One More Step

This Saturday, a team of people are going to do an amazing thing. They are going to walk 65km in a day. That's a BIG walk, probably bigger than what a few of them realise!

To be honest, I don't really care if they do 65k or 65 steps. The fact that they have joined our team is enough for me. That in itself speaks volumes.

But for the ones who have a personal goal of going the whole distance and are looking for extra motivation, this is for you. When you are struggling for breath, when your legs are wobbly, when the last lap seems so far away, think of this.

Think of Ruby's start to life, a major operation at 3 days old - take one more step
Think of the little needles and tubes that she had in NICU - take one more step
Think of the scars that some of them have already left - take one more step
Think of the infections ruining her lungs - take one more step
Think of the invasive tests and prodding she has at every clinic visit - take one more step
Think of the many meds she has to have to survive - take one more step
Think of the physio she has to do every.single.day - take one more step
Think of the years that she will miss out on - take one more step
Think of the way that her breath will be laboured (like you on your 5th lap) - take one more step
Remember that this is how it will always be for her - take one more step

Think of the cure that is currently being worked on - take one more step
Think of the difference YOU are making - take one more step
Think of how much this means to us - take one more step.

www.mycause.com.au/teamruby

Thank-you.

Not so distant memories

Will my memories of NICU always be so acute? Will it seem like just last month forever? Does it ever fade?

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!

 

 

 

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.

When I First Knew

I don't think of myself as a negative person. I always see the glass half full, and always try to keep an open mind about things.

But when the surgeon told us that there was a 90% chance that Ruby's meconium ileus (bowel blockage) was the result of Cystic Fibrosis, I just knew that we were part of the 90%. I wasn't thinking worse case scenario, for some reason this was the only scenario. We were told it would take about a week for a first stage diagnosis (heel prick test results).

The next day (or so) Craig went back up to the coast for a bit. I took Eliza to the playground in the hospital grounds. I remember the day really well. The sun was shining and I was actually feeling relaxed. Eliza was behaving and we were getting in some much needed quality time together. Eliza was playing on the spinny thing with an older girl, about 5 or 6 years. Her mum asked me if I had the time, and, as women do, we started chatting. She asked me if we has someone in the hospital and I told her my 4 day old baby was recovering from surgery. The rest of the conversation was sorta like this:

Her: "oh, up in Grace Ward"
Me: "yeah"
Her: "Sally was a NICU baby too and had an operation at 4 days old. What sort of operation?"
      Now, in my time in hospital, I was beginning to realise that if you pronounce NICU like nic-you and not by the letters, it means you have normally spent a bit of time there yourself. She said nic-you
 Me: "her bowel. She had a blockage"
Her: "did she have meconium ileus?"
Me: (looking at her strangely)"yes..."
Her: "oh, Sally had exactly the same thing. It was diagnosed at my local hospital and we were rushed here and she was operated on after that. We stayed here for 3 weeks and once they were happy with her bowel working again we went home"

She then called her daughter over and told her to show me her scar. The girl dutifully yanked up her top before running off to play again. You could barely see it, it was in the exact same position as Ruby's. 

Then there was a bit of an uncomfortable silence. I didn't want to ask if her child had CF and she obviously didn't want to ask if I had been told about the risk yet. I can't remember who said what, but yes, Sally did have CF. I told her we were waiting for the test results. We had a big chat after that.

It was after this event that I was absolutely certain that Ruby had CF. Any amount of doubt was eradicated. Why, out of all days, would I meet this lady and her daughter? Seeing that happy, healthy looking, energetic little girl do something so normal as play on a playground with other kids prepared me for the diagnosis. That is when I started coming to terms with what was in store for us, not a week later when we received the official diagnosis.

*The girls name wasn't Sally, I can't remember her name!
 
 

A Few Memories

I remember being in the special care nursery at Gosford hospital, thinking everything would be ok once Ruby did her first poo.

I remember noticing in NICU how long some of the babies had been there for. Months and months, and they weren't even premmies.

I remember the glass cupboard in the tea room full of books like: So Your Baby Has A Disability, Living With Multiple Sclerosis, Understanding Cystic Fibrosis. I remember being glad that I wouldn't have to worry about anything like that.

I remember wondering why the nurses hands weren't sore, dry and red raw from the antibacterial soap that had to be constantly used.

I remember Craig & I walking Ruby to the operating theatre. I was so scared but I didn't want Ruby to see me cry so I just smiled stupidly at her and told her how much she was loved. I remember wondering if it would be the last time I would see her alive.

I remember relief warming me when the surgeon told us how well the surgery went. I remember fear chilling me when he then told us there was a 90% chance that Ruby had Cystic Fibrosis. I remember confusing CF with Spina Bifida.

I remember the first time Ruby smiled. It was as we were leaving Grace Ward to go home and it was a proper smile, not gas! Good timing bubba! She hasn't stopped smiling since.

Wrong Answer

Ruby and I were 100 kilometers apart for what should have been our first full night together, all because I said Yes when I should have said No.

The day went from being calm and relaxed to rushed and urgent in what felt like a couple of minutes but was actually around 6 hours. The snowball started gradually, before cascading into a full-on avalanche. In a nutshell:
Me: Nurse, Ruby has brought up a bit of this weird green vomit.
Nurse: hmmm, that's odd. I'll tell the Dr to come around. Has she done a poo yet? (answer is no)
Registrar: hmmm, that's not entirely normal. I need to consult with my other important doctor person. Has she done a poo yet? (answer is no)
Pediatrician: hmmm, could be this, or that. Has she done a poo yet? No? Lets move her to special care, not feed her, shove a finger up her butt and give her her first x-ray.
I think special care was when our attitudes started to change a bit. We were no longer in a maternity ward full of families and their new babies, we were in a ward with sick babies and big scary cribs and no visitors allowed. I couldn't wait to get back on the ward when this was sorted.

After lots of idle time waiting around, and Ruby having more tests, the Dr came back to us and told us that Ruby would need to go to Westmead, and the nurses were arranging a chopper or ambulance now, whichever is available first. What??? Blah blah no poo blah blah maybe blockage blah blah might require operation...
My first question, can I go with her? Shouldn't be a problem.

I rushed back to my bed on the ward and started packing my stuff all up. As I was doing this, the NETS (newborn emergency transport service) arrived by ambulance. They were a lovely team of people but then all the red tape stuff began. I couldn't be transferred as a patient, I had to be discharged first. No problem, I had a really helpful nurse who rushed all the paperwork and gave me a crash course on expressing. She was doing her final check-up and asked me casually if my legs were sore. I said Yes.


She looked at me and said "really?". That should have been a huge sign for me to say "just kidding!" but no. I told her really. She suddenly got all concerned and started feeling my legs and explaining how I couldn't leave if I might possibly have DVT.

Umm, hello? I went on a bushwalk yesterday, I gave birth 16 hours ago and I have been on my feet in special care for the last 4 hours!

But no matter how much I downplayed it, she wouldn't budge. I wouldn't get the all clear until my legs were ultrasounded the next morning (this was about 8.30pm). Finally after much convincing, she chased up a doctor who was happy to discharge me after I was injected with something or other and promised to follow it up.
Oh the relief, my baby wouldn't be alone! But...while the dr was explaining this, Craig, Eliza and the NETS team were outside my room with Ruby all hooked up to a spaceship and listening to our conversation. I came out all ready to go only to be told by the NETS dr that I couldn't travel with them if I was a health risk.
My brain quickly tried to think of a solution but I couldn't get my thoughts straight. I kept looking at Ruby inside that thing but I didn't have time to really think of her. The NETS team were eager to get moving, with or without me. My options were:
a. Discharge myself and Craig drives us all down. Really not practical with a 3 year old to think of as well
b. Discharge myself, I stay home with Eliza, Craig drives to Westmead to be with Ruby and we head down in the morning
c. I stay in hospital alone, Craig and Eliza go home and we all go down in the morningl
Well we ended up choosing C. That way Eliza and Craig could get a good night sleep in preparation for a busy next day and I could get my legs checked out first thing in the morning. Craig promised that he would leave really early in the morning and I would meet him there once I got the all clear. So Ruby was whizzed away after I peered goodbye to her through the plastic window and the rest of my little family left also. I was all alone surrounded by other mums and their babies.

I grabbed my phone, walked to the visitors room, sat there in the dark, called my mum and finally let the tears run. I was sad for Ruby, not for myself. This is not how she should have been introduced to the world. This was not the cocoon I wanted her wrapped in.
I felt so bad that she had no family with her. But sometimes things do go your way. My parents were driving from Melbourne to Sydney and were about an hour away from the children's hospital. With no hesitation they drove straight there to be there for Ruby. They arrived just as they were settling her into NICU. Mum was able to give her a cuddle, and that is so important. I am so so grateful to my parents. Not only have they always been there for me, they were there for their youngest granddaughter when she needed them.

This is like what Ruby was transported in but hers had a metal casing over the top so you could only see her through the side window