Category Archives: Uncategorized

Gastrostomy Closure

The day has arrived!! Rose is currently waiting at the Short Stay unit at SCH to go under general anaesthetic to have her gastrostomy surgically closed.

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Roll up, roll up,

Come one, come all etc etc

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If you have audio you’ll be able to hear that walking is QUITE a milestone in my mind!

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A year out of hospital!!

A fitting day to celebrate with a Rose update. I have lots of photographs I want to share so please forgive the slideshow. James wrote a gorgeous book in class about Rose and dedicated it to her. I’m adding it … Continue reading

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Homemade Blended Formula

We have been busier than I ever thought possible for the last few months, establishing a Blended Diet (BD) for Rose!

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Happy Birthday, Rose!

Today is Rose’s first birthday.  It’s strange to contemplate celebrating a birthday before she’s a year old.  At the moment 18 May, her due date, feels a lot more like a milestone for her but as the years go by … Continue reading

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Good riddance 2013

Never again will I laugh at people who are superstitious about the number 13!! Though of course I’m sure (and I hope) a lot of you had awesome years. HAPPY NEW YEAR and thank you so so so much for … Continue reading

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Baby Glasses

After much online research and even some old fashioned calling around and speaking to ACTUAL people I settled on baby glasses from Tomato Glasses, I found an excellent blog post from a mother who seemed to have tried them all … Continue reading

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Coming Out

Rose Eir O’Brien, born 8 Mar 2013 at RPA, Camperdown by emergency c-section. Born with a prenatally undiagnosed cervical teratoma. Birth weight 1,390g (243g teratoma). Intubated at birth and transferred to Royal Hospital for Women, Randwick, day 1, transferred to … Continue reading

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What to think and how to feel?

I’ve spent the last week or so trying to keep up with Rose’s progress and how I feel about it and what it means and trying to keep on top of my hope reflex. It is strange going from 6 … Continue reading

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Outside

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Sleep Study

Rose is having some work breathing on reduced highflow and her stridor is more pronounced. Oxygen levels good though. The sleep team want to try her on the ward without highflow before they perform the study so study has been … Continue reading

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If you ask me…

Gastrostomies are not the simple solution they are marketed as!!!!

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Changing

Thought I should share a photo of Rose’s face the way it should be. Every week we need to change her ventilation equipment. She hates having her face touched but for the five minutes it takes to do the change, … Continue reading

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The other half..

Rose is six months old today [3 months and 21 days corrected]!  Let’s hope she spends the majority of the next six months on the right side of the Anzac Bridge 😉 My last post was terrible I know so … Continue reading

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Back to Level 3?

That title probably had you all reading on with concern… it’s a wish not an actuality! We’ve been moved to Level 3 of the Children’s Hospital (C3West) and it’s not what we’re accustomed to!! Great nursing but for older children … Continue reading

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CICU

My phone (I use it to post to Rose’s blog) is running out of batteries so just a quick one!  All went as planned. She’s sedated and looks comfortable. We are heading home to be with boys. Tomorrow I learn … Continue reading

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Goodbye

Daniel cried through the fence when I dropped him at daycare this morning. I so wanted to pick him up and run away with him! But I had another goodbye to attend. Andrew and I just walked Rose into theatre. … Continue reading

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Preparing for tomorrow

Today is the last day Rose will have the tummy she was born with. I’m trying not to be a sissy about it but I can’t help it. Today will just have to be a weak day… tomorrow is what … Continue reading

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Father’s Day

Andrew is an incredible father! I always thought he would be. After all, his father seemed like a pretty good role model for fatherhood. Gentle, patient, interested, clever and calm but Andrew’s fathering is a line on a graph that … Continue reading

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