So I know I said I wasn't going to blog tonight, but I changed my mind. I tend to do that a lot. Today was our next appointment. It was also the echo of Mary's heart. We were meeting with the head specialist in our perinatology group. I won't say too much to keep her name confidential, but she is pretty high up in Arizona. She definitely knows her stuff. She wasn't as warm and fuzzy as our last doctor, but she knows a lot, and I appreciate that. She (and her med student) still sat in a circle with us as we cried and tried to understand our reality.
Today's appointment was at 1:00pm. We left the office at 4:20pm. It was a long appointment. The first hour and half was ultrasound and getting more measurements since she was bigger. I love seeing her alive, even if it's inside of me. I know ultrasounds can be somewhat controversial, but I am so thankful for them in our situation. There are days I struggle to "connect" with Mary because I'm scared. When I get to see her heart beating and her slight movements, I am completely enamored. It reminds me why I continue to fight through these struggles.
We saw both hands, both feet, heart, brain, kidney (only one), bladder, stomach, and face. Each part of her tiny body was looked at closely. Her heart was beating so strongly. Her tummy was full. Her legs were still crossed. She is still in a ball. When we were looking at her face, we could also see her hands and feet because of her position. I knew enough to know that wasn't normal. I also knew that after more than a month, she hadn't moved, and that couldn't be good. I know often I go into detail, but tonight it's just too hard.
The only "good" news we got was that her bowels seem to be normal now. Yay! Unfortunately, we got a lot more "bad" news. Our sweet Mary is missing a big part of her aorta. This is essential for life without my placenta. She can't oxygenate her blood without it. She also has Spina Bifida. The bottom of her spinal cord is outside her body. ABSOLUTELY HEARTBREAKING. This is in addition to her brain abnormalities. Today, one side of her brain was substantially bigger than the other side. The fluid in her brain is just getting worse. She also only has one kidney. While they aren't certain, the doctor is pretty sure her kidney isn't functioning at full capacity because of my low fluid. I don't have any words to describe how I felt today. Sam and my sister weren't nearly as shocked as I was. Sam reminded me that we are preparing for the worst and hoping and praying for the best. I guess I had forgotten. I was so full of hope, and in this appointment, it was completely taken away. I sobbed yet again. I feel just as crappy as I did a month ago. I am handling it better, but my heart hurts just the same. I so badly want a complete healing for Mary, but each time we discover more. Mary is also measuring almost 3 weeks behind in size. The doctor explained that this gap is just going to keep increasing because she isn't growing or developing normally.
I don't even know what to say from here. I love Mary so much, and I can't believe this is really happening. I know without a doubt that God is right next to us, and wiping all my tears away. I don't have any doubt, but yet I am so angry. I cannot wrap my head around all of this. I know He works all things for good, but I don't see any good right now. We thank God for each day we have with her. The doctor explained the only reason she is still alive is because I"m healthy and my body is supporting her. I thank God for my overall good health.
From here, we will continue to love Mary unconditionally. We will value every day and moment with her. We will experience life and make memories with her. She is our baby and no abnormality will change that. Mary Margaret, mommy and daddy love you so much!
We will continue to praise God through this storm....
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