Tomorrow marks one year since Ainsley had the third surgery to "fix" her eyes. It's been a long road. You can find more detail by reading past posts labeled ptosis. Here is the story in the smallest nutshell it will fit.
Ainsley was born with mild to moderate ptosis (droopy eyelids).
When she was born she didn't open her eyes right away. For weeks it seemed, but now that I look back at pictures I can see she also spent a LOT of time sleeping. Which makes sense since babies do that, especially when they have a breathing tube down their throat and they are stuck unable to move, in a hospital crib.
The top ophthalmologist at Children's checked her out and he said "Her eyes are fine, Mom"..."the disc to cup ratio is a bit high and blah-de-blah...." Basically, don't worry. What I didn't know is that this is the guy who sees the worst eye problems. So from his perspective if you can see things are good.
I was still worried. I knew her eyes should be more open than they were. (Picture at 1 month old.)
After the the tracheotomy was done she did open them more and I was relieved and yet they still weren't as open as "normal".
But when she wanted to she used her brow to lift her eyelids higher and then her eyes looked fully open. The eye surgeon told us that a Frontalis Sling surgery would make it so her eyes would be fully open all the time and she would appear "normal". Sadly I looked forward to that, not knowing that I should treasure the 9 months I got to see her beautiful eyes this easily because things would get worse, much worse, not better...and in fact would never be this good ever again in her whole life.
Here are pictures so you can see for yourself, and see the progression as we get to where we are now 3 surgeries later.
Here she is at 3 months age before the 1st cranial surgery to the rear part of her skull.
4 months old after that surgery (hence the shaved head).
7 months old.
9 months old.
She went from this.....
......to this overnight. She was 9 months old when this surgery was done.
Here she is the night before the surgery.
To be clear, her eyes weren't perfect before the surgery. Here in this picture she is relaxed and not using her brow at all to lift her lids. This is the amount of ptosis she was born with.
When she used the brow she could get more lift as you can see the difference from comparing this photo to the last. Now we would be thrilled if she had this kind of function.
To be fair the surgeon (who is top in his field and amazing) Ainsley was a really complex case.
This is what he did.
Anyway, back to the eyes. Since pictures can lie, I thought I'd also post some video so you can see how her eyes worked before the surgery. Plus they are cute and fun to see this many years later.
Here she is sitting for the first time at 8 months age.
Here she is teething, age 7 months.
At our post surgery appointments we were told things could improve and to be patient.
A months later she's cute as a bug. But the eyes are still not opening as much, and appear downward slanted.
6 months later at age 15months, when she was smiling her eyes looked pretty much closed.
Using the brow they were better, but let's face it, not great. At this time she'd had hip surgery and is in a spica cast (the first one). Unfortunately this issue with the eyes is only 1 of many health issues.
I research options and talk to surgeons. And try to be patient for her eyes to improve, for her airway to get better and many other things.
Over two years pass and her eyes do not improve. There is a surgery that may help her but the
ophalmological? eye surgeon thinks there isn't enough brow bone.
The surgeon came out of the OR and said he "also" removed some of the length of her eye, essentially shortening the opening of her eye. He removed 4-5 mm of length which in my opinion was too much and it created a pinched appearance. Since I wasn't expecting this I was quite upset about the loss of so many of her beautiful eyelashes. She was quite swollen and it was hard to see her so miserable. Again the doctor said "be patient" and so we waited hoping that it would get better.
One month post tarsal switch.
Two months post tarsal switch.
This procedure was comparatively minor. They opened up the incisions from the past surgery and sewed donor tendon to the levator and then sewed that to the forehead muscles. This would allow her to use her brow to lift the eyelids and would also also raise the lid starting position. We watched and hoped for a miracle. What we got is slow gradual progress which you can see here.
This is really the end of the road for surgery. She does have a little extra eyelid skin which they may remove, but not until she is a teenager. So at this point we are done. At rest her eyelids are pretty closed. But close to a year post-surgery we started to find that she was using the sling more and more to lift her eyelids.
This photo was taken last weekend.
And I also have a recent video so you can see in action how she uses the sling to lift her lids.
There was a time that I felt the droopy lids were having a negative impact on her development. Even though they still look different we've come a long way. I hope she will some day use the slings to open the lids the way she did when she was a baby. But since her lids were surgically altered and her resting eyelid position is lower I know they will never look the same as they did before the surgery that caused the problem. She has started using the sling more and more and I feel like she must be able to see better because of it. Of course she has always been beautiful to us, always will be, and we love her more than words can describe.
That is the story of Ainsley's eyes and why they look the way they look.