20/400 in the right eye
20/100 in the left eye
I was stunned. I had never expected her left eye to be that impaired. We are counting on her left eye to be strong and healthy so that if we never attained good vision with the right, well, we could count on the left. Now her "sound" eye (as the doc calls it) isn't seeming so sound.
Even the doc was surprised, which sparked great anxiety in me. I didn't understand how my baby's vision is so terrible but she runs around like a maniac!
To make matters worse, we had a terrible incident with her on Sunday. Jed accidentally ran into her and she fell straight back onto her head. She immediately started screaming, but when I picked her up, she stopped. I figured she had calmed down, but when I looked at her, her head was tilted back and she wasn't breathing. Her eyes rolled back in her head and she went limp. James started screaming her name and I froze. After blowing in her face and even puffing air into her mouth, she started screaming. She cried and cried, but was lethargic and sleepy. So we immediately went to the ER. Of course, by the time we got there, she was acting completely normal. Docs said that she probably was so stunned that she tried to take a long, deep inhale but got "stuck" and held her breath. She didn't have a concussion or anything so we came home. It was the scariest moment of my life. Scarier than handing over my baby to a surgeon, scarier than learning about phpv and cataracts, scarier than anything I have ever experienced. I keep seeing her image in my face and it tears me up every time. I thought I was going to lose my baby in that moment, and it was too much. I couldn't take it.
Well, that incident, on top of the new vision information has set my anxiety on edge. I am by nature an anxious person and always feel better if I can "do" something or "fix" it. Well, I can't fix this and it makes me crazy. I'm walking around with a ball of nerves in my stomach feeling like I am constantly filled with adrenalin. It is a horrible feeling and I'm not sure what to do (short of becoming a zombie on a ton of anxiety meds!) So I text some imoms and realize I'm not alone. Read some other blogs and know that other families are facing the same challenges. Talk to my husband and my mom and accept that I am a great mom that is taking care of her baby in the best way she can.
So, after emails with the doc, contacting First Steps about more vision services, and lots of tears - I have done all I can. We are seeing the doc Oct. 2nd (perhaps earlier - he told me to call his nurse to get squeezed in) and he is going to do the Cardiff test himself to make sure the numbers are right. And we will go from there. He is also going to go over the results with the surgeon to see if/when we should do the strabismus surgery.
There is a bit of good news though. The fabulous nurse, Tracy, from the Eye Clinic called and said that Julia's back up contact was in. The company sent a three pack (so we have three back ups!) and the cost is only 90 dollars for all three! I don't know if this is an apology for messing up so many lenses or their normal bulk price, but it is great. I can't figure out how one lens is 150 and three are 90, but whatever. Maybe they made a few extra and since they are custom and don't really sell that size they are discounting it. Who cares - I get cheaper lenses! But wait, it gets better...
The doc emailed me and he spoke with our insurance and they are approving the lens! So I am getting three lenses at no cost. That made my day. Gave me just enough boost to keep going. So we will get up tomorrow, put the contact in, collect our patches, and go about our day. One day, one patch, one contact at a time...we will do this.
Oh girl, you know we are here for you. I am so amazed at the way you are reaching out, letting it out and looking at the positives. You ARE doing all you can do. And that is enough. Julia will be who she is meant to be and we will all LOVE her anyway!!!
ReplyDeleteI am so glad everything worked out with the accident. It sounds so scary and I am dreading the day when something like that happens to us. It's like a rite of passage in parenthood?! Certainly puts it all back into perspective!
If you want to be slightly jealous of Easton's strabismus surgery... then I am totally and completely jealous of your insurance coverage on contact lenses!!! ;)
You are doing awesome!! There are positives, sometimes they are just harder to see. (Did not really intend that pun, even though I think all puns are intended? Anyway...) bad news stinks, especially when it you had prepared yourself for the worse case situation and the news is worse than you thought. The good news is that you caught it and are doing everything you can to fix it! How many kids out there don't have a chance because their eye issues weren't caught soon enough? Scary stuff.
ReplyDeleteAs for the incident, that feeling will never fully leave you. Anderson had a pediatric seizure over a year ago and I will never forget the fear the gripped my heart in those minutes. Surreal. Does give a little perspective, though, to other things.
Hang in there!
I am so sorry that you have to go through that anxiety. An imom here at home has the same issue with her little one....that the sound eye needs some help. But really, to look at her daughter you would have no idea!! Stay strong you are doing a fantastic job!!
ReplyDeleteps am I missing out on fun imom texts???? lol
Not sure if they are "fun" but definitely supportive and witty. Email me at Kittynoah@hotmail.com and I'll put your number in my phone. You can be Karla Imom, right along with Amanda Imom and Darcie Imom. :)
DeleteI wrote a comment/post :) on my phone and thought it had posted before my phone died. Oh well, here goes again.
ReplyDeleteI am sorry to hear that her normal eye is weaker than you thought. That just SUCKS. I hope that with normal correction it can see normally. I think that she will look just adorable in glasses if that is what they end up doing for her.
Also, that scare is something that will never leave you. I am so glad that she is alright. That look is so scary. We had a scare with Blake. When he was 2 and 1/2 days old, he had seizures. His parathyroid gland that controls the calcium in his blood wasn't working properly. He had "ran out" of the calcium that I had provided. All muscles need calcium to work. His lungs and heart and digestive system were shutting down. I called the doctor after the first seizure. He had stopped breathing. She told me that babies sometimes kick like that and when they cry really hard they can look like the stop breathing. Just watch him through the night. I did. He got weaker and weaker. Even the seizures were slower spasms. He stopped breathing quite a few times with the seizures that night. Every time he stopped, I stopped breathing as well. The fear is still there when I think about this. How close did we come to losing him that night? I took him in the next morning. He seized in the waiting room. He seized in the doctor's arms. That is when she believed me. We were sent by ambulance to the Children's Hospital. He is fine now. The gland started working eventually. All he needed was calcium and Vitamin D. It really does give perspective, Scary moments like this.
I think that this comment is too long again. :) But I have more to say.
That is awesome news about the contacts. I always loved having a backup. But three that is awesome, and free at that. I am so happy that they finally see the necessity. Insurance companies... insert big eye roll here. They drive me crazy. Glad they came through for you.
The worry is constant. It does subside. It goes to a place in the back. At least, it did for me. I still get worked up from time to time. But I know that it is not the worst thing that could happen to him. Although that is not what I want to hear from other people. I had to come to this conclusion on my own for it to make sense. So be nervous, be angry, and know that it is ok. It is normal.
Much love... She is a doll baby. I love her little chunky cheeks.
I echo everything those smart iMoms ahead of me said. You are strong and amazing and such a great mom!
ReplyDeleteI will remain hopeful for her Vision in both eyes. She is perfect and so stinking cute!!!
As for worry? Yikes- its built into our mom genes. Parenting is hard!! Glad is turned out fine! Scary stuff.
This anxiety stuff must be in the air... But we are here for you!!!❤