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

Tuesday, July 6, 2010

Last night

We went to Emergency at the hospital. Joel had 1 breastfeed all day, no wet nappies, kept waking up screaming and I couldn't put him down for even a minute. I haven't been able to get hardly any drops into his eye, it is so swollen shut and if I try to open it he just screams. My boobs are rock hard and leaking everywhere. He was weighed last night and has lost 150grams in 24 hours, but they weren't too concerned about that. I got home from the hospital at 1am, he was up at 3 til 4 then Annalise woke up at 5. I am so exhausted, my mum is coming this morning to watch Annalise. I just snapped at her for being too noisy and threw a toy. I feel like the worlds crappest mother right now. I haven't put drops in my baby boys eye and he NEEDS them, I yelled at my daughter and threw one of her toys. I am not doing well at all.

His recovery from the first surgery was so much better, I wasn't prepared for this.


  1. My thoughts are with you and you are not a crappy mum, you are just having to go through one of the hardest times in your life! Don't feel guilty as Annalise will have forgotten and will be off playing its amazing how children are so resilient. I know I can't say much to make you feel better right now but I am thinking about you and hope you have some support people around to help out. Take care xx

  2. Hey Trace... you poor thing, so sorry things aren't going well. If there is anything you need at all you can always call but I know there is probably not much I can do. Other than bring large quantities of chocolate and a shoulder to cry on, or entertain the kids so you can get some rest. Glad you have your mum going there today. And you are definately not a bad mummy at all, we feel so guilty all the time as mummies but you are such a good mum and doing a wonderful job with both your kids. You are going through a really hard time and like Kirstie said kids are SO resilient Annalise won't even have given it a second thought. Really if there is anything at all you need just call. I am thinking of you and hoping Joel is feeling a lot better soon. xxxxxxxxxx

  3. I know everyone has offered but I am also here is you need me. I just wanna give you and your beautiful little darling man a big hug. You have such an amazing attitude. You are nowhere near being crappy at all.