Friday, June 30, 2006


Well I am feeling a bit down and depressed.

This flu that I have been fighting off for months has finally broken and I haven't been able to see Rani since Wednesday as I can not afford to risk giving her my it is killing me just getting updates from my family but thank goodness they are there for both Rani and I.

Plus there are other dramas with friends, family and other stuff that is making me one emotional mess...not in the least bit is all this helped with the impending transplant looming over our heads I am not the happiest person to be around.

Rani is doing well. She is now 7.5kg and they are still happy with her. She also has a runny nose which is making it hard for her to breathe when she sleeps but not to bad. She is having another blood transfusion today as her counts are low.

I got my DSLR yesterday and am having a ball playing around with it...just can't wait to take it out of my play with it.

Well short and sweet as it is back to bed for me.

Thursday, June 29, 2006


Well can you believe that after so long of dreaming and hoping to get to the ever elusive 6kg mark Rani is now 7.42kg. She is so chubby faced it is so funny to look at her, she is almost like a new child as she looks so different to the skinny little thing we had.

Her arms are doing really well....they took the slings off Sunday and suggested that they would heal themselves. Monday afternoon Rani started to use her right arm and now she is almost using it like nothing ever amazes me how quickly she gets over things.

Also by Monday she finished her last lot of antibiotics and it was like seeing a new child, she was happy, her eyes were clear and she was kicking about again.

I had the day off from the Hospital on Tuesday and took Josh and Teagan shopping to get the last of the things they need for camp, as they leave on Monday. Teagan is excited as this is her first camp...Josh of course is acting like the expert as he went last year...although I don't think that they are that excited that they have to go

On Tuesday Rani's specialist came in and told Mum that she is now ready for the liver. The thought actually made me feel sick. It has always been in the back of my mind but now it is so close it is heart beats so fast when the phone rings.

i had a tour of ICU yesterday and saw all the scary machines that will be connected to Rani will be connected to after the transplant.

Well the kiddies are going to the Circus with their Aunty Becca today so they are very excited.

They have been spoilt with Rani in Hospital. Nana took them last week to see Cars and yesterday to see Over the Hedge and today the Circus. But they have been very good about sometime having to spend some time at the Hospital so it hasn't been to bad.

I also got to speak to my sister in London last night...

Hope your move went well Kirst :)

Sunday, June 25, 2006

10 Months Old

I can't believe that my baby girl is 10 months old today. It has gone so quickly even with all the dramas in her life.

She still doesn't look like a 10 month old most people that see her in the Hospital think she is about 6 months...she has finally made it into double O (00) clothing, only just as most of the stuff she wears is still OOO.

Although I am also a bit sad as I doubt very much we will have her home for her 1st birthday...we were secretly kind of hoping that she would have a new liver and be home before she turned one.

But with only 2 months until that date I am seriously thinking that she will be celebrating her birthday in the Hospital. I am still secretly hoping that she has had the transplant and is well into recovery so she can enjoy the day.

BUT.... I got my Krispy Kremes this again suprised me but getting up early and driving down to get them. I thought he was going to the Hospital early...but they are YUMMY!!!

Saturday, June 24, 2006

Much better today

Well now that they know exactly what bugs Rani has they have given her medication to get rid of it and you wouldn't believe the difference in her from yesterday to today.

She was so happy when I got to the Hospital, laughing and kicking her legs around. It was so great to see after yesterday.

They also decided to take the slings of her arms and let them heal themselves and I am guessing the use of her arm made her a lot happier.

She is still only using the left arm, so they are sure with her not using the right one it will heal fine.

Her temp was also back to normal and her eyes are looking almost clear.

So definately a much better day today.

Then my lovely husband was going to suprise me by having some Krispy Kreme Donoughts at home when I got back to the Hospital. So from the Hospital he took the kids down to Fountain Gate another 30 minutes out from our home and when he got there he was told there was a 2 hour line up (as it only just opened)...Poor Boy, then he had to drive back home again empty handed.

Friday, June 23, 2006

From Bad to Worse

Well the X-rays have been looked over and not only does she have a fracture in her right arm she also has one in her left arm. They are trying to keep her sedated on Codine to stop her moving around and have her poor little arms slinged to her she is also starting her antibiotics today to try and get rid of her cold...

AND to top it off last night her Oxygen levels went down to the 80's so she was put on Oxygen last night and again connected up to the machine today to keep an eye on her levels and her heart is beating fast even though she is just lying in everything is just being watched.

It is days like this that I wish she had a new liver or that the call would come in that the perfect liver is waiting for her as it is so heartbreaking watching her go through all these makes it hard to even imagine that there is a light at the end of the tunnel.

Well the news didn't get any better when I got to the Hospital. Rani had a tempreture - she was up to 38.6 degrees. It had come down to 38.1 when I left. We also got confirmation that she has an infection in her eye, so she has to have drops every 2 hours and confirmation that she also has another infection that was giving her the runs. So she had 3 doses of antibitics, then another transfussion of Albumin and then back on antibiotics for 48 hours.

The poor girl is just so tired and i would say very uncomfortable as she has her right arm tied to her chest and as she kept slipping her left arm out of the sling it has been put elbow first into the sleeve of her shirt but you see her little fingers going like crazy. It is funny sitting there looking at my baby one of the silly things that came into my head and later as I found out others was that she was trying to do a Dolly Parton Impression, you know when you use you elbows like was good to just laugh.

We saw rani's specialist today and he explained what was happening. He wants Rani to see a bone specialist next week as after she has the transplant the steriods she will be given also reduce bone density and with her bones as fragile as they are now we are probably in for more breaks. So perhaps the bone people can think of something to help strengthen her bones.

Rani doing her Dolly Parton and I also took pictures of the widely exciting view from our room that I get to look at everyday. At least when we were in the 4 bed room we looked at a park and could see the Helicopter come in. You lose the view when you get your own room :( The first one is looking straight out the window the second one is if you push your head against the window and look to the

Thursday, June 22, 2006


Well after sleeping all day for Mum I actually came to the Hospital to see a happy happy Rani. Usually she plays for Mum and sleeps the afternoon away.

Anyhow yesterday I had noticed that when i changed Rani's clothes and lifted her she cried when I touched her right arm...but she was playing happily so I let it be.

Today I noticed it again when I stripped her off for her weigh in that again she grizzled when I took her right arm out of her t-shirt. Then when I was playing with her I noticed that she had completely stopped using her right arm al together, just leaving it limp to her side. I tested her by waving her taggie over her and she reached for it only with her left hand. Now we have already worked out that she is going to be left handed and certainly favours this arm, but not to grab anything with her right arm was strange for her. I placed her dummy on her right side and she rolled on her side and grabbed it with her left hand.

When the Nurse came into to do Obs I told her. She was taking her temp and holding her left arm to her side so I again grabbed her taggie and again she didn't try to grab it as her left arm was being held. Once her temp was finished she imediately grabbed at it with her left hand. The Nurse called one of the Doctors to come and have a look.

Of course when the Doc came she had fallen asleep and not just a light sleep a deep sleep. Rani's other problem is she doesn't cry in front of the Docs. So even though when she woke briefly I could see her face grimace when he squeezed her arm she still didn't cry. She does it with most procedures which makes it hard for the Docs to know what is up with her. But after speaking to me and her Nurse they thought to be on the safe side they would arrange an X-ray.

At about 6.30 the machine came up to Rani's room and you can tell she has a scrapper as a thought it was a great big camera and was smiling away.

We waited around and at 8.30pm Rani cried her self to sleep...we told the Nurse that it didn't matter what time she could call us with the X-ray results. We left and picked the kids up from Mum and Dads and just as ew walked in the door at 10pm the phone rang.

It was Rani's Nurse the X-ray results had come in and she has a fractured Humerus (the top of her arm) so they have put it in a sling and wrapped her up in a sheet like a baby and gave her some Codine (which will probably knock her out as she is not usually allowed any drugs like that) and she will be looked at in the morning.

We knew that she had fragile bones due to the fact that her body doesn't absorb much but it was a shock to hear that she has a fracture...oh well I guess it is just another hurdle for us to climb over.


Well when I spoke to Mum this morning Rani is 7.01kg. Woohoo!!!

Unfortunately she is not well. Her eyes are gunked up (yep technical term) they are all swollen and every morning they are sealed shut. She is developing a full on cold...they took a swab of her eye but there is no major infection and today they took some snot samples to see if it is a viral infection...which is what they think it is. Plus she has diarehea again so they are weighing her every 8 hours to make sure she isn't dropping to much fluid.

Yesterday was my all day shift as Mum has Wednesday off. She took both Josh and Teagan to see Cars, so they were happy. Miss Rani wasn't well and slept pretty much all day...she was awake briefly for maybe 30 minutes at times and most of the time she was grizzly. She finally had her X-ray where she had to swallow some special liquid (can't remember the name). She was pretty good for it and swallowed well and laid still considering I was holding her arms and 2 other nurses were holding her I guess we will wait and see what the results of that will be.

So keep your fingers crossed that this bug doesn't last because in her state if the perfect liver comes up they probably won't give it to her as after the operation she is imuno-supressed(sp?) and her body wouldn't be able to fight the bug...grrr

Tuesday, June 20, 2006

Nearly There!!!!

Well today I had the day off from the Hospital and when I rang Mum to see how Rani was she told me she was up to 6.95kg. They have uped her TPN and Fat, so I guess by tonight or tomorrow morning she will be at the long dreamed for 7k mark.

Well I had a lovely day today. Teagan was picked up this morning to go Ice Skating with a school friend and Josh and I went out shopping. Both the kids go on camp when the school holidays finish, so we went out to get him new runners, PJ's, socks, jocks, coats and bags ready for Camp. We spent over 2 hours shopping which was amazing as Josh hates shopping, but I guess it was all for him. It was so nice to spend one on one time with him. Neither of us could remember the last time just the 2 of us went out together.

Also we had a little milestone with Rani. Her centre of gravity is so out with her budha she loves to sit up in the cot (she has a chair) but sometimes she just wants to sit ith you supporting her back. Anyway yesterday Mum was holding her up while she was watching the cleaner and Mum moved her hand and she actually stayed upright for a little while. She did it for me briefly later in the another small tiny baby step on the way to her next milestone.

Sunday, June 18, 2006

Nearly There

Well John has called from the Hospital and this morning Rani is up to not to far away from the 7k mark.

Thankfully even though she is still throwing up and no drinking anything the TPN is still fattening her up...I am so glad that it is now working so well. I must admit that to start with I wasn't impressed with this 'so called miracle' feed that was going to put the weight on. It took a good month to kick in properly and now it is working I am glad that they put it in.

She is so good with it all. It is also heart breaking that already she knows all the procedures. Yesterday before John took Josh and Teagan home the nurses came in to change her dressing and her lines.

The dressing is around the tube that goes into her chest and is stuck with two clear plastic like bandaids...and Little Miss Rani just lies there quietly as they rip (as gently as they can) the tape off...I mean these are stuck down for 6 days and I know how much it hurts when you take a bandaid off after that long...and this is on her chest. Everytime I see it I say that it is time to go home, that we have obviously been here way to long if she is not going to cry or move when they pull tape off her skin. It is so heartbreaking but beautiful to see that she is so brave hopefully this means that when she gets the Liver she will be a trooper and get well amzingly fast.

Well yesterday was the 2 Nurses last days at the Hospital. I printed them eat a photo I took of them with Rani and we gave them a box of Chocolate. They both came in and said there good-byes and had will be strange not seeing them in the Hospital.



I hope you had a fantastic night last night and are still getting spoilt today on your special day.

I was thinking of you last night and even stayed awake to send you and SMS just after

Can't wait to see pics.

Friday, June 16, 2006


well I finally took a photo of Rani's cheeks well as taking some with her and the 2 Nurses that are leaving for her Hospital album.

So look at that round a double chin... :)

We have a meeting on Monday with the Surgeon that will be doing Rani's transplant to discuss everything so that we can sign the Consent Forms for when a liver does come up. I am starting to get really scared as it is becoming way to always seemed that it was something that would happen in years to come and in reality it could happen at any time...just to muh to try and absorb :(

Another Update

Well things were going along just fine, Rani weight was up to 6.78kg but now she has got sick.

She can't keep anything down and she is throwing up about 6-10 times a day. It is horrible to watch as she is choking as there is really nothing to bring up except for the bile in her belly. So hopefully today she will be having an x-ray where she has to swallow some horrible stuff so they can check her lungs etc.

Also yesterday she had a huge amount of bloods taken again to keep her work up bloods for the transplant as up to date as possible, thank goodness for her Central line. It has two ports one for the feeds to go in and one for taking more needles.

Also yesterday another regular came the Hospital atm we have practically the whole original room when I popped downstairs I ran into one of the other mothers that was in the that was all 4 she was coming in as an out-patient.

Well the kids start school holidays this afternoon and I have no idea what to do with will be so boring for them to go to the Hospital everyday...will have to do some quick thinking...

Then I am also sad as 2 of the Nurses that I really like are leaving tomorrow - one to go on an overseas trip for 5 months and the other to another will be strange not to see them everyday. :(

Well I better make this quick as I have to go into the Hospital earlier so Mum can get back to pick the kids up at 2.30pm.

Tuesday, June 13, 2006

My Bubbas Cheeks

Isn't it funny, I suppose seeing Rani everyday I don't notice the full extent of her weight gain, but tonight my sister came in for night when she picked up Rani I couldn't believe how big she was...her cheeks are absolutely huge...i must remember to take a pic of her sitting up. She has certainly piled on the weight and everyone is very happy with her progress. Her Specialist called her a Super Star and even the Head Transplant Co-ordinator dropped into to see us because of the Specialist

So her TPN was upped today, and we are slowly heading towards the minimum 7k mark, so with more proteins and fats going in it has to make the weight go up.

She is back on the transplant list tomorrow, although the Head Transplant Co-ordinator told us that if the perfect liver had of come up in the last 2 weks that would have given it to Rani, something our Co-ordinator forgot to say.

She is still classed as stable, although she is throwing up a lot more which is becoming a bit of a concern as to the risk of aggrevating her Varices, but she is also drinking lots more and seems to be getting a cold. So they are watching everything.

I, as everyone is sick of the Hospital and can't wait to take our baby girl home, but we know the best place for at the moment is where she is, and the nurses just love her so I feel confident even when not there.

So fingers crossed that we don't have to wait to long for the perfect liver and Rani can get out of the Hospital before her 1st birthday...which atm seems very unlikely.

Saturday, June 10, 2006


Naughty has been nearly a week and I haven't updated anything.

There isn't a lot to tell you about Rani this week. She is classed as 'stable' and returns to the transplant list on Wednesday.

She is slowly gaining weight and has stayed steady at around 6.5kg all week, so that is good. We are so shocked as we only dreamed of the ever elusive 6kg mark and she would get there and have something happen and drop right back. But even though she is now on Albumin twice weekly she is only dropping about 50 grams after the treatment, rather than the 200grams she used to. So her Specialist seems to think that it is finally proper weight gain and not fluid gain.

She is also drinking her milk from her bottle and taking her meds orally well (occasionally having a hissy fit) but all in all well. She is throwing up at least once a day, which is very scary hoping that there is no blood in the vomit, but so far it is just flem and milk, so no one is overly concerned or though they would prefer that she didn't aggrevate the enlarged veins in her neck.

It is a long weekend so we have the kiddies until Tuesday morning...WOOHOO... Teagan is very excited as Hannah a friend she made in Hospital with CF is back in for a treatment, so she is off to the Hospital with John so she can play with her.

Well I also scrapped yesterday with the girls from Memories and More and got two pages done. It was so great to chat with you all and to scrap again.

Sunday, June 04, 2006


Just for Lisa, Chrissy and Chris. Here are the photos as promised.

Don't you think Rani will kill me for these photos when she is

BUT check out the rolls on her the other photo doesn't show her cheeks as well will you look at the size of her now.

Saturday, June 03, 2006


John has just rung from the Hospital...he has morning

AND Rani is now up to 6.42kg, that is another 50grams over night. It may go down a bit as she has to have another Albumin transfusion today and then the Lasix to get rid of excess fluid, but at least she will stay over 6kg.

Stay tuned Lisa, Chrissy and Chris, I have the batteries charged up and I will be taking some pics.

In the meantime I will share a LO I did on Miss Rani chewing her drip

Friday, June 02, 2006

Our Little Budha

Well we are all amazed...Rani is finally starting to pile on the weight and you can actually see it. She has a (yes only one, but the first one) fat roll on each leg...everyone who see's her comments on is such a mile stone.

Shockingly she now weighs 6.37kg.

On Thursday night when it came time for weigh in she had been 6.18kg in the morning and jokingly I said to John I hope it is 6.2kg and she was 6.31kg...we were shocked but so excited.

Her face is getting fat and her cheeks are huge. Thankfully it is starting to go elsewhere as her belly is still reasonably flat.

So this 2 weeks off the list could be a good thing and perhaps she will be 7kgs (what the minimum they want her to be) by the time she is put back on the list.

I wonder what she will be tomorrow????