Cataracts round 2

After the first surgery, we were so excited to get the second eye done so that Ruby could finally see us!  It's amazing how, even though this is surgery and it's on her eyes, that it seems like no big deal compared to everything else we have been through so far.  It seems like such an easy fix.  We patched Ruby's eye for 5 days and then went in on Wednesday for the right eye.  The right eye was just as great of a surgery as the last.  We had the same anesthesiologist that knew Ruby, which was a good thing. 

When we got  to see her, she was hysterical.  They gave her some Demerol to calm her down (which worked wonders) so she could sleep and feel more comfortable.  She ended up sleeping the rest of the day.  Our Dr. told us that the left eye, even though there were no complications in surgery, had  a lot of pressure behind it, which could develop into glaucoma. I noticed some smogginess to the eye, but also didn't know enough to know it wasn't going to clear up on its own.  He gave us some drops to use (indefinitely), along with all the drops we need to put into her eyes after surgery (holy moly there are a lot) and we need to have the pressure checked on in a month.  Glaucoma occurs in about 50% of kids with congenital cataracts.  I was a super bummed with that news, but am surprised out how common it is for kids with cataracts. It wasn't the easy fix I was looking for.  We have since been back and the right eye is healing well.  We went in on Monday for a follow up and he wanted to see her prescription for glasses, but it was just too soon.  We'll go back in a couple of weeks for that. 

The other morning I was really concerned that Ruby wasn't opening her eyes.  When we went in for the first follow up on the left eye, the Dr. had said that is one of the things he looks for.  I swear, Ruby didn't open her eyes for 12 hours straight.  She finally did, after I said a little prayer asking for the tender mercy I needed to know that something was going right.  I asked him about this and he said, after surgery, their eyes are super sensitive to light...especially the one with the glaucoma.  That makes it even more sensitive.  After noticing, her left eye (with the glaucoma) has a larger pupil than the right...obviously letting in more light.  I wonder if using the drops for a period of time will reduce the size of that.  Also at the appt. the pharmacy called me as I was walking out of the office because they were confused on the drops medications for her eye.  As I was telling the pharmacist that she had surgery on both eyes at separate times, a woman (maybe in her 70's) interrupts me on the phone and says, "did you just say that this baby had cataract surgery!?"  I said yes, and she just said, "OH MY!" and got in the elevator and left! 

Through it all, Ruby is so strong.  She is one tough little girl, who HATES lots of eye drops.  It starts out great and goes downhill from there. I can get the first two in and then she clenches her little eyelids as hard as she possibly can to try to prevent me from getting any more in.  It's kind of funny...but breaks my heart that after all that she has been through, she is starting to realize that this stinks!  I love her so much.  As hard as life is right now, trying to manage time/schedules I couldn't imagine her not in our family.  And I do know, she is going to be the cutest little thing in glasses!  Our neighbor, who is 6 was telling her mom how unfair it was that Ruby was getting glasses...not because she is a baby, but because she is only a baby, and she was 6 and didn't even get to wear glasses yet!  Adorable.

Next week, we see the GI surgeon about a G-tube.  I am a bit nervous for that.  Every time I sit and think about actually doing it, I kind of cringe.  I know it needs to be done, I just wish I knew how long.  I guess it is fairly common among the laryngeal cleft (LC) world that the surgeries to stitch the cleft don't take.  They get better each time and as the child grows, but it is a constant work in progress that doesn't really have a miracle fix.  I am grateful she is gaining weight and growing so much, because that is one of the downfalls of the cleft. I just worry that so much time will pass without her being able to eat by mouth that she will be afraid when/if she'll finally be able to.

This summer was spent going to different Dr.'s 3x a week.  School started this week and we only have 1 appt. and then only 2 next week....so nice to slow that down a bit.  I am hoping with the eyes done and once the g-tube is in, that we'll be able to relax and be normal. :)