How I Survived My Pregnancy + Em's New Diagnosis

1 Nephi 3:7 says, "And it came to pass that I, Nephi, said unto my father: I will go and do the things which the Lord hath commanded, for I know that the Lord giveth no commandments unto the children of men, save he shall prepare a way for them that they may accomplish the thing which he commandeth them." 

For anyone going through a hard time, I know that verse of scripture to be true. We don't get to pick and choose the things that we will go through in this life, but I know that the Lord always prepares a way for us to make it through the things He asks us to do. 

During my pregnancy I felt inspired to read the entire bible in 100 days. That's a commitment of about 16 chapters a day, everyday, for 100 days. It was a big commitment, and hard at first, but I felt like it was something I really needed to do. Reading the bible really helped me to take my mind off of what I was going through, and it helped me to stay off the internet, which meant there was less time for me to read horror story after horror story of babies going through the same journey our Em would take.

To be honest, after reading the bible I don't really remember much of it. I remember a few key stories, but I'm still not a scholar by any means. The one story that stood out to me the most during my 100 day journey was the story of Abraham when the Lord asked him to sacrifice his son, Isaac. For background, the Lord commanded Abraham to sacrifice his son Isaac on the top of a mountain. So the two of them set off on a journey up the mountain. The entire time Abraham is walking right along side his son, knowing that the only way this could possibly end is with the death of his son. At the last minute, when Abraham has his son on the alter, getting ready to kill him, the Lord steps in, commends Abraham for his faithfulness, and provides a ram for the sacrifice instead. 

After reading that story I truly felt like Derek and I were Abraham, being asked to sacrifice our daughter. We didn't know how the story was going to end but I always kept just a small glimmer of hope that at the last minute, the Lord would prepare a way for us as well. 

During my pregnancy there was never a moment of anger, or why me, or any of that. We knew all along that the Lord was using us to fulfill His plan and purpose for our daughter, whatever that may have been. There was always a constant sense of peace in our house, and I can honestly only remember two times that I actually cried over anything that was happening. We knew that what we were going through was much bigger than ourselves and knowing that we were part of a bigger plan really helped us to stay calm during those last few months. There was never even a moment where I was begging the Lord to just make it all go away. I remember my prayers being specifically along the lines of, "You can do whatever you want to me, I'll eventually get over it, but please don't let this little girl suffer no matter how long or short her life may be, please just let it be peaceful". Having that faith that the Lord would eventually provide comfort was definitely our anchor during those last few months.

Since then it's just been abounding miracle upon miracle in our house, and I'm constantly humbled by how much we've been blessed. During the pregnancy it seemed like things were just getting worse, and worse, and worse, and now things just keep getting better, and better, and better. 

Two weeks ago we met with our new neurosurgeon here in Atlanta. He went over Em's MRIs from Duke and flat out told us that he 100% did not agree with the Diagnosis that Duke had given us and that he firmly believes that Em has Lobar Holoprosencephaly, not Semilobar. What this means is that there is more division between the two hemisphere's in the brain than what we had previously thought which makes for a better outcome looking forward. He then went on to tell us that every expectation and hope that we have for Em, she'll eventually get there. It will take a lot longer for her to get there than other babies but she eventually will. 

He did say that it still looks like her corpus callosum is pretty much nonexistent. The corpus callosum is primarily responsible for the two hemispheres of the brain to interact and communicate with one another, so when she gets older and tries talking it will take a while for her thoughts to actually make it outside of her mouth.

There really aren't words to describe when a doctor gives you a new diagnosis like this. It literally was like he gave us the gift of new life and meaning for Em than what we had previously planned for. Once Em hit her 1% chance to 6 month mark with her previous diagnosis it was always kind of like sitting on pins and needles waiting to see what would happen next. I told my in-laws that it felt like before we were fighting a battle between life and death, and now it's just a battle between ability and disability. I prefer the second battle infinitely more than the first one. 

Em's life will still have difficulties and challenges but it's a challenge we're ready to take head on. She starts physical therapy on June 5th and from there we'll have a better picture of what we can expect for her over the next few months. 

Just so you guys know though, this girl is just so smart. I love her so incredibly much. The other day in church she was holding her binky in her hand, put it up to her mouth and decided it was backwards and wouldn't go in her mouth correctly, she then turned it around and put it in her mouth the right way. If that's not a sign of intelligence, I don't know what is. She also loves interacting with Derek. Derek will click his tongue at her, and then she'll click hers back at him. He'll also growl at her, and she'll growl back... I think she's doing just fine without that corpus callosum.

I also just want to say that just because this doctor saw something different than the doctors at Duke does not mean that we discredit their medical abilities one bit. We had a world class neurosurgeon in North Carolina and I value every bit of information he gave to us. But when we brought Em from the hospital I kept saying that something just wasn't right (as seen here on instagram), and it just feels so much more peaceful to have this new diagnosis that seems to match her abilities better than before. 

5 comments

  1. I love your cute little blog and your posts. I am so happy for all you. Em is very beautiful and will be very successful. I am a special education teacher in the past and I have worked with with kids. They all are so bright in their own ways.

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  2. Yay! Her story is already so amazing!

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  3. Hey! I just happened to stumble upon your blog, and you are so amazing! I loved reading Em's journey.. and yours for that matter. Thanks for being such an inspiration!
    XO JNESS
    jenessasheffield

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  4. Wow you are one strong Momma. You and Em both sound like sweethearts and I can't believe you read the whole Bible in 100 days O.O I am so unrighteous ha

    Gina
    Pink Wings

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  5. I want to start by saying I AM NOT A DOCTOR. I honestly do not think the 1st doctors made a mistake or misdiagnosed. I believe in following your story and knowing your faith that God is healing her. Bible says to pray for healing. It does not say that if we pray for healing God will heal a 100% but it does say God will heal in his perfect timing. Your prayers and all the prayers of people who care and love you. God is slowly healing in his time.

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