A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS

Persistent Hyperplastic Primary Vitreous

also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".


Perth, Western Australia

Sunday, July 18, 2010

Surgery day (again) - for parents

I was just thinking, when Joel had his first surgery, I didn't really know what to expect so here's some "tips" that might help you if your baby is having an op.

Take someone with you, especially if it's the first operation. The doctors will tell you so much information at the end of the op, but you will be more concerned with when you get to see your baby you won't take it in. Someone else might remember more.

If you're breastfeeding, take a pump and express.

Take change for parking and money for food. Hospital food is expensive so take more than you think you'll need.

With fasting, try to get to the hospital an hour before you are due to be there. You can feed baby in that hour then do all the paperwork. If the operation is at 3, baby will need to fast (breastmilk) from 12, so try to get there at 11.

Take snacks because if you're hungry during the operation and you don't want to leave to go to the cafe "just in case" you'll regret it in the hours after when you're stuck in recovery.

Take something to do during the operation - download apps to your iphone, take a book, or just ring people on the phone while the operation is happening.

Allow at least 3 hours after the operation before you'll get to leave the hospital.

Have someone make you a meal for that night, especially if you've got other kids. If you can arrange it, meals for at least a week after are a HUGE help especially if bubs takes a while to recover.

Wash bubs hair on the day of the surgery coz you won't be able to wash it for about 3 days after in case soap gets in the eye.

That's all I can really think of right now and I know every hospital is different so I'm not claiming to be an expert or anything. The only other advice - try to stay positive and calm on the day.

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