Fighting ROP – Plan C: Vitrectomy

We were able to travel with Benjamin down to the operating room waiting area and give him a pep talk and meet with the doctors before he went in for his surgery. He looked extremely cute, especially since he had all the tape off his face and no feeding tube (npo since 5am). He slept the whole way down and only stirred a little as we were fussing with him.

We are really scared about the whole situation though. This surgery is a last-ditch effort. Since his retinas have already begun to detach because of the ROP, without the surgery there is a 100% of losing all vision. But the surgery is extremely invasive and if it is successful will leave him with very poor vision (if any vision at all). What they are doing is called a vitrectomy which allows them to reattach the retina to the back of the eye while removing the scar tissue that is causing the separation. They will also need to remove the lenses (lensectomy) from both eyes – which is permanent.

The surgeon doing the operation is supposedly one of the best, but even he only gave us 50/50 odds of being able to save vision in one or both eyes. We won’t know for over a month if the retinas reattached properly and won’t know for a while more how bad his vision will be if they do reattach. Best case scenario is really poor vision-  as in being legally blind.

It feels a little ridiculous to be wishing and hoping for legal blindness – but it is a million times better than actual blindness. Plus baby glasses are cute – even extremely thick baby glasses.

We are already worried about so many future obstacles Ben will face and knowing he may have to deal with blindness on top of them scares the hell out of us. But I guess we will have to deal with one thing at a time…

For now we are waiting in the lounge – he went into the OR around 4 and the surgery will last 4 hours or so. Might need to get a drink in the meantime (and dinner). We are hoping he won’t need to be intubated for very long after the surgery, but he might take a bit to come down off the anesthesia.

Oh – and not to do a long post without the “good news” part – he is now 5 pounds! And as of tomorrow will be 40 weeks gestational age – Full Term! Happy Supposedtobirthday Benjamin!

Five Pound Ben

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13 thoughts on “Fighting ROP – Plan C: Vitrectomy

  1. Our Prayers are with you. I know we all harp about Ben’s strength but you guys are also very strong and I am a true believer that you are not given more than you can cope with even in your darkest moments.

    Take Care of each other.

  2. Definitely praying for you guys…sending good wishes your way.

  3. Just read your post – praying for God’s peace to be over all 3 of you, and that God will guide the surgeon’s hands. 🙂

  4. Lots of good thoughts coming your way from the dorms. We love all you guys so much and are praying so hard for everything to work out.

  5. I’m saying a prayer for Benjamin and the doctor’s and nurses who care for him. I just recently started following your blog – my daughter was born two months after Ben at 24 weeks, 4 days.

    You certainly have a strong little guy on your hands. He is beautiful as well!

    • Thanks Marcie- Amy and I visited your blog and have you, Veronica and your family in our thoughts too. She seems to be making so much progress!

  6. stay stong. it sounds like he is under such great care. my prediction: the miricle baby wins again.

  7. You all will be in my thoughts and I will be 4ever sending baby Ben Great JuJu vibes for he is so precious and I can understand why you would want any kind of vision cuz some is best and he will look so cute with glasses! My heart beats out to u Ben, u keep rocking baby boy!

  8. Love you all. Thoughts and prayers and positive energy…

  9. Gosh, we love you all. It’s easy to see where Ben gets his resilience . . . Mom and Dad are unbelievably strong. Days and weeks pass so slowly when waiting for such important news. We’re praying for all of you as time snails on . . . and no matter what the outcome of this trial, the three of you will undoubtedly overcome with grace and finess.

    Hugs and love.
    The C-Ks

  10. Hi Joe,

    I’m a friend of your Aunt Gerry’s. She has kept us (my sister and I) informed on Ben’s progress. I had a 2.1oz niece so my sister and I know how you feel everyday. I’m proud to say she is 23 and just graduated college. It is such an up hill climb but one that is so worth it. Know that you and your family are in our prayers. He is beauitful and I wish all of you joy.
    Carol & Andrea

  11. I love love love this photo

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