Emmy's 3 month check-up...
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But Emmy’s pain didn’t stop there. We started to notice that something seemed “different” when we would look into her beautiful dark blue eyes. She wouldn’t look back at us, and her eyes would wander or bounce, but we kept hoping for the best for our beautiful little blessing.
At Emmy's 3 month pediatric check-up that her doctor made a comment about her eyes and recommended she see a pediatric ophthalmologist.
It was at that appointment that we heard the most devastating words we have ever heard, “Your baby has Optic Nerve Hypoplasia (ONH), we can’t be sure what she sees or if she can see anything at all, and there is no treatment”.
The doctor’s file went on to state:
10 week old showing no visual attention; severe, bilateral optic nerve hypoplasia--very likely to have lifelong, severe visual handicap
How do you respond as parents when you get news like that? We were numb. We did the only thing we knew to do…. we cried together, and then we prayed together.
Slowly, we began by telling family, and then friends, about the lifelong sentence that had been placed on this innocent sweet gift from God. “What do we do now?”, was our prayer, and we began to lose hope.
Family and friends could see our struggle and immediately began to cover us with calls, cards and precious prayer. Our Associate Pastor had the entire church surround us like legions of angels, and we all prayed together as one for Emmy’s sight, and so started “Emmy’s Prayer for Sight”.
I love you baby girl! We are going to get you over to China! That's a promise! Love, Mommy
HI, Im very moved by this site its almost brought me to tears because I know exactly how you feel. My son, Rylan, was born December 23, 2009 via cesarean because he has 2 very large cysts in his left and right ventricles. He under went brain surgery when he was 2 weeks old and had a VP shut placed to drain the left cyst. His NICU stay was a month long and he sampled every ventilator they had (high frequency to a simple cannula). The hospital finally sent us home with a referral to an ophthalmologist but never gave us a reason why. He is 4 months old now and has been diagnosed with ONH and we haven't found out his level of sight yet, but I'm afraid of the answer. He never looks at me. His eyes "look" around all over the place but never at anything or anyone. He smiles when we tickle him and when we talk to him, and you wouldn't believe how his face lights up with love when he smiles. He is beautiful. I am 19 years old and this was a lot to bear when I found out. I carried this baby for 34 weeks and as far as I knew or the doctors told me, everything was perfect. On Christmas day we almost lost him. I dream of Rylan looking me in the eyes and smiling and knowing who I am and what I look like. Id give anything. I will never be able to afford going to China to have any kind of treatment done, but I pray you will. I wanted to bank Rylan's cord blood just in case "something" happened, but again I couldn't afford it. Emmalyn is beautiful and she is in wonderful hands. God has great things in store for her, and God will give you all the power to be your daughter's miracle worker. I wish you the best of luck and all the prayers as well. God Bless.