Dear Blog

Dear Blog, 

Sorry I haven't written here for a while...the world has been finding things for me to do lately. I promise I will return and offload all of the things going on in my mind when the universe slows down just a tiny bit. I am at the end stages of the Team Ruby auction (still trying to buy my baby a cure), another side project that just seemed to snowball into something amazing. Once again I have under-estimated the compassion and generosity that people have shown us. It makes me wonder what we have done to deserve this wonderful support, instead of letting me wonder why we deserved to have CF in our lives at all.

Ruby has been waking with severe tummy pains throughout the night so I have been tired, even too tired to come and visit you. I haven't had a good entry in a while. I know I posted many times in May for 31 Days of May, the Cystic Fibrosis Way but they were more for awareness purposes, not lightening my emotional load.

So thanks for waiting for me...

9th Day - GREATEST MILESTONE OR BIGGEST CHALLENGE

I choose...biggest challenge! And I am going to be a bit self-focused and write about MY greatest challenge with Ruby. And it was breastfeeding.

Now I know breastfeeding can be a bit of a contentious issue and also a touchy subject. Just remember, these are my feelings about the way I wanted to nourish my baby. What other people choose to do is their business.  I am a huge believer in informed choice. Whatever you choose to do, I believe you should research your choices. So my choice was to breastfeed Ruby. Firstly because of the health benefits of breastmilk. Secondly because I wanted to do something for her. Once she was admitted to NICU, everything felt so artificial. Even when we brought her home, there was so much factory made, processed, branded, plastic, chemist bought CRAP. I didn't feel like she was getting anything REAL. I wanted to do more for her than just syringe fluro coloured drugs down her throat.

I also wanted to use breastfeeding as a way to bond. And I don't mean emotionally. I have felt connected to her from the day I felt her kick inside me. I mean physically. I had skin-to-skin contact with her once she was born and that was it. Yes, I could look at her all I wanted in that little plastic NICU bed, and I could hold her when I asked the nurses to help me with the cords, but I never snuggled with her, never rocked her to sleep, never held her naked against my bare chest. Even her first night at home was spent in seperate rooms due to a broken air conditioner and her inability to sleep restfully by my side. And who can blame her? She had been sleeping by her own since she was born.

When she was in NICU, I went every three hours to the cold expressing room, where the four chairs were facing each corner like you were in trouble and the only noise was the sound of the squeaky pumping machines. Then bag it tag it and store it. My last pump each night was about 11.00 when I used to walk from the Ronald McDonald house to the hospital in the dark and freezing cold. I then woke up with a thudding chest and had to go and "get Ruby's milk" no matter how much Eliza cried for me to stay.  I felt like a cow. Them my beautiful midwife came all the way from the central coast and loaned me a hospital grade pump that I coud use in R.McD room. That helped so much with Eliza.

When the surgeons gave the go ahead for Ruby to start feeding again after her bowel surgery (she went 10 days without eating) I wondered if she remember how to do what she did so well 10 minutes after birth. And she did! She latched on with ease as to say "what took you so long?". And it felt SO DIFFERENT to that stupid machine! Everyone was impressed, everyone was happy. The nurses were especially glad that there was one less mouth that they had to feed, and as I was never far away, they just called me if she was hungry and I wasn't there. I wasn't a cow anymore, I was an on demand breastfeeding mum.

Then we went home and things were different. Ruby was fussy, always coming off, always crying afterwards. I was scared she wasn't getting enough but didn't want to say it to the clinic staff. But her weight gain was so slow that they wanted to try something different. I tried to talk about it to them. I told them that Eliza was also very slow in gaining weight, even worse than Ruby. "but Eliza doesn't have CF". Would I be willing to try formula? No thank, I don't want to feed my child a bottle of crap. I can do this, I'm her mum, it's my job. So we tried PolyJoule, which I made up everyday to give after each feed. Still too slow. Try formula now? No, there is nothing wrong with my boobs! So I started expressing. I hired a hospital grade pump. My day consisted of making PJ, boiling water, steralising bottles, feeding, pumping, steralising more, feeding. As well as the "normal" med dispensing, physio giving, child raising duties. Pumping didn't work. I got hardly anything. So I finally had to admit to clinic that I couldn't feed my child on my own. So we talked about supplementing with formula. That's OK, it though. This happened with Eliza. We comped for about 4 months and then she was heavier and happier and fed much better until she was 18 months. Ruby had different ideas. Craig had to by that first can of crap. He bought the super dooper plus this plus that version. He apologised to me for buying Nestle! I just can't catch a break!  As mum I know that this marketed crap is not as good as my milk. As a mum, I also knew that my baby was full and satisfied after a bottle of formula. At the next fortnightly clinic weigh-in, she had put on enough to make the staff happy. I cried. I felt like a reject.

Soon the breastfeeding was supplementing the bottle, and eventually at 4 months, she didn't want the breast at all. Didn't even want to lie against me. I went around the house singing "Ruby doesnt want my booby!" So she still has her formula with an extra scoop plus added salt. It has only been in the last month that I have started to look at formula as another CF medication that she has to have. Still don't like it though. Still have giving her a bottle in public. Still hate buying the cans. One every four days. That's alotta cans.

This is why I am a bit obsessed with feeding her real food.

There is now an organisation called HM4HB which is a milk sharing network. If this came along a bit earlier, I would have seriously considered it..if I was strong enough to deal with her medical team about it.

16th Day - !@#!? UPS

 OK, so common theme here, I don't really have much to write about, but I'm not complaining! I do remember this though.

 When unexpected situations arrive, when you are not a seasoned hospital mumma, you tend to just trust that the medical staff are doing things for a reason. Before you have gathered your thoughts or gotten your bearings, you just stand in the middle of the storm, watching all these "important" things happen around you.

Then, the longer you are in that environment, the more you feel a part of it, whether you want to or not. You go from timidly asking the nurse if you can change your baby's nappy to pretty much doing the "cares" yourself. You understand more what each cord it, what alarms not to worry about and what fluids are going through the IV lines.

The second week at NICU, an orderly came u[ to Ruby's crib. He looked at his paperwork and said "Ruby?" Yep, I replied. 

"I'm just going to take her down for her ECG" he said. 

Now normally, I would have just presumed it was just another procedure that she had to have, but this time it just didn't seem right to me. I got him to check his paperwork again. It definately said Ruby, he confirmed. One of Ruby's nurses turned up (they were never far away) and checked the paperwork herself. Yes, it said Ruby.but not our Ruby. It was the Ruby on the other side of the room with congenital heart disease. 

Although this was not a life threatening mistake, it was a wake-up call for me. It showed me that although NICU was run like a tight ship, mistakes can and undoubtebly will happen. It is my job as Ruby's mum to protect her from these mistakes. Just as you would hold your child's hand when crossing the road, I will check my child's medication.

Another CF mum gave me some advice, she said that I am my childs advocate..her voice..and that...I should always go with my gut instinct and if no ones listening or taking me seriously...then keep on perservering!

 

 

 

13th Day - THE FIRST TIME I HEARD THAT WORD

Technically I didn't hear it, I read it

  Burkholderia Cepacia

Often known as B. Cepacia, here is the medical explaination:
Burkholderia cepacia (B. cepacia) is a group of bacteria that is found naturally in wet soil and decaying plants, such as rotting onions.
Once B. cepacia enters the body, there are three possible effects and it is not possible to predict which will happen. Sometimes B. cepacia colonizes in the lungs, causes no symptoms, and has no long term effect. Other times B. cepacia colonizes in the lungs and causes damaging lung infections and inflammation that lead to a slow deterioration of lung function. In the worst case scenario, B. cepacia can spread throughout the body causing “cepacia syndrome”, which leads to a rapid deterioration of lung function. Cepacia syndrome is a serious condition that does not always respond well to treatment. Unfortunately, even with proper treatment, cepacia syndrome can lead to death within a few weeks.

I've read a lot of shitty things about CF, but when I read this I honestly got chills down my spine. Onions don't get bought in our house unless I am using them for that nights dinner.

I'm having a hard time writing this because I don't know how to describe why I feel this way. It is not a worry, it is a dead set fear. Yes, there are other bugs out there that are also harmful to CFers. Yes, B. Cepacia is not very common, but it is there, and my brain has decided that I am going to be afraid of it.

People who have cultured B. Cepacia aren't allowed to attend CF activities or functions. They are often also automatically taken off the transplant list.

A couple of days after I learned about this bacteria, I was talking to a friend whose sibling has CF. They are the only person I know with CF who I haven't met through the CF community. I asked about their health and was told that they had picked up a bug that the Dr's were worried about. When I asked what it was, my friend couldn't remember exactly except that it sounded like "spacer". My friend had tried to look it up on the internet but didn't know what to read. The internet can be a dangerous place! We weren't in the right place to have a proper conversation and the coward in me was glad. I guessed correctly that B. Cepacia was what we were talking about.

I cried that night about how unfair life is. Our friends know the sibling is sick, but they can't realise the magnitude of it. I do and I think about it often, and again I get chilled to the core.

11th Day - P WORDS

My P word is physiotherapy

Ruby has been having physio since 2 weeks old 

She will have it for the rest of her life

She doesn't mind it, as you will see from the video. She doesn't really enjoy being on her side, but she doesn't put up too much of a fight...yet! 

The aim of physio is to knock the sticky mucous out of her lungs. Coughing is encouraged, to help get that sticky mucous up. As she gets older, other physio activires will be added such as trampolining and bubble blowing. Not everything is a drag with CF!

 

 

 

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8th Day - NON-COMPLIANCE

     Well once again I am very lucky to not have much to write about. Has your child ever been on a round of medicine that they didn't like taking? Imagine having that struggle every day.



"eat your crusts or your hair won't grow curly"
"have your medication or you won't be able to live"





Sometimes being a good parent is having to be the bad parent. The parent who physically holds down their child while they are getting shaken by a vest. The parent who forces their child to breathe in salty irritating air through a mask. The parent who doesn't save their child from the prodding doctors...

...all because we love our kids.

7th Day - SCHOOL

School school school.
This is a long way off but it actually plays on my mind quite a bit.

What if Ruby misses out on so much that she falls behind?
What if she is bullied because of her CF?
Will she want to tell people about it or keep it a secret?
Will she miss out on things like school camps?

I  believe that she will be healthy enough to not miss out on too much. I see her as being an assertive child who will not take crap from anyone. Confident enough not to be ashamed of having CF, intuitive enough to pick friends who will accept.  Plus, she will have a secret weapon there..her big sister! If all else fails, I will homeschool her. Simple as that.

But before school, there is childcare. Not planning on using that. I am lucky enough (at the moment) to be  a stay at home mum so there is no need. Now that Eliza is 3, she goes once a week to a small pre-school. Maybe Ruby will too, when she is 3, we will see. I'm not worried about Ruby not learning social skills before this age. Her health is more important. We have a circle of friends we see quite often, she is most certainly not kept in a bubble. I have a few great friends who I trust to mind her if I need to. I am blessed.

6th Day - CLINIC

  CLINIC DAYS!

I will always remember the first time we went to clinic. I hated it. It was like walking into a secret society. The staff were welcoming, they had all heard about Ruby and were excited to meet her. I hated that they were so nice. I wanted to tell them "don't be too friendly, we won't be coming back". I didn't want to be part of this club, I didn't want to meet any of the other parents, I didn't want to have a reason to be there. 

But it is a part of our lives now, and it always will be. I don't want clinic days to be a negative thing for Ruby, so I have changed my attitude. 

Clinic is pretty much an all round check-up. The last one was just two days ago, Ruby was 9 months. First she was weighed then measured. Then a chat with the physio who was impressed by how she can now blow. Then another chat with the nutritionist which is always informative. 

Then the sputum sample. This is where spit is sucked out from the back of Ruby's throat to see if she is culturing any bugs. Depending on the result of the sample, her antibiotics may be changed. The plan is to catch anything early before it causes any damage.

Here is what happens:

Clinic days are scheduled by age groups and what bugs your child has previously cultured. This is to avoid the spread of certain germs that can be very detremential to a CF childs health. Believe it or not, clinic kids look normal. If you walked in by accident, you would not even realise that there is anything wrong with these kids. There's that whole "invisible disease" thing again...

We go to the clinic at Westmead Children's which is over an hours drive away. It makes for a long day for a little bubba but she does well.There is a clinic closer to us at the local hospital, but I just don't feel comfortable changing care yet. Westmead have been there from the start, it's just how it is.

Links to our clinic updates:

http://danni-herewegoagain.blogspot.com/search/label/clinic

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

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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.

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Share links, pictures, CF pages. 

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