Wednesday our Bilirubin saga finally ended.
Thursday Aron worked 15 hours. When he got home, I called him into Belle's room to show him something I caught her doing while reading bedtime stories. While looking for stories in her Bible, I noticed her squinting her left eye closed. I did a few little vision tests on her. I knew she could see out of both eyes, but she definately was having a little trouble finding small objects with her left eye.
Judah had a very restless night Thursday, and the few moments he did sleep, I could not because I was worrying over Belle. What could cause her to start squinting all of the sudden?
Friday morning I began calling around trying to get her in to see an opthamologist. The longer the day went on, the more she was squinting, and I grew more alarmed. Most offices had a month long waiting list and suggested we take her to Children's for evaluation if I was concerned something acute was going on. By the grace of God one the best pediatric opthamologists in the city agreed to stay late and see her Friday.
Dr. O'Malley said Belle's condition (amblyopia) is fairly common, but her case was truly unique in that he'd never seen a child this young be able to discern and articulate any difficulty or change in vision. Usually this condition is picked up incidently during a vision exam much later in life when the condition is untreatable.
So he said Belle was born with a mis-matched set of eyes. One is slightly larger than the other, only by a few milimeters, but enough to cause her eyes to send different images to her brain. In order to make sense of the images, her brain has learned to shut out the weaker of the two, and thus not use her left eye. While there is nothing wrong with the eye, the simple lack of use causes the eye to grow weak. Apparently, age 6 months to 6 years old is the most critical time for the visual pathways in the brain to develop.
So the great news is that we found this so early; the doctor said he was confident her vision would be fully restored to that eye. Its just a matter of training her brain to receive and interpret images from that eye. He said that many times when this is found in a 5 or 6 year old, the visual pathways are set and its difficult to restore, but with her being so young, he was very optimistic.
We'll be picking out a pair of glasses for her to wear that will strengthen the vision in her left eye; in two months we'll return to the opthamologist. At that time if her vision is improved, we'll adjust the script on her glasses and continue. If not, we'll implement the use of the patch over her strong eye for several hours a day to cause her weak eye to begin to focus.
While all of this is really a blessing to have found so young, it has been emotionally tearing me up as a mommy. I'm sure the sleep deprivation and post-partum hormones don't help, but I have not been able to eat or sleep much since Thursday. Last night was a little better. I went to bed early and Aron didn't wake me up when Judah needed to eat at 1 and 2:30 (he thawed some breastmilk and sat up with him even though he had to be up at 6:00 for worship...what a selfless man!) Today I received some encouragement and perspective at church, so I don't feel quite as sick over the whole ordeal.
It just feels as if it has been one thing after another for several weeks now, and I'm feeling a little overwhelmed by it all. We four could use your prayers for sure. Prayer for peace, prayer for Belle to adjust to wearing her new 'magic glasses', prayer for healing of her eyes, prayer for us during this transition. There is nothing worse than watching your baby suffer or endure sickness. Watching her squint to focus is tearing Aron and I up. We just keep looking at each other with pitiful looks longing to help our girl.
It'll probably be a week before her glasses come in. I can't wait to get her eye on the road to recovery.
Coveting your prayers...
ejk
5 comments:
I had this same thing as a child with my eyes. They found it when I was about 6. I wore the patch for a few months over my right eye to strengthen my left. My mom used to put cute little stickers on the patch or draw a picture on it. It was alot of fun for me! I only have happy memories of the whole ordeal and don't remember any kind of "suffering" whatsoever over not being able to see well. My left eye was nearly blind when they discovered it and it quickly was able to be somewhat normal. I've always had to wear glasses since then or contacts.
It's great you found it in her so young. I will be praying she will return to 20/20 vision!!
Don't feel too bad for her though. It's completely normal to her as she knows of no other thing than who she is right now.
For His glory,
Kristee
Erica, you have such a sweet, tender heart - one of the reasons you are such a great mommy. Another thing that makes you a FABULOUS mommy is your strength - of charachter, of faith and of love. Everything will be fine. Stay strong and hold onto Him. Belle is gonna look A-STINKIN-DORABLE in her magic glasses and then she will be just fine. She has her mama's strength after all!!!
Praying for you, Erica, that you would be able to rest in peace and joy with your family, not in worry or stress. And for Belle to fall in love with her new glasses and have excitement to wear them! For Judah and his growth and safety and development. And for Aron, to know how best to support you all, to lead you, and for his own strength and rest in this time, too. We love you! You are an exceptional mother, and you are doing wonderfully!!
i think everything you are feeling is completely legitimate, normal and expected for a mommy. it's hard to see our babies have to go through anything "out of the norm"...we'll always want the best for them, for them to be perfectly healthy and not have any tough obstacles to overcome, (to be teased, "different", etc.)...but those things do help shape us, build strength, and increase our faith and God can be glorified through it all.
i remember when my niece, natalie, first got her glasses (my sister struggled and felt a lot of the same feelings you feel)...but it was short-lived and natalie is darling in her glasses and happier that she can see better.
you certainly have a lot going on lately. gladly praying for you four!
We are praising God that you discovered Belle's vision issue so quickly and it is treatable.
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