Spreading the Word

Yesterday while John was spending time with his brother who came down from Townsville the Sydney Morning Herald rang John's mobile saying that they had got our details from Donate Australia.

Well they did a phone interview to get the word out about Rani and the serious lack of Organ Donation in Australia.

This morning I awoke to find a link in the comments of my blog that it is in the paper today.

We thought we were going to be told..but I have just rang John wh is heading to Tasmania and he said he has heard nothing...as after he did the phone interview he was told that their was no guarantee that the story would run...

but anyhow here it is...

Rani's Story

Radio

Well our story is slowly being heard.

John sent an email off to 3AW as that is the station he listens to...he got a call yesterday saying that they would put him on the radio....well anyway he was on the radio today talking about Rani. It was in relation to the upcoming Transplant Games and they had a lady from the Red Cross discussing the importance of Organ Donation and then John was the flip side discussing what happens when that all important organ doesn't arrive in time.

It was only a really small bit at just before 3pm today...but it was something and John did really well on the Radio.

ANGRY!!!!

I am feeling so many different emotions today. Today is the day the 'normal life' resumes again! Kids go back to school, grown ups go back to work and I am left at home with my thoughts.

I am miserable but so angry.

Angry that this disease took our babies life.
Angry that she spent half her life in Hospital.
Angry at the people that said NO to life saving organ donation.
Angry at the system for Classification for Transplants.
Angry that she missed out on livers, by no other fault than the wrong blood type.
Angry that Rani became sick enough to be a CAT 1 but was then to sick to be transplanted.
Angry that more people don't donate.
Angry that she was in so much pain.
Angry that she was stuck in a cot and never leaving her room unless she was in ICU.
Angry that she spent her last 5 months confined in that room.
Angry that she never got to speak, crawl, walk, LIVE!
Angry that she is gone.
Angry that we did everything the Hospital asked and still we didn't get to take our baby girl home.
ANGRY that she never got that life saving liver.

We don't blame the Doctors, Staff or the Hospital. They can't transplant what they don't have. We are just very frustrated and disappointed. We feel very naive that we thought a simple liver was the answer and we would be home with a happy healthy baby. That having Rani in the Hospital was the best place for her and that she had a better chance of getting a liver being a in-patient rather than at home.

We will have 'what if' questions for the rest of our lives.

BUT i do believe that ALL AUSTRALIANS well everyone needs to be educated on the importance of Organ Donation but even more importantly you need to discuss your choice with your family, friends, loved ones as at the end of the day they are the ones that have to make the heart breaking decision.

PLEASE DON'T LET ANOTHER FAMILY GO THROUGH WHAT WE HAVE. Discuss Organ Donation.
www.organdonation.org.au

A Beautiful Farewell

Well yesterday was beautiful and Princess Rani even held off the rain as it is horrible here today but beautiful yesterday.

I was so not looking forward to the funeral even having to have a bucket in the car to get to the Chapel (but that is another story).

Lilydale Crematorium is absolutely beautiful...we booked it site unseen but had been told by others that it is lovely...not something you really think about.

The chapel was full for our Princess and very simply decorated with 12 pink balloons next to her little coffin.

We were lucky enough to have the lovely Hospital Chaplain Keith do Rani's service as he knew her very well coming and visiting her every day in the Hospital.

Everyone from our Families placed a little something on Rani's coffin...her favourite things. I placed her mirror, John placed a dummy, Josh and Teagan placed pictures and the most beautiful letters, my Mum placed her favourite doll (that she gave her), my Dad placed her its all about me, me, me birthday shirt, my sister Rebecca placed her Peek-a-Boo book (that she bought her), my brother Steven placed a face washer and special flower that he made her that was on her cot, John's Mum placed a favourite Teddy and Johns Dad placed the doll she played with when she was in the car.

Keith spoke about her life and his experiences with her, then John did a speech, then my brother Steven did a speech about all her little quirks and favourite things..that a lot of the Nurse got a smile out of....and then Rebecca read a poem that her and her best friend wrote. We had a beautiful powerpoint presentation that we made of 50+ photos of Rani, some prayers from Keith and then the final prayer was written and read by Johns Dad.

Then we left the Chapel to Hi-5 songs...Rani's favourite.

Finally we let off the 12 balloons one for each month of her life and they floated off to Rani, they went so far that we could no longer see them.

THANK YOU to everyone for all the support over the last year not just for John and I but for all of our family. Thank you for those who flew in from interstate, those from the School Community, from the Hospital and all of our family and friends for being there to farewell our Princess.

THANK YOU to those who could not make it that sent there thoughts and all of the pink candles that were buring for Rani that I see on Blogs...Thank you.

Thank You Terrance for making the Beautiful Thank You cards and supplying the balloons and Roses.

Thank you Sally and Sandra - you know what for :)

Newspaper Announcements

Here are the Beautiful Notices that were in todays paper.

Truly dreading tomorrow - we have spent the day finalising a lot of details and both Josh and Teagan wrote beaytiful notes to put on Rani's casket with some of her favourite toys...so emotional today, can only imagine what tomorrow will be like.

MILLAR. _ Rani Lesley Jean.
Born Aug. 25, 2005 passed
away peacefully Sept 1, 2006.
Rani Lesley Jean Millar, loved
daughter of John and Melissa,
cherished sister of Joshua and
Teagan.
Princess
You will rule our hearts forever
All our love
Mummy and Daddy.

MILLAR. _ Rani Lesley Jean.
Adored granddaughter of Gail
and John.
Our darling Rani, you were in
our lives for such a short time
but you touched our hearts in a
special way only you could.
Poppet, we will love and miss
you forever, hugs and kisses.
_ Nana and Grandpa x x


MILLAR. _ Rani Lesley Jean.
To my precious niece Rani who
stole my heart with your big
beautiful eyes. You will be
deeply missed. Lots of love.
_ Your Auntie Nelle x x


MILLAR. _ Rani Leslie Jean.
From the first moment I met you
you crawled under my skin and
found your way into my heart,
and that is where youll stay.
Take care my little Buddah
Love _ Uncle Stevie x o


MILLAR. _ Rani Lesley Jean.
My little Angel, your amazing
spirit and cheeky smile will live
on forever in my heart.
Ill miss you beautiful
girl...mwah x x All my love,
Auntie Becca.


MILLAR. _ Rani Lesley Jean.
We will wait for the moment
when we will be together with
Bubbles for eternity. Beloved
granddaughter of John and
Colleen Millar. Niece of Brent,
Karen, Paul, Nicole, Mark and
Grant.


MILLAR. _ Rani.
Your time here was short, but
your memory will be ever-
lasting. Rest peacefully little
one. Deepest sympathy to the
Millar and Percy families.
Geoff R.


MILLAR. _ Rani.
A little angel in heaven, she
fought till the end.
Love _ Carolyn and family.


MILLAR. _ Rani.
A little angel on earth now in
heaven. _ Sadly gone but
always remembered by Sylvia,
John, Michael, Erin, Luke,
Daniel and Liam.


MILLAR. _ Rani.
Our thoughts and deepest
sympathy to Melissa, John, Josh
and Teagan. No more pain and
no more suffering. Now theres
another little angel.
_ Alan, Janis (dec.), Lee,
Megan and Heath.


MILLAR. _ Rani. Dearly loved
great granddaughter. Loving
thoughts are with Melissa,
John, Joshua and Teagan.
In my heart forever, Nana


MILLAR. _ Rani. Our deepest
sympathy to Melissa, John,
Joshua and Teagan on the loss of
their beautiful Rani, she will
never be forgotten.
Chris, Wayne, Nicole,
Samantha and Michael.

Of course they looked much nicer in the paper...with a beautiful cherub to start them all off.

Thank you again everyone for your wonderful and kind thoughts...I am so touched that those who can't make it are lighting a pink candle for our Princess...it is a beautiful thing to do.

Well Mum and Dad's house is starting to look like a florist...we have so many bunches of flowers Mum had to borrow some vases from the lady next door...lol...but Thank you they are all beautiful.

Funeral Details

Friends and Family are invited to celebrate the short but wonderful life of our beautiful daughter Rani Lesley Jean Millar at the Lillydale Crematorium.

Rani will have a service starting at 3pm sharp on Tuesday 5th of September so if you could be there at least 15 minutes earlier it will be appreciated.

Please be aware that we are asking everyone NOT to bring flowers as the funeral director will be collecting donations that people may want to make which they will give to the Royal Childrens Hospital on our behalf and the details for the wake which will be held in Vermont South will be announced on the day.

The details for the Crematorium are

Lilydale Cemetery & Memorial Park
126- 128 Victoria Rd Lilydale VIC 3140
ph: (03) 9739 6244

For those that are interested Rani's Heartfelt Death Notice with be in the Herald Sun on Monday :(

THANK YOU

Thank you everyone for all your lovely comments here, via email and SMS. Rani was definately a special child that touched everone whether you had met her or not. It is heartwarming to know that there are so many people that cared for our sweet little princess. Also Chrissy thanks for the flowers they are beautiful.

Well today was a gut wrenching day...we had to tell Josh and Teagan about Rani, as they spent the night with friends. John and I decided that we didn't want them to see Rani in ICU, instead they have the happy memories of her on her birthday. We thought they could handle seeing Rani but not understand or handle everyone in tears and so upset, the situation was overwhelming for me, I can only imagine how they would feel if they were in the middle of it... they didn't need to see that..They took it fairly well, as well as can be expected. We simply explained that Rani's body couldn't fight any longer and that she wasn't in any pain, her passing was peaceful. It was only seconds from when the machines were turned off to her passing, and as the Docs told us it would have happened even with the ventilator on. My baby held on long enough for me to get to the Hospital and say my good byes, with my Mum, Dad and my Brother.

Also we had the Funeral Director come out to make arrangements...something again that I never thought we would have to do...but it looks like her funeral will be on Tuesday. Just waiting for a call tomorrow to confirm that where we want it can fit us in.

We also tried to donate some of Rani's organs (even though at the time I thought it totally unfair, that we should have been recieving a precious organ, not donating), but unfortunately her organs were all to damaged and she couldn't donate anything. BUT please make sure you are on the Donor List.

I hope all the Dad's have a lovely Fathers Day...I am hoping that we will be able to have some laughs...although they are coming more as we remember the good and happy times we had with Rani.

No Words!

Well I think this is the hardest thing I have ever had to type.

As some of you already know, our brave little princess could no longer fight and lost her battle with her disease at 3.50pm today.

Unfortunately last night her kidneys started to fail and then this morning they had again failed completely. Then in the afternoon she had another bleed filling her lung with blood. This bleed was the main cause for the Doctors to ask us to make the heartwrenching decision to take her off the ventilator (something I could not watch) but she is no longer in pain.

Thank you everyone for all your support (and I'm sure continued support) through this time in our lives.

I am to upset to type anymore.

More Baby Steps

Well more and more drugs seem to be disappearing from the mountain of pumps she had set up.

Since my last post she has come off another one of her adreniline drugs....(she was on 3) and is only on 0.25ml per hour on the last one...so hopefully that will be off by tonight and the only other major drug is for her blood pressure.

She is of course still on the ventiliator and unfortunately her lungs do not seem to be getting any better but they have turned the oxygen level up but the oscillation has stayed down.

And she is also having Lasix, Albumin, antibiotics, Lipid, Morphine, can't remember the name of the muscle relaxant that is keeping her in a drug indused coma...but I don't count those...as she was having most of these (except the morphine etc) upstairs so we are used to having them....so out of the 17 pumps for drugs she started with now there are only 8 i think.

They were talking last night about putting her back on dialysis but when John rang this morning he said that they are happy with her output so are leaving her for now.

She is also handling the suctioning better to as her stats would drop dramatically every time they did it.

Last night she did have quite a high tempreture 38.8 and they did another blood culture to see if it was caused from an infection, but so far all cultures have come back negative.

As much as this all sounds fantastic we are still no where near out of danger and she is still serioulsly ill and could turn at any time, but she is closer to becoming a little bit more stable to be able to handle a transplant.

So the Docs are still being very precautious but we re just trying to enjoy every baby step she makes.

Baby Steps

Well another roller coaster of a day today.

When we got in this morning her blood pressure was down and they had to turn her oxygen back up.

But they thought that some of it may have been caused by low platlette count and as soon as they gave her platlettes her blood pressure picked up.

Then when the Docs came in for their rounds they were happy with some test results and put her oxygen down from 50% to 40% and also turned the occilation (speed of the vibration in the ventilator) down.

They also drop her adreniline down and told us (as we also noticed) that her kidney function was somewhat better.

John and I left fairly early today, so we could set up our bedroom and also pick the kids up from school as we hadn't seen them since Saturday as they had been staying with friends. Plus they also had their school play tonight, so we went and saw them in it and it was great to spend some time with them.

So Mum, Dad, John's Parents, my brother and sister went to the Hospital at different time tonight.

So she has continued to make some more baby steps from when we left.

They have now completely turned her adreniline off.
They dropped the occilation rate of the ventilator down again.
They turned the Octreotide off (the Meds that is used to prevent her from having a bleed)
Also last night they let the balloon down as they don't think she will have another bleed...well hope anyway
She also had lots of different blood products today.

So we still need quite a lot of things to improve just to get her close to a liver transplant and we certainly are not out of the woods...but we like to believe that this is a good sign...any sign is good at the moment. So we are praying hard that it continues and Rani proves to everyone what a fighter she truly is.

I have probably spelt all the medication wrong...but I am sure you know what I am trying to say...lol

Thanks for all the wonderful comments here, via email and SMS...they are truly appreciated and obviously Rani is starting to listen :)

Quick Update

I sit here typing this from the RCH Resource Centre.

What a roller coaster ride we have been on for the last couple of days.
Since my last message we were woken at 5am Sunday morning to a phone call informing us that they were putting Rani on a higher level ventilator. 2 hours later we got another phone call to say that her kidneys had failed and that they needed our permission for a surgeon to put her on dialysis. We were straight up showered and into the Hospital.

It wasn't a very good day Sunday...lots of tears and not very positive as Rani was so sick they didn't think she would make it through the afternoon. BUT (without boring you with the horrific details) our little fighter at about 8pm started to turn around a bit, after being given 2-3% chance of survival for the first time all day there were smiles and John and I actually felt hungry...lol. We had my mum, dad, brother and sister with us for support all day and Johns parents are arriving tonight from Brisbane.

Plus of course the support of everyone with their SMS's, phone call, messages etc.

Today was another stressful day with what we thought was little steps but positive being quashed by her specialist and he arranged a meeting with the Transplant Surgeon, Transplant Co-ordinator and ICU Docs to work out what do with Rani - whether or not it was worthwhile continuing with all the meds. Thankfully they have decided she is worth it and that the little improvements are improvements and they are going to reassess her on a 12 hourly basis.


So in no way are we out of the woods, and Rani is still seriously, seriously ill...but making baby steps towards getting better.

So please keep your prayers, thoughts, fingers, toes crossed because we are sure it is all helping.

I hope this makes sense...i am emotionally and physically exhausted.

ARGH!!!!

What a day.

Started out fine..John went into the Hospital this morning and I stayed home and hung out with Josh and Teagan then at about 2.30 we headed into the Hospital.

Rani was still in a very restless state but John told me that she had had a solid 1.5hrs of sleep, as she didn't sleep really well the night before.

So the kids went home with John and I tried to settle Rani, but her oxygen levels were dropping and her heart beat was increase and her respiration rate jumped from 60 to 80....so our Nurse had the oxygen blowing on her again to try and bring her levels up.

Later in the afternoon a Nurse that had recently left RCH came in to see Rani and give her a birthday present as she worked yesterday and she only got to see restless, upset Rani. Rahter than the happy girl she was used to looking after.

Not long after she left Rani's mouth started to bleed, she is teething...but because her platlettes are so low her blood doesn't clot so it was lots of blood. Then when I looked in her nappy there was blood there as well. So our Nurse decided to ring the Docs to come and see her. The blood in her nappy was from nappy rash and again not clotting. While the Doc was looking in her mouth to try and work out exactly where she was bleeding from Rani was tossing and turning and generally trying to get away from the Doc...and then she just stopped breathing. After firstly telling the Doc she wasn't breathing, then rolling Rani from her back to her side and another 2 times telling the Doc she wasn't breathing, our Nurse suggested the MET call. I had some lovely Nurses giving me cuddles and support which was really appreciated.

Then a MET call was called for Rani's room and the other Doc that was at the Nurses station came in and started bagging her with the mask and bag to try and get her breathing again. ICU charged upstairs and took over and suggested that she be taken downstairs to ICU and intubated. I quickly called John and Mum and John dropped the kids off at Mum and Dad's and rushed into the Hospital.

Once we got down to ICU I was asked to leave while they stabilised Rani and intubated her. First they paralysed her so one she wouldn't feel anything and two so that they didn't have to worry about her moving. Then they put a special tube with a balloon at the end down her throat incase her varices bled, then the ventilator tube. Topped her up with blood, platlettes, vitamin K and lots of other meds. Put a catheta in and also a main line (i think) into an artery in her arm to better manage her blood pressure and other stats.

About an hour after we came down to ICU we were allowed to see Rani and if you ignored the blood on her face and the tubes coming out of her mouth she looked like she was having a beautiful sleep. It was really nice to see her tummy going up and down so nicely without the puffing and straining we usually see.

We are sure that she is now Category 1 nationwide for a transplant, but when we left at 1.30am no one could confirm that it had happened so something we will have to chase up in the morning.

I hope this has made sense it has been a very emotionally draining day. Thanks for the SMS's and emails.

Final Birthday Update :)

Well today was good and bad.

Rani wasn't particularly happy...moments of semi happiness but all the poor girl wanted to do was sleep and people came in all day...lol

Here is Rani in her special Birthday T-shirt that Nana and Grandpa bought her.
Front







Back













She spiked a tempreture of 38.3 at lunch time and then it came down again. Then later on in the night it spiked back up to 38.3 and they are fearing that she may have an infection in her Central Line which would not be good. So they have ordered bloods to culture and to be safe are giving her a course of antibiotics.

Well after having a little party and cake with the Nurse. My sister Rebecca turned up first, then Mum and Dad with Josh and Teagan, then my Brother Steven and later on Panfilo and his family.

OK the presents we gave Rani..it was really hard to find suitable presents and both the presents that Mum and I bought her weren't really for the Hospital so she can have them when she is home so we each bought her something for her to open in Hospital.

From John and I








From Josh and Teagan (can you see a Dora theme...although we think she has the colourings of a liver kid...lol)








From Mum and Dad













From my sister Nelle (who sent them from London.)
Paddington Bear and 2 T-shirts from Baby Gap







From my brother Steven
A piano and also a mobile phone.











and from my sister Rebecca
a Pig book



and



a special Bear that sings happy birthday :)








Hope this all makes sense...I may update more tomorrow when I am more awake.

Thanks again everyone for you emails, blog comments and SMS birthday wishes for Rani :)

Presents from Cyber Aunties and Friends

From Rach
Funny thing is that I nearly bought this Dora Puppet for Rani :)






From Connie








From Tess








From Tassie Deb








From Anna








From Janet and Terry







From her Specialist the snoring bear and from Tess then frog.








From Panfilo and Marissa

Her first Collingwood Scarf and a Collingwood Toy. They came in tonight to see Rani.





Sorry Terrence and Livia...my photos of your presents are to dark will take another pic tomorrow.

Thank you everyone for all the presents they are really appreciated and will be treasured.

All in all you can see she was one spoilt little girl.

Oops I forgot about the 2 Nurses that also bought Rani seperate presents...a lovely wooden butterfly castinet (sp?) and Jane got her a beautiful pair of shoes. :)

If I have forgotten anyone I am sorry it has been a long day and I am very tired.

HAPPY BIRTHDAY

PRINCESS RANI

I am still in shock that my baby is 1 today.

Everyone is so quick this morning with all your birthday wishes here and via email.

Thank you.

Am about to go to the Hospital and will share photos tonight.

Well wasn't my Princess spoilt rotten today.

First of all I had a bag of presents from 'cyber aunties - Rach, Connie, TD and Tess, plus presents from us. Then we got a delivery of a present from Anna, then friends (Terrence & Livia) of ours sent a delivery of a toy and balloon.

We walked into the room to find this stuck to the Blind in Rani's Room - Thanks Bridgette, she had made it for her on night shift. :)

Then she also got a present from her Specialist and a Resident that used to work with Rani.

Then at 1.30 all the nurses came in and sang Happy Birthday to Rani and they also bought in Cupcakes (Thanks Rhiannon), Muffins (Thanks Chels), Truffles (Thanks Jess), Rocky Road (Thanks Jane) and lollies, soft drinks, chocolates and lots of stuff (sorry can't remember who bought what but Thanks.)

Then to our shock they present Rani with a Present...a mobile for her cot and they had all signed a frame and here is a photo of everyone that I am going to put in the Frame. Plus a pic of the present :) THANK YOU

Another post to show more photos is coming.

Tomorrow

my baby is 1!!!!

Thank you Tess, your present for Princess Rani arrived today.

Well I don't think it is going to be a very 'happy' birthday for Rani, she really is not happy and so restless. She doesn't kick her legs, not awake very often and just rolls from side to side trying to find a position that is comfortable to sleep in. Not many smiles are happening either...perhaps one or two in a day...so I don't think there will be much happiness from Rani at all tomorrow.

While Mum was there this morning her Specialist bought in the Surgeon that will be preforming Rani's operation to see her. As last time he saw her she a tiny 7kgs and as he makes the decision (with others) as to who gets the liver, the Specialist thought that seeing her now would be a better image in his head when it comes time to decide who to give the precious liver to.

His comment was 'She's ready now'...scary!!! but also something that we have known for a while.

Plus the Surgeon also told the Transplant Co-ordinator to up Rani from Category 2 Vic to Category 2 Nationwide (all of Aust and NZ). Which is good but scary as it means that things are faling and quickly.

So I have made some cup cakes for tomorrow, wrapped presents and have one more batch of cup cakes to make.

Also got the other 2 ready for their dress rehersal for their school play tomorrow. Mum and Dad will be picking them up from school and taking them straight to the Hospital to see Rani.

So hopefully I can either have some happy smiles birthday pics or update you all that she got the birthday present that we have been waiting so long for.

2 more days!!!!

but whose counting...lol

I am still in shock that it has been a year since I had Rani, even with all the dramas that have gone on in her short little life, it still doesn't feel like a year.

On this day a year ago I had just found out that I was going to be induced in 2 days..lol

Well Miss Rani wasn't in much better of a mood today. Thanks to the Lasix she had dropped 120grams, but her belly was still swollen to 59cm, so they finally gave her some Codine so she could get some relief. That is one of the most frustrating parts of liver disease, she can't really have meds like Panadol to relieve pain as it really mucks around with the liver, but fortunately she is occasionally allowed Codine and she makes me laugh so much when she gets it, as she looks high as a kite...lol

They are going to check her bloods from today and probably give her a blood transfusion tomorrow and more Lasix to try and get her belly down. It has just got to be so uncomfortable for her...the poor girl screams in pain when you change her nappy. So I guess there will be no sitting up and opening presents on Friday.

I am going to bring her rocker into the Hospital on Friday as it is adjustable and she may be able to semi sit up to open her presents. It will be better than lying on her back...i guess anything is better than what she does all day.

Well the Nurse I think have started a bad habit with Miss Rani...lol. They take her ever growing amount of dummies (leaving one of course) and put them in the freezer. Rani loves to suck on the frozen dummy, it must feel great in her mouth. As she in Nil via Mouht her mouht gets so dry and she loves to suck on a wet face washer, so I am guessing the cold dummy feels fantastic.

Well I guess not a lot more to add...I am making some cup cakes tomorrow to take in on Friday and we are secretly hoping that she will get the call on Friday night. Or probably because we are arranging things for Friday it will happen Thursday night...not that that would really break our heart...lol

3 more days!!!!

Well it is on the countdown..only 3 more days until Rani is 1!!! Thank you Rach, TD and Connie for the birthday presents you have sent down for Rani. I will take picture of her on Friday opening her presents from you all. :)

Well today wasn't a great day for Princess Rani. She was pretty miserable and she had every right to be today. Her belly was bloated up to a huge 59cm and it was so hard, it must be so uncomfortable for her. Plus she put on 250 grams in one day...which is just ridiculous...ballooning her up to a massive 10.5kg. They finally today took some calories out of her TPN...something that has been in discussion for over 2 weeks, so hopefully this will help. And after a discussion with her Specialist this afternoon it was decided that she needed an Albumin Transfusion with Lasix to try and take some of the bloating out of her stomach. Then to top of my day as I was getting ready to leave as my sister does Tuesday nights Rani started acting like she was going to vomit. I rolled her over on her side and was holding her arms when I notice blood coming from the corner of her eye...just like a tear drop. I buzzed for the Nurse and my sister grabbed one while I stayed with Rani. It was only a small amount but still scary to see blod coming from her eye. A Doctor was paged and he did a couple of test to check her vision and it seems fine...so yet another thing to keep an eye on.

I am hoping that the Transfusion does the trick and we have a happy girl tomorrow.

Oh yeah before I forget. When I got to the Hospital this afternoon this is how I found Rani. Mum had tied her hair up...it is the first time it has been tied up.

Thanks everyone for your lovely comments that you leave on my blog...they are truly appreciated. :)

5 More Days

I can't believe that in 5 days Rani will be 1. It is lovely that some of the Nurses that aren't working on Friday are coming in to see Rani on her birthday. I think it is really special of them.

Well Buddah is now a HUGE!! 10.18kg can you believe it. We are over the 10kilo mark and at the rate she is gaining weight she will be 11kilo in about a week. They are looking at ways to cut back her weight gain, as she is not growing...just getting fat!

Well she is still in a pretty good mood, very sore in the stomach, grimacing everytime we have to change her nappy or move her. So not really many cuddles to give her as it just hurts her to much. I think she is getting very frustrated as her belly is so big and bloated and sore she can't move very much and can't get at toys in her cot and she gives out a frustrated yell so we can grab what she is trying to get.

Her latest thing she has learnt is shaking her head no. Everything is no...you will be talking to a nurse and she shakes her head no..it is very cute. Although I asked her if she loved mummy and she grunted...mmm..so at least she didn't say no...lol.

We are still on one on one Nursing during the day...'just in case' with the horible scary cart as I call it...it holds everything that is needed if she has another bleed...and touch wood it won't be needed again.

Well we have been madly packing up the house as we move in a week...but I keep getting distracted as I am packing up my scrapping stuff, finding things I forgot I had...so of course I have been scrapping..hey I need a break every now and then...lol.

Well I better be off to bed as both Josh and Teagan are competing in a Basketball Comp tomorrow and have to be at school at 8.30am.

Night all.

Thank you Marilyn

Well I went to the PO Box today and was handed a huge parcel. Thought it was a present for Rani but when I opened the card it was addressed to John and I.

Thank you Marilyn for all the presents . Not only is there a beautiful blanket, healing angel and the cutest froggie slippers and toy she also put magazines in for Josh and Teagan.

So thank you, thank you, thank you...it is truly appreciated. The blanket will look fantastic in Rani's cot when she comes home.

If someone has Marilyns email addy could they email it to me, as I don't have it :)

Also while I am on the Thank you's I don't think I thanked the lovely girls from both Aussies and Memories and More who have each sent me a mini album with beautiful and touching pages in them. THANK YOU. I am sure Rani will treasure them when she is old enough to understand.

Not much to update on Rani. She is doing a lot better no more blood vomits and she is still fat and happy, so awaiting that liver and counting the days until her birthday. Can you believe that in a week my baby will be ONE!!!!

A Bit Better Today

Today started a bit scary with Rani vomiting a huge blood clot up, but thankfully that was it, nothing else came up. She wasn't very happy this morning. Crying in pain and it is so hard to know what is wrong as she can't tell you. She is not a sooky child, for her age and what she has gone through I am in awe of her strength. So when she cries you know there is something wrong.

But by the afternoon she had had a semi decent sleep and had perked up. She is still into kissing and was grabbing some of her toys and kissing their faces.

I still can't believe that in 9 (well almost 8) days my little girl will be one and unfortunately have to spend it in the Hospital. We really had hoped that she would be home and healthy before she turned one. None of us had any idea that it would drag on for so long and because she is connected to so many different things we can't even take her out on a day pass. :( I guess she will be having two parties one in Hospital and a big one when she is home.

AGAIN I missed Rose and her Dad...but John got to meet them. Rose had a liver transplant in 2004 and had the same condition Rani has and a lot of the same problems. The Hospital actually gave us there phone number and email addy and they have been a great support. Lynne (Rose's Mum) leaves messages on the Blog regularily. I got to speak to both Rose and Shane on the phone...one day I will meet them.

So basically we are still waiting, waiting, waiting for a liver. Hoping that Rani stays 'stable' - a word that I am beginning to hate hearing. Stable but going down hill as this is all part of Biliary Atresia - HA!. It is frustrating to hear everyday and added that they can not do a lot more to help her until a liver comes. I guess the most annoying / frustrating part is constantly being told / reminded how seriously ill Rani is - like we are going to forget!..I mean everyone holidays at the Hospital don't they?

Well last night I scrapped...as I said it is a great way to escape into another world almost - a welcome distraction from waiting for the phone to ring. As John said to me this morning we need a liver to come in so we can sleep a full night, instead of worrying that the phone will ring for either a liver or that she has to go to ICU again.

Here is the LO of Rani and Daddy.

We are back!!!

At 3.15pm this afternoon we were taken back to 5W. Rani missed all the excitement as she was in a deep sleep not waking at all though the banging of the cot from ICU up to 5W. But it was great to see her sleeping so soundly, as she has been really restless lately and not going into a full sleep so being cranky and tired.

Her Nurse noticed that her stats had dropped a bit from ICU she was breathing hard eve though she was sleeping and her oxygen levels were sitting at 90%..so she put the oxygen mask near her face and they picked up but she called the Gastro team to come and see her.

They came down and when they pulled the oxygen away from her face her stats went down again, so they ordered an x-ray to make sure there was no fluid on her lungs. She struggles to breathe already due to the pressure of her hardened liver and enlarged spleen pushing on her lungs. By the time we left tonight we hadn't heard anything about the results. Here is happy Rani back up at 5W and loving all the attention from all the Nurses welcoming her back

But on the bright side when she woke up she was so happy. Her latest thing is making the kiss noise. She loves doing it at pictures of herself (such a vein girl..lol) and Rebecca and I were getting heaps of them tonight. She was laughing and moving and squirming. None of us have seen her move so much in ages, she was twisting around and turning herself almost sideways in the cot..it is so good to see her active. :)

Her weight is now a massive 9.904kg..lol...she is so chunky..lol..but her belly is up to 57.5cm so that is not good...but as I keep saying hse is happy and that atm is all I care about...of course healthy would be great but I am happy to have happy until the liver arrives.

Then John bought in Krispy Kremes for all the Nurses tonight. He went up to Sydney today, so he knew he had to stop off and get some KK at the airport or be killed...lol...the Nurses loved them...the one box her bought in was gone in seconds...lol

OK so here is a LO I did the other day. i am so glad that I found this hobby...it is great to scrap and get taken away with what I am doing. A most welcome distraction from reality...plus it is like keeping a really pretty diary...lol.

This LO is of Rani she always tries to grab the camera like she wants to take the photos not be in all o them. :)

Quick Update

OK I am about to walk out the door to go to the Hospital so for all you serial checkers I thought I would let you now what has happened since last night.

Mum has called me from the Hospital as she did mornng shift...Rani is still in ICU but being moved back to 5W this afternoon.

She has had a couple more blood vomits but is being giving transfusions of plasma, blood and Vitamin K and other things I can't think of atm to help with her clotting and try and stop the bleed. Thankfully again she hasn't had another vomit since 11am.

So that is all i know for the moment...so I will update when I get home tonight when I do shift change with my sister...lol

OMG!!! & THANK YOU

Well what a start to the day. We thought we were in for a sleep in this morning as Josh and Teagan had a curriculum day off school. Well that was not to be!

Mum rang me this morning at 9.30 (i was awake just not out of bed...lol) to tell me that she had walked into find Rani vomiting blood. Something that we have been warned about for months but never thought it would happen. She pressed the Emergency Button on the wall and then the Nurses called a MET call. Another thing that we never wanted to hear for her room.

Poor Mum was left to deal with all the Nurses, Doctors etc, plus of course seeing her Granddaughter vomiting blood. We were on our way - but it takes 30 minutes to get to the Hospital.

When we got tot the Hospital we found Mum sitting in the Foyer of 5W with the Chaplain Keith, so we left the kids with them and went to the room. There were so many Nurses but when they saw John and I they made room so we could get to her bed. She didn't look to bad, although through tears I could see her legs kicking - so I felt a bit better.

Eventually once they had settled things down a bit she was taken to ICU. Thankfully she stopped vomiting blood at 11am and didn't have another episode for the rest of the day. She had wto blood transfusions and lots of other medication to clot her blood, but she remained pretty much stable most of the day.

We took Josh and Teagan into ICU to see Rani once they had cleaned her up and they said there good byes as did Mum and then she took them home with her.

We were happier when she grabbed for a wet face washer, knowing that she was starting to feel better. They are keeping her in ICU for the night...we would have been back up at 5W but an overnighter is staying in her room. So both John and I were happy to come home when my brother came in at 7pm tonight.

A HUGE THANK YOU to everyone that has SMS'ed, left emails and comments on my Blog...it is truly appreciated that you care so much about all of us. So THANK YOU THANK YOU THANK YOU

Well...

not a lot to say today...Rani is still in the Hospital and still classed as 'stable' and of course still waiting for a liver...lol...but STILL happy so that is a bonus.

So here are some boring statistics I was thinking of last night.

On Monday Rani will have been on the Transplant list for 12 weeks.
On Wednesday Rani will have been in the Hospital (this stay) for 17 weeks
In 13 days Rani turns 1
In 14 days we move...argh!!!
In the 4 months Rani has been in Hospital she has gained 4.32kg
In the 4 months Rani has been in Hospital her stomach girth has ranged between 47cm to 56.5cm

So I thought I would share some LO's that I have done lately. I have really enjoyed scrapping this week :)

TFL

Well...

it is amazing what some Albumin and Blood can do for a girl...lol...Miss Rani is almost completely back to her happy self again. At least we are getting smiles..she is still very tired but smiling and that is what is important to us.

She had an Albumin tranfusion Wednesday, a Blood transfusion Thursday and another Albumin transfusion today. So obviously lacking these essential things really throws her system out and makes her grumpy...lol

Well she is now a massive 9.82kg and has had the calories taken down in her TPN as everyone agrees that she is now putting on the weight way to quickly...so she has kind of been put on a diet..lol. I still can't believe that in the 4 months we have been in the Hospital she has practically doubled in weight.

Well the countdown continues a tiny 14 days until Rani is 1...our wish is still that she gets a liver before her 1st birthday.

Did you see 7 News on Thursday..they had a report about the upcoming Transplant Games in Geelong this year and also a push for Organ Donation as only 80 people have donated their organs this year. So if you are not a registered donor make sure you register.

My little baby broke my heart tonight. My sister came in and when I said 'bye bye' she burst into this really heartfelt cry with tears and all. For anyone that knows Rani usually when she cries there are no tears and to hear the cry and see the tears broke my heart. I felt so bad I had to sneak out of the room while my sister played with her.

Well Josh has just come home from the school disco..Teagan went earlier and when hers finished Joshua's started. So off to see how his night was.

WOW!!!

OK so I haven't updated for a couple of day...but NO still no Liver...lol.

Sorry I had to change the settings to only registered members leaving comments due to stupid spammers having nothing better to do with their lives than leave junk comments on my blog.

Lets seeI came home from the Hospital on Monday night to find a parcel sitting on my bed. It was from the beautiful Robyn. Inside was a beautiful top and some socks for Princess Rani. Thank You they are gorgeous.

Well Rani just doesn't seem as happy anymore. She is very restless and won't sleep, she tosses and turns and just can't find a comfortable spot to sleep. So this is what she does most of the day trying to sleep and not smiling at anyone. Mum and Dad went in on Monday morning..this is the way Dad now spends his RDO's...lol and not even a smile for Grandpa. I eventually got a little smile at 8pm but that was it.

Her extra does of Lasix helped a bit and she lost 110grams but had put it back on by the following day (Tuesday). So on Tuesday she had another Albumin transfusion and Lasix in the middle so again it should clear some of the excess fluid. But her belly is going up by about .5cm each day and it is so hard. If you put your eyes at stomach level on Rani you can clearly make out her liver and spleen they are huge and just so hard...it must be so uncomfortable for her. It is so hard to watch her in this pain and not be able to do anything to get rid of it :(

Well Census night has come and gone and it was a bit sad to fill in the part about Rani not being home, but last night I got a call from my sister saying that Rani had her own form to fill out and that if it was alright for her to sign it...lol

Can you believe it last night I actually scrapped...this is my first LO for August and first one for weeks. I love and hate this photo, it is great to see her happy as it was taken not long after we got out of ICU and it had been a long time since we had seen smiles...but hate it as it shows up her yello eyes, her scratch face and yellow skin....all things from the disease that I can't wait to see disappear when she gets a new liver.

Oh yeah on the scratching side we worked out that it was her wrist band that was cutting her face. She has no fingernails as they are cut every 2nd day, but we were watching her on the weekend and when she scratched at her face she rubbed her wristband on it as well and when her nose started to heal we noticed that they were long scratches. So her band is now on her ankle and no more scratches have appeared on her face. :)

Well last night when I was going through photos to scrap I found some early ones of Rani when she was first admitted. Check out the difference now...to think we struggled so long for her to put on weight and now she is gaining to qiuckly...lol. So in the 4 months...yes today is officially 16 weeks in Hospital, she has practically doubled in weight.

19 Days

I can't believe that in 19 days my little baby will be 1 year old. It is sad that she will definately be spending it in Hospital and fingers crossed that before it she gets a liver and is feeling alright to open some presents.

Well the kids and I had a pretty productive day of packing. Finally one thing has gone our way and we are having a hard rubbish collection next week so we can throw out a heap of stuff that we were going to have to get a skip for...so that should save us some money. We are pretty much getting rid of everything in Josh's bedroom as he is almost 10 and tells us that his bedroom is to babyish and that he shouldn't be sleeping in a racing car bed anymore...lol. So just before we move out of Mum and Dad's we will buy him a new bed and furniture as they will be sleeping in my sisters beds at Mum and Dad's. Although Teagan doesn't miss out, she scored a beautiful wooden tallboy that I bought of my sister when she moved to London...so she is happy as it is already in her room at Mum and Dad's...lol

So we went late to the Hospital this afternoon. John took the kids home at 6.30 and I stayed until Rani settled. Well she fell asleep briefly but I thought I would stay for her 8.00pm meds as she sometimes throws them up we feel more comfortable giving them to her slowly and then being there just in case she does bring them up. Not that the Nurses don't do a fantastic job...but hey we are there anyway. So she woke at 7.45pm and decided it was play time until 9.30pm when she finally decided to fall asleep - so I made my escape.

Rani loves her own reflection, photos etc and I took photos of her latest game. She has a large fish mirror in her cot and instead of facing you to look at you she rolls on her side and watches you through the mirror, every know and then turning to make sure you are really there...she thinks it is the funniest thing ever...lol Here is a pic.

Again Rani is gaining to much weight to quickly. Jumping from 9.4kg yesterday to 9.6kg today. So she is having extra Lasix to try and get rid of the excess fluid, so will find out tomorrow if it has helped.

Thank you everyone that has left comments here and on their blogs wishing our little Rani the best, it is truly appreciated that there are that many people out there that care so much and have never met our little Princess Rani. :) THANK YOU!!! :)

Lastely a pic of Rani and Teagan, they were having a lovely conversation :)

Tagged!!!!

Okay I have been tagged by the lovely Sal

1. How old are you? 32

2. How many kids do you have if any? 3 Josh 9, Teagan 8 and Princess Rani 11 months

3. Are you married, single, divorced, widow? Married to John

4. What is your occupation? SAHM who feels like she works for the Hospital...lol

5. What are your passions? family, friends and of course scrapping

6. Are you a dreamer or a dream seeker? I think a bit of both

7. Are you happy with the way you life has turned out? I certainly am, even with all the bumps in the road - i don't think I would change much! Perhaps just a liver for Rani now!

8. Are you a scrapper and if so how many hours a week do you scrap? Most certainly am - when I have the time I try to scrap at least an hour a day

9. What do you want to do before you die? Travel and see Grandchildren

10. What are is your favorite food? Seafood - although at the Hospital I am known for my Fanta and Chicken Chips...lol

11. What is the food you hate the most? Brussel Spouts

12. What is the most embarrassing thing that has ever happened to you? Can't think of anything at the moment

13. What is the happiest day of your life thus far? Having my munchins and my wedding day

14. Are you a neat freak? Or a dirty house cleaner? Not a neat freak - 3 kids make that impossible....but like a clean house :) when it is possible


OK the kids had Jeans for Genes day at school today (a gold coin donation to wear casual clothes and the money goes to research) so I decided that after picking them up from school as they were already in casual clothes we would go straight to the Hospital before my Sister came in.

Rani is still classed as stable and was pretty happy again tonight. She reminds me of a Sumo Wrestler with her chubby face. Again she has scratched her face in a different place and it wasn't clotting to well. Also it must have been in a lot of pain as everytime she knocked it she gave out the biggest heartfelt cry.

Last night she must have lost her dummy as when Mum went in this morning she had a different dummy and Mum found her original under the cords for her TPN. Well she has to have them both now. Often having one in her mouth and the other in her eye. Of course being a scrapper I always have the camera handy although still trying to get used to the DSLR.

So here is Sumo Rani with her sore nose and 2 Dummies...lol and of course Rach her favourite Taggie :)

Today

Another great day with Princess Rani...Mum and a friend of hers came in this morning and then when I came in this afternoon...after being caught in the rain...I felt better with the big beautiful smile I got from Rani.

She is still 'stable' although she is bring up speckles of old blood in her vomit and this horrible green gunk (yep..thats a technical term) probably the stuff that has been sitting in her lungs, as she is not coughing anywhere as much as she was.

Yesterday Mum got a delivery of a toy an thought that perhaps I had ordered it...when I told her it wasn't me, after an internet search and a phone call she found out it was ordered by my sister Danielle in London. It is an adorable big horse. Here is a pic


Also another pic.. Rani loves Hi-5 and she loves holding the television remote/speaker to her ear and bopping to the music.

Although on a downer again we missed out on another liver again the wrong blood type. Rani has the most common blood type and no suitable liver has come up. Hopefully soon, as she is in the best condition she can be in to accept a liver now!

HAPPY, HAPPY, HAPPY!!!!

Well I went in a saw my bubba today, she is so happy. Bopping about, giggling, playing and just so happy. It is so good to see, as she has been so miserable for weeks.

She had another Albumin transfusion yesterday and the Lasix has managed to get rid of some of the excess fluid in her belly as her weight has come down a little bit.

On a good note her kidneys are getting much better as the days go by, so the problem must have been caused with her UTI.

OK so here as some pics of 'Rocky'. Thankfully today there was no need for the gloves and she hasn't managed to scratch the gauze off.

Sorry for the gross pics...but if you look at the one with the gloves on..there is a little drop of blood on her nose between her eyes...that is the tiny cut and all the blood is coming from that one tiny cut...so you can see why they are concerned about her clotting.

Poor Bubba

Well Rani is doing much better. She is so much more active and talkative...well making noises anyway. Even doing her first drawing for Uncle Stevie last night...lol

Unfortunately her blood clotting is 'stuffed'. Part of this disease is itchy skin and Rani loves to scratch at her face until it bleeds - this is because usually this is the only part of the skin showing. Well she has scratched on her nose and it has bled all day. It just wouldn't scab and the poor girl looked like she had been in a boxing match. One of the Nurse started to call her Rocky...lol...
We are still waiting to hear back if there is any medication that can help her clot, as it is a concern to everyone. To add to her Rocky name...lol..the bandaged her hands up to see if that would stop her scratching and she looked like she was wearing boxing gloves, but she would just rub her hands over the scratch and end up with blood on her gloves. So now there is gauze and a clear plastic cover over the scratch to see if she can't get it off, as she was just pushing the gauze off. My camera was left at the Hospital so I will have to upload 'rocky' tomorrow night.

The other concern is her dramatic weight gain...it i so funny we waited so long for her to gain weight and now she is putting it on to quickly. She went from 9.2kg yesterday to 9.4kg today. They think alot of it is fluid but it is to much to put on in one day.

But her cold seems to be clearing and she is breathing much better and the Transplant Co-ordinator told me today that they would be happy to transplant her if a liver came up now, as they were concerned that she would have suffered if they had have had one come in last week. As she will be immunosuppressed the flu would have taken over her body and she would have nothing to fight it with.

A Bit Sad

Well another Club Day has been and gone for Teagan...no awards but Teagan said she had a great day, so that is all that is important.

Again I was sick today, so Mum took Teagan to her Competition and John took Josh into the Hospital. After a quick talk to both Rani and her Nurse, I was saddened later in the day when John rang home. One of Rani's (well everyone's) lovely Nurses was leaving and today. She hadn't let any of us know. So I wished her luck in her new job over the phone, its a shame I didn't get to see her before she left. Sneaky lady...it will be very strange going to the Hospital and not seeing her there.

That is 3 Nurses that we really liked that have left so far...do we smell??l...lol

Of course it had to be the day after John had taken my camera into the Hospital. So he went and asked another Mother (a mother of a liver transplant child) to borrow hers, which she kindly did) and he got some photos for Rani's Hospital album.

So I was doing some calculations last night and as of tomorrow Rani will have been on the Transplant List for 10 weeks. Also on Wednesday it will be 15 weeks since Rani was admitted back into Hospital. I really hope that a liver comes up soon.

Hair, Hair, Hair...lol

Well the Princess is still doing ok..they have put the oxygen back on blowing directly on her as her levels were dropping to the low 90's but she is certainly more alert and playful and much more vocal.

Josh and Teagan came into the Hospital and saw Rani for the first time in a couple of weeks. Of course Nana and Grandpa had exhausted her...lol...and she slept deeply for the first hour and a half they were there but eventually woke up and played with them.

Then after dinner it was off to do the exciting curlers in Teagans hair. She has Competition Day for her dancing tomorrow and they all have to have curly hair. I was a bit concerned about the length of her hair, as she had it cut short after their end of year concert in December, but it was so much easier and quicker. So I think we will keep it at this length from now on. Although I do miss her lovely long hair. I guess it is up to her, as she was the one who decided she wanted the short hair...bugging me the day after the concert...lol

Her are some pics of the pretty curlers...i will share some more pics of club day tomorrow.

She's Back

Princess Rani is back in 5W in her own room where she belongs...well she belongs at home but her second home is 5W.

She is much better in spirits today...Mum even got a smile and a giggle from her and she spoke to me on the phone which of course had me in tears. Well maybe not spoke...lol. She loves the phone and reaches out for it when you are using it...we put it to her ear and she is so cute the way she holds it...she gets so excited and does her pelvic thrusts and smiles at who ever is in the room but only breathes down the line...pretty boring when you are on the other end...but today she actually made a couple of sounds in relation to what I was saying...it was, well to me very exciting...lol

The Nurses at ICU said see you soon as she was leaving, saying that we would probably get the call in the next couple of days...believe me we wouldn't mind...then I could handle her being in ICU.

UPDATE

Lets see since my last post it has been one all mighty roller coaster road with our Princess.

FORGOT TO MENTION - Buddah is now a whopping 9.1kg...not all her weight and as you can see from this pic, her poor face looks likes it is going to explode. Plus here is Mum who is in every day and in this pic you can see all the different tubes pumping different meds into her.I have taught John well he took this pic :)



The good news is that she will be moved out of ICU hopefully tomorrow..it would have been today but there are no beds.

I am guessing this will be short but sweet.

OK lets see Tuesday.

Rani is 11 months old today...I can't believe that in one month my little girl will be 1!

Rani was still pretty much slept all day. They became concerned with her platelet count as it is low and she is not clotting well at all. She was given another Albumin tranfusion. Also it was confirmed that she had a UTI which could explain the spikes in her temperature. She had another chest x-ray and heart scan. They were still concerned about her breathing and she still had the oxygen blowing on her.

Wednesday

Rani seems to be getting better. She was more alert and even enjoyed a bath. They are still very concerned about her breathing as she is panting and taking in to much Carbon Dioxide...they are going to watch her and if it doesn't improve the will have to put her on a ventilator. She is also given more antibiotics and a blood transfusion and platelet's transfusion.

Thursday

Well no need for a ventilator still not 100% but much better than she was. Her spleen is getting huge and ot only pushing into her pelvis but now up her ribs making it even more difficult for her to breathe. But they have taken the oxygen away and seeing how she goes without it. As I said earlier that would have returned her to 5W but there are no beds available. She was given yet another albumin transfusion and a gammaglobulin transfusion to try and help her with her clotting and platelet count. Today we also got a confirmation that she does indeed have a chest infection but unfortunately the bug she has there isn't anything that can be given that magically makes it go away. One of the antibiotics is helping break the phlem off her chest and she is bringing a lot of it up...so hopefully it will continue to clear and she will be finally rid of this dreaded long dragging bug.

So fingers crossed tomorrow she will be back upstairs.

Mum also got to meet a family that have been lovely to us with emails and speaking on the phone to John for hours. They had a little girl that went through the same dramas as Rani and has had her transplant and is healthy and running around. Mum thought it was great seeing them and seeing the outcome of a great transplant.