Today was a very emotional day for Aimee and I. We went up to visit with Kayleigh in the early afternoon and had a wonderful visit. We were able to hold her for quite some time and she only had a few brady's or desats all day. I can tell she is so much more comfortable than the past couple days.
After watching the video yesterday about the ROP surgery that is going to take place tomorrow, we felt more comfortable about what is going to take place. No one wants their child to have to go through surgery, but I felt very confident in this procedure as they have been doing it for a very long time and it is very common amongst preemies.
As we were about to head out for the night, the doctor on call came in to talk with us about Kayleigh's unique case of ROP. He mentioned that it was quite weird that Kayleigh went from a stage 1 to a stage 3 in only a week. When dealing with ROP, there are 3 zones that can be effected and zone 1 is the worse sector as it can cause complete blindness or central vision blindness. He told us Kayleigh's issue was in this zone 1 and whether they do the surgery or not, she is very likely to go blind. Our hearts dropped and tears filled up our eyes. He kept going and told us that he has never seen a rapid progression like this and he was truly heartfelt for our situation. He was dumbfounded on how she has been doing so well in all other areas, that her eyes would be the one thing that failed her. The doctor told us that even with the surgery to try and repair the problem, the retina is like saran wrap that could and would most likely detach from the eye very easily. We have a high risk chance of this happening, but if we don't do the surgery, there is an even higher risk of her going blind. It is a lose/lose situation for us.
We were at a loss of words. We left the NICU tonight in such a shocked state of mind that all we could think about was how we would raise this child who would be blind. We thought of all the things you would never think about unless you were in this situation. If you really sit down and think about it, it will blow your mind on how much a person will miss out without their eye sight. We thought about how she would not ever see the ocean and fireworks, some of our favorite things to do. We would have to be with her 100% of the time and learn to trust others who will be as attentive. Aimee and I sat down for dinner and what really hit home hard was that today and tomorrow before her surgery could be the last time she would ever see us.
So as the evening went on, we were suppose to get a call from the doctor who would be performing the surgery and we would be able to ask more questions. One thing we were anxious to hear was this doctors statistics. She called us around 8:30 and we spoke to her for about a half an hour. She told us all about the procedure and then we started to ask her several questions. First off, we were quickly shocked to hear that she qualified Kayleigh to be more in the Zone 2, not Zone 1 and that her Stage 3 was considered Mild, not Major. This was starting to get a little frustrating to me since we were told earlier that it was mostly in Zone 1 and a Major case. So we kept on asking questions and the doctor told us she has been doing this surgery for 17 years and she has only had 5 individual eyes go blind and four of them were on two children. Besides going blind, there are possibilities of cataracts or hemorrhages in the eye, but she has only had a few cases of these too in the 17 years in the field. WHEEEEWWW! Can someone please tell me what God is trying to teach us here? It must be patience, because right now I am lacking a lot of it.
So tomorrow at 2:30, Kayleigh will be going through surgery. The surgery will take around 4 hours total and she will be immediately put back on the vent and she may start feeds back as soon as 6 hours later. We will not find out for 6 weeks if the surgery was successful because they need to continuously check up on the blood vessels to make sure they are growing past the scar tissued area that was broken apart by the laser. There is a 75% chance she will need glasses by age 6, but we knew she would need them anyways because Aimee and I both have them. So all in all, this professional has made us feel much more comfortable that Kayleigh will not lose her eyesight.
Even though the other doctor was not correct in his diagnosis and we got the worst case scenario, I am almost thankful that it happened. I could throw a hissy fit and call him everything under the sun or confront him about it and make a scene, but I would not be honoring God for the way we should act. I am actually glad it happened because I learned how much we take the smallest things for granted, such as our eyes and what we see. I kept telling Aimee tonight that yes, Kayleigh may never see beautiful things, but she will not see ugly things either. She won't judge things on their exterior beauty or see people different and laugh because they have a disability. She won't be visually exposed to murder or pornography and all the other things that are ruining the minds of our children. What I do know, no matter if she is blind or has perfect vision, by our parenting she will bear the fruit of the spirit, which is love, peace, patience, kindness, goodness, faithfulness, gentleness and self control only because our God is an awesome God. Amen!
Please pray for Kayleigh and the Opthamologist that this surgery will be a success.
The Freemans :)