The Progress
May 30, 2013
Annie is scheduled to be born in 3 weeks. This is actually happening and there is nothing I can do to stop it or even delay it for a little while. I have never felt so helpless in my entire life. I have such mixed emotions about the day of her birth, and I feel them more intensely with each passing day. I feel a huge amount of guilt when I find myself wishing it was all over. We have been grieving something that hasn’t happened yet, and we’ve been doing so for 4 long, excruciating months. At the same time that I am praying for this journey to move forward, another part of me wishes I could keep her safe and with me for as long as I can. I can feel the weight of her approaching birthday, and it feels like stones around my neck. Once this is over, it will be over…
Robert and I had several appointments this week. One was with my OBGYN and we scheduled Annie’s delivery. When a baby has a condition that is “incompatible with life,” doctors can deliver as early as 34 weeks but they usually do so around 37 weeks because waiting till the baby is at term doesn’t change his or her fate. We discussed this and decided that we wanted to carry our girl as long as possible in the hopes that we could possibly extend our time with her. If we get an hour instead of minutes, or a few hours instead of one, to us those precious moments are worth 2 more weeks of 3rd trimester pains. She will be delivered at 39 weeks. I’m so thankful that God has given me perseverance in this time. In both of my previous pregnancies I changed my initial plan due to being in pain. This time I feel unwavering in my commitment to carry Annie as long as I can.
Other than Annie’s diagnosis of anencephaly, she is perfectly healthy and this pregnancy has been fairly uncomplicated compared to my previous ones. Our doctor is Dr. Chad Smith at OU Medical and he is a wonderful man and an extremely competent physician. Robert & I feel like he has gone out of his way to respect our decisions and accommodate every request we have. He delivered Harper Lou and my niece Georgia, and he is someone my entire family trusts with this delicate time in our lives. I can see the compassion in his eyes when he talks to me, and I feel like he is personally invested in making sure we have the best experience possible.
We also had a meeting with two nurses from Life Share to discuss organ donation. We have mentioned our desire to donate Annie’s organs from the very beginning and we have done so to every single member of the health care team we have come in contact with. Every response was the same. “I’m not sure how that works, but I’ll do some research and get back to you.” I found this to be very strange that no one knew how to go about infant organ donation. Recently, my eyes have been opened to a whole new world where sometimes babies die. Surely they have done this before. When we finally met with Life Share yesterday we learned that in fact they have not done this before. They were nervous and excited (for lack of a better word) because no one has fully perused this option before, and this is so surprising to us. Other than her brain, Annie is completely healthy. She’s the perfect donor. Our desire for our daughter’s life to touch as many people as possible is paving the way for other parents to be presented with this option in the future. Our health care team is frantically working to make this possible as we speak. They are flying in an expert next week to meet with the surgical team that will procure Annie’s organs and also with us. After we meet with him we should have a bit more clarification, but from what I understand, no matter what happens they can procure her heart valves. They also plan on successfully procuring her liver and kidneys, but the viability of those organs depend on her oxygen levels. One healthy liver can help multiple children because a company called Cytonet is using an innovative new therapy using only liver cells as opposed to an entire liver. I’m praying that everything works out and pieces of Annie will help other babies live happier and healthier lives, but even if they can only use the valves, the door has been opened. A program is being put into place to make this process easier for other parents. I am so proud of my baby and all of the lives she’s touched before she is even born, and now she’s become a little trailblazer in the medical field!
This morning we had our final ultrasound. It was really emotional for me for several reasons. On the way to school, Dylan was asking a bunch of questions about my visit to the doctor. She asked if they were going to look at Annie’s head because it’s broken. She asked what her head was going to look like when she’s born. She told me that God makes everyone different, but why did he make Annie’s head broken? I was doing OK until we got to this question. I have asked God this question a hundred times and I still don’t have an answer. I thought for a moment, and just decided to tell the truth.
Me- “Honey, I don’t know. That’s something that I’m going to have to ask God one day when I get to heaven.”
Dylan- “When you get to heaven I’m going to be so worried about you!”
Me- “You shouldn’t! When Annie gets to heaven I’m not going to worry about her one bit. Jesus is going to take care of her. I don’t worry about people in heaven. I worry about the sad people down here with us.”
Dylan- “Mom?… I’m really excited for Annie’s birthday. Can we have cake?”
Me- (through tears) “Absolutely, Dylan. That is an awesome idea.”
That’s when I realized that I CANNOT forget that this is a celebration. I need to ENJOY every moment with this girl. And we should definitely have some freakin cake.
Following that beautiful conversation I went to drop Dylan off in her class. I bent down to hug her and before I stood up Harper had barfed all over me, herself, and Dylan’s classroom (she’s not sick, she’s just 2). So here I am, almost 9 months pregnant, covered in barf and mopping up the floor so all the 4 year olds don’t splash in the big orange puddle. Needless to say, Harper got to skip school and come with us to see her little sister. We finally got to the doctor after a brief pit stop at home. As we sat in the waiting room, I watched Harper laugh and play, charm the other adults, and coo over every baby that passed her by. That girl loves her some babies! She is going to be an amazing and loving big sister, and it devastates me that she’ll only get to physically love on her baby for a short time.
While we waited to hear my name called we watched as the ultrasound sign went from saying “on time” to “30 min behind,” and eventually “1 hour behind.” I cried as I looked at that ugly, hateful sign. Another new perspective Robert and I have is we don’t complain when this sign changes anymore. It likely means that behind the door someone’s world has stopped. Their heart is broken, and those people deserve all the time they need. I am so appreciative of the time the prenatal diagnostics team devoted to us on the day we changed the sign. I cried as I saw my sweet baby’s face on the screen for the very last time. I cried as Harper took the printed out pictures and shoved them under her shirt while declaring that Annie was in her tummy now.
Ever since I hit 35 weeks, I can feel it. It feels like someone has punched me in the stomach. I’m terrified of the unknown. I’m scared to death I’m going to fall apart on my little family. I know the truth, and I know that I love and serve a God who has defeated death and I shouldn’t be afraid. I also know it is so much easier to say that when you aren’t staring death in the face. I feel weak, and I feel unfaithful. I have a huge comfort in knowing that no matter how I fail in this, God is the same today as he was yesterday, and he will be the same tomorrow. He is constant. He is forgiving. He will work this for his good. He has picked me up and forgiven me so many times in my wretched and sinful life. I know God feels this pain and is weeping with me now. God knows the plan, and I don’t. I have to trust, but that doesn’t mean I have to be happy about it. Psalm 34:18 tells us that “The Lord is close to the brokenhearted; he rescues those whose spirits are crushed.”
That’s me.
That’s Robert.
That’s all 6 teary eyed grandparents.
That’s every single one of our siblings.
That’s every friend and family member who’s wept and prayed with us.
Come close Lord. We need you now. My spirit is rubble. Rescue me.