After yet again another bleed scare...thankfully it was only in one nappy and there were no more...I was feeling very robbed.
Firstly I feel robbed that this is meant to be such an exciting time in our lives that we are meant to be enjoying this wonderful child that we created. That instead of being in a Hospital bed Rani is so robbed that she is almost1 year old and hasn't really had any major milestones. She didn't have the energy to do anything and now that she does she is in pain and bloated so can't do anything. She hasn't said her first word, hasn't crawled, doesn't even roll over anymore and just basically lies in her cot all day. Simple things that you take for granted or get frustrated when you feel that your child is behind in development that Rani has just not been able to experience. Josh and Teagan are robbed that they aren't getting a normal life as much as we try but spending every weekend traveling to and from the Hospital can't be any fun and when your parents get distracted with Rani dramas and you spend a lot of time living with your Nana and Grandpa they have got to feel that they are missing out.
It is amazing where you can draw strength from and believe it or not I draw mine from Rani, she is so happy (well most days) and takes most procedures like an old pro. I guess that is one agvantage to her being so young that she hasn't learnt to fear the Docs. She amazes me how she will lie there so still and quietly while they have to do what they need to and once it is finished she kicks about again. So to know that on most days I am going to see Rani chubby smiling face makes it orthwhile.
We can all see the frustration in Rani that she wants to do things and can't. I think the worst is waiting not only for a liver but being on edge everyday that something will go wrong...that a bleed will be worse, that at anytime she can end up in ICU...if I think about it to much I end up in tears. It just seems so unfair that this is happening to Rani if I could switch places I would do it in a heartbeat. It just seems that we are getting constant bad news...that things are failing and both John and I wake at ridiculous hours of the morning with horrible feelings...hence the reason that I am typing this at 1.30am.
We had the Parent/Teacher interview last week and obvioiusly this is effecting Teagan more than she lets on as everyday she tells her teacher that Rani is ok and still in Hospital or updates her with what she has heard us discussing. This is not something that a 9 and 8 year old need to be worrying about, they should just be enjoying being kids and nothing else.
We were admitted on Wednesday 19th April for 2 nights to maybe a week and Rani hasn't been allowed to come home. Believe me I know that this is the best place for her, that the TPN has been a life saver, that if anything does happen she is in the best care...but to not have your baby girl home for now 13 weeks and still not knowing when she will be home is hard on anyone to handle.
I mean it has turned everyones lives upside down including all of my family. I don't know how I would make it through this time without them. Mum and Dad have taken the kids most nights during the school week. Mum sits in the Hospital every morning (except for Wednesdays) so I can do things like pay bills, washing etc before I come into the Hospital in the afternoon. My brother comes in every Monday and Wednesday night and my sister comes in Friday nights and sometimes Tuesday and Saturday nights depending what she has on, just so John and I can spend sometime together. Then on a Sunday Mum and Dad come in for an hour or so visit.
Then to top it off Mum and Dad are letting us all move into their house for a little while as we don't have time to find another house to move to. So at least that is one stress of our minds and we can put our energy back into Rani, Josh and Teagan.
I am eternally grateful to my family and have no idea how we will every repay them for what they have already done and what they are doing...but Thank you just doesn't seem like enough.
Plus having friends and other family checking up on us to make sure we are ok and just knowing that you are thinking of us makes us feel very special.