5th Day - DIET

FAT, CALORIES AND CREON

When we were getting CF explained to us, it was always mentioned how the CF diet required extra fat and calories and salt. I didn't worry about it too much as Ruby was still on intravenous TPN, let alone solids. I envisaged changes like switching from low fat yoghurt to full fat.

That's not quite what they meant.

avocado mixed with Greek yoghurt and grated cheese.

I could feed Ruby McDonalds for breakfast lunch and dinner and get a thumbs up from the nutritionist. I could dip her fruit in chocolate and call it a healthy meal. I could feed her a stick of butter for a snack... ewwwww.......

But I don't want to do that.

So I use other things instead. Here is a typical days meal for her at 9 months old

Breaky: 2 weetbix with chia seeds and milk, or bowl of Greek yoghurt with chia gel.  Vegemite on toast.

Snack: cheese (loves cheese!), avocado, tomato and sultanas

Lunch: meat fingers (made with beef mince, grated vegies, coconut oil)

Snack: baked beans and grated cheese

Dinner: fritata type thing I make in the bowl with egg and vegies and cheese and microwave. Washed down with a drink of Hydralyte

Desert: chocolate (plenty left from Easter still!)

Plus 3 - 4 bottles of fortified formula per day

The snackbox in the CF dietitian's room

When I was introducing solids, I would just cook up some vegies and add coconut oil. Then I started making things specific for her like red lentil casserole.

Before, she was on solids, I did my research. I finally felt like a had a heads up on something. Time to prepare, time to learn. Here was a way I could take control of my baby's health. No prescriptions needed. I could research and make my own decision as to what I felt was best for her. Some interesting thing I have found.

Broccoli helps clear damaged lungs as well as being a great immunity booster

Coconut oil is amazing! Google it! The parts that I like are: increased immunity, proper digestion, had Vitamin K & E, and is has the highest amount of fat. And it smells good!

Chia seeds are also high in fat and are known as a "superfood". They can be mixed with water to make a gel, and have no taste. 

raw tomato, tuna and cheese covered broccoli & carrots

 


I don't do the whole calorie counting thing, I just feed her as much as possible. I adjust the amount of enzymes when I notice her poo is oily, or if I am told to. At the moment, Ruby has 2 capsules/scoops of Creon 5000 for every meal unless the meal is very low fat or I think most of it will end up on the floor. 

Sometimes I feel like I'm trying to fatten up a prize goose to take to market! But I enjoy it, it is therapeutic, and Ruby certainly isn't complaining!

zucchini & mushrooms sauteed in lotsa butter

cheesy tuna & vegie rissoni with coconut oil

.

4th Day - ILLNESS & ADMISSIONS

I'll be totally honest, this entry is a total rush job. Ruby is restless in bed, she is not well. I am tired and still need to get ready for our clinic day tomorrow.

So in a nutshell

Five days after coming home from NICU, we took Ruby to the local hospital as she was lethargic and not feeding (it was Fathers Day)

She ended up staying there hooked to IV antibiotics for 5 nights for a high fever and unknown reasons. Not even really sure if it was to do with CF. 

I cried for the first time when she had 4 lumbar punctures (3 unsuccessful) to rule out menengacoccly. Spelt that wrong I know!


Dr casually pointed out that she has a systolic heart murmer and may need heart surgery. Westmead later told me she will probably grow out of it, which she has.


I realised during this time that CF really is a free pass to be paranoid of sickness and demanding of hospital staff.


The only other hospital visit was for what ended up to be constipation. Another CF lesson. HYDRATE HYDRATE HYDRATE!


You can read about it here:


A Common Cold?


I can hear Ruby coughing in her sleep, I hoope I won't have another admission to blog about...

3rd May - MEDICATIONS

Medication will always be a part of Ruby's life. Preventative medicine to stop her getting a bug, and aggressive medicine when she does get a bug, to stop it turning into a lung infection. These  repeated infections eventually lead to lung damage. Many people don't realise that with CF comes digestion issues. Most people with CF are pancreatic insufficient which means they are unable to absorb fat or fat soluble vitamins which lead to ill health and poor weight gain. 

Here is a photo of Ruby's daily medication (the suppositories aren't daily!)

 

1. Probiotics - actually these were for me when Ruby was breastfeeding. To try to stop any issues with constantly taking antibiotics
2. Antibiotic - Ruby is on a prophylactic dose for 18 months. This means it is a low dose to help her fight off any bugs while her lungs are still growing to give them a chance to get nice and strong. The dose is low enough to let her immune system still develop. She has this 3 times a day.
3. Pentavite - a multivitamin for general health and immunity, as well as a boost of the fat soluble vitamins
4. Micel E - vitamin E supplement (also fat soluble). For some reason, it is not in Pentavite
5. Plain old table salt. This is added to her milk and food. The cause of all the CF problems (sticky mucus) is due to salt not moving properly through the body. Extra salt is needed as CFers have much saltier sweat and loose it quickly, leading to dehydration and other problems. 
6. Suppositories for constipation. Constipation can occur for many reasons, including not enough salt in the diet
7. Creon (digestion enzymes) They are the most important! These do what the pancreas can't, they break down fat. Ruby has this before any food or drink that contains fat which is pretty much anything except for most fruits and vegies. The dosage depends on her weight and fat intake. At one stage she was on 3/4 of a capsule, that was fun...She has been having this for as long as she has been feeding ans she will do for the rest of her life. The older she gets, the more she has. Could be 10 capsules before a normal meal. If she doesn't have this, she will literally poo out fat and oil and have a gut ache
8. Super dooper formula with probiotics. I have listed this as a med as she has a need for it, it was not a feeding choice. She is on a high ratio of formula:water and goes through a can every 4 days
9. Nasal saline spray. Most mums have used this for their babies. It's basically salt water I squirt up her nose to keep the snot moving. I use it all the time
10. Creon again, but the granules are already in a jar so I don't have to keep splitting open capsules (as she can't swallow then yet)
11. Antibacterial soap - no she doesn't eat it, but it was in the med drawer
12. Apple gel - this is what I tip the Creon onto for Ruby to eat. The Creon needs to be coated in something acidic so it gets broken down in the right place in the gut. If I forget apple gel, I normally find tomato sauce somewhere

 And that is all at the moment! Trust me, this is not much. Not pictured is a bottle of Hyrdralyte which she drinks for the same reason as adding salt. We qualify for a health care card so we get the Creon and antibiotics cheaper. Everything else is full price. The formula is $28 a can (can normally find it on special) and the Hydralye $11. We go through one of each every 4-5 days.

So much for my natural parenting, toxin free ideals!

2nd May - THE FIRST YEAR, THE WORST YEAR

Well we are still in the first year, so I can't really say it is the worst year! It definitely has bad times, but there are so many wonderful moments as well. 


Compared to others experiences, I would say our first year so far has been quite uneventful. We've had a bit of everything but nothing too serious. It's been like an orientation period. A period of learning and unlearning. All the experience we thought we had as parents to a 3 year old? Out the window! Everything had changed. The way we fed Ruby, the physio, the medication...
She has never even spent the night in our room. She was an independent one alright. Didn't like lying in peoples arms, wouldn't go to sleep if you were holding her, total opposite of Eliza!

Eliza and Ruby meet for the first time

I found it hard learning about the limitations she will have. Being told things like, no indoor pools, no sandpits, no bath toys, no eating dirt, no jumping in puddles, use antibacterial products at all times, avoiding childcare. All said in the same breath as "but you can't stop her from being a kid".


The first year is hard because these are babies we are talking about. Babies who should be at home with their families in a safe environment. Not poked and prodded and detached from their family. 

Ruby's first breath of fresh air EVER! 15 days old.

The first year (so far) has also been so wonderful! Ruby is a great sleeper, that is all I ever wanted! We have seen her little cheeky character come out. She is a determined little thing with a beautiful nature. She wins people over by smiling at them, from the day she learned to smile. She loves watching her sister and I love watching them together. Just like a family without CF, the first year is a special year full of discoveries and special moments. Despite the start that we have had, I am loving this year so far!

 

Our first family photo! Ruby was 15 days old and finally cord free and able to leave the ward

DIAGNOSIS

This is how we were told about Ruby's CF.

We (me, Hubby, my dad, my cuz and my aunt) were waiting for the surgeon in the tiny parents room at the NICU ward. Ruby had just come out of surgery for a suspected bowel blockage. She was three days old. The surgeon came in and assured us that Ruby was fine and in recovery. On a paper towel, he drew an explanation of what had happened. A part of her bowel was blocked up with her meconium (that first yucky baby poo). The blockage had killed off part of the bowel, and had to be cut out (20cm). The two ends were then rejoined which was a bit tricky as they were different circumferences. The technical term for the blockage is meconium ileus.

But the surgeon was really happy with the outcome of the surgery. She didn't require a stoma, colostomy bag or follow-up surgery. He estimated that she would be able to feed by mouth in about 10 days.

Then he said now, I also have some bad news. Whoops, suck in that sigh of relief! He explained that meconium ileus is normally a result of Cystic Fibrosis. In fact, there was a 90% chance that Ruby had CF.

This is a day after her surgery. The Drs were very impressed with the speed of her recovery.

Clever little bubba!

Now imagine that your child needed their tonsils out. You feel a bit scared, as any kind of surgery on your child would be. When it's over, you are just glad that it's over. That's the end of that. Or is it? Imagine that the surgeon then tells you that they also saw a lump on your child's throat, and that there was a 90% chance that it may be cancerous. It's not over anymore, it's just beginning...

To be honest, I didn't even know what CF was. I was getting confused with Spina Bifida. And to be really really honest, I was relieved when the surgeon corrected me and I realised there was no physical deformity/disability. In other words, I was glad the she will look normal. 

The diagnosis was further confirmed with the newborn screening (heel prick test) 5 days later, and then with a genetic blood test. She hasn't had a sweat test yet, she will after her 1st birthday.

The CF team worked with us the day after the surgery, they will be our team until she is 18.  We felt like parents for the first time again, so much to learn, so little time to do it in. Every time I thought I had the gist of it, another piece of information would throw me.  It was mentioned a few times about the shortened lifespan,  but it was a while before we were told the magic number of 37 years. And you know what? I was relieved! I was expecting 6, or 10 or 18. How horrible, to be relieved that you baby has a life expectancy of 37 years. Sounds like the kind of question you ask when purchasing a dog, or a washing machine. This shouldn't even have to be discussed when talking about a new life.

We were reminded many many times how much the quality of life for CFers has improved, how much research is helping this disease. This is no comfort to a newly diagnosed family. It means nothing. It doesn't change the diagnosis, doesn't help you leave hospital early, doesn't break the news to your friends for you. It's a bandaid on an amputation. It's something safe for people to say to you. Nowhere as near as comforting as a hug, a text, a hospital visit. I am lucky, I received many messages of support, an much help with Eliza who was not coping well at all.

We fell in love with Ruby the day she was born. She was our Ruby, our baby girl. When we were told of the possibility of her having CF, I kept reminding people, she is still our Ruby. Nothing will change that, our love won't diminish. 

I will not pity her, I will not cry for her. I will not sit around the hospital cafeteria and say "poor her". She is my Ruby, she is the baby that stole our hearts, just like her sister did 3 years earlier. CF is something she has, not something she is.

31 Days of May - The Cystic Fibrosis Way!

This is a great idea that a fellow CF mum had to raise real awareness as to what goes on in a month of a CF family. We have chosen the month of May as it is international awareness month.

Everyday I am going to post something about Cystic Fibrosis  

Everyday you will find out something new about CF and how it affects our family and my child's life

Some topics won't be relevant to us...yet

We are one of many families who go through this, I will also be sharing their experiences with you

love and kisses to you all!

65 Roses Day

You have heard me go on before about what I believe is the lack of awareness about CF in Australia. It sometimes keeps me awake at night, probably more than it should.

Well, good timing for me, May is the official Cystic Fibrosis awareness month! Fri 27th May is 65 Roses Day 

My plan is to purge all of my awareness urges. I will focus on putting it out there for all to see. Hopefully once May is over, I can feel good about educating people about this disease, and I will be able to sleep better at night. 


And I am starting with you, my blog readers

So here are some things you can do

 Learn about this genetic disease and how it affects its sufferers. You can do this by checking out these links:

 Informative blog entries

Cystic Fibrosis Australia

If you have any questions at all about how CF affects our family, please leave a comment and I will tell you the answer, guts and all.

Use Facebook! Join Team Ruby so you can see what is going on and learn about CF and how it affects just one of its sufferers. 

Change your profile picture to a CF awareness picture (these can be found on the Team Ruby page). Write a status update as to why you are doing it. This may seem like a bit of a token effort, but it has been proven to be a very effective awareness tool. You will be helping spread the word.

Invite your friends to join Team Ruby

You could sell 65 ROSES DAY MERCHANDISE. See if your employer will buy one for your place of work. Hint that it would be a great tax deduction! Volunteer to sell them at train stations. Check out the 65 Roses website for more info.

Share Share Share

Share links, pictures, CF pages. 

Sharing is caring, and I know that you all care!

My world?

Sometimes I feel like I'm stuck between 2 worlds. There is the "normal" world where there is no need to constantly manage your babys health or be scared of their future, and then there is "mother of a child with a chronic illness" world.

I have moved past the normal world, I can't get back there no matter how hard I try.

I'm not really part of the new world yet. I am still learning the dynamics, the leaders, the protocol. And I'm talking more about the community than the medical side.

I don't like to categorise myself, I don't want to have to fit into a "world".
But it can be a bit lonely in limbo. 

Last Night

Last night in my sleep, I sensed that Craig wasn't lying next to me. I got out of bed and snuck down the hallway. I realised he was on the toilet. He said he was fine, just had a bit of a tummy ache. I stumbled back down the hallway, glad the kids hadn't woken up as I was so so tired.

As I walked past the lounge room (where Eliza was asleep on the couch as usual), I noticed that the TV was on. I stared at it for a while, in a bit of a sleepy stupor and saw that is was the credits for a Bruce Willis movie.

Then I saw that our furniture had been moved around.

Some things had been moved across the room, other things had been put upside down or sideways.

I was so confused. My eyelids were still heavy and I was practically sleepwalking, but my intuition was telling me that something wasn't right. Craig called out from the bathroom. He told me to leave things alone in the lounge as he was in the middle of doing something great. That's when I knew something was wrong.

Craig wasn't acting himself. He came out of the bathroom. I grabbed my mobile phone and headed back to the bedroom. I saw that he had stopped by Ruby's room and taken her out of her cot. From the doorway, I could see him carrying her to the lounge room, zooming her through the air, trying to get her to laugh. I made the decision to not leave the bedroom. Even though I could sense the urgency of the situation, I could not shake the feeling of tiredness and that was really worrying me. In the bedroom, I closed the door and picked up the phone. I used the home phone as I was becoming more lethargic and the home phone was easier to use. I dialed 000 and waited for what seemed like an eternity for someone to answer. Finally, a droll "police, fire or ambulance". I muttered ambulance. "speak up" said the voice. "Ambulance" I forced out with all my might. Then another long weight. I didn't catch what was said, but I knew that someone was on the other line so I just blurted out "my husband has gone crazy, I can't stay awake, I think we have been drugged" and then I couldn't help it any longer, I fell asleep. Only to wake up and realise that my dreams are weird.

Photo Friday

Lola © Heartfelt : giving the gift of photographic memories

In the midst of all the stress and emotions of having an ill, premature or stillborn baby, the simple act of taking a few beautiful photos can often be forgotten. 

Heartfelt is a volunteer organisation of professional photographers from all over Australia dedicated to giving the gift of photographic memories to families that have experienced stillbirths, premature and ill infants and children in the Neonatal Intensive Care Units of their local hospitals, as well as children with serious and terminal illnesses.

All services are provided free of charge     

Clinic Update April 2011

Today we had Craig's parents come with us as we had a genetics appointment after clinic, but more about that later.

Ruby is starting to become more aware of these visits and she seems to know what is about to happen. As normal, she was very happy on arrival, and we are always greeted with cries of "here's Ruby!" The staff there are very friendly and genuine and are always commenting on how well she looks. Of course, Ruby encourages this behaviour by beaming at them all.

She was weighed, and then measured, and that's when she started to get suspicious. She really fought hard about being laid down for a length check and had quite a loud sook about it.

First up was the dietitian, which is the main reason we go monthly. I really like out dietitian Christy. Even if we don't agree on some things, I always feel I can argue my points and we often come to compromises. Ruby got full marks for being a big eater and liking all types of food. Christy was happy about the weight gain, but still wants her on the strongest mix of formula until her weight catches up with her length. She know I'm not happy about this. We talked Creon and fat content, food ideas etc etc.I tentatively mentioned to her that I made a point of giving Ruby Hydralyte to drink everyday, wondering if I would get told off. But she was happy I was doing this and told me I don't have to be so strict on adding salt to her diet now that I am going this. Yay for me!

Then we had a sputum test, which I found out later is pointless when she is on Bactrim (grrr). Obviously, this is never fun, but it was over quickly. I couldn't help but admire how Ruby maintained direct eye contact with the nurse whilst crying very loudly at her...if looks could kill.   (I wanted to take a photo but thought I would look like a bad mum)

Ruby's respiratorist wasn't there today so we saw the fellow instead. She asked all the right questions and listened to her chest. All clear! I also asked her to check Ruby's heart as I had been told previously (when we were admitted to Gosford hospital) that she has a systolic heart murmur. But she said all sounded normal.

By the end of it all, Ruby was crying whenever anyone looked at her for longer than 2 seconds. She even cried when I changed her nappy, I'm sure she was waiting for something unpleasant to happen. This is why I want to try to space these visits out as much as possible. I don't want Ruby to feel unsafe and scared, even if only for a day. 

So we will be going back in 4 weeks. I actually pushed for 2 months and they compromised with 6 weeks, but there were no appointments available, so 4 weeks it is...

So that was Ruby's visit. Now about me! I have a circle of Facebook friends who are CF mums. I surprised myself by becoming close to people I have never met. Is this how Dungeons & Dragons players feel? Anyway, I got to meet one face to face today! Only very briefly as her and her beautiful daughter were in isolation, and it was a bit tricky with my in-laws there also, but it was still exciting!

I am sitting here surfing the net (instead of cleaning the saucepan cupboard) looking at CF stuff. The fundraising and awareness part of CF I mean. And I am getting angrier and angrier and ANGRIER.

It's pretty poor really, the CF website is out of date by about a year, the links in it are also out of date (ie Great Strides info) and really, there doesn't seem to be much going on.

CF families, are we living in a CF bubble where only our friend know about this disease? This is not some weird quirky thing that only some people get!!! It seems that if you don't know someone with CF, then it doesn't exist!

I have only been in this CF bubble for 8 months. I had no idea about it a day before that. Why not? I should have. Every one should!

Everyone should know that one in 25 people is a CARRIER for this DISEASE. Everyone should know that one baby every 4 DAYS will be BORN with this DISEASE. Everyone should know that TRANSPLANT and DEATH before turning 37 is not a possibility, but is practically a STATISTIC! 

Excuse me, but where are that ads on TV? Anyone ever remember seeing one? There is a beautiful one for MS out at the moment. It breaks my heart, I want to give them my money. The autism one also gets me every time. Kids cancer awareness...well we all know how successful they are.

CF kids look healthy, BUT THEY ARE NOT!

65k 4  65 roses raised a LOT of money. I thought it was a starting point but it looks like the high point.

So I am angry. And I will continue to be angry until there is more done for our kids. I will do it myself if I fucking have to.

Now I'm pressing publish before I calm down. 

 

5th April
OK, so I have calmed down now and thought I should clear some things up before I get myself booted out of the CF community!   And also to correct my spelling mistakes. I just get frustrated and although Ruby is healthy at them moment, I have a real sense of urgency to get more support. I get frustrated when things aren't up to date eg I wanted info on buying an Entertainment Book as I know that is a good fundraiser for CFA. The webpage has not been updated since 2009, even though they are selling books for 10/11. This is just one fussy example. There are lots of others. 
There are many successful fundraisers that are organised by the CFA, I will do a separate blog entry on what is coming up.
And then there are the amazing parents and community members who organise their own fundraisers. People organising events in their own time to raise thousands and thousands of dollars.  65k for 65 Roses is a great example, raising around $140,000. I honestly though that this was the norm, but it is not.

So I'm sorry if I offended anyone. I know for a fact that the CF community is a strong, loving, supporting community who want what's best for the people and families living with CF in Australia. I know that the people working for CF Australia work really hard and are 100% committed. I know I sound like a new comer who doesn't know what she is on about. I just want more.

I want to help. 

Super Women - Helen Macnair

I am very lucky to have a handful of amazing women feature in my life somewhere. Some are so important to me, that it will take me a long time to be able to write about them. Some deserve a mention straight away. Helen Macnair is one of them. She is my pre & post natal yoga teacher.



Now, when I say yoga teacher, I don't mean one of those gym instructors who have taken a 6 week course in yoga to teach to the fitness freaks. I mean one of those teachers who have yoga running through their veins, those who live their lives as though it is one big asana. Just like you can tell a professionally trained dancer from the way she holds herself, you can tell that Helen is someone who cares for herself, mind body and spirit. She is a super qualified yoga teacher, having qualifications with Birthlight, Yoga Bugs and the Radiant child teacher training, and is also a trained doula. But to be honest, that doesn't really mean much to me. I am a beginner when it comes to the world of yoga. What is more important to me is what her classes taught me, pre-natal yoga in particular.

First of all, there is always something nice about sharing time with other pregnant women and listening to each others experiences. There is no sense of urgency in the classes, no rushing or skipping people. Helen always asked everyone how they were going with their pregnancies and always listened carefully to the answers. She is a fountain of knowledge when it comes to pregnancy ailments and non-invasive solutions. The yoga classes were often tailored to suit whatever was bothering us at the time, for example, bubs feet up in the rib cage! So many things she taught us, so much proof she showed us to trust our bodies.

I find it hard to be still. I could never meditate or slow my thoughts. Yoga changed that for me. I learned to breathe. I learned to take big, deep, slow breaths in. I learned to exhale out not only air, but pain and worry and fear.  These breaths gave me the strength to experience a natural, quiet, calm birth without intervention, without any distractions to disrupt that all important post natal time.

The benefit didn't stop there. These deep breaths also gave me strength when I needed it most. They stopped me from becoming depressed when I was separated from my baby by 100kms during her first night (as well as a good ol' cry to my mum) and spent the night in a maternity ward alone. I breathed my way through walking Ruby to surgery, I still don't know how my legs worked that day. When we were told about CF being a real possibility, I kept my composure by just breathing. I know it sounds basic, but can you remember a situation in your life that just took your breath away? Did you have someone there to whisper in your ear "just breathe"? I felt like I did.

Then there is the future. I have a daughter that will eventually develop chronic lung disease. Suddenly the phrase "just breathe" has taken on a whole new meaning. I want Ruby to learn how to breathe. And I don't mean like the blonde with the headphones kind of breathing. I mean the life saving, lung strengthening, head clearing, deep, breathing. Helen is my secret weapon, even if she doesn't know it yet! She will teach my daughter how to be strong, she will help her beat cystic fibrosis. I have full confidence in this, and a touch of mothers intuition.

www.bellaroseyoga.com

A Fictional Story

The father idly wondered if this child would be a boy or girl. Another boy to help him plow would be welcome. A girl, he supposed, would also be accepted. His young wife would appreciate someone to help with her with the daily chores, and he knew deep down that she would love to be mother to a daughter. The air was getting cold, he went back inside.

Inside his home, he could see the glow of the fire in the birthing room. Shadows flickered as the midwife and her helpers bustled around. He knew he had no business here so grabbed his warm woolen cloak and left for the local tavern.

The midwife was feeling confident about this birth. The laboring woman was of a good childbearing age and was strong in body and spirit. She could feel that the baby was in a normal position and low in the mothers womb. There was a warm bath waiting for the babe, and the swaddling cloths were clean and ready.

The mother had retreated into her own thoughts, wishing the birth to be successful. Praying that her and her baby would survive. She knew it was selfish, but she was willing for a daughter to be born. Her own little girl to love and nurture. Her thoughts were interrupted once again by the vice-like pain that tightened across her lower back and hips. She paced the room, trying to walk off the hurt. Suddenly things felt different, her baby had moved. The weight of the baby was pushing down into her, her body had the uncontrollable instinct to push. The midwife had noticed the change in the birthing woman and led her to the birthing stool. Here the woman sat, and cried and let out a scream of pain that turned into relief as the baby's head appeared. Another push and the body followed. A gurgling cry was heard as the midwife quickly tied off and cut the umbilical cord. She then cleared the mucus from its mouth and carried it over to the bath.

"What of my child?" called the mother, trying to see past the woman tending to her.
"Well, you have borne a babe with no disfigurement, but it is a girl"
The mother sat back and smiled. This is what she wanted. This is how it was meant to be. Her heart had instantly changed, it was now full of love. The midwife dried and swaddled the babe, and carried her to her mother for her first nurse. The baby suckled from its mother with ease. Her mother stared in wonder. She kissed her babes forehead.

"Why does my baby taste so salty?" she wondered out loud. The midwife stopped what she was doing. She turned around and licked the baby's forehead. She looked at the rosy, plump baby happily nuzzled against her mothers breast.
"I suggest you do not become too fond of the girl for she is bewitched and will not live past a year. I will call for the priest to baptise her straight away". She left the room and her helpers quickly followed. The young mother was confused. She looked at her perfect daughter and didn't believe it.

Life with a baby was hard. Her body healed well from the labour and her milk was flowing well. The baby though, was always hungry. It seemed the more she was fed, the fussier she became. And she was not the plump baby that was born those few moons ago. Her skin was loose on her bones, her face sharp and hollow. She was receiving extra feeds of bread soaked in goats milk, but her stomach was always hollow. She cried all the time and looked at her mother with desperation in her eyes.

Six months later, and the baby wasn't crying all the time. Her mother constantly carried her, trying to physically comfort her with her closeness. Her baby was tiny and sickly looking. She seemed too tired to make a noise. The most energy she used was when she was coughing which she was constantly doing. Every single breath was laboured. Her mothers heart had changed again. It was now full of worry and angst. What had she done wrong? Why was God angry at her? She hugged her daughter to her, and whispered in her ear.   "Sorry"

On the eighth month, the baby girl was able to breathe easy. She had grown her angel wings and left her body and her mothers world. Her mother stood by her grave and cried. She tasted her own salty tears and remembered what the midwife had told her.

Team Ruby

Well our day has been and gone. I'm sure everyone by now has heard me rave on about how touched and blown way I was with the amount of support and love that we received, so I won't write about the day. Instead, I have made a montage! Don't worry, it's not too emotional and not too long. But a picture tells a thousand words, so here you are...




Our fundraising so far is $14250 with more on it's way. Half the money goes to our CF clinic at Westmead hospital, the other half to CF NSW. It's not too late to donate if you haven't already!

DONATE TO TEAM RUBY


***if you have more pics, send them to me! There are team members I am missing***