Too Perfect

There is nothing more beautiful and perfect than an anencephalic baby. It breaks my heart that the majority of these babies are thrown away. Look at how beautiful they are. They’re so sweet and innocent.

I cried and cried over this picture last night because, it hurts so much to know that people can’t see how perfectly beautiful each and every baby is. These little babies just want to be loved. And in turn, they have so much to offer.

David said to me last night, “Brielle was just too perfect. She was too sweet, too loving, too smart. The world wasn’t ready for someone so wonderful, so she had to go back.”

That’s how I like to think of all anencephalic babies, as well as infant loss in general. They’re just too beautiful, inside and out. They’re too perfect.

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A Mother’s Love

When we first received Brielle’s diagnosis and I began to look at images of anencephalic babies, I was scared. Babies with anencephaly are portrayed as monsters or frog like. They are displayed in graphic clinical settings. A google search of an anencephalic baby will leave you disgusted and horrified. And I was scared that maybe I wouldn’t love Brielle or I’d think she was ugly. Will anyone love my baby? The whole situation was terrifying and I had no idea what I was getting myself into.
 
I am a part of an anencephaly support group, I have been since Brielle was diagnosed. And fellow mothers share images of their sweet anen babies. In some of the pictures, the baby has passed and is lovingly cuddled or swaddled in special things just for that baby. Some pictures the baby is smiling, giggling, blowing bubbles, they’re happy, loved. It’s beautiful.
 
I find myself completely heartbroken and in love with everyone of these babies. They’re so perfect and these babies are so loved. Each one, has a story like Brielle’s, a story of love and hope, and trust in God. Each is special. They each had their own personalities, likes and dislikes. A lot of them were active and silly. Each one deserved a future.
 
And so it’s heartbreaking, because I know the pain the parents feel. I know how it hurts to guide your child into death. And it’s heartbreaking, because each baby I see reminds me that another will come and another will die. Each baby I see reminds me of the horrors I saw in the medical community regarding anencephaly. Each baby reminds me of the ignorance of our society, how cruel people can be towards these sweet innocent babies. And it shouldn’t be that way.
 
I can’t imagine a more purely beautiful baby. I need to make a difference for these babies, they deserve it. Brielle had a beautiful birth and loving support from See Baby and Dekalb Medical. The care and love we received is incredibly rare and it should be standard. These babies deserve to be valued and respected. They deserve to be loved by everyone, not just their parents.
 
I know now that I had nothing to worry about. I still can’t get over how perfect and beautiful Brielle was and is. I am so proud of her and I just want to show everyone how cute she was. Brielle, David, and I were blessed with incredible amounts of love and kindness. We’ve been (happily) overwhelmed and I am so grateful. I don’t know how yet, but I will find a way to share Brielle’s story and the love that you all shared with us. Brielle’s life is a story of hope and love, even in the darkest times, and it’s proof of how amazing anencephalic babies are and everyone needs to know how special they are.
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Part Three: The Delivery

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This post is about the delivery. What happened and how Brielle did. There are some graphic elements I talk about. I don’t see a point in keeping them from you all, I haven’t kept anything else from you, why start now? This time, is what David and I struggle with the most. These moments we had with Brielle were beyond painful. No one should watch their child struggle and die. But, we also wouldn’t trade that experience with her, because it was her chance to show us what she felt and how strong she was. She was amazing.

“Dr. Bootstaylor let David come into the OR with us, Lauren and Jamie waited outside. Dr. Bootstaylor is so funny, technically the husband is not allowed until the anesthesiologist has given the okay, but he didn’t care. He just let us come in and waited to see if Dr. Phoenix was okay with it or not. Dr. Phoenix wasn’t there so David had to go back out and wait in the family room with Lauren and Jamie. David has some funny memories from that wait, which was like a 45 minute wait.

Robin had me step on a stool and get up on the operating table, which was extremely small and had me wondering how I was going to fit. Dr. Bootstaylor hung out with me for a bit until Dr. Phoenix arrived and we talked about things. He was really kind and encouraging. I can’t remember what we talked about, it wasn’t pivotal or anything, just pleasant conversation. I could tell he was trying to put us all at ease, everyone knew what a hard surgery this was going to be. He stepped away to scrub in when Dr. Phoenix arrived, I appreciated Dr. Bootstaylor keeping me company to comfort me until Dr. Phoenix arrived.

Nana, the midwife for my case came over and said something about if I was part of the faith. I told her that I was and she talked to me about how we don’t always understand why things happen, but that God has our best interest at heart. She is a minister’s wife. She stood with me the whole time and encouraged me. She put her hands on my shoulders and comforted me the whole time I waited for Dr. Phoenix and while he injected the needles into my back and put in the spinal block. Everyone said that would be a horrible experience, but it really wasn’t bad at all. When he asked me to bend over the chairs were too close together and I told them I’d have to spread my legs more if I was going to bend over. My belly was huge! Brielle had been moving around, but I forgot to remember her last movement in my tummy. When he injected the spinal block I began to feel a numbness, but I wasn’t as numb as I expected.

They had me get on my back and move my feet where they were touching each other, pad to pad. They began to put monitors on my arms. The man behind me was monitoring my vitals and pain levels. Nana came and stood to my left. I was pretty numb by this point. As they put up the curtain I began to cry and Nana asked what was wrong. I told her I’ll never feel Brielle move again. It had just hit me that I had forgotten that moment and to remember it. I then asked, in a very worried voice, where David was. Nana said they wouldn’t start until he was here. A few minutes later I felt Brielle move up near my stomach. It felt like she was flipping or doing some serious wiggles. It made me so happy. God and Brielle gave me that sweet moment and I’ll treasure it forever. At one point Nana came over and told me of a song that just kept coming to mind, it was a hymn and I can’t remember exactly what it was. But it was encouraging. God had a hand in bringing her into the OR.

David joined me after what felt like an eternity. I was so scared. Lauren stood behind David and David sat in a chair behind my left arm and shoulder. Nana stood near them. The OR was not that big. After they were settled, Dr. Bootstaylor began to cut me open. I wanted to cry with anxiety and worry. I couldn’t tell when my water broke, I couldn’t really hear what was going on at all. People told me that my water broke. They told me there was a lot of water. I then felt a huge amount of pain near my stomach and I was extremely nauseous. I felt Brielle trying to burrow into my stomach and I just kept feeling more and more sick and in more and more pain. I think David said something about how he saw a hand. I kept trying to look at the light above that was directed towards the operating field for Dr. Bootstaylor. I could see reflections of things and I just kept watching, waiting to see my little girl.

I was so full of hope and worry at the same time. David said he saw both hands come out and then I heard that she was born. Dr. Bootstaylor held Brielle up for me to see. And I knew. I knew that she was dying. I could tell she had very little brain. Brielle was blue, her eyes weren’t moving or blinking, she wasn’t crying, and she wasn’t breathing. I remember I said, “Brielle.” In agonized worry. David cut the cord quickly and Brielle was rushed to my chest. The cord wasn’t milked, she wasn’t pulled out in a breech position because she fought Dr. B, she didn’t want to come out. Things did not go according to plan.

I immediately began to love on Brielle. I kissed her and she twitched. I felt a huge bit of relief because I was afraid she was already dead. I kissed her more, told her I love her, told her how beautiful she is, and sang her “I’ll Love You Forever.” She twitched as much as she could. Blood and fluid came out of her nose and mouth and onto my chest, it was so hard to see. She held on and fought so hard. David recorded it all and I am so thankful, it was so hard to remember exactly what happened. I picked her up at one point and laid her in a better position on my chest, I wrapped her arms around my neck. Kissed her little hands, told her how amazing she was. I didn’t stop, David didn’t stop telling her how loved she was and how special she was. And she loved it, and she did her best to communicate back to us how much she loved what we were saying and how much she loved us too. I asked Lauren if I should try breastfeeding and she said no. That’s when I knew that there was no hope. I am kicking myself now for not praying for a miracle, I was too caught up in the moment and my sweet girl to focus on prayer. I just have to trust that others were praying for me. Dr. Armand came over at one point and basically told me that we didn’t have much time, I was confused by everything he was saying. I couldn’t process and I just wanted to soak up what I had. I asked him how much time and he said within the hour. It broke my heart, but I turned my attention back to Brielle and continued telling Brielle that I loved her. David was rubbing on her back and telling her the same.

Nurses would come and change out towels for warmer ones. Everyone was doing their best to keep her comfortable in her last moments. David later said that everyone in the room looked really upset, they had all been hoping for a better outcome. Nana was humming a hymn to herself and trying to keep herself together.

As Dr. Bootstaylor was closing me up I began to have extreme pain. I tried to keep it from Brielle, but it was agonizing. The man behind me (I don’t remember his name, I later found out he was also a minister) offered me more pain medication, but I refused because it would make me drowsy. The pain kept getting worse, and he kept offering, but I kept refusing, I didn’t want to fall asleep on Brielle. She needed me to be strong. He eventually began to beg me to let him give me medication, at that point I was crying out in pain. I finally agreed, mad at myself that I had let Brielle see me in pain and crying. He gave me medication and I had to constantly fight to stay conscious. I just kept telling Brielle how special she was. I would nod off for a couple of minutes and Lauren or David would wake me up and I’d go back to loving on Brielle. At one point I began apologizing to her and telling her I was doing my best and I was sorry we were in this situation. David later told me that when I would nod off he would comfort and love on Brielle. That made me feel a lot better because I kept beating myself up for letting Brielle down. But when I was weak, David stepped in and loved her for me. It’s not all up to me. Brielle would twitch in response to our words of love and comfort. And when she would twitch I’d say, “Oh there’s my baby! There’s my sweet girl!” I’d get so excited and it would make her excited. She understood, she understood what was going on and that we loved her. And she was fighting for us so that we could know how much she loved us too. I never would have guessed how much that meant to me. At one point Brielle gripped David’s finger as hard as she could. This meant so much to David because it was something he had dreamed of. He’d always wanted his little girl to hold his big finger. She did that for him.

Robin came and checked Brielle’s heartbeat and said she couldn’t hear anything, but that she wasn’t sure it was gone, just very faint. Brielle was in a very awkward position and it made getting her vitals difficult. So David and I tried even harder to love on her and let her know how special she was. She wasn’t twitching anymore and as we told her how special she was David and I saw one tear come out of her left eye. It broke my heart.

Later, Linda came and checked on Brielle and said she didn’t hear a heartbeat. She said that she was just a nurse and Dr. Armand would have to confirm. I didn’t lose it. I think I already knew and that’s why I was okay. I of course wasn’t okay, but I didn’t go into hysterics. When Brielle was on my chest I could feel her heartbeat beating so hard, by the time Linda came over I could no longer feel it and it had been a while since I had. I knew she had been slipping away. By this time she was solid blue, her hands looked like blue chalk.

After this everything became very fuzzy. David said that Linda lifted Brielle off my chest for a moment and wrapped her in towels and then sat her back on my chest. He says I didn’t want her to leave me, which sounds like something I’d say. I was transferred from one bed to another before that. I can’t remember any of this, David is telling me. I just remember holding Brielle.”

Today is the Day

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Today is the day. It’s hard to believe that in five hours we will be holding sweet Brielle. David and I are doing our best, but we’re a nervous wreck. Thank you for the prayers and love during this time, we can’t tell you how much it means to us. Here’s a picture of Brielle with the Coke bear. We had a lot of fun with her this week and made a lot of good memories with her and my family.

Happy 40th Brielle!

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Wearing my Orhpans (not a typo) shirt from one of the Rifftrax we saw with Brielle.

Brielle had a great day today (Friday) and it’s the beginning of her 40th week! David took the day off and stayed with us. We woke up early this morning and had bacon (she was very excited about that!) and peanut butter pancakes. She was so happy, lots and lots of wiggles. After breakfast we went back to bed, Mommy needs a lot of sleep these days. I woke up to her acrobatics, she was just having fun, entertaining herself. I wore my “Orhpans” shirt (yes, I spelled that correctly) that David bought me for my birthday. The shirt is from the Rifftrax we saw of “Miami Connection” a few weeks ago. David wanted to be in the same nerd spirit with me, so he wore his “Big Trouble in Little China” shirt.

We decided to have lunch at Maggiano’s, Brielle had a strawberry melon soda when we were there last and she loved it. Unfortunately, that was a seasonal item and they couldn’t make it for us. But she had been wanting olive oil, so she loved her bread and olive oil and she loved the fettuccine alfredo I had too.

I am only playing her playlist of favorite songs this weekend and she has loved it. She was shaking her little booty to Frank Sinatra on the way home. I told David that at least it is a beautiful time of the year to be born. The leaves are beautiful and the weather is great. We picked up her favorite drink from Smoothie King on the way home, Strawberry Extreme. She wanted that all the time in my first and second trimesters. David brought me home one a day for a few weeks. And yes, of course she loved her Strawberry Extreme.

As I was going inside when we got home I saw this little Australian Shepherd. He was just wandering around and no one was in sight. I invited him inside and he happily came in. It was very obvious that he was recently groomed and he was very trusting of us and well mannered. He didn’t have a collar though. I told Brielle we’d have to go on an adventure to find his owners, she was excited about that! We drove around the neighborhood, but no one was looking for him. We took him to the vet and had him checked for a microchip, no chip. We brought him home and introduced him to our dog children. It took a little bit, but they’re all getting along now. Brielle kicked around and wiggled the whole time we worked to assimilate the dog into the house. Our girls (our dogs) are tolerating the other dog, which we later named Munchkin, but they are ready for him to go. And we too, are ready to find his humans, he misses his family and we’d like him to find them.

We later watched a Rifftrax of “No Retreat, No Surrender” a horribly cheesy Van Damme movie from the ’80s. I ate skittles for Brielle and David and I laughed our heads off. Brielle loved hearing us laugh and she loved her skittles. She did lots of punches and I had David put his hand on my tummy so that he could feel them. That always makes him laugh and smile.

Brielle has been so active today and so happy. I’ve done my best to stay positive for her and happy. She really hates it when I cry. Yesterday, (because I was crying) she gave me quite a few painful punches. That wasn’t a lot of fun for either of us. So today I just spent the day doing things she likes and wondering where we’ll be a year from now, or decades from now. I have no idea what to expect, but I desperately hope she’s here.

We also spent the whole day trying to get the doctor’s office to book the c-section, but no one would return our calls. We received a text late tonight from Dr. B who said he would call us Monday and book us for Tuesday or Wednesday. We asked if that would be okay for Brielle. He said her biophysical profile was good, so she should be okay for seven to ten days. Tuesday will be six days since he advised us to schedule a delivery. This whole situation makes me nervous and I’m stressed. I just want Brielle to be okay and no one knows what is going to happen. The scheduling process isn’t helping my anxiety or stress. Oh well, nothing I can do about it this weekend.

Tonight is going to be interesting. Munchkin is terrified of the dark and cries when we turn the lights off. He also stalks us into the bathroom, sneaks into our bed, and has a strange attachment to David’s pants and socks. He’s very cute, but I don’t generally let strange dogs into my bed or bathroom. David keeps saying, “I’m ready for this dog to find his home.” And, “Two dogs is plenty. Three is too much!” Which I find hilarious, because David has been asking for a third dog for a while now, and I just laugh, tell him he’s crazy and then say, “NO.”

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Our pretty fall drive.
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Brielle loves her strawberry smoothies!
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Munchkin!
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All three pups keeping an eye on each other.