After watching Rani throw up for the second time tonight, I am so mad, upset, frustrated and every other emotion that I am just going to vent all the things that I hate about Biliary Atreaia in no particular order...lol
I hate that I have to give my Baby Girl meds 3 times a day that make her throw up or come out the other end.
I hate that I have to force feed milk into her through her Naso-gasric tube.
I hate that I have a 8 month old that is about 3 months behind everyone else physically thankfully not mentally.
I hate that every week I have to take her to Hospital to have blood tests.
I hate that there is nothing I can do to make her better.
I hate that she can't tell me what is wrong.
I hate that at any time we can get a call to take her to Hospital.
I hate that her belly is bloated again and she will probably be back in Hospital again real soon.
I hate that she is sick.
I hate that this affects my other 2 children and they miss out.
I hate that we can't plan long term just in case we are in Hospital
I hate that Rani is so itchy that she scratches herself until she bleeds
I hate the fact that all of our family have conversations about the colour of poo!
I hate that her operation failed
I hate being told that 'I got Rani because I could handle her', or 'God only gives kids like this to those that can handle it'.... let me tell you I can't handle it
I hate being told that there was obviously a reason that I couldn't get pregnant for 5 years and have a 7 year age gap between my second and third.
I hate that Rani is yellow.
I hate the fact that I cry myself to sleep
I hate that she has to have a Liver Transplant
I hate reveiving and wondering if I did something wrong during my pregnancy, even though I have been told I didn't cause it.
I hate worrying daily that Rani has to become really sick before they will do the transplant.
I hate the looks and people that think it is ok to ask if John is the Father because she is dark...just rude
I hate the Health Sister that told me that Rani was fine only slightly Jaundice and that the Peditrician was wrong and that I should get a second opinion..I am so glad I didn't listen to YOU!!!!
I could go on and on so I think it is time for some positives
I love the time I get to spend with Rani
I love that the Peditrician didn't give up until he found out what was wrong with Rani unlike the Health Sister ...grrr
I love the nurses at RCH, although wish we weren't on a first name basis...lol
I love that my family are there ready to do anything at any time for us.
I love that friends of my family have offered to get tested to donate part of their liver and they have never met Rani.
I love that I have so many cyber friends that I can just send an email or SMS to and feel better
I love the support I get from all of my friends
I love everytime time I hear Rani laugh
I love having my whole family home
I love thinking of how life will be when Rani is healthy
As much as I wouldn't wish this on anyone (not even my worst enemy) I am glad that it happened on our 3rd and final child. I don't think I would have been able to handle this 9 years ago and I definately wouldn't have had anymore children...plus the advances in Medicine have probably been huge in 9 years. She gets fantastic care at RCh and her Specialist is great...I just look forward to the day that I don't have to go to the Hospital and I don't have to put Rani through anymore blood tests, operations and Hospital stays.
OK if you have read all of this thanks I feel much better getting it off my chest.
I wouldn't trade Rani in for the world.