Friday, December 31, 2010
So What If I Have Cystic Fibrosis, I'm Unstoppable! is a Facebook page that Miranda has created. I love how the majority of the members are teenagers, and I sometimes stalk the page, watching them interact, and just be typical teenagers! It gives me great hope for Ruby.
Sunday, December 19, 2010
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.
Monday, December 13, 2010
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|
Sunday, December 12, 2010
Thursday, December 9, 2010
But I am not a scientist, a researcher, a doctor or a health professional. I don't know how to cure Cystic Fibrosis, I don't even really understand the biological, genetic or technical side of it. I do know that the medical community is confident that a cure is close (and not in a "miracle cure" found on A Current Affair type shows way) and I have faith in that.
So, what can I do to help? I can spread awareness. I can let people know what CF is and how it affects us. I can hound you with raffle tickets, research links and status updates. I can share photos, stories and experiences.
So sorry if my blog posts and Facebook page seem a bit CF obsessive, but it's the only way I know how to contribute towards the best possible outcome.
Here is an interview with Dr Michael Boyle about the basic defect in CF and how the two drugs, VX-770 and VX-809, aim to help fix the underlying problems, but in different ways. Good news for CFers, even though it's not very exciting viewing!
Monday, December 6, 2010
Sunday, December 5, 2010
- Cystic Fibrosis is the most common life threatening, recessive genetic condition affecting Australian children. Both parents must be a carrier, you can't "catch" CF.
- Around 10% of babies born with CF have "meconium ileus" - an obstruction in the intestines caused by thick, sticky baby poop. This requires surgery, which is what happened with Ruby.
- In people with CF, salt and water aren't transferred properly from the cells, causing the body to produce thick sticky mucus.
- It affects a number of organs in the body (especially the lungs and pancreas) by clogging them with the thick, sticky mucus.
- The mucus is a breeding ground for bacteria. Repeated infections and blockages can cause irreversible lung damage and premature death.
- Mucus can also cause problems in the pancreas preventing the release of enzymes needed for the digestion of food, especially fats. Malnutrition can be a problem.
- Daily physio where we try to "knock the snot" out of her, is how I describe it.
- She is on antibiotics until she is 18 months to give her a good head start of being healthy and strong, and hopefully not getting any chest infections in this time
- Enzymes are given before every feed so her body breaks down food (milk). Otherwise it would just pass straight through her, nutrients and all
- Salt is great for people with CF, so she is constantly breathing in the lovely salt air!
- Excercise is also a very important part of keeping healthy as it prevents deterioration of the lungs and improves physical bulk and strength.
- Regular visits to the CF clinic at Westmead
Wednesday, December 1, 2010
Clinic is where Ruby sees a team of specialists to help manage her Cystic Fibrosis. She normally sees her respiratory specialist, CF nurse, nutritionist and physiotherapist. The team also includes a gastroenterologist and social worker. The clinic is at Westmead Children's Hospital. As a newborn, we were there at least every second week, now that she is a bit older, and more importantly, heavier, we only need to go down once a month. If she stays healthy, the visits will be spaced out to every three months.
As soon as we arrive, Ruby is weighed and measured. She has put on weight and grown well! Infact she is growing longer so quickly that her weight is just keeping in proportion with her length.
This is the most unpleasant part of our visits. a sputum sample is taken to make sure there is no bacteria growing in her throat. The sample is taken by a suction tube being shoved down the back of her throat. Doesn't take very long to do.
Friday, November 26, 2010
Sunday, November 21, 2010
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!
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.
Friday, November 19, 2010
Ruby got her first cold the other day. Not a bad cold but ended up in a trip to the hospital regardless. Her snot is really sticky, not runny (thanks CF) so it didn't run out her nose. Babies can't blow noses or cough up phlegm purposely so everything ended up being swallowed. This resulted in her being constipated with a big sticky goopy poo which made it's way out with some help! Nothing is straightforward with a CF baby.
But we learn. Next time I won't be so freaked out by seeing green bile vomit and just give her some Glycerol. Next time I won't let Eliza watch Ruby get her temp checked rectally as a think we are in for a surprise when she next plays doctors...
I am thankful that I brought my babe home from hospital with me.
I am thankful that both my children will grow up to be active, busy kids with no physical disabilities to stop them.
I am thankful that Australia has a free healthcare system.
I am thankful for my husband who makes me a stronger mum and never let's me feel like I'm in this alone.
I am thankful that my birth experience with Ruby was natural, empowering and quick! I strongly believe that all that oxytocin running through me is what kept me going for that first week.
I am thankful for nurses. Unbelievably amazing people!!
We are so so thankful for our family & friends. All of your thoughts, prayers, visits, gifts and messages reached us at a time where we needed them most. They meant the world to us, please don't think we didn't notice : )
What are you thankful for in your life?
Tuesday, January 19, 2010
Now I've seen the baby bouncing and rolling around inside, I know there is no doubt that I am knocked up. No embarrassing moments in 6 months time when midwife finally figures out I'm just fat, not pregnant.
Ultrasounds are funny things. Not exactly the type of pics they take at Portrait Place. Can't really see how cute the baby is, but amazing and reassuring none the less. I was given a DVD of live footage and a CD of images. Unfortunately my computer wont read the CD so I will have to use another comp to see the pics.
So visitors be warned, instead of being subject to the standard holiday photo album, you will be shown DVD footage of my babys first ultrasound!
PS, Eliza is dead set keen on calling the baby Fred...