I am feeling lost. Afloat. Adrift. The highs and lows are taking their toll and I am feeling defeated.
Yesterday we saw the eye doc and got a new contact. This custom made piece of silcone was carefully placed into Julia's eye. The doc said it looked great. I said it looked great. Even the fellow working with the doc said it looked great. This is the 4th try at getting a contact to fit her eye. Last time the doc ordered a contact that is flatter. It didn't stay in (in fact, we lost it at church last Sunday. Imagine me, my mom, and my dad all crawling around on the floor of the sanctuary with flashlights trying to find a contact. Yep - that was us.) So this time he ordered one that is bigger. 12.5 mm to be exact. An adult usually wears a contact that is 14 mm. Julia started at 11.3. 12.5 is usually the size contact an 18 month old would wear and Julia is only 7 months.
I was on top of the world yesterday. I was convinced this contact would stay in. It was SO big and was difficult to get in. So I reasoned that it would be difficult to fall out. I was excited to start patching regularly again (even though patch time has been increased by one hour). It didn't phase me that the doc wants to check her pressures in 2 weeks - I was just so happy to have a contact that would stay in!
So today we patched. And boy was she crabby! She is teething and drooling everywhere. We actually went through two patches because of her drool!
I wanted to enjoy the day so we went to the park. Julia sat on a blanket in the shade and then I carried her around the playground a bit. She seemed to enjoy it.
Then we went to McDonald's so Jed could have a happy meal. It was chaotic, but fun.
Last stop of the day was Costco (Jed needed diapers). As I am pushing the cart into Costco, I figured I would check her contact. I swore I checked at the park and it was there. But when I looked down - it was gone. I double checked - yep, gone. And I lost it. I cried. I called my mom and sobbed. People were walking past me by the doors to Costco and looking at the crazy lady losing it on the phone.
I felt like a failure. Why didn't I check more often? Why had I been so sure of myself? I was such an idiot - just assuming this one would stay in.
And it isn't even the money. Don't get me wrong, it is nerve wracking to think that at some point insurance will probably not pay for these lost lenses and we will be paying 150 dollars apiece. But I don't care about the money. I care about my daughter's vision. And right now she is not wearing a contact on a regular basis and she is not patching on a regular basis. Which means her brain is not connecting with her eye on a regular basis.
Adrift...not sure what to do or where to go. I've thought about a second opinion from another eye doc - but I love our PO. He is wonderful. And I don't know that it is him that is the problem. I know that because of the PHPV, Julia's eye is not shaped normally.
I've thought of glasses - but she won't keep them on and I really don't think she can see out of them. It is like looking through a little magnifying glass. And honestly, they really are not best practice for her situation. We are going to attempt to keep them on her to at least have patch time for the time being.
So I guess we try again. So another contact has to be ordered, made and shipped. Which means it is another 10 days or so before we get it. And hope/pray that it stays in.
Her eye is watering and she is fussy. I think she is teething, but I worry that it is more than that. Doc is concerned about the eye watering and wants to check her pressures at her next appointment in 2 weeks. (For those of you that are not familiar with cataracts - because of the surgery and condition that Julia has she is at high risk for glaucoma. Checking her eye pressures will tell us if she is developing this as well). I am thinking if the fussiness and eye watering continues I may call and try to get in earlier just to have peace of mind.
So I am feeling down, low, lost, afraid, nervous and scared. I am scared. I am scared for my little girl. It is hard feeling so helpless. I wish I had answers and could just fix everything. I wish I could see the future and see that everything turns out okay.
Oh my poor dear fellow mama....
ReplyDeleteI remember those days of constant, incessant contact lens checks. It was exhausting, emotionally, financially. It felt so unfair. I hated seeing mama's with infants without issues. It broke my heart. And now it breaks my heart to read your post. Don't feel down. You are doing the very best you can for your precious little girl. One day she will thank you. One day these moments will be a blur and you will laugh about all the time spent looking for a chunk of plastic. We are nowhere near that but we are much closer than when Nicole was Julia's age. Once she starts running around your place you will forget all the craziness (ok not totally). Julia will be just fine. She has a wonderful mom take good good care of her. Hopefully things will turn around soon with that lens of hers. In the meantime we are praying for you guys!
My heart is so heavy for you right now. I totally understand that nothing else matters except the chance, the hope, that the vision can be saved. It is such an awful feeling. You are still at such an early phase of the "THE EYE" & it is the hardest one for sure. Almost 18 months later, I am still worried/upset/overwhelmed, but it is so much better. IT WILL GET EASIER!! I promise, promise, promise. Hang in there. But, it's ok to be upset, too.
ReplyDeleteA few things...
1. Get a second opinion. Even if you love your PO, it can't hurt. It just can't hurt. Even if it does nothing but make you not question it. We got a second opinion & it has completely changed our course. Just a thought.
2. I know this doesn't help and I've told you this before, but Anderson was 11 months old before we even started patching and 13 months before he had surgery! So, you are already ahead of us in terms of time, even if you aren't patching as consistently as you want.
3. You are awesome. You love her. Love doesn't really describe it, I know. It's so much more. And that is what is going to make this ok in the end. It just will.
I hear you Laura, I hear you on all of it. I totally know the feeling of letting "the highs" make your head spin so that once "the lows" hit, you blame yourself for being in such denial. I tried to get to a point where I wouldn't let the highs or the lows phase me but honestly that's an impossible place to reach. I feel like nothing I say will really help right now, I am sure time feels like it's moving very slowly. Try to keep in mind that you ARE doing the best and all that you can and that is all you can do. That and give it time. Keep loving her, Keep loving Jed, and Keep loving your summer. You will look back at this one day and realize you ARE doing it, you will get through this.
ReplyDelete