Little School

It’s been an exciting couple of weeks for Rose.  She was accepted into a local community pre-school.  She’s really loving it and doing so well.  A friend said they thought such a milestone was “post worthy” and I was thinking about writing something but tonight, her teacher wrote something on her Storypark account that says it all really..

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The Luckiest

Rose turns 3 today.

 

Thank you for your interest in Rose’s journey.  She’s a wonder and it is my privilege to “show off” her past year in this slideshow today.

Happy Birthday, Rosie!

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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. Continue reading

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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 here as I expect one day she will read this blog. 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! Continue reading

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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 this day will become the same sort of day it is for full term babies so best to start as we mean to continue.  I had planned to have a big celebration and invite everyone who helped get us to this point but after negotiating James and Daniel out of birthday parties this year as I just wasn’t able to even begin to coordinate “events” I realised it probably wasn’t going to be achievable.  I’m still hopeful our home life is going to become more manageable with the help of a generous and talented lady, Ali who’s helping me achieve some of the things I need to to get our family life back.

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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 all your love and support! 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 and settled on the design we’ve gone with so hopefully they’ll work well for Rose.

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Public vs Private

Hello!

I’ve been trying to work out why I haven’t wanted to write a post since I brought Rose home and I think it has something to do with living all those months with no privacy and then finding myself with an abundance of it. I’ve become introverted. I think also that at home my energies are diverted to other things where at hospital I’m able to focus on caring for Rose. It’s simpler, less muddled with every day life. It’s been a tough time at home but ultimately we are all happier. We have become a proper family at last!

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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 Sydney Children’s Hospital, Randwick, day ~160 Discharged day 209!

We have just spent a night at home!!

Letter from Rose’s pediatrician describes Rose’s history around time of discharge as:

“… a past history of left neck teratoma excised at 18 days of age (with the histopathology confirmed to be teratoma with small areas suggestive of yolk sac tumour).  Associated morbidities were prematurity (29 weeks), low birth weight (1390g), tracheomalacia, bilateral vocal cord palsy with left sided furrow and an anteriro glottic web, gastro-oesopageal reflux, hypothyroidism and resolved seizures, influenza A infection and ventricular septal defect.”

So just a little to keep us busy over the next few years.

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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 months of people avoiding the H word to it being uttered in every sentence. There has been a constant stream of specialists and administrators past Rose’s bed today preparing us for the likelihood of going home this week.

Home sounds like the fulfillment of a dream if you don’t listen too hard to the background noise… the end of Rose’s journey… a chance to be normal… but it isn’t really any of those things. It means that she’s safer than she’s ever been, bigger, able to be fed outside hospital. All these things are GOOD but there was a time not so long ago that I believed home would mean a well baby and my mind still goes there occasionally… it’s not a place my body will ever arrive though!

Home also means rushed trips to emergency, shoving tubes into her gastrostomy hole if it pops out, endless specialist appointments, endless medical EXPENSES, stress while I try to juggle the needs of the boys with Rose’s medical requirements, discomfort when we come up against strangers expectations of how a baby should be, anxiety about whether I’m doing the right things, whether she’s safe, will stop breathing and of course a whole raft of things we won’t know are in ahead of us until we encounter them.

Home means we’ll see most of you a whole lot more and that Rose will have a chance to be a part of her family and her community!

Home means for a while at least we have a break from people telling us what to do, from having to ask for permission to do the most basic things, from walking away from Rose’s bed and coming back to see someone prodding her awake for some necessary test or other. I’ll no longer be woken up (as I was last night) at 12, 1 and 3 for a new admission to our room or a crying baby who makes me just want to scoop them up and cuddle them to sleep.

I think the thing I’m looking forward to most is being in the same country as Andrew and the comfort all our children will have in seeing both their parents together in the same place. Of course this could be short-lived when they realise how much less they’ll get away with!

I’m not scared to take Rose home exactly… I’m scared to hope that home means a bit more than this I guess… that it means the worst is over and not that the worst is yet to come… I guess no one can ever know THAT about anything.

One thing that HAS become obvious being in the Children’s Hospital with our fellow weary travelers and something that we remind ourselves often is that you really must enjoy each and every moment, every smile, every milestone reached, every time you smell your baby’s head, kiss their cheeks, hear them laugh, every time they look at you like you’re their person. All babies make their parents’ souls sing with happiness, sick babies no more or less than well babies but for us we need to cling to that feeling otherwise this place is IMPOSSIBLE to make any sense of… this suffering that we’re doing, witnessing and surviving would just not be worth it if we weren’t LOVING 100s of little moments of every day after all who knows what tomorrow will bring?

The hospital seems to be planning for us to go home this Thursday or Friday all going well. Rose’s gastrostomy is looking good, we’re moving from 8 to 7 feeds per day so that Rose has a 6 hour stretch between 12am and 6am that she’s not fed. Her home C-PAP machine is all hired and we’ve applied for her own. She’s having all sorts of tests for home and we’re being given lots of training (CPR, Equipment maintenance, emergency P.E.G. replacement) and lots of follow up appointments.

A huge issue that’s preoccupying me at the moment is food… she now eats almost twice as much as I manage to express each day which is great for her but I’m finding it difficult to contemplate formula… because I’m me and accepting would just be too easy I guess ;-)… so I’ve been stalking the Human Milk for Human Babies facebook group and building up the courage to use donor milk… there are associated risks but it still feels better. My generous sister (I’ve a draft post pending on Rose’s new cousin), Kate is also trying to express for Rose which would be such an incredible gift and really is the ideal though the freight costs from Perth may be a little extreme!

Another possibility is that Rose could start breastfeeding again. She has started allowing milk and nipples in her mouth but not latching yet. It’s a huge step and I’m practicing extreme patience. The first time she did it I can not describe the sense of relief and wonder that flooded my body.

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So. Looks like all going well in next few days I’ll be coming home and going about my life generally with

my arms full

and that will be, without a shadow of a doubt, something to celebrate!

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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 moved to Thursday night.

Rose had SO many visitors yesterday!! Photo below:

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Alyssa & Dianne, school friends, were visiting SCH for an appointment so dropped in for a visit. It was gorgeous to see Rose so engaged with Alyssa!! She had made beautiful flower and butterfly puppets for Rose and read her some stories!! Play therapy at it’s best and most genuine.

Lou (with lots of consultation with Son, Liz and San) arranged for me to see a clinical psychologist at Prince of Wales Private. Was a really good thing to do. Better than I’d hoped. I will try to do regularly but she wasn’t super concerned about how I was coping which was reassuring!!!

Further extra exciting news for today that’s unfolded as I’ve been editing this post is that Rose has been taken off daytime highflow!! I did a celebratory walk outside her room and back. I intend to try to race OUTSIDE at some point today if my latest bout of mastitis calms down. Wow – what adventures we are having!

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If you ask me…

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

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Changing

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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, now her Nasal Gastric feeding tube has been replaced by a gastrostomy tube, we can see her face!

Rose’s paediatrician thinks she’s adjusting well to her gastrostomy. We have steadily reintroduced full 3 hourly feeds over the last 10 days or so. She lost a bit of weight but hopefully she’s gaining again now.

Rose’s ventilation is being weaned with a view to her having only 1/2 a litre of flow by the time Wednesday rolls around. We began weaning from 4 a couple of days ago and we are at 2.5 now. If she continues to tolerate this lesser ventilation support then on Wednesday we go to the sleep clinic for a sleep study.

The sleep study results will determine what happens next for Rose. If she doesn’t need ventilation support when she’s awake we can get everything off her face. I feel like suddenly there may be a way forward. One that I actually want to travel! But it’s frightening to think that knowing my hope could turn to disappointment should any complications arise.

When Rose’s face is bare, I’ve been given the go ahead to work with her to overcome her breastfeeding aversion. It’ll be a huge challenge and success is unlikely but it feels important to give it our best shot.

This journey is taking it’s toll on me now. I’ve had to rely heavily on lots of people for support this week and I know that this has a knock on effect for their immediate and their extended families so thank you to the people supporting our supporters!! We are so fortunate to have you all there in the wings!!!

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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 thought I’d better write and let you all know I’ve had some much needed R&R thanks to Mum & Dad, Lou, San and Andrew… incredible that it takes the energy and resources of 5 people to give me a break but I don’t even feel guilty.. I feel awesome (and filled with gratitude of course).  I walked up Darling Street in the SUN and had a 3 hour afternoon NAP… I think I pretty much wasted the rest of the time dithering… so many things I should be doing and so little time etc etc but it was LOVELY.

They’ve moved us back to the baby ward tho’ it’s moved to C2South and…. drum roll…. we have a window!!! First time Rose has had a window so it’s just a bit exciting!

Anyway I’m back at my post and Rose is well.  She has started gurgling.. laughing.. I’m trying not to be offended that she only does it after she’s spent a day with Andrew… am I not funny?

In other incredibly exciting news: a day I’ve longed for for years is about to arrive… I’m about to become an Aunt for the first time.  I’m going to be an awesome Aunt!!  Good luck, Kate and Charlie, not long to wait now!

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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 and babies (particularly those with Rose’s worst enemy at the moment: bronchiolitis) and we’re hidden away in a little room where no one can see Rose… this would all be very reassuring if it meant we were somewhere appropriate and Rose’s issues were resolved but they are not.

I’ve tried a few times to jump up and down about the move but I’m clearly not being very convincing… maybe the fact I haven’t had a shower for 3 days now is creating the wrong impression?

Anyway – we had our first demonstration of what google promised of the fundoplication yesterday… I was told to clean around her gastrostomy site but the Gastrostomy Nurse said to give her panadol if it caused her discomfort as it’d set up a negative association if she could feel pain. So we gave her panadol, waited for it to work and then I tried to clean it and she was very upset so started crying… crying causes abdominal pain when you have a fundo (ref. google and now my own experience)…. so she cried more because she had abdominal pain which caused her to cry more… so we had to vent her (let the build up of gas out thru her gastrostomy tube) but none of the nurses assigned to her on CICU knew how to do this so they found one who did and we vented her but by then the crying and the venting was a circle that may never resolve so we stopped venting her and gave her stronger pain relief… so that was all just a bit nerve wracking and very confronting. I have spent the time since then berating myself for not being stronger and saying no to the fundo. and being quite scared of her in her new surgically modified form. Not useful I know but unavoidable so far. I know all the reassuring things you guys are thinking but at the moment they’re not helpful.. at the moment I just hate now and you’ll have to let me.

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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 all about gastrostomies… yay! Thanks again for all your well wishes. Am very glad this one is over. I’ll do a proper report tomorrow but bad news is she doesn’t actively open her airway when she breathes.. it’s pretty impressive she breathes as well as she does really.. 20130903-173056.jpg

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