Genetic Counseling

It has been just over 72 hours since we got the news that shook our lives. SO MUCH has happened it's crazy. Today was the first morning that I didn't want to get out of bed. I cuddled with Sam for a few minutes, cried, and then gathered the strength to get up and moving.

Sam and I took all the extra food from our celebration yesterday to my school. I knew we wouldn't eat it, plus teachers always love food. I wanted to start the week celebrating  Mary even though I wasn't at work. It was a little overwhelming to even walk into the building. I am SO glad Sam was with me. I hope it makes walking into work a little easier tomorrow. We dropped off all the food in the lounge and then went into Lisa (my principal) office. We were greeted with huge hugs. It was exactly what we needed. We sat for a few minutes where we asked some difficult questions about the future and insurance and all that crap. It sucks so much to think about how differently life might be. I am both looking forward to and VERY much dreading going back to work tomorrow. Hopefully I can find the strength.

After leaving my school we went to the genetic counselor. It was a 1 hour 45 minute appointment that felt like 10 minutes. I had a bunch of blood drawn to look at my DNA and see if there is a connection. The doctor really didn't think so. She is pretty certain it happened spontaneously during conception. So we will wait and see. She also went over the findings and ultrasound report from Friday in a lot more detail. That was really, really tough.

Mary is measuring about two weeks smaller than she really is. Here is her official diagnosis. Its a lot of medical jargon, but I know there are a few people who want to know specifics. Her head is not shaped correctly they call it Strawberry shaped. She has Holoprosencephaly and Hydranencephaly. She also has Parenchyma, Lateral cerebral ventricles, choroid plexus, corpus callosum: agenesis of corpus callosum. She is missing her cavum septi pellucid, posterior fossa, cerebellum and cerebellar lobes. They say her heart is EIF which means its abnormal but they don't know what. They will do an echo on her heart in a few weeks. She has echogenic bowel. They couldn't see her kidneys or lungs due to her being so such a tight ball. They said there may be problems with her kidneys since my amniotic fluid is so low. They also couldn't see her nose or lips.

All I hear with all that is bleh, bleh, bleh, bleh. It's devastating. I don't know what else to call it. But yet I STILL HAVE HOPE. I WILL NEVER LOSE HOPE.

After the appointment we went to my sister's house to spend some time with family. I love being around my niece and nephews. They have no idea what is going on and I love that. Matisse, my oldest nephew always kisses my belly and tells me he can't wait to meet his cousin. That gets me every time. My hope and prayer is that he gets to. He loves her so much already and I am so in love with that thought. Mary has the best cousins in the world who love her already. Rayden, my youngest nephew crawled at full speed directly to me when we walked in. I love holding and cuddling him. It's like he knew exactly what I needed. Macee and Liam, well they are Macee and Liam and it's perfect. They are wild and trouble makers together and can make me laugh like no one else. I love their innocence.

Today and prayer and focus is on John 13:7 "Jesus replied, 'You do not realize now what I am doing, but later you will understand." Lord.... that is my prayer. I pray. I hope. I continue to fight for you Mary. 

Below are some pictures from our gender reveal party and celebration yesterday. 

Everyone wore the color necklace they thought we were having. It was really hard to keep it a secret from the few people who didn't know. 

Adorable cupcakes made by Mary's aunts that were secretly pink inside for us to eat after the big reveal. 

Two of my favorite little boys waiting for the pink balloons to come back down from heaven. 

Could the box have been any cuter? 

The Follet side of the family and the Krause side of the family looking at wedding pictures of happy joyous times. 

This little guy has let me cuddle him to death the last few days. That smile melts my heart and gives me hope. 

She thinks we are having lots of babies. Maybe she knows something about our future. <3

Food, flowers, friends, family, love, prayers, hope! 

Mary's cousin Amanda. I think she is the only one who put her hand on my belly. <3

He is the best uncle (and daddy) in the whole world!

Quickly trying to cover the pink with frosting as everyone started to show up!