Em at 3 Months

Em hit the three month mark this week. And with every monthly milestone in her life that meant that there were a few doctors that we got to visit. This month was neurosurgery and ophthalmology. This was the first time since Em was born that we actually got to sit down and go over her brain MRI with someone know actually studies the brain. Dr. Fuchs went over the MRI with us and we realized that her brain isn't as "almost normal" as we thought it was. Derek and I were under the impression that it was just the very front of her brain that didn't fully divide, but there is actually a significantly large portion in the back of her brain that didn't divide as well.

We asked the Dr if it was kind of odd for Em to be doing as well as she is and he said that it actually wasn't. I then told him about all the other babies that I read about online with the same diagnosis and how they're doing terribly and he said that online you mostly only ever find worse case scenarios because those people need an outlet or people to reach out to. The people that do well, just tend to go on with their normal lives. (But families with healthy babies, we want to hear from you too! Spread the HoPE!) So that was kind of refreshing. But then he also said that right now Em isn't expected to be doing much mentally, but as she starts missing milestones is when this is really going to start being real for us. He said that we obviously don't know when it's going to happen, but that it will eventually, and that the team at Duke will all be ready to help us when it does. 

Our first visit with ophthalmology was slightly disappointing. Mainly because the eye doctor was the first one to tell us that Em has something wrong with her that doesn't involve just her brain. Visually, she sees pretty well right now, but her optic nerves aren't as healthy as they're supposed to be. A normal healthy optic nerve is supposed to be pretty pink, and Em's are pretty grey. It's nothing that requires immediate surgery or fixing right away, but is something that we'll have to keep an eye on as she progresses. We have another check in with them a year from now. 

This week we realized that the doctors mainly only see Em for the things that are wrong with her. They only see her as "unhealthy optic nerves", or "prefers downward gaze", or "fully fused frontal lobe". Meanwhile, Derek and I just see Em as Em. She's our perfectly sweet baby, who does all the same things that Jay did as a baby, who has no obvious signs of discomfort. In fact, if there wasn't a line of doctors waiting to see her every month, we would probably forget that there was anything wrong with her. 

When I think of how perfect Em is to us in our eyes, it makes me think of how Heavenly Father thinks of each of us. We are Em's parents, and to us she is perfect. Heavenly Father is our Father. We are his children. So to think about how he sees each of us, beyond our imperfections is so comforting to me. He sees us for the potential we have, and for the perfect beings we can become. And that is exactly how we feel about Em. There were quite a few people who thought that we were crazy for not terminating our pregnancy because of the poor quality of life she would have. To that I say, she is perfect, and her life is worth living. 


Things to Know About Em at 3 Months:
  • She's over 12 pounds and 2 feet tall
  • She fits in 0-3 and 3-6 month clothes 
  • She's sweet in the morning and grumpy at night
  • She mostly sleeps through the night
  • She can lift her head for 10+ seconds
  • She is loosing hair at rapid rates (me too)
  • Her cheeks are so perfectly kissable
  • Her biggest fan is her big brother who loves tickling her toes


5 comments

  1. This post really touched me today. Your daughter is beautiful and every life is worth giving a chance. We are not God and I am so thankful for that!! I don't ever want to forget who is really in control and thank you for reminding me of His unfailing love.

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  2. From another mother who has doctors and therapists lining up to tell me what is wrong with my precious child and point to all that he can't do and postulate on what he won't ever be able to do; please know you are not alone. I know the road I walk is different from yours but I believe that special needs children turn ordinary parents into special parents. They are worth all the extra effort and their lives are valuable in how they touch the lives of everyone around them. With God you can do all things! Me too.

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  3. Your daughter is SO precious! And she is incredibly perfect, no matter what anyone says is "wrong with her". Love the name Kinsley, too.

    - Sarah :)
    www.thecrownbijoux.blogspot.com

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  4. Kinsley is perfect. And she was blessed with parents that have the perfect attitude. Thank you for giving her a chance to be so darn cute.

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