Sunday, December 21, 2014

1, 2, 3, 4, 5

I started this post earlier in the week...I think I needed a few days in between everything before I could finish it...rationally.

On Tuesday, Little Dorrit was scheduled to have eye surgery so I drove back up to St. Louis on Monday to be there for it. Her upcoming eye surgery had been explained to us many times and she'd already had an eye exam under general anesthesia when her Broviac and G-button were placed. So, I was a little confused when the doctor who was going to be doing the eye surgery talked about doing another exam on Tuesday and used the word "if" we do the surgery. Hadn't they already done the exam to determine that the eye surgery was needed? Apparently, a different doctor performed the previous exam than the one who would be doing the surgery. This new ophthalmologist, who was a retina specialist, told me that he would do another exam under anesthesia and then come see me in the OR waiting room to let me know if they needed to do the vitrectomy, which they would be able to do right away. For the past three months, we've been told a vitrectomy would clear up the blood in her right eye allowing her to see out of that eye so I had no reason to think otherwise. She just hasn't been well enough to go under general anesthesia until these last few weeks.

About 20-30 minutes after Little Dorrit was taken back to the OR, I saw the doctor quickly walk out into the waiting room searching for me. I called out his name and he asked if we could find a place to talk. My heart sank. We found an empty corner in the OR waiting room where he then drew a diagram and explained to me his theory of what was happening with Little Dorrit's eye. Here is what he drew with some of my notes written in:
Instead of a just a hemorrhage in Little Dorrit's right eye, he believes that during the first week of her life, a blood clot formed blocking the blood flow to her right eye, much like what happened with the three toes on her left foot. Because of the blood clot, the blood flow was cut off to her eye. Since then, scar tissue and abnormal blood vessels have formed in her right eye and her retina is now detached and misshapen. I sat there listening, feeling numb, since this was not at all what I had expected to hear - that she will never be able to see out of her right eye and will probably eventually need to have it removed and replaced with a glass eye. The surgeon told me that he could attempt the surgery, but the chances he would be successful were very low and that if it were his own child, he would not do the surgery. At this point, I didn't really know what to do and couldn't talk to my husband about it because he was back in Arkansas literally at the very moment in the middle of giving a final exam. So, I told the surgeon not to do the surgery. Why put Little Dorrit through unnecessary trauma if the surgeon does not even think he can be successful? Now that I write this, I'm unclear whether the surgery he was referring to was the vitrectomy or a surgery to reattach her retina.

As odd as this may sound, since Tuesday, I feel like I have experienced all of the five stages of grief over the loss of her eye. You think, it's an eye, and it's not even my own eye, but I still grieved that my daughter will have one more thing to struggle with. I felt the same way about her toes when we found out she would lose the three toes on her left foot. The five stages in a few days:
  1. At first, I felt numb when the surgeon was explaining his theory about the blood clot.
  2. The bargaining phase of grief is not exactly what I thought it would be but WebMD explains exactly what I felt:
    • This stage of grief may be marked by persistent thoughts about what "could have been done" to prevent the death or loss. Some people become obsessed with thinking about specific ways things could have been done differently to save the person's life or prevent the loss. If this stage of grief isn't dealt with and resolved, the person may live with intense feelings of guilt or anger that can interfere with the healing process.
    • Throughout this whole experience, it's been hard not to feel guilt, guilt, guilt about feeling that I did this to my child and wondering what more I could have done to prevent this or even how we could have been more prepared for her birth. In the instance with her eye, I keep wondering if the doctor had operated earlier then would this have fixed the problem?
  3. Depression: How can you not be incredibly sad when something like this happens? 
  4. Of course, I felt angry, mostly at the doctors, that no one had mentioned she might have a blood clot in her eye instead of a hemorrhage. Also, there are discrepancies between her two eye exams. In the first one, her retina wasn't detached and now it is. What is that about? I'm sure I just need more education on this to understand it better, but it's hard not to think, if they had acted sooner, then perhaps her eye could have been saved.
  5. And acceptance...If this is another challenge she will have to face, then we will face it together and she will be fine. However, I am working on getting a second opinion on this, not because I don't trust the doctors who examined her, but because I feel like I need to do everything in my power to find out if the vision in her right eye is salvageable at all. Also, if any of our friends working at the Moran Eye Center in UT have any suggestions or opinions on this (or know someone who might), I'd love to hear it.
So, now it's an eye and some toes that she is losing, but Little Dorrit is still alive and kicking, ha! literally - she really loves to kick her little legs. She is three months old and has pulled through so much already. And, it is looking like we will actually be able to take her home someday.


Jani said...

This girl is a fighter! What a roller coaster for you, and how frustrating to be kept out of the loop of understanding over her exam/surgery. I don't blame you on wanting a second opinion, either, but whatever challenges your sweet girl will have, she seems to be able to fight her way back. What a wonderful girl.

Anonymous said...

My heart breaks for you with each new development. It certainly forces you (and all of us) to put things into perspective. You are so very, very brave. That sweet baby girl couldn't have a better Mother or roll model. Continuing to send love your way. -Caley

Katie @SwimBikeQuilt said...

I wish I had something comforting or profound to say. I don't. She is a fighter and so are you Guys. But I wish you didn't have to be. Hugs.

Jenny said...
This comment has been removed by the author.
Jenny said...

I'm sad to hear about the eye problems, but I agree with what everyone else is saying. She's a fighter and has the best parents in the world with you and Ed. Hugs and love to all of you from all of us in S.F.

Kel said...

Has our mutual friend Steve contacted you? He has the training and experience and empathy to give great advice and support. If you don't have his email, let me know, and I will get you in touch with him.