I woke up incredibly sad today. That’s really nothing new. Every morning when I open my eyes, I feel like I am reliving Ava’s passing all over again. My first thought is always “My baby is gone, and she’s never coming home.” How do you motivate yourself to even get out of bed after a thought like that? I’m so thankful for Ryan, because if it weren’t for him I wouldn’t get out of bed at all most days. He’s always there to comfort and console me. He reminds me how much Ava loves me, how he’s positive that she felt our love while she was here. He assures me that I was the best mommy I could be to Ava, and that I will always be her mom. He doesn’t try to make things better or convince me that I need to get over it or move on.. He just listens and supports me. Anytime I’m upset, he asks me if I want to go visit Ava. It’s become our routine that we visit her grave site every morning when we get up. I feel at peace there. It’s really the only time I feel at peace. Ryan takes a chair and I take a pillow and blanket and lie on the ground next to her. It helps me feel close to her.
I was somewhat dreading today because we had an appointment with the neonatologist, Dr. P, who cared for Aveline in the NICU. We talked to him a few times throughout our stay at the hospital, and he was never very optimistic about Ava’s prognosis, but we hadn’t talked to him since her passing. I am the kind of person who needs to know as much as I possibly can; even if it hurts. I ask questions that I know might give me an answer I don’t want to hear, but it will drive me crazy if I never ask. He told us that Ava most likely died because her heart couldn’t pump enough blood to sustain her. At 24 weeks, her heart just wasn’t strong enough. Due to the lack of blood flow, acid built up in her blood and eventually a cascade effect caused her heart to not be able to function anymore. I was under the impression that prematurity was the cause of her death, but after our talk with Dr. P today, it seems more likely that heartblock was the cause. I asked Dr. P if he thought Ava was in pain. I’ve been really worried that her 2 and a half days here were spent with her enduring excruciating pain from all of the blood draw pokes and procedures she had. Dr. P said that he never got the impression that Ava experienced much pain. She wasn’t acting like she was in any pain. That gave me a little peace of mind. I asked him if he thought Ava was aware of her surroundings and what was going on. He told me that he believes babies are much more aware than we give them credit for. I hope she was able to recognize my voice and my presence. I hope she was aware of just how much her mamma loved her. The part of the conversation that killed me, is when I asked him how Ava’s situation would have changed if she would have been left inside of me instead of being taken via emergency C-section. His answer breaks my heart. He told us that had Ava been left alone, she probably would have went full-term and been fine. She may have needed a pacemaker upon birth or within her first few years of life, but she would most likely have been with us in October. I don’t know how I am ever going to live with knowing that. I understand why they took her when they did. Her heart rate was in the 40’s, and there was no way to know until she was already born that she had a heartblock. They didn’t know I had these antibodies that could cause a heartblock; neither did I. All of the information they had led them to believe she was in distress and wasn’t going to make it if they left her alone. Ava was the 1 in 25,000 babies that would have been better off being allowed to have a low heart rate as opposed to delivering her early. How does a family get this unlucky? There are a million small decisions that could have changed this entire outcome. Every single card was stacked against her. Why? I can’t help but feeling like God is punishing us. I don’t want to feel that way, but it seems like this situation is just too perfectly unlucky to be a coincidence. She didn’t deserve this. We didn’t deserve this. I am so angry right now. I want a do over. I just want to go back and refuse the c-section without letting them talk me into it. I want to go back and skip that stupid 24-week routine appointment that caused this mess. I want to blame someone, anyone for taking my precious baby girl away from me when she was perfectly fine. But there is no one to blame. Just the crappiest set of circumstances possible. And we are left to pick up the pieces. We had to pick up Ava’s birth certificate and death certificate today, all in the same day. How messed up is that? I’m sure this anger won’t last. I don’t want to be angry. It’s not going to do any good and I know that. I never realized how much every single tiny decision you make can influence your life so dramatically. Every “what if” moment breaks me. She could have been saved, if we only knew what we know now.
I love you so much Aveline, and I am so sorry that we didn’t know enough to be able to save you. I hope you’re happy and dancing in heaven baby girl.