for parents who have lost children at no charge. To be honest, at the time I didn’t really want them, but now I don’t know how I would survive without these precious photos of my baby girl. I am so incredibly thankful for those. Our families took such amazing care of us. All of them. We couldn’t have gotten through the hospital stay, her memorial services, or the week following without them. I don’t think any of our family will ever really know how much everything they did means to us. We could never thank them enough.
My emotions are all over the place. They change day by day, hour by hour, minute by minute. Right now, it’s about survival, and that’s about all I can manage. Surviving. I didn’t know how deep a mother’s love was until Aveline was born. I wish more than anything that I could have her here with me right now. That I could take care of her. That I could hold her. But because I know I can’t, I’m going to do the best I can to make her proud, to let her know just how much I love her, to honor her in every way possible. Mommy loves you to the moon and back, Miss Aveline Mae. Always and forever.