From Ruby's Dad

These words are from Ruby's dad, Craig. We went through this together, and we were there for each other. During our time at Westmead, we took turns at being the strong one, and we held onto each other for comfort. Absolutely no way I would have be able to go through this without him.

I will never forget the night Ruby was born. Some say there is no such thing as love at first sight. Well they obviously don’t have children, because the moment I saw Ruby, I was totally in love with her. This was also the case with Eliza. To have such strong feelings for someone you have only just met and who has only been on earth a few seconds, is a feeling that has to be experienced to be understood.


I remember the birth and my first hold of Ruby. Looking into her innocent eyes, at that moment I made a contract with Ruby, it was a pretty simple one, it was to do all I could to protect and help her. I believe all parents mentally make similar contracts the moment the see or hold their newborn children.

When Ruby started to have her initial problems at hospital I was shocked as she had looked so well when she was born and seemed happy. She breastfed almost straight away and seemed to be the classic healthy baby. My mind was dealing with a hundred thoughts and as many emotions when they transferred her to the high dependency unit. As her condition worsened and the outlook became more serious, I went into auto pilot. You just do what needs to be done. I never thought I would need to start fulfilling my contract so early.

When Ruby was transferred by Newborn Emergency Transport (NETS) to Westmead, I was so overwhelmed with what to do. I had a wife who was devastated that her newborn daughter was being taken away, a 3 year old who just wanted her parents and a newborn daughter who was seriously ill. What do you do??? I had to leave Danni in tears and take Eliza home and then try and get some sleep. All after having very little sleep and with less to come, I set the alarm for 5am and set off with Eliza to Westmead, racked with guilt that I hadn’t been there for Ruby all night. I arranged for my parents to pick up Danni from Gosford Hospital and bring her down as soon as she could be discharged and to drop Eliza off at Danni’s aunties. I later found out Danni’s parents had called into Westmead on the way from Melbourne and made sure Ruby was ok. This was such a relief, as Ruby hadn’t been totally alone.

The following weeks were a mixture of worry, sleep deprivation, relief and sadness all mixed in with some wonderful joyful moments. I had never before experienced such a time of turbulent emotions. Watching Ruby going to have major surgery at 3 days old was the hardest thing I had ever done. This was the first time I had cried since Ruby’s birth. Hearing her diagnosed with Cystic Fibrosis after being told how well her surgery went just a few moments earlier, was like a kick in the guts. Rocking her to sleep for the first time was a fantastic feeling and wheeling her outside the first time was such a relief. Speaking to the CF team and getting all the relevant information and do’s and do not’s, as well as collecting all the medications just made me feel sadness for the future of Ruby. But when we left that hospital and arrived home I felt absolute relief and joy, as well as a determination to make Ruby’s life a beautiful, healthy and wonderful life.

Ruby looks well but she is sick. Her life has many medications and treatments already and without her enzymes she would waste away. Her future will hold many more challenges, it will also hold many wonderful moments and will be the best life we can possibly offer her. The support network of family and friends Ruby has are the best she could wish her. Her Mummy is the most wonderful mum in the world. The care she gives her, the research she has done, the diet she has worked out, as well as the love she provides are all Ruby needs and then some. This is whilst still providing the same caring and loving mothering to Eliza. Danni blows me away each and everyday.

As Ruby’s Daddy, I aim to fulfil my contract to her. I will be there for her at every part of this journey. I don’t know what the future will hold but I understand the realities of this disease and will ensure Ruby is never alone in this fight. I am not a doctor or scientist, so I can’t cure her but I can fight for her at every opportunity. I can help raise money for research and care and do my utmost to raise the awareness of CF. So when you think that maybe we are bombarding you with CF information and stories and if you think maybe we are a little too focussed on this disease, think about the ‘contract’ we all make with our children. Whether we make this contract consciously or unconsciously we all do it and I would hope, all fulfil it to the best of our abilities. Think how you would react if Ruby was your daughter.

Thanks to all our family and friends who have provided such wonderful support to us and Team Ruby. We love you all………

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

The Birth of Ruby

So after an agonising seven days wait after my "due date", Ruby was born into this world.

I wasn't worried about giving birth, even after the post partum issues I had with Eliza. For some reason I just knew that I could birth this baby with no problems and no help. I had been attending pre-natal yoga for a few months, and I learnt how to breathe.

Yes, I learnt how to breathe. Who would have thought that I needed lessons in breathing? Well, it was the most beneficial thing I could have done. I was (and still am) blessed to have an amazingly spiritual and knowledgeable yoga teacher who instilled confidence in me.

"Exhalation is the antidote to pain"

So I started labouring at home after a long day of trying to bring it on. The only thing that was stressing me out was care arrangements for Eliza, and how she would get to the hospital after the birth to meet her new sibling. I felt better once I realised that the baby would be born late at night, and that she would stay all cosy in bed.

The contractions became pretty strong on the way to the hospital and Craig kept looking at me nervously at the red lights he always seemed to be stopping at. The conversation was light hearted but a little strained. Not in an uncomfortable way, but in a "lets not poke the bear" way.

I beat my midwife Sue to the birthing suite. Sue is another amazing person I am so lucky to have in my life. I knew I was in competent experienced hands, and that we shared the same birth ideals. I was looking forward to sharing this experience with her. Our student midwife Tanya arrived and then Sue. I had to lie on the bed for a bit while a fetal monitor was fitted. Once it was obvious that there were no problems, I was able to get up and walk around, which was much better. I don't know how women can stand lying down whilst in labour. To me, it feels so wrong. When you are upright, gravity is working for you also!

 From memory, it is hospital policy to be hooked up to a fetal monitor when admitted. In my humble opinion, this is stupid. They are restrictive and uncomfortable. And also very distracting. And they don't even stay on properly so it's quite easy to think that something is wrong, leading to unnecessary stress and intervention.

For the next however long (I was in a time vortex), I wandered and rocked. Each contraction came stronger than the last. I found my rhythm. As I felt the first tightenings of a contraction coming, I would focus on my breathing. Big, slow deep breaths. Breathe in for 6 seconds, breathe out for 8 seconds...forget the pain, just breathe. Sounds around me became muffled. My husband remained quiet and still throughout the contractions, recognising that I didn't need any help, didn't want any touch or sound. It was just me and my breathing preparing my body and baby for the inevitable.

I suddenly felt dizzy and nauseous. Tanya helped me to the bed. Although I didn't want to get up on the horrid thing, I had no choice as I was sure I would otherwise vomit or pass out. As soon as I lied down, the next contraction felt different. It felt more urgent, my breathing wasn't as effective. I mumbled that I think I would be having a baby soon. Sue smiled at me and said something like "that's the plan". Everyone was acting in the same calm manner and I remember thinking, "what's wrong with you people? Don't you understand? I'm about to have a baby! Quick, put on your gloves, get the camera ready, this is serious people!". Another contraction came. More pressure down there, less composure up here. Again voiced my opinion that I was about to have a baby. This time I was taken a bit more seriously and Sue helped me get undressed. But we only got the bottom half off (which is the important half I guess) before I was in full-on labour.

As any woman who has had a baby knows, the feeling of bearing down is indescribable. It felt so uncomfortable but so right at the same time. So painful, but so final. My whole attitude changed. I looked up at Craig and whimpered that I would like some gas now (bit late for that), I crossed my legs and willed the baby back up. Sue was telling me that my baby was there, the head was there but I didn't believe her. She told me to feel the head and that all I needed to do was push but I resisted, knowing that the end bit would hurt the most. But of course you can't stop nature taking its course and with one push, out she slipped. She was placed on my chest straight away and there were silly loved up grins all around. It took a minute to remember to find out the sex, and when I saw she was a girl, I thought to myself, I knew that.

Really, it should end there, shouldn't it? Finish on a high. But no, then there is the not so pleasant business. The stitches, the checking for other tears, the mess. Luckily, having a totally brand new,  home grown human being in your arms detracts from all that other stuff going on. The oxytocin running through my veins gave me a high that I didn't get to experience with Eliza. I was just so happy. As simple as that.

Ruby found her way to her first meal within 20 minutes. She did what she was supposed to do. Instinct is an amazing thing and she latched and fed really well. Little did we know that this was to be her first and only proper feed for 10 whole days.

So there is the story of Ruby's arrival. She was born on 1st August 2010 at ten past midnight. She weighed 3.14kg. Her birth was drug and intervention free, not even an internal exam in sight! Stage 2 lasted a whole 9 minutes even with my legs crossed.  Less than 24 hours later, we were separated as she was transported to the Grace Ward for Newborn Care at Westmead Children's Hospital. But that's a whole other story again for another time. This story is a happy one, let's keep it at that.