My 24-weeker was just diagnosed with ROP stage I to II zone II. I'm a little irritated because he had his eye exam on 10/24 and nobody told me that they had diagnosed ROP. I didn't find out until yesterday during rounds when they said the eye doctor would be following up today. His first two exams were fine and i wasn't even aware of the one on 10/24. I wanted to know why the eye doc hadn't talked to us and jonathan's neo said it was good that she hadn't talked to us yet, that meant she doesn't think he'll need surgery or that it's not bad enough to be worried. While i understand his neo was trying to make me feel better, it wasn't really the point of how bad the ROP is or not. It's the fact that i want to know about every aspect of my son's care, I am his mother and advocate and i need to be aware of all aspects of his care...Sigh. Has anyone else out there had experience with ROP at this stage ?
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ROP
- By jonathan24weeker
- Posted November 4, 2009 at 9:34 am · 11 replies
- In In the NICU/PICU
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- By dawnene
- Posted November 4, 2009 at 10:12 am
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HI, I am sorry about the lack of communication. That can be so frustrating.
My son was diagnosed with ROP in August. He went from immature to Stage 2 Zone 2 in 2 weeks. He then progressed to Stage 3 Zone 2. We watched his eyes every week & he either held stable or got better. Now as of last Thursday he has regressed to Stage 1. This is great news, he did not need laser surgery. His ROP delayed a reattachment surgery & kept him in the hospital about a month longer :( Good luck. Also, I found out when the eye doctor did her exams (friday mornings for us) & I was able to be there every Friday. She got so that she would wait to do Zach's eye exam until I was there. She even found me one day while I was pumping because she said it felt wierd not to talk to me directly. Just reverbalize how involved you want to be.
- By jturner1228
- Posted November 4, 2009 at 10:19 am
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We honestly never talked to the optho while our 26 weeker was in the NICU. We usually got the info from his nurses because we couldn't be there when the optho came. Anyway, DS had Stage 2 borderline zone 3 for a while. It did regress but not fully until after he came home. We had to go back every few weeks after he came home to see the optho and check to make sure it didn't progress further.
I do understand your frustration though. Dawnene obviously had a great optho. Opthos at the hospitals we were at came on certain days but couldn't give you an exact time because it just depended on how long it took them to do rounds thru the whole unit and they would talk to you if you were there but they wouldn't wait or call you afterwards. They are extremely busy though so I did understand that. Just voice your thoughts and concerns to your neo and charge nurse.
- By violetsmom
- Posted November 4, 2009 at 10:43 am
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That is completely unacceptable in my opinion, and your neo is making lame excuses. It's not the job of the eye doctor to keep you informed. They come into the NICU, do the exams, and leave. It's the responsibility of the nurse and neo to keep the parents informed about what procedures they do on YOUR baby. I would be just as upset as you, if not worse. I hope todays eye exam goes well and things look better. Violet went from stage 1 to 3 in one week and had the surgery the day after the exam. It was a breeze and she recovered nicely. I no longer had to worry about ROP regressing because it was taken care of. Good luck.
- By katek
- Posted November 4, 2009 at 2:33 pm
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Parents should be given an update on all findings in regards to baby's health. Even if the eye doctor hadn't found a thing, the nurse should have told you as soon as you came to visit that Dr. X saw your son and found Y (or didn't find Y).
The ophthalmologist detected ROP Stage I when our son was about 36 weeks or so (gestational age). By a couple days short of his due date, it was almost at ROP Stage III. Given the condensed progression of it, they decided to move swiftly and do the laser "procedure." I was told several times that it was *not* a "surgery" (definitional debate has to do with the fact that there is no cutting in the "procedure"). He did have to be given anesthsia, but he came out of everything just fine.
We just learned yesterday that he will need glasses. His right eye is becoming more nearsighted than the left and the doctor wants to make sure that the brain is using both eyes equally. He is now 2.5 years old.
Best wishes.
- By caffeine-T
- Posted November 4, 2009 at 3:28 pm
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My twins both had ROP, and both had laser eye surgery for it. My son's eyes were worse, but both their surgeries were over a year ago, and his eyes are fine as of October's check up. My daughter is near-sighted, and needs glasses.
- By jonathan24weeker
- Posted November 4, 2009 at 6:28 pm
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We saw the opthamologist today and were present for his exam. She was more than a little upset with the NICU staff for not explaining anything to us after the last procedure. Jonathan's ROP has progressed to Stage III Zone II with Plus Disease, and laser surgery has been scheduled for Friday. They said he will go under general anethesia and will have to put back on a ventilator for the procedure. His primary nurse said they will wean him back to CPAP as fast as he will tolerate it.
I'm a bit of a mess, even though I've read and researched and i'm aware of preemie complications, it still hurts to hear them say my baby has something wrong with him. It's encouraging to read about so many positive results of the laser surgery. Thank you.
- By katek
- Posted November 4, 2009 at 7:14 pm
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I am so sorry that you and your son are having to go through this. I remember very distinctly how I felt when I was told that the "procedure" was needed ASAP. I cried a lot. Just one more thing to add to an already heavy pile of worries. I remember saying to the head neonatalogist that it was difficult to never get the chance to feel that we'd actually turned a corner.
And none of it is fair. Kids shouldn't have to go through such challenges.
I'm pretty sure that they put just about all kids on the vent for the procedure. Remember that's not a "set back"; it is just standard protocol.
Sending positive thoughts and prayers your way. Please keep us posted.
- By babygirls24n2
- Posted November 4, 2009 at 10:21 pm
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The communication thing is frustrating - i've learned to "grill" our nurses or the neo when I come in each day - and to be there as much as possible.
Our daughter had her laser surgery for ROP almost 3 weeks ago and it appears that it was successful. They do put all of the little ones back on the vent for the procedure because they can take over breathing while giving the pain medications and anesthesia. Sometimes that little break gives the little lungs enough of a boost to come off of the vent to a better status than before.
Its hard to hear that there is 'yet another hurdle', but you'll get through it, and I guess for me, I just have to keep reminding myself that while this isn't any fun - I am just so lucky that she's alive!!
hope it goes well for you!
- By violetsmom
- Posted November 5, 2009 at 1:21 am
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I was so nervous about Violet being put back on the vent for the "procedure". The staff was unsure whether she would come back on the vent or extabation would occur in the operating room. She had no problems with extabation and she came back to her bed on room air! Violet had the plus disease as well and it only took 1.5 months of doctor visits for the ROP to be GONE! Good luck
- By Myangle
- Posted November 5, 2009 at 1:49 am
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take a deap breath it's gone be ok my daughter was born at 26wks with Rop Stage I in the rt and stage 2 in the left and when she came home at 4 mos. her eyes were unfocused and drifting everywhere but they thought her vision was fine so she didnt have to have laser surgery but after she turned 1 she had eye muscle surgery where they cut the muscle and pull the eye tighter. Sounds gross right, yea it was her eyes were blood shot red she looked so scary and in so much pain but she wasn't , and the upside is there were only red for about 3 or 4 days she only took pain meds for 2 days and she was fine playing normally.
So in conclusion I just wanted to say dnt worry cause the surgery isn't that bad and it's going to be very beneficial for him and if he only has to have laser surgery thats better because it's a little less invasive so the healing time may be quicker. either way he will be fine. Good Luck
- By rocketboy
- Posted November 5, 2009 at 10:44 pm
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My 25 weeker had stage 1/2 ROP in the NICU. After he was released the ROP went away on its own with no treatment. It was a slow progression. His left eye developed faster and the ROP went away. Then the ROP in the right eye went away. Then the opth. was a little concerned that his right eye wasn't developed. After another couple weeks both eyes were fully developed and ROP free.
A little warning...don't watch the eye exam! I didn't personally watch it, but the mom next to me watched her son's and she said it was horrible. The retractors they used to view the eye are not pleasant. Good luck!
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