Sunday, April 30, 2006


I think I cursed myself today, I said that fingers crossed we would be able to go home mid week and what does Rani do - throws up all over me - this is not a good sign, so I doubt we will be home mid week.

Mum and Dad and my brother Steven came in to visit today and they were all amazed at just how much more energy she has and how happy she is. This is the frustrating part as she seems fine but we are still stuck in the Hospital.

Her weight has come up a little bit yesterday - well 1 gram and it was still the same tonight - but her belly did go down by .5cm.

So I guess until her Doc comes and sees us tomorrow we still have no idea what is happening.

The only thing that does scare me is that we could be staying longer as he is concerned about something but is not letting us know until he is 110%, this wouldn't be the first time he has sprung things like this on us. :(

Saturday, April 29, 2006

Feeling Loved....

Well we are back in our

The other Mothers were most upset that we had been moved out of the room and probably a bit shocked when they woke to find a 7 year old boy where Rani they swapped around at

Well he went home today and the Mums asked for us back as the space was empty and the person they thought had Gastro didn' we were returned.

Poor John was stuck in the room by himself and not long after I got in there this afternoon we were moved...

Well Rani is pretty much the same today, but last night and today I had a sook day...fed up with being in the Hospital, missing Josh and Teagan, hating seeing friends bubbas getting sicker and sicker and just generally hating the Hospital and having no idea when we are allowed to come home.

But tonight my sister came in and sent me home to spend some one on one time with John, so it feels very strange being home at this

Night all :)


John just rang from the Hospital to say that Rani has been moved to another room...grrrr

I really liked the mums that were in her room, but unfortunately the new girl that came in last night has a gastro bug and Rani can't risk catching anything so she was moved into a 2 bed room

Oh well I guess I will be off a traveling to room to room..being a social

Well I am now home alone night when I got home the house was empty, as John had taken the kids out and Mum and Dad have just picked Josh and teagan up. So I think before I head into Hospital to see John and Rani, I will finish the page I started last night :)

I took this pic yesterday...Now that Rani is becoming a bit more active she is trying to get out of the cot, she flips a leg over the rail if I don't put it high

Friday, April 28, 2006


Well it looks like I firstly spoke to soon and secondly we won't be home anytime soon!!

Since being in the Hospital Rani has picked up one new medication and had her Phosphate increased.

Well today we picked up yet another medication and her Phosphate was increased to 6 times a day. They are also changing her Vitamin D to a stronger formula as she isn't absorbing this properly.

She also went down in weight again, tonight she had gained some of it back, but her belly had also increased another .5cm.

But at least she ate some more food today and seems to be tolerating being continously pump fed, so on Monday they are going to start adding Polyjoule (to try and fatten her up) to her formula, so we will see how that goes.

Hannah (Teagan's little Hospital friend) went home today (lucky girl!!!) and it was the little girl next to us 2nd Birthday today and the poor thing was to sick to even have some of her birthday cake. Unfortunately she is having the camera down her throat tomorrow, not fabulous news on your birthday.

Didn't I have a smile on my face tonight, after leaving the Hospital, yet again another idiot was speeding and weaving through the traffic on the freeway and every time I see this I just wish that there was a Police car, well tonight it happened, the idiot that was driving like an absolute fool got caught by the Police, I couldn't wipe the smile off my face when I saw him on the side of the road in front of the Police car with its flashing lights :)

Well back to the Hospital tomorrow, Mum and Dad are taking Josh and Teagan to my Cousin's Daughters 1st Birthday / Naming Day and then they are staying the night and bringing them to the Hospital on Sunday.

So I have to do a mad rush to the shops tomorrow and find a present while John is in the Hospital in the morning :)

Thursday, April 27, 2006


Well things just don't seem to be getting better, we were told today that we will be in Hospital for at least another week.

Rani is now being fed constantly via pump at 38ml per hour to see if she can keep the milk in. One good thing is that she actually felt hungry for food and ate half a cup of stewed apples, so I was happy to see her eating.

plus I felt was feeling a bit redundant as there is nothing to do, she is constantly connected to the NG tube, so no bottles to feed, just plenty of cuddle time.

Hopefully today we will have some more test results and it will be a full 24 hours on the continuous feeds so the Docs will be able to see if this is working. :)

The students must be getting ready for their final exams as today we had another 3 'guess what Rani has' ...I wonder how many there will be

Thank you everyone for your lovely comments they truly are appreciated. :)


Well things just don't seem to be getting better, we were told today that we will be in Hospital for at least another week.

Rani is now being fed constantly via pump at 38ml per hour to see if she can keep the milk in. One good thing is that she actually felt hungry for food and ate half a cup of stewed apples, so I was happy to see her eating.

plus I felt was feeling a bit redundant as there is nothing to do, she is constantly connected to the NG tube, so no bottles to feed, just plenty of cuddle time.

Hopefully today we will have some more test results and it will be a full 24 hours on the continuous feeds so the Docs will be able to see if this is working. :)

Thank you everyone for your lovely comments they truly are appreciated. :)

Wednesday, April 26, 2006



Will try and send you an SMS later tonight and get the kids to sing Happy Birthday really loud and see if you can hear it all the way over in


Well not a lot happened, being a Public Holiday no Doctors were in.

Teagan had a ball playing with Hannah and even Josh enjoyed himself as we had the computer, Xbox, DVD thing (technical term) from the Starlight Room, so he was able to play games.

Mum and Dad also came in for a visit and I thought we were going to have a good day, but out of the blue Rani started throwing up at 7.30pm and then when they measured her belly it had gone up to 51cm again but in the morning it was this has the Docs stumped.

Hopefully we will get some test results today and find out what the next move is, although they have increased her phosphate medication from 3 times a day to 4 as of yesterday, so will have to quiz the Docs today as to WHY????

Tuesday, April 25, 2006


Well it started out ok but then went down hill....

Rani again threw up her 4.30 and 8.30pm bottle and when the Docs came in for their rounds it doesn't sound like we are going home anytime soon.

Not that I was included in the conversation, (which annoys the living daylights out of me) but from what I managed to over are scheduling her for another ultrasound. We have to get poo samples today and tomorrow and wait for the results to make sure she doesn't have a gastro bug. Either Wednesday or Thursday they want to do muscle, fat and general measurements of her arms and legs and also at some stage start physio as she has no muscles and they don't ant her falling to far back physically. Plus of course her Specialsit still isn't happy with her weight or the fact that her belly has grown and shrunk 3 cm while we have been here and is back up to 51cm today which is what it was when were admtted, but it was down to 48 cm yesterday.

We also had what we call "guess what Rani has" Being that RCH is a training Hospital and what Rani has is fairly rare we have a lot of final year Med Students come in with Doctors and examine Rani and they have to try and work out what she has, not knowing anything about her. They usually don't get it completely right, but this is usually the first time they have seen someone with BA and it is good for them, so we don't mind to much. Hey, it breaks the day up a bit. :)

On a good side, my sister Rebecca came and kept me company last night :)

So, so much for coming home mid next week

Although I did scrap, no Rani hasn't turned as her first experience with a candle on Teagan's Birthday in March and I just loved the way the photo turned out.

As it is Anzac day today, John has taken Teagan in to play with Hannah the girl the same age as her in our room and I will take Josh in with me later and John can take him home.

Sunday, April 23, 2006


Well another day at the again took the morning shift as I was awake until 2am with the Greek Church singing on the street to celebrate their Easter.

Rani was put back on Albumin today, this time a higher dose...but they did it so slow, it started at 1.30pm and finished at 9.30pm and it was only 40ml.

Mum and Dad came for a visit at the same time I arrived with Josh and Teagan. Josh went home with Daddy and Teagan stayed and played with the 8 year old girl across the room until Mum and Dad took her home. Teagan had a ball with Hannah who is in with CF.

Unfortunately it was not as good a day today, they have given Rani a new medication to try to help with her vomiting and diarrhea but she threw up twice today...but this seems to be the pattern when they change either her meds or formula. So will wait and see what happens tomorrow.

At least they removed the pick line today and rani can finally use both her hands again but phew what a stink her arm had, but her bath is waiting until the morning as at 9.30pm I wasn't giving her a bath, plus she was asleep.


Saturday, April 22, 2006



Princess Rani looking happier today :)

Well I slept in until 11am this morning - john did the morning I bought Josh and Teagan in around 3pm and then John took them home with him.

Well the Docs came in this morning and seemed happy with how Rani is going so if she continues this way we made be able to come home the middle of next week. *fingers crossed*

Her belly will most probably stay swollen until she has her transplant and although it was up by .5cm this morning it had come back down when they measured it tonight.

Tomorrow she should have her final transfusion of Albumin and the drip point (technical can come out of her arm and she will be able to use both hands again.

Today was a much better day, as she didn't throw up any on her bottles and was going well to have 5 again today (which the Docs are extremely happy with)...

Unfortunately with Rani in Hospital we missed my cousins engagement party and although I knew I could go and John would have done the 'night' shift, I didn't want to take anything away from 'their night' with everyone focussing on how Rani was...iykwim...I'm sure they asked my family but that would have been the end of it, plus I would have got emotional talking about it...

So backin again tomorrow...i have a splitting headache, I really hate the air con at the Hospital it is so high that the second I walk into fresh air my head starts pounding...

Well nothing of excitement to report...night all :)

Friday, April 21, 2006


OK I am back from the Hospital and thought I would do a quick update before I crawl into bed.


Rani was placed on a Albumin transfussion and seemed to take it well. She had a really unbroken sleep on Wednesday night so was fairly tired most of the day.

The good news was that her belly has gone down 2 cm and she has gained a small amount of weight.

Unfortunately she is still throwing up part of one bottle, but instead of her normal 4 bottles per day she had 5, so that is a good sign...other than that not a lot of


Today was fairly uneventfully. we were informed that perhaps she would be discharged at the end of this week.

Today was a day for visitors we had, my 2 best friends Sally and Sandra, my Mum and Dad and my sister Rebecca.

Again after the 4th bottle she was throwing up, this time I was going to get a nurse as she was really struggling to breathe, but she eventually overcame is so scary and heartbreaking as you can't do anything to help her.

Again another uneventful day..her belly is still the same size, but she has gained some more is so unusual as they weigh every nappy to see what is going out as to what is going in and we are back to taking samples of her we have a lovely collection

OK short but sweet I am off to bed.

Thank you everyone for your kind comments on here and your emails :)

Pic of my sister and Princess can see her bloated belly and the main reason for this Hospital stay!

Thursday, April 20, 2006

We're Back

Well it was meant to be another trip to the Hospital for Rani's weekly weigh in, bloods and check up, but now she is staying in Hospital.

Her Specialist is back from 3 months overseas and admitted her straight away.

Unfortunately her original operations (Kasai) has now completely failed and her liver is failing quicker than they thought it would. The catch 22 situation is that she is getting sicker and sicker but she needs to get healthier in order to have a liver transplant, because if they attempt one now she will not make it.

So they are trying to get rid of the fluid build up in her belly, get rid of her cold and gastro while fattening her

So atm we have no idea how long she will be in Hospital for it may be a couple of weeks.

Will try to keep everyone up to date.

Thank you everyone for your lovely emails, SMS's and phone calls, as I said in my vent, I love having cyber friends that care so much

Tuesday, April 18, 2006

Vent, Vent, Vent....

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

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

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 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.

Sunday, April 16, 2006


Well I hope that everyone had a fabulous Easter today and got spoilt by the Easter Bunny.

Ours started very slow, Rani was having a bad night and didn't sleep at all, I finally got to sleep at 11am, after of course getting the photos of the kiddies and their Easter Eggs and presents. I slept until 3pm, then we went to Mum and Dads for more Easter Eggs and Pizza for dinner.

Rani scored as she can not eat chocolate yet, so she got toys and clothes and Joshua and Teagan were very happy with the amount of Easter Eggs they got and suprisingly haven't eaten to much today.

I am very happy that I had my baby girl home for her First watch out for the LO's.

Here are the kiddies with what the Easter Bunny bought them.

Saturday, April 15, 2006

It looks like a Family Easter

My Dad and Rani.....

Well it looks like Rani will be home with us for her first Easter as we still have not had a call from Admissions...saying that it doesn't mean we haven't been to the

Little Miss Rani pulled her tube out again. well not really...she doesn't actaully grab at the tube unfortunately part of her illness is really really itchy skin, so at night when she is rugged up the only skin to scratch is her face. So while she is scratching her skin until it bleeds, she is rubbing on the tube and eventually it comes out. Well anyway John went of to Emergency this morning, the scary thing is being well known we get ushered straight 20 minutes later he was back on his way home, tube put back.

Well I have managed to scrap a page while john and Rani are having an afternoon nap, she has been keeping us up as she throws up her last feed at night and it really stresses her out, so takes hours to settle her back down...that precious sleep

Lucky to be alive!!!!

Well Joshua and Teagan are lucky to be alive today. I was sorting pages into different albums, so I had some pages on the coffee table.

Well I became distracted with Rani throwing up yet again and so didn't get back to the albums.

the kiddies had been watching Foxtel in the lounge room most of the night and after sending them to bed I was about to turn the lounge room light off when I notice a cup on its side on the coffee table way to close to my LO's.

On closer inspection I saw that the cup had had water on it and it was on my LO's.

I yelled to the kids upstairs to get downstairs and explain who and why the drink had been spilt.

So after some tears thankfully the pages aren't looking to bad, I am glad I found them last night (obviously) just after it had happened and not in the morning as they would have been stuck together.

So the kiddies are being very loving today and staying away from the lounge, me and my scrapping supplies when they have a drink...

BTW i didn't find out who did it as they both blamed each

Friday, April 14, 2006


Well we are still home, no phone call from the Hospital today, we kind of didn't expect that we would get the call as it is the Good Friday Appeal today, although it would have been good for Josh and Teagan if a bed had have come available, as there was plenty going on.

So of course we made a donation We rang up at 3.30pm and said that if they read it out we would double it.

Well I have sat in front of the TV for hours to scared to leave in case they said our names and finally at 10.10pm Paul Mercurio read out our pledge.

Well it was from John and I and my Mum and Dad and suprisingly he also said it was for Rani that has been in and out of the Hospital since she was 1 month old and is awaiting a liver transplant and that we also wanted to thanks the Gastro Dept on the 9th floor. So obviously the lady that took Johns call wrote down everything we asked.

So we are one happy family at the moment as we really didn't think that it would be read out.

So now all I am hoping is that the phone call from Admissions doesn't come until Monday, so I can have my whole family home for Easter.

Thursday, April 13, 2006

The Appointment....

Well John took Rani to the hospital today as I have managed to catch the flu that is in our household...she was weighed in and weighs 5.7kg. When John went upstairs to the specialist they told us that is what she weighed a week ago when she was discharged from Hospital. We think there is something wrong with their scales as when they weighed her the day before she came home it read 5.560kg, so are they saying that in a day she put on 140 we are sure that she has gained weight. Anyway after bloods, tube put back in etc he came home.

THEN at 3.30pm the phone rang to say that Rani needs to be re-admitted as her Albumin and Phosphate levels are dangerously again we are waiting on the phone call from admissions as to when a bed is available to have a transfusion of Albumin and Phosphate.

Hopefully only one night in Hospital, as I would really love to have my baby girl home for her first Easter and also for Josh and Teagan to have everyone home when they see what the Easter Bunny bought them.

So she may be admitted Good Friday and you never know we may end up on T.V for the Good Friday Appeal...trying to find some positives.

So incase I don't get back online again until after Easter - HAVE A WONDERFUL EASTER

Wednesday, April 12, 2006

What a

Today ended Teagan's week of Student of the Week at Physie and she had to take the trophy back for the next person. I think it is a great idea that everyone eventually takes home the trophy for a week....You can guess what was Sho 'n Tell this

As Physie is closer to Mums, we drop Teagan off and go to Mum and Dads and as Rani was being fed I took Teagan back after dancing. As John was out for dinner, Mum made us dinner as well...I love it when I don't have to cook or clean for that While there Steven after drawing a face on his hand to entertain Rani, thought that Josh needed a moustache...Josh thought it was hilarious....

Then to top of a great night little Miss Rani decided that it would be a good idea to pull her tube out again...thankfully we are going to the hospital tomorrow for her blood tests, weigh in and check up, now we have to go through the hell of having the tube put back in again....grrr

Tuesday, April 11, 2006


OK for those that do not know about Rani, here is a rundown.

Rani was born 25 August 2005 and at about 3 days old I noticed that she was jaundice (I wasn't concerned as my son was also jaundice at that age), well the hospital did some blood tests to check her levels and I got a phone call from the Peditrician at 11pm, saying that he was concerned about her Billirubin levels and if we could do another blood test in the morning....fine

When she was 5 days old and after another blood test we went home to adjust to a new baby in the house again (as it had been 7 years since I had my last being told to see the Peditrician later in the week for the test results.

Well her bilirubin was still high and other levels were getting higher, so this menat more blood is so horrible to watch the nurses trying to get blood out of her heal and listening to your baby scream.

Well each week we had blood tests to be told by the Peditrician that he wasn't sure what she had, I was starting to get fed up by this stage, as it was costing us $85 each week to be told the Doc didn't know why her levels were getting higher and higher. Finally he came up with something "Biliary Atresia" and we were referred to the Royal Childrens Hospital Gastroenterolgy Dept.

On 22nd September 2005 (just before Rani was 1 month old) we were at RCH, of course they ran more blood test, urine tests, ultrasounds...all up we were in the hospital for 8 hours. The Specialist suspected 'Biliary Atresia' which is basically the bile ducts are blocked in the liver and can not drain the bile, which in turn causes the jaundice and at the same time is scarring the liver.

Now at this appointment we were told that she would need to come into hospital and stay 1 night to have a liver biopsy to confirn that she had "Biliary Atresia".

My husband and I went home in shock and exhausted from all the tests and overload of information, to await the dreaded phone call as to when we had to take our baby into hospital.

The call came while I was shopping with my mum at Toys 'r could have knocked me down with a feather, what was meant to be one night had suddenly turned into 4 nights.

Rani was admitted into hospital on Monday 10th October 2005, she had a heart scan on Tuesday, the Liver Biopsy on Thursday and discharged on Friday. It was what they suspected and they wanted to do the "Kasai Procedure" ASAP as she was so young they thought she was a higher percentage to have the operation be a success.

So 4 days later on Tuesday 18th October 2005 we were back in hospital for the 'big' operation. By this stage my baby girl is only 55 days old. First thing Wednesday morning she went into surgery, the longest, most agonising 6 hours of my/our life. When I saw the surgeon had a smile on his face when he came to the parents waiting room I think I finally took a breathe. Seeing my baby connected up to tubes and drips and so small in the big cot was to much to bare....we sat with her as they bought her around, but they kept her on morphine, more to stop her from moving. She had a huge 14cm scar right across her belly, but we were all suprised at how neat it already looked.

9 days later we took Rani home, hoping and praying that the operation had worked and this would be the end of it. It took 6 weeks before they could confirm whether the operation had been a success. Everything seemed to be pointing the way that the operation was working, as we were going into the hospital for weekly blood test and then at the end on November, just shy of 6 weeks it all started going pair shaped.

Firstly we got a call at 11.30pm one night telling us that we had to rush Rani to Emergency as she was dangerously low of Vitamin K and she needed a shot now!!! Since the liver biopsy she has been on Vitamin K, A, E and D, plus lots of other meds and supplements as she can not absorb these Vitamins.

Then her belly became swallon and she was having difficulty breathing and drinking...John had taken her in for one of her routine check-ups and she didn't come home, they admitted her there and then. The biggest indication that the operation was failing. Her little belly was bloated to 45cm. They put her on 2 different diaretic (which she is still on today) to drain her belly and 15 days later, just before Christmas she came home.

January 2006 was a good month for us, our weekly appointments got changed to fortnightly and Rani seemed to be doing fine, that of course was until we went for her check up in February to find that in 3 weeks she had lost weight instead of gained.

We were issued a special formula and more protein powder etc to try and fatten her up. In the 4 days of the new formula she put on 5 grams. The Docs gave us another week, this time she put on 115grams, the Docs weren't overly happy and increased her intake and gave us another week and said if she didn't put on weight they were going to admit her. Well she only put on 80 grams, so we were told that she was going to be admitted and all we could do was wait for the phone call as to when a bed was available.

That call came on Saturday 1st April and she was admitted. On Sunday she was given a naso-gastric tube to amke sure she got the amount of fluid she required daily and then on Wednesday we were able to go home.

We are back to weekly visits as she really needs to gain weight as she is almost 8 months old and only weighs 5.5kg and has no fat, no muscle, so no energy. She also needs to gain weight at least over 8.5kg so she can have a liver transplant.

So that is Rani's story so far, hopefully there won't be many more complications and she will gain weight, get a transplant and never remember her rough statr to life. I have been doing a hospital album for her, so when she gets older she can understand exactly what happened.

First photo is a pic of the Meds Rani was on after her op..there are now even more :(

The second photo is Rani high on Codine after her liver

Had a Great Day!

After the stress of yesterday and a bit of an emotional night, I have had a great day today.

Firstly (touch wood) Rani has kept her tube in :)

Well I had a lovely morning tea with a friend, who is due to have her baby in October, so a little friend for

Then my sisters present for Teagan's birthday arrived from London.

A beautiful Harrods bear, which takes pride of place on the top shelf of her furniture.

and a BIG HAPPY BIRTHDAY to Kirst!

I think that my day is going that well that I might even scrap.

Monday, April 10, 2006

It's Back!!!!

Went into the hospital and had the tube placed back in and when I got home taped it up extra tight, as it is horrible watching her squirm and fight it...again it took 5 people to hold her still so the nurse could put the tube back. She certainly can be strong and determined when she wants to.

then I had lunch at Mum's as her friend wanted to see how Rani was doing and as I have a girlfriend coming over for coffee tomorrow morning, I better get off the computer and clean up the

Sunday, April 09, 2006

Spoke to Soon....

Well what was I saying about Rani seeming to be accepting the tube and touch wood sh hasn't pulled it

Well I must have cursed myself, as she has just pulled it out...not on purpose mind you. As her cheek is so little, it is hard to get a good stick with the tape, as when she rubs her eyes the tape rolls and pulls off her face. We can't constantly watch her and she was asleep in her cot and when we looked over the tube was lying next to her :(

So i guess it is 2 trips to the hospital this week, back in the morning. :( I just wish the hospital was closer

Some of my recent LO's

Here are some LO's that I have done while Rani was in hospital.

The first LO is the reason she was in hospital, as she is to skinny, we need to fatten her

The second was taken with my brother when we went out to dinner for his birthday

The last one was also taken at dinner, Miss Rani showing her


Well I have had my arm twisted to start a Blog to keep family and friends that are overseas and interstate up to date with our family but especially with Princess Rani.

As most of you know she is now out of hospital, has been since Wednesday afternoon and thankfully (touch wood) is handling the naso gastric tube well, she hasn't pulled it out since Sunday night in the hospital.

After some getting used to the tube is just part of normal routine today. Cheeky Rani did become lazy and was getting tube fed almost every bottle, but today has been better and out of the 3 bottles she has had today only one has been tubed.

We are back to the hospital on Thursday for her weekly blood tests and weigh in, but from the feel of her, I think that she has gained some weight, hopefully she will continue to gain those much needed kg's and get her liver transplant and become our happy and 'healthy' baby girl.

Picture taken in the hospital after the second (long term) tube had been put in. :)