ROP stories

HEmery

Let's hear yours.

kck329

Ours is pretty boring. DD was evaluated every other week for the whole NICU stay. She started with a level 2 and went down from there. By the time we were discharged, she didn't need to be seen again. But we were lucky in that she wasn't on a high rate of O2 for very long.

BTW the eye doctor at TCH is amazing. How is Walker doing this week?

AlwaysSunny925

Well, my story is not quite complete, but I'll tell you where we are with this.  Once the boys started getting eye exams regularly we were told Ryan had abnormal vessel growth in his left eye and Aiden just had immature growth.  Fast forward to now and we are told Ryan has abnormal growth that has slowly progressed in both eyes and has a 50/50 chance of needing laser surgery this week.  Waiting for a follow up exam tomorrow.  Also, Aiden has a 20-30% chance of needed surgery.

From what the doctor said, both boys are below the threshold they use when deciding whether surgery is necessary or not.  Hoping for no surgery since we already have 4 under our belt!

I asked this before and a few moms answered.  Let me see if I can find the post.

ETA:  Here it is: https://community.thebump.com/cs/ks/forums/thread/60654664.aspx

 

CLAYLIOVER

Abby Stage 1- no intervention/ resolved before we left the NICU

Addy Stage 3 Zone 2- corrected with laser eye surgery. Had eye appts every 3 months. She just had her last one. She is having no concerns as of right now. We will go back once a year for a checkup.

HEmery

Walker has ROP and we have opted to NOT do the laser surgery and do injections in the eyes of Avastin.

  My poor, poor baby.

AlwaysSunny925

AlwaysSunny925:

Well, my story is not quite complete, but I'll tell you where we are with this.  Once the boys started getting eye exams regularly we were told Ryan had abnormal vessel growth in his left eye and Aiden just had immature growth.  Fast forward to now and we are told Ryan has abnormal growth that has slowly progressed in both eyes and has a 50/50 chance of needing laser surgery this week.  Waiting for a follow up exam tomorrow.  Also, Aiden has a 20-30% chance of needed surgery.

From what the doctor said, both boys are below the threshold they use when deciding whether surgery is necessary or not.  Hoping for no surgery since we already have 4 under our belt!

I asked this before and a few moms answered.  Let me see if I can find the post.

ETA:  Here it is: https://community.thebump.com/cs/ks/forums/thread/60654664.aspx

 

So an update from yesterday's post.  Ryan is actually getting the laser surgery done today. 

I am curious how the injections work for Walker.  Please keep us updated!

irishdo

My little guy was born at 24.6 weeks.  He had weekly eye exams starting around 28/30 weeks.  He hung at Stage 2 for awhile and was just watched.  At around 36 weeks gestation he was found to have progressed to Stage 3 Zone 2 with plus disease.  That was on a Wed and he had laser surgery that Friday.  He did fine with the surgery.  He had f/u in the NICU and 2 after shortly after d/c.  I changed his ophthomologist due to location and he went around his first birthday.  The Dr said that other than the scars on his retina his eyes looked great.  We will go yearly for f/u.

Good Luck!

ybooty

My twins were born at 28 weeks.  B had ROP this time last year one week after he was discharged.  It was before Avastin was widely used by everyone.  Our doctor was one of the drs who pioneered it.  After she did the study for the medical journal and saw how great it worked she refused to do anymore laser eye surgery. It worked wonders and I was so glad he didnt have to be readmitted and put under the vent again a week after discharge.  The ROP is completely gone now.  Good Luck!