Thursday, August 16

Surgery Woes

I'm not sure where to begin this blog.
I'm writing all about this so I can avoid re-writing this 1,000 times.

We checked into Riley Children's Hospital at 7:30am this morning (Thursday, August 16th)

Blake's exam and surgery was scheduled for 9:00am
Eli's exam and surgery was scheduled for 10:15am

Blake was taken back right at 9am. It was SO unbelievably hard to hand off my baby boy to some stranger to take him doing god-knows what to him, without being able to see, hold or comfort him.
I cried. Hard.

Blake's exam was finished at 9:40am- they came out and told us they were about to start the eye surgery on Blake's Left eye.
Eli was supposed to go back for his exam at 10:15... 10am came around and Blake was still in surgery, 10:15 came and Blake was still in surgery, 10:45 came and Blake was STILL in surgery.
FINALLY at 11:30, the doctor came out and gave us the report on Blake.

She had gone in to clear our the extra tissue in his Left eye and just could NOT get it. So she tried another area, and she was successful in getting 100% of the tissue that was blocking his drainage system, off

She describes the procedure like;
"If you think of a sink drain, water usually flows right into it and out of the sink, but in the boys' eyes, there is a lot of tissue that is built up on top of their drainage area, which is causing their eye fluid to build up. All of that backed up fluid puts a TON of pressure on their eyes (like an over-blown up beach ball). " --So she was surgically 'scraping' off all of that tissue from their drains.

*Blake in his gown before surgery*

So, Blake's surgery went so well. She seemed very confident that because she was able to get all of the tissue removed, that there is a very slim chance that he will need another surgery on that eye. It should heal well and be much better!
*Blake after surgery*

Blake did get an extra shot of morphine to help with his pain so he was pretty out of it.
He has only eaten 1oz of formula since 2am.

*Eli in his gown before surgery*

Eli went back at 11:30am to get his exam and surgery.
They ended doing surgery on his Right eye.
Once his surgery was over they came back to talk to us.
*Eli after his surgery*

Eli's Right eye was his worst. His optic nerve is 80% damaged.
The front of his eye is pretty scratched up from being so cloudy.

What do you do, how do you react, what do you say..
when the doctor comes in and tells you your baby boy's eyes are so badley damaged already.

After thinking of questions I asked to get ahold of the doctor again..
Does this mean he is 80% blind?
Can he see anything?
Will he go blind in the future?

-No he's not 80% blind, it just effects his peripheral vision. He is still totally capable of seeing. He will not go blind, as long as we keep up on his appointments and get the levels of pressure checked constantly. If we can keep his pressure at a normal level, it shouldn't ever get worse, if anything it could possibly heal a little, just because they are so young.

Eli is clearly worse than Blake.
Blake's eyes are not very bad- bad enough to get the surgery but his optic nerves are  not damaged and he does not have scratching on his eyes.

We will be returning to the hospital for their check up tomorrow and to get their eye patches removed. Then, we go in Tuesday to get their second eye procedure. They will also be doing a thorough exam of their first eye procedure. (if it looks like they need more work done on the first eye again, then they will do more work on that first eye and schedule another time for the second eye.)

This is so hard. The hardest thing I have ever had to deal with.
How do you sit there and listen to a doctor explain how your baby might never have peripheral vision?
Why do our babies have to live with these limitations? Why. Why. Why.

We will continue to stay strong.
Babies are snoozing still.
I plan on waking them up for dinner and putting them back to bed for the night.  They are exhausted.

As am I.

Good Night. <3


  1. I just cannot believe how much these boys look like their it the gown? :)

  2. Thanks for the update! I'm so glad to hear the boys are doing well free their big day! I can't imagine how strong you had to be today! We love you guys and we will be thinking of you lots!

  3. Hey lady, I'll be praying overtime for u, brad and the boys. It is so hard when young children are sick and we are left having to just trust a doctor's skill. My cousin has a daughter with major health issues and as much as it has been painful, I still feel blessed to have her in our lives. You're boys look tough, hang in there Amanda!

  4. Amanda - Our hearts are with your family. I am a twin and we were also born with eye problems. We both had operations on both our eyes, back then they did the surgery on both eyes at once. As I was telling my mom about your trials, she reflected on the similar path we took. Doctors are amazing and children are resilient, they will grow up to be amazing children, with strength you can't imagine. You're lucky to have such family support and the boys are lucky to have you.

  5. Amanda - We have been praying for the boys since we heard. So happy to hear that the surgeries were successful. It is such a blessing that this didn't go any longer undiagnosed! I will start adding their Momma to my prayers as well, I can only imagine how hard all of this is on you. But I know that your boys are going to be just fine, they don't seem to let any thing slow them down! This is part of shaping them into the strong men that God wants them to be someday. Love and Prayers to you and your beautiful family.

  6. So sad to hear about the boys. Praising the Lord for the successful surgery for Blake and praying for healing for Eli. We will be praying for the follow-ups and procedures to come.

    Amber Taube- Paul Taube's wife