Anencephaly Sucks

When Dr. Ott left the room the ultrasound techs held me. I wish I had gotten their names. They were the only people I had right then and there and I was so grateful for them. As tears rolled down their cheeks, and mine, they gave me Kleenex after Kleenex. They said they didn't want to leave me and, again, I was so happy they were there. I called Jeff which felt like a dozen times with no answer. (Stink pot was definitely sleeping on the couch for the rest of the week!) When I couldn't reach him I called my step-mom. I don't recall telling her what happened, I just told her I really needed her and she said she'd be there as soon as she could. I tried Jeff again, no answer. Gosh I hated his phone more than ever. I called my Daddy. No answer. UGH! What was I going to do?! Then, the phone rang. It was my Dad! Hallelujah! I told him what I understood, that something wasn't right with the baby, his head was hurt and he wouldn't survive. I needed prayers and someone to come up here!

Finally, in the midst of my thought overload, Jeff called. Poor guy hadn't felt my phone calls, his phone was on vibrate, and he was meeting with a guy from work, eating lunch. I told him something was wrong with our baby . It wasn't good and I desperately needed him to be by my side.
He was on his way.

I sat in a tiny green room, with my tissues. My sweet ultrasound techs came in and checked on me periodically, brought me water. I just sat. Millions of thoughts ran through my mind. I was so sad. So. incredibly. sad.

After what felt like forever the Genetic Counselor walked in. It was the same lady we had spoken with earlier. Oh the irony. She expressed how incredibly sorry she was about the news and how shocked she was by the findings. Everything seemed as perfect as perfect could be when we had talked earlier. She sat and explained what this nasty thing called Anencephaly was. Its a Neural Tube Defect that takes place in the 2-4 week of pregnancy. Its in the same family as Spina Bifida. The neural tube is like a pancake, folds into a tube, and seals itself. If it doesn't seal along the edge where the folded sides meet, its Spina Bifida. If it doesn't close at the top its Anencephaly. They aren't certain what causes it. It could be a mix of genetic and environmental factors. Taking folic acid months before you could conceive can lower your risk, but it can still occur. It happens in 1 in 5,000 births.

(I hate how little is known about it. I'm going to fix that.)

Finally, Jeff walked in! He held me. Took in the news and learned that our sweet little munchkin was indeed his little boy.

The last few days have truly been a grieving process. I accepted the news and learned as much about Anencephaly as I could.

I then denied it. I thought there was no way MY baby had this. I can't tell you how many times I googled misdiagnosed Anencephaly, only to be emotionally shut down with the words "Anencephaly is rarely, if ever, misdiagnosed." Shut up google!

I studied Luca's ultrasound pictures like a hawk and compared them to Declans. I had a perfect profile picture of Luca from a few weeks prior and I knew, this one time, Dr.Ott just had to be wrong. Luca had the perfect big ol Hill noggin!

Those thoughts were given the big fat"No" when my doctor, who I love so much, sat with Jeff and I and explained it all again. I showed her Luca's beautiful profile. She lovingly explained that it indeed was part of his brain and if I look close enough I can see there is no skull. It is completely gone. He has Anencephaly, and the entire top of his skull is missing.

I hate to say it, but I got really mad at God. I'm human. Ive been through ALOT throughout my life. The good, the great, the bad, the scary, and the down right terrifying. The first day I had heard Declan's heart beat I prayed that God would never ever take a baby of mine away. I have strongly dealt with everything that has been given to me, but I was certain that if I ever lost my baby I would die. It became an obsession. I was overly paranoid, overly protective. The poor kid still sleeps in my bed sometimes because I get too nervous to let him go. In fact, Prozac became my friend this year because I became so consumed with worry and losing him. I wonder if again, my heart knew, before my body knew just what was in store. I was so mad at God and felt utterly betrayed. I try everyday to live my life as Christ would want, to praise him, to share his story, to make sure my son carries Jesus in his heart. I was so angry that I had been put through so much and that, my baby, the one thing I begged to never be taken away from me would be leaving me. I was crushed.

I got through it though. God picked me up and held me and let me cry. I'm glad that I got angry with him because I felt so much better. Right then and there I knew he didn't want this for me.
I read so many words of advice, sentiments, and prayers for us and Luca. That is what God wanted me to see, know, and understand. He created my beautiful baby and he wasn't going to let me lose him. He knew that Jeff and I were the only two people on this Earth who could love this baby like he needed and we were the only two people on this Earth who could keep his spirit alive. Forever.

Now, clearly God and I had had a miscommunication about what I had been asking, but I got it. :) I've accepted it and I am so thankful for God and the fact that he chose US to love this little boy. How lucky are we? So Lucky. God is so great to us.

We are also so lucky for all of our families, friends, doctors, prayer groups, and strangers who have reached out and supported us this past week. Without your support and words we'd be completely lost. Thank you from the bottom of our hearts for getting us through this week and for the weeks that follow. Its been felt, its been heard, and it is our strength.

And on my own personal note, thank you to my Jeffrey. I am so in love with you and so blessed that you are by my side. Thank you for letting me cry every night and every day and for just holding me. Thank you for helping me to see the bigger picture and for being the rock that you always are for me. Thank you for being THE BEST father to Declan and to Luca. You are our angel.

Our goal, with our doctors, is to get Luca here alive. We want to hold him and tell him how beautiful he is. We want him to know how much we will miss him when he is in Heaven and how wonderful, whole, and safe he will be there. We want to shower him with love. We want him to feel his Mama and Daddy's hugs and his Big Brothers sweet kisses. We want him to know how loved he is by so many people and how much he means to his family. That is our hope. That would be our miracle.

We've also chosen to chronicle his life as hes growing week by week. He already has such a personality (In fact, he's kicking and begging for chocolate coca-cola Crackle Barrel cake right now!) and we want to share him with anyone who would like to know our little boy.