Surgery

So the ROP discussed earlier was a little incorrectly conveyed to us. We spoke with the ophthalmologist directly, and he indicated that Biggun has ROP in zone 1 at stage one, which isn't a big deal, but because he has plus disease that progressed rapidly, they had to do emergency surgery to prevent total blindness.
To make matters worse, he will lost all his peripheral vision and night vision. He will have 10% of his vision at best if the surgery is completely successful and will undoubtedly be put in glasses to correct near sightedness. We ha to make the decision quickly, because based on the rate of progression, his retina would have likely detached entirely by Saturday.
This is a major setback and extremely disappointing because of the loss of quality of life to Biggun. He will never be a pilot or astronaut, he will have issues seeing danger on a street, and he will likely not be able to drive at night. But this will at least give him a chance to see, and that's the important goal we are trying to achieve now.
Short term, he has to go back on a ventilator and IV, which was poor timing since they anticipated moving him into the intermediate nursery by March and that is not going to happen now since he will need constant observation again. But he's a fighter, so I know if anyone can do it, he can.
One of the nurses we spoke to said she saw ROP surgery numerous times in her twenty years of nursing, but never this particular procedure. That felt a little anxious, but we are hopeful that this doctor is excellent. I googled him, Dr. Darius Moshfeghi, and he is the top ophthalmologist in the US and continues to contribute relevant research to ROP care.

Waiting for Biggun to get out of surgery now. Will keep everyone posted.

Much Love,
Rachel and Joshua

ROP

So we've had a slew of great days with Biggun, and there was even discussion of moving him to an intermediate nursery. Grandma came into town and got to hold him for the first time and his progress was great.
This morning during his eye exam, they found his eyesight deteriorated rapidly and his cornea began to separate from his orbit from an excess growth of cells around the cornea that affect peripheral vision and eventually lead to blindness.
The causes of ROP are prematurity and high intake of oxygen. Because he had both, it's likely that is the cause, but this seemed to blind side his doctor.
On the positive side, Dr. Penn came back on as his attending physician, and she is such a rockstar. She has managed to proactively catch a number of issues and get him taken care of. We are going to have to buy that woman a bouquet of flowers when he finally gets discharged!
Long term, it's likely he'll have excessively poor eyesight that won't allow him to be a candidate for LASIK surgery to resolve, but this will give him the best chance to avoid blindness.
So he will need to go back on a ventilator, and he has to be put back in an isolette (he had graduated TODAY to an open bed), and he will need an IV put in, so this is an unfortunate and significant set back, but he's a fighter and I have no doubt he will overcome it rapidly like he has these last few weeks. They expect significant weight loss and recovery, so please send prayers.

Much Love,
Rachel and Joshua