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.