Monday, October 17, 2011

Cosmetic Breasts

I lost a friend today. 
Over a decade of trust, support, sharing and love has been released to new beginnings. 
She dumped me because I did not support her during her surgery to have implants placed in her breasts. 
She didn't directly ask me for support, I might add, but after the deed had been done I was told she wanted it.

I only wish she saw more clearly the way I do support her. 
How I love her the way she is, for who she is. 
How proud I am of her for breastfeeding her three children. 
We have had this conversation at least a handful of times over the years. I know this is not a decision she has taken lightly 
or made flippantly. 
In such chats I would support her in the only way that feels true to me ~ to encourage her to value herself despite the intense pressure of society and it's unrealistic expectations of having the perfect body.

We once discussed telling our daughters and tried to perceive how they may view such elective cosmetic surgery. 
How does one explain to girls (who often feel inadequate) that they are perfect as they are; yet at the same time explain that women (feel inadequate too and) desire to make changes at drastic levels. 
What is the difference? Are we endorsing the need for the perfect body to our daughters? 

We talked about her personal health issues and the risks associated with surgery for her. We talked about the pros and cons and if it really mattered, or if it just seemed to matter. We talked about happiness and we were happy while we talked.

So once again I am pondering conditioning, and feeling another point has been scored against womankind in it's battle against mass media's objectification of women, soft-porn as advertising for everything, hard porn as part of everyday orgasms, sexualisation of women's bodies, cultivating of girls and grooming them into laydeehood rather than womanhood .. all very true, 
but I'm not learning anything new here, you?

Perhaps my friend thinks I dont approve of her for the decision she made; though the opposite is true. I approve of her no matter what. I understand how she feels the way she does about her body and I don't scorn her for that.
I deliberately chose to keep a respectful distance when she was going through her surgery and recovery.
I can be quite serious on matters of body image, having spent a few adolescent years battling anorexia bulimia. 
Surely I would be a downer to the party. 
My friend and her new breasts can have a drink and celebrate with friends her sexy new look, and I'll just politely not comment on her facebook status updates. 

I worry about her, though I hesitate to share it. I worry that if she cannot love and approve of herself now, breast implants won't fix it. How will her self-image be when she is older and looking less like the perfect body? 
Will she love and approve of herself then? Will she be happy? 
Or will her mind move to the next 'imperfection'?
Will she constantly be chasing happiness in this way?

When my friend was breastfeeding she looked gorgeous, by whatever standards. She maintained her size 8 figure, and now had perky, shapely breasts full of milk. Stunning. Me, I put on weight when breastfeeding and seriously need to focus on positive self-talk. "My changing body is perfect in providing for my babies and doing what nature intended." It is difficult not to focus on the desire to drop weight after weaning and simply enjoy being a juicy lactating Mumma in this moment. 
I, too, am scared of not meeting my own internalised image of how I want to look. An personal vision based of my own foul cliched conditioning, combined with a little successful un-conditioning, self acceptance and love.

I search deeper and realise that many times I have complimented my friend on a new haircut, funky pants, tattoo, pretty dress, kids outfits, etc. So what is the difference with breast implants ~ it's all about appearance right? 
I love questioning like this; love that chains can break in my mind allowing new doors to fly open and cast more of my conditioning away. 
I love talking to my friend about it.

To my beautiful friend, it is a pity we won't be having conversation around these concepts, as we have always had the ability to exchange ideas together without heated emotion, and, because of that, and so much more, I will miss your friendship.

Wherever your road takes you, YOU will always be there :)
I love you always.

Wednesday, October 5, 2011

Growing in Cloth Nappies ~ NICU to NOW :)

Moss n Kutura's nappies in order of use.
The tiny white disposable 'prem-prem' nappies saw my boys through their first few weeks in ICN, from. We then moved up to 'prem' size, which are comparable to the brown dolls nappy. We used a few cloth nappies like the brown one while the boys were in humidity cribs to make sure it we had everything we needed for a complete 'cloth system' and that the 'hospital system' would cope :p

We used the orange nappy, and those from the same colourful collection, from around 1.5kgs. Moss n Kutura moved into open cribs together at 1.6kg and 1.8kg and we said goodbye to disposables forever! At about 2.5kg we moved into nappies like the ladybug one. Nurses loved these as they did up with velcro, were all one piece, with no cover needed and 'worked like a disposable'. These are sized x-small or newborn and my boys were about 3 1/2 months young when they first fit into them.

We kept a foot-pedal bin by the crib and used waterproof laundry bags for dirty nappies, which Matt washed daily at Ron's House (Ronald McDonald House) where we (well he n Miss Bluqi) lived at the time. I had a beautiful basket for the boys nappies and another for their little 000000 and 00000 clothes, which I preferred to the hospy lin-bins ~ much more personal. 

Most nurses were supportive or neutral to my boys fluffy cloth butts. I did have one nurse tell me that she would 'just grab a disposable' if she 'couldn't work it out' and I could change them back into cloth when I returned. My reply was to inform her that "I did not consent" (powerful words in that environment) to my boys being put in disposables due to my own medical concerns. I explained that there are studies which link testicular cancer and poor sperm quality and quantity later in life due to the chemicals and heat that genitals are exposed to when in disposable nappies. I was there 95% of the time anyway and most staff knew that :) 
Many nurses loved them! "So much better than old cloth." and "It's so easy!" were among statements I heard from staff.  Also, "Can we use this one next?" teehee .. we do like our funky minky prints!

The three nappies on the bottom row are one-size nappies - great value! The first is on the small setting, the second on the medium and the third on the large. At 15 months young Moss n Kutura are in the medium setting. I wonder if we'll need the large setting before we retire them in favour of the loo.

We have not used a disposable nappy since ICN. We developed an easy and complete system during our 8 weeks in ICN which we used part time, then moved into full time cloth shortly before moving to SCN, where we stayed for 11 weeks. Humidity cribs, surgery, hospital transfers, parentcraft, holidays, interstate travel, cars, outings, camping and overnight cloth nappying with twins shows cloth nappies can be done in any situation. 
Such a gift for babies and their environment :) 

Saturday, September 24, 2011

Breast Milk Sharing

Not every woman can breast feed. Many that can chose not to. Surely we have enough willing lactating breasts to nourish all the human babies with human milk in our village, community, town, state, country ~ the world!

Instead of using technology to create artificial milk and recreate milk from other animals, we could use it to help us in our quest for all human babies to have human milk. In today's world of synthetic formulas and access to animal milk we have sadly forgotten that there is nothing more natural, utterly pure and most healthy for our little people as milk from within our species.

While I was in hospital with the boys (26weeker twin prems) I diligently expressed to maintain a plentiful supply, tube feed my tiny babies and create a stockpile in the NICU freezor of 'liquid gold'. In time I was breastfeeding both babies, yet still giving them top-ups of expressed breast milk (EBM) via a nasal gastric tube. The suck/swallow reflex of breastfeeding was tiring for my prems and weaning from tubefeeds EBM to exclusive breastfeeds with twins was a journey that introduced me to sharing breastmilk <3

A friend who had been bringing my family and I meals each Sunday for a few months told me about a woman with a newborn baby who was in need of EBM and asked if I could help. I did the milk maths with a nurse around what my boys would need, and spoke with a lactation consultant, and soon two litres of milk was in the hands of a grateful family. I cannot tell you how good that made me feel!

However, our milk needs changed! With Kutura breastfeeding well without top-ups and Moss weaning off his top-ups. I was concerned about having enough milk to get us through to Moss' weaning from top-ups, but was keeping up ok when the answer to Kutura's 'colic' surfaced. He was starving! He had hypoglycemia (low blood sugars) due to an immature pancreas. It was decided that he would be fed 2 hourly, with every second feed being a bottle of EBM with 'polyjoule' mixed in. The polyjoule was basically a cornstarch used to stabilize his dangerously low sugars.  I wasn't prepared for my body to stop giving milk to the breastpump. Expressing and breastfeeding for two also meant it was difficult to determine when to express, as Moss in particular, had a weak suck due to his compromised breathing (he was still on a breathing aid with oxygen called vapourtherm).

Kutura's sugars were under (fragile!) control, Moss weaned from vapourtherm to oxygen and our discharge from hospital was close; and then delayed again. My frozen milk stash was dwindling and I was having trouble expressing milk. The stress of this obviously didn't help with my supply! I agonised over the decision, then finally took some Motillium and somehow my milk supply made it through until it was time to transfer from Brisbane back to our local area hospital, for a day or two before going home.

We made plans and I sent the bulk of my EBM home with Matty, my partner. There was a further delay which meant I didn't have enough EBM for the extra few days. Scary! One of the other women in the NICU with a gorgeous little prem boy, who I sat and expressed so often with, started donating me her milk. We didn't tell the hospital I was using her milk, she simply handed me the containers of milk and I labelled them with my hospy stickers. I knew the system wouldn't be up for it. This got us thru our last few days and we were off!

Once at Nambour hospital, we were held there longer than expected, so the EBM I had brought with me (which was not from my breasts) was not enough keep up with the boys - it was like I was feeding triplets between the demand feeding, bottle feeding ebm and expressing. I hadn't slept in days. The community came thru for me. A woman I had never met before arrived that evening, gave me 500ml of EBM, breastfed one of my babies and left. I have never seen her again but am oh so grateful!

Once home I found I had no time to express. I was demand feeding Moss who was on oxygen and still needing top-ups from EBM bottles in the evening, and feeding Kutura every 2 hours alternating breast and EBM with polyjoule. I was also testing his sugars 4-6 times a day!

So bring in the community! I put word out that I needed a lot of milk fast. EBM started arriving from all over the place to my home in the Sunshine Coast Hinterlands from Brisbane, the Gold Coast, Bundaburg, Newcastle and when times got tough the Adelaide community pooled resources and had 10 litres couriered to us on dry ice at the communities fundraised expense.

Kutura's sugars came good after a few months, and Moss' lungs got stronger so we weaned him first off the oxygen and then off the bottles. Finally both boys were exclusively breastfed. I had another offer of a shipment of EBM from women in Sydney, but declined as my freezor was half-full. Such a great feeling ~ to be was feeding my boys from my own body yet with the back-up of EBM. How I love women!!

A friend organised most of this for me which included screening women around ages of babies, foods they ate, being non-smokers and non-drinkers and eating well, having had bloods done recently and how to store and transport the milk. A facebook page meant everyone could stay in touch. The communication the internet provides means this can be a reality for every baby that needs it.

My boys are now 15 months young and we are still breastfeeding and loving it. I am not a failure because I could not meet all the milk needs of my boys. I am a success because I managed to stay true to my core values of human milk for human babies. I could not have done this without the village community of the women who supported me and helped me feed my babies.

Forever grateful!

Friday, September 16, 2011

Gratitude and Complaint

I have been trying to put together a beautiful collection of photos for the corridor of fame in the NICU. I paced those corridors so many hours, looked up at pictures of tiny fragile babies alongside their healthy 1 or 2yo picture. Such hope they provided for those of us in there, from those that had been there before. A generous thankyou is usually included for the sta of the NICU. Yet I cannot bring myself to put my 'thing' together for the walls. It's not that I don't feel grateful, it's just there is so much ummmm 'feedback' I am yet to give.

But I haven't done much around getting my formal complaints in either. All the interventions that happened without my consent. The way certain staff members behaved and how they shouldn't be there. The way the system is set up for convenience of staff, not mothers n babes. I guess I haven't gone thru with this coz I am so full of gratitude for having my babies home with me.

I am thankful for our neonatologist explaining everything to us, taking the time to answer my questions most days, changing the way things are done to accommodate the way I wanted some things done and for thanking me for fighting to have her called ay home on a night where the other staff on duty were fucked-in-the-head and I kept saying 'I don't consent to anything' until I speak with her! I am thankful she has stayed on board to be the boys out-patient doctor. Yay for a human! :)

I am thankful for the head nurse of SCN. Her hugs, her chats, her ability to see that what I was asking was right and to find a way to allow it within a system that didn't. Her ability to gently pull me into line when I went to far. Her friendship. <3

I am thankful for the kindness of so many nurses, doctors ad other staff members.

Yet I still tense up when I think of the staff members that acted unnecessarily, without thinking, against my known wishes or that were downright nasty. I endeavor to get my individual shit down in writing, for the benefit and advocacy of future families in there. I know once I have done this it will be easier to continue on my life in gratitude and warm thanks for what I have learnt, who the experience has made me and for my beautiful family :)

I am even thankful to the staff at Gympie Hospital ~ for not killing us.

Sunday, September 4, 2011

alternative mind - am i crazy?

I am not the only one with an alternative mind. It is becoming more common. We are becoming more aware.

Many of us have alternative minds and this influences everything .. think attachment parenting like baby-carrying, non-vax, homebirth, homeschool, co-sleeping, cloth nappies, extended breastfeeding, delayed solids .. take into the broader world and we have failsafe diets, non-city living, political activism, environmentalists, earth loving, non-consumers, natural medicine, a spirituality of One .. the list goes on. I, like many, am not 'mainstream' and enjoy challenging and exploring my own CONDITIONED RESPONSES to the world around me to better myself.

Feel free to challenge my opinion - I love it!  Discussing ideas helps me solidify why I feel a certain way, or the opposite - bust me out of an old behavioural pattern. Either way, I have learnt something, and I am always grateful for that ♥

Saturday, July 16, 2011

bubba comic

One Year Young

The boys birthday came and went and it was nice not to do anything! Well, actually we went to the Temple where Ochre and Azuah's ashes were scattered and I had a CRY!!

Moss and Kutura have come so far, Bluqi and I are finally reconnecting on a deep level again and life roll into a blurr of breastfeeding, nappies, the next meal and sometimes sleep. Nothing medical on a daily basis, no survival strategies; just simply living. Matty and I even chat sometimes .. lol. This is all good :-)   I am stronger, raw-er and roar-ier for bringing my children into this world and so thankful for my experiences.

Medically, there may still be some hurdles for Kutura around his liver function and PDA (still-open heart valve). But nothing we can do for now except 'delay routine tests' with support and communication from Dr D as to when last-minute-testing is. By this I mean, why test unless we chose an action based on the result? There is still time for Kutura's PDA to self-resolve, so we remain hopeful that he will not need his valve surgically closed around age 18months-2years. We see no need to check his liver function as it was on the way up when he was tested regularly, and he is not a sickly child. He is crawling, walking-holding-hands, pulling up on furniture, saying 'Mumma' and 'gook' ('look') and is bright eyed and very (very very) active. At 9 months adjusted, he is actually meeting 9 month milestones and looks so cute doing so as he is still so tiny!

Sweet lil Moss is getting bigger. No lung or head stuff to report, except that his bottom 2 teeth have emerged :-)  His body is growing into his head and his spirit is becoming more alive in his current being! He is loud!! A singer, a music maker and a kick-kicker with both legs moving always together like a happy frog. 'Mumma' 'Dadda' 'Bubba' he says. Now loving sitting against pillows and his tummy time thanks to neck and upper body strength he is becoming more playful and so so happy to be alive! He will be starting physio with an osteo-cranial dude who, like Dr D, tells us that there is no sign of cerebral pausey which can be indicated by high muscle tone. He has some low tone, which is understandable given what he has come thru, but everything is in working order so we continue to support and encourage movement and play.

This is something I wrote on a thread recently in response to a woman, and like my wording so adding randomly here;

The profs at the nicu that we spent 157days at are in awe of how my boys are doing, as statistically one should not be breastfeeding and the other should be dead. i rejected much of what 'they' said along the way, did my own research, made informed medical decisions. what i discovered was a multitude of conflicting opinions within the staff and an open minded neonatologist willing to take us on.

I fought hard to be the one making the decisions for my babes, and staff members actually admitted to me that many decisions of a baby's welfare are made behind-the-scenes without parent knowledge as it is too much for parents to deal with. i dealt with it .. my <1kg 26weeker twins are fully breastfed. i am proud of that .. but i didn't do anything special - except refuse accept my ability to make decisions was less than adequate.

i also didnt fall for the 'dead baby card' of control ;P

Yep, still breastfeeding, still co-sleeping and still in cloth nappies full time ;-)
As life is getting easier (and I a using a laptop again) I endeavour to blog more xX

Happy Birthday to my big lil boys too! :-)

Monday, May 2, 2011

A few pics from March ~ boys 8/9 months young

    Moss n Bluqi

                                    Home :)

Big Sista Blu with Kutura

Such tiny big boys! With great nappies ;-)


Moss ~ the boy with chocolate eyes

                                               Dadda with K

Standing K with Blu

Sunday, May 1, 2011

when both babes are asleep it's time to get thing done.
But why would I move? <3

10 month update!

Well, this update has been a long time coming!!

Life is busy at home with the tiny boys .. and our wonderful big girl to help. Can't believe she is 5 and the boys now 10 months!!

Did go to Brisbane to get the eyes looked at, considering Moss has a cyst in the vision part of his brain we thought we'd make sure all is well there - and it is :) I actually think Moss has the best eyes out of the 5 of us! Kutura hasn't been to another liver clinic, since (thanks to Nambour Hospital) we still don't have the compiled results of the last one we won't be putting him thru that again!

Havn't had anything to do with Nambour Hospital since the last saga, yet they keep sending us letters saying we have missed appointments and are therefore norty. Tho we never receive letters saying we have appointments. Weird. Perhaps just their way of getting us off their files as if it is out fault rather than theres. Will be writing to local MP when I get a spare (lol) moment. Such shocking and unprofessional people skills from that place!

After eye clinic we went up to the NICU. Wow .. the way that place smells like a hospital is full on .. I really was climatised to that place. Brought back so much emotion, especially seeing a friend who was still in there :( .. could have been us.
Dr D was in her office, after hours, a great time to chat. She offered us a place in her clinic when I said I was just going to piece it all together myself if I can't find a decent paed to help me. I was soooo happy to hear that .. funny this is, I haven't gone back to see her lol .. Wanting to tho.

Moss had 4 ear infections back-to-back .. so no way was I taking him to a place of germ infestation (aka a hospital) .. so we never got to the respiratory team; we weaned him off home oxygen ourselves. We were over-cautious if anything; so he was probably on it longer than necessary. We bought an oxymeter and had a nurse friend check him out a bit for us. He is just rocking! Such a handsome lil man now we can absorb the beauty of his full face. The 9 month day was the day it was finally off for good - so been a month now.

Milestones ..
Moss has such intricate hands and fingers .. can get noises while clapping now, very dexterous passing toys and things from one hand to the other, notices everything that goes on around him. Loves to sing, especially in the bath and is overall a very vocal and HAPPY little baby! Loving that his hydrochephalus is self-resolving; his body is growing into his head and he can now hold it up on his own, and have a look around when in 'tummy time'. That milestone was a longtime coming and he (and we!) are loving it! :)
Moss is our routine keeper, he calls the next meal, his sleeps tell us when to travel, he is usually the first in the bath and in bed .. then the rest of us follow in order. He loves the car and is a fantastic lil travellor!

Kutura is strength manifested! He has been walking (holding our hands to balance) for over 3 months now, so that's the equivalent of 4months adjusted age! lol .. not much into being a baby, not wanting to crawl as he finds it frustrating he cannot run as fast as his big sister .. hahaaa. He is very social and is all smiles!! He likes to get around with his tongue hanging out to taste the world .. more and more he is my lil gecko boy! He takes some energy to wear out .. and I have a feeling he is going to get more energetic - he will get this family up and moving again..! If only he would sit still long enough to get in the car ;-)

That'll do for now .. as Miss B is here, eating an egg, despite it being nearly midnight and I have sat up to be able to write this .. a mother of 3 never has time to herself I guess ..

Family and friends
Would love you all to follow this blog as you followed my thread at JB when we were in hospital.

Will get the pics cranking sometime sooooooooooon
Love and light xX

Friday, April 15, 2011

My New Blog..!

As you can see, this blog has been cut n pasted from elsewhere. That elsewhere is an awesome forum and community of people whose comments of inspiration no longer flutter thru my words .. :)

Moss and Kutura are now 9.5 months old. We have been home longer than we were in hospital now - but only just. Moss has weaned off oxygen and we have also weaned ourselves of specialists and unnecessary medical inconveniences. The wonderful Dr D is our paed now .. tho we had a local GP listen to their chests before winter ;-)
We haven't checked the scales, but I believe we are over 5kg each now

Kutura is on solids with fury! Moss enjoys a quiet pear with slippery elm .. the milestones they are meeting are as different as they are .. I will get some photos and more creative storytelling up soon

Thanks for reading .. Suzi xX

7 months young update ...

Looks like this birth story is getting published in Down to Birth magazine

here is the update I have just sent the editor:


After 2 months in intensive care and another 2.5 months in special care we made it home.

Moss and Kutura are healthy and happy at home. The long term outcome for these babies is not yet known, but then again, nothing ever really is. Both babies received much needed blood transfusions, had various interventions of both minor and major sorts. The more compassionate of the staff helped me with interventions while in kangaroo cuddles, and later on the breast. I was present for a brain tap for Moss, which is a sterile procedure and usually a no-no for parents, and I know Moss was all the better for my being there, of course. When Kutura's ventilator was removed after his open liver biopsy and hernia repair, I then held him to my chest and he recovered on me for 4 hours. A first in this unit staff later told me. I also used cloth nappies for 3 months full time, and a while part time before that.

I share this information because a 'standard procedure' needn't be if it doesn't suit the individual situation, and in my case it rarely did. I feel more parents would feel the same way if the system didn't have itself so ingrained in staff routine. When reminding staff of this some got angry and sought to pull rank over me, of which I would remind them I am the parent and reclaim my space cribside. This took place in varying degrees depending on my boys conditions, and the facilities are not set up for the 24/7 kangaroo care I wanted to give, but we managed to compromise much of the time. Where there was no compromise I fought, I swore, I called meetings with head nurses and doctors.

The NICU is an environment we don't usually plan for and as homebirthers can catch us by surprise. I found myself fighting for time and space with my babies and to take initiative over their daily care and complex medical decisions. I was filled with adrenalin and birth magic. I used those hormones to keep me afloat and focus on my babies. I didn't let anyone tell me 'no' and that is a more difficult task than I had imagined. An environment full of coercion and fear; and the magic of modern science helping such tiny babies live. But it was the love of family and the support of community that enabled them to thrive, both in hospital and now that we are home even more so.

If reader of Down to Birth wind up in this setting I am happy to be contacted for guidance and support; actually I would be honoured. The first thing I would remind you of, is to never let anyone undervalue the love a woman has for her babies.

Suzi 4th Feb 2011


we are not home
in another night or two with Ks crashing sugars to make a plan

I have no EBM and supply is crap today with stress. I have some in the freezor at home; anyone wanna bring it to Nambour hospy for me? Or donate some of your own? Grrrrr .. come to far to use formula now and I need EBM to mix with Ks polyjoule for his hypos ..


"It's my great honour to announce that Suzi and all her family are finally back home where they belong. So one part of the journey ends, and a new one commences.

Suzi we're so honoured by sharing some small portion of this tumultuous time and I hope we can continue to hold you in our hearts and our community through settling in and onto your new lives as a tribe of five. So much love to you, beautiful mama.

Anyone with EBM, please pop it in your freezer while Suzi sorts out the next few days and can access it then."


it is so good to be HOME!


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~

Nambour hospital was hard. The boys didn't settle into the new enviroment and neither did I. The doc on the first day said we could go in the morning, then the doc on the following day wanted to keep us in. I agreed to stay to work out a plan around preventing Kutura's low sugars. By the next day we were on our way home. I was a complete mess, so full of raw and frustrated emotion.

Finally we were in the car .. the boys settle beautifully into their seats along side their sister. I cried then laughed then cried then laughed. Matt kept saying how great the car looked!

The first night at home the boys were nothing short of confused! They stared at the brown walls trying to work out what was different .. well, that's what I thought anyway. I played their CDs that I have been playing for them in the NICU these past months. Tried to bring them as much familiarity as possible. By the second night they had settled beautifully. They are now comfortable in all the rooms and love being outside on the deck and underneath the trees. We are getting into a routine around our high needs boys. Between Moss' oxygen and Kutura's sugar levels we certainly have our hands full!

I remember thinking when I was in hospy that I would get home and babymoon for at least 2 weeks, not letting anyone in .. just my family and I!! But now I want nothing more than my friends and family to visit. My boys have been handled by so many people in a medical setting that I want them to feel some love! A friend came to visit today, made me tea and gave Kutura his bottle while I breastfed Moss; asked me what I need. I need wimmin around me!! I am nervous about having lots of kids around; both for my own stress levels and due to the boys health and sensitivity to bugs n stuff. But am wanting playmates for Bluqi. Such a fine line I know my gorgeous community will read well and help me with.

I didn't know how pent up and stressed I actually was until I now feel some of it drift away. I want to melt into a pool of love and relaxation; mother my babies in my own space, in my own time, my way. With open heart and tears of joy!


yay for home!
been two weeks now and am fantasising about getting two hours sleep in a row
this is hard and wonderful
challenging and rewarding
two high needs babies is waaaaaaaaay full on
times like this remind me that our style of parenting is meant to be community based, not just family centred
anyone wanna move in with me and be another pair of hands for a while? seriously!
had lots of visitors .. every one of them has held a babe, given a polybot, changed a nappy or helped with washing
had a feather of a friend blow in on the breeze a few times and stay overnite to 'be of service' .. holy fuck i mus have some good karma

the boys love it here .. so do we
tiredness is taking it's toll on all of us .. but we are still smiling
we don't have the energy for anything but!

planning to go to the local impromtu women's camp his weekend
packing oxygen, spare nasal prongs, blood sugar test kits, polyjoule n bottle stuff, cloth nappies, slings, clothes for me n boyz, ec mat .. once i get there .. it's gonna be great!

babe awake ..


was worth missing all those hospy clinics so that the boys first outing from home was into the community with love
we were nurtured and cared for and matt n blu had the space to play without it being all about the boyz and they needed that too .. getting home with da boyz after camp was cool .. they were like 'oh yeah, this place' .. twas the first time they had retured somewhere, you know? so now they know it's home base.


we're just LOVING IT..!!

we have been given a lot of help from community .. was slow starting and i felt like i wasn't coping (and of course i always slide into moments or days where i am not! ) .. but i have found as long as i am not here on my own with da boyz i am ok. we are working out matt n blu's days out and tying it in with people comin to spend time ..

home community support have come out too .. the first couple that came out were lovely .. then a nurse came around with a student nurse and indigeneous health worker and she brought the system in with her .. came in with her own agenda and started on what she was there to do and how she had to write up her notes .. shame that she had two lovely wimmin with her that had no space to support me coz the status kinda bullshit lingered around this nurses notebooks. anyway .. she won't be coming back .. . .. others from the organisation have come since and have been wonderful in getting us medical supplies we need until i am ready to start going into the world and getting them myself

i am ready for clinics now tho .. coz i have a theory about what caused kutura's abnormal liver bile ducts and possibly even what is causing his low sugars .. basically the cpap he was on filled his belly up with air, i think i talked about 'cpap belly' when it was all happening. what i didn't link it to at the time was his early developed suck/swallow reflex. this commonly kicks in around 32-34 weeks (34+ according to the NICU) .. but kutura was swallowing at 29-30 weeks. shove a dummy it that cpap face full of air and he swallows even more air! his distended belly created pressure on his internal organs, limiting space and preventing the bile ducts from growing properly; so as the liver biopsy states, he now has abnormal bile ducts. his liver function is improving and i am confident with the right TLC his body will heal, grow and thrive. the pancreas is in the same area, and perhaps it has been affected by the cpap belly air pressure thingy too ..?? if this is the cause for the low sugars he is experiencing - how can we help this heal? this will be my question for the liver specialist

i am missing Dr D .. she was our neonatologist and a local nambour hospital paedtrician will be filling her place in our lives now. not particularly happy with the one we have been assigned with .. she is kinda patronsing, works part time and is about to take 6 weeks off. so hrrmm .. will be trying to meet with the director there to discuss this

moss is breast-feeding like a champion and we have adjusted to the whole home oxygen thing. still feeling confident his hydrochephalus is self-resolving. we are in the home stretch month of this now

kutura's polybots (as we call them) are now routine. matt and i set our phone alarms and keep records to try and discover patterns. i have noticed that his lows in fact come at any time of day, but usually when he is either hot from exercise or too much blanketing, or it has been too long between feeds, or both. matt blu n kutura sleep in one room as matt does the polyboys 4hrly overnight .. moss and i are in the next room boobing away, but every 4 hrs i sneak in and breastfeed kutura (or sometimes take him with me if moss is in deep sleep) .. so he is gettin his 2 hr feeds. i have found having them in the one room overnight means less sleep for everyone and this way matt is getting better at waking up for kutura since he is right next to him.

we have been receiving EBM (expressed breast milk) to save me pumping. thanks to the wimmin behind the scenes making this happen . it involves so much communication and coordination, and if i had time for that then i would have time to express, wouldn't i? love you all lots!!

for the record .. my personal supply is rockin
i am sure when the time comes to wean kutura of his medicinal polybots my body will embrace it

rambling now .. but i am starting to think about a fortnightly outing for the 5 of us .. perhaps that attachment parenting meet (tho there is only one left b4 xmas ) ..

bluqi is such a great big sister, tho she misses the closeness we don't seem to have time for anymore .. we are trying to work such back into our lives again and we know this will get easier and that the worst is well and truly over

love and light .. there is a baby waking xXXxx


Homelife is challenging and wonderful!
But surely you wanna hear me rant about the crappy system of care again, right?

First round of clinic appointments came and went, with attending none of them (not the neuro, or liver spec, or local paed, or respiratory ) .. was too busy trying to find our own rhythm. It's just not homebirth! Once we found our groove we decided we wanted to go to clinics on our own terms.

First meeting with our local nambour hospital paeditrician was a joke. We walked in, both babes hungry for a feed and unsettled with the whole movement thing after being snug at home the past month or so. So I ask if there is somewhere I can sit comfortably to twin feed. Sure I am told, she walks off, never to be seen again. Soon a couple of nurses collect our family of 5, take us in to a small space that isn't even big enough for a pram (lucky we didn't have one) .. what are we doing?, I asked. I was told they 'have to' weigh and measure the babies. I'm not here for this shit I told them, I am here to see a doctor. We all walked out and sat back in the waiting room. Me feeding one baby for 5 minutes, then swapping Matty for the other one, and so on. Dr comes out, she says, 'we really need to weigh the babies because.." I say "Let's start with what we need and then we'll get to what you need". Her eyes kinda understood, or surrendered, one of the two.

Later we were in her office, she dares to talk to me of formula as Moss weight is on the 3rd centile. What a fuggen joke. I will be writing a letter to her superiors about that. If she is really concerned about him, what about the steps along the way? Like, a referral to a lactation consultant to look at how he feeds, an enquiry into my milk supply, even fortified breastmilk should be suggested before going to full-fledged artificial food, no? Grrr ..

Kutura's sugars are low, yeah. But there was a few highs post-feed which I asked her about. She told me not to measure after a feed anymore. Hrmm .. helpful. I talked to her about my theory of Kutura's compromised liver growth due to cpap belly and edema while in the NICU and she didn't even include it in her lil report she sent out to the specialists! I'm going to stop there, you can see I'm not too impressed by this woman. Damb shame; for her

So here we are in Brisbane today where the internet is once again quick and easy and we went to the gastroenterologist to see Kutura's liver specialists. Since last week we have actually weaned him off poly-joule ourselves, and it was good to bounce what we are doing off people who understand sometimes Mummy knows things about her babies. Looking at increasing 2hr feeds to 2.5hr feeds sometimes to see how he goes. I was congratulated on how I went about this, and clearly they weren't impressed with the lack of advice/education from the nambour paed.

For those that have been supplying us with EBM .. thankyou!!! Please keep it coming. Previously, we were using is because Kutura's sugars were often low, as he has a high caloric demand, and basically can consume as much as twins! And then there is Moss too, . So I was giving Kutura 60mls with poly-joule every 4 hours, and breastfeeding him once or twice in between. I have been breastfeeding Moss, but with his hungry brother at my breasts all the time I give him 2 bottles a day just to make sure he is full

However, this week is seeing us weaning the poly-joule as sugars are beginning to stabilise!! Time to build my own supply up and have faith in my body to rise to this! I'm not sure how much milk I will need over time, we are currently using about 500mls per day (down from 700mls per day) and I will build my own supply carefully so as not to overload and burn out my body doing it too quickly. So don't stop pumping now!

Moss' head seems to have revealed itself. We haven't gone to his neuro clinic, so it is not official as such, but his hydrochephalus seems to have self-resolved! His head circumferance has gone from the 97th centile to the 75th centile ..
and he is now awake!

Love to you all xXXxx


It was Kutura .. wide awake, having a kick and blissing out on the ceiling fan Now boobing contently
Both boys were weighed today and are exactly the same! 4.35kg at almost 6 months of age (3 mnths adjusted)
I like the word 'adjusted' rather than 'corrected'. Makes it seem less like my body has done something incorrect, and babes aren't all born spot on 40 wks anyway, right?

Will look into a visit for Moss lungs in January. Get him off that extra O2 He's doing well, getting more energetic!

Boys had blood tests this morning. Pathologist telling me about her 15 years experience as if it was a reason why Kutura couldn't be on the breast for his veiny puncture. I told her I thought more experience would make it easier for her. I told them I have done this more than 20 times with at least 5 different doctors. Some would have me comfortably in a recliner while they kneel beside me, others prefer I sit on a chair. This morning's pathologist said to put him on the bed. I had them raise the bed, so I could boob him. She agreed, and I told her there has been success with this technique with the more junior doctors
She got the blood efficiently and Kutura's stress was minimised by being with me on the breast. Natural pain relief, mother's comfort. The same was offered for Moss, but this time in my arms on the breast as his test was a heel prick. Where Kutura cries in pain and annoyance, Moss cries in fear and lack of understanding. My poor little men have been thru so much.

Have to go to nambour for results. Will meet the boss paed this time me thinks. Heard good things about him.


Instead of an update, I thought you would appreciate this letter I just sent off to our local paeditrician.
I have come to think of it like sport.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~~~~~~~~~

Hi <>,
Thanks for sharing the bloods results with us. I am looking forward to hearing more about Kutura's liver function trend once you have compiled the ongoing results. The previous 3 tests showed an improving trend, so hoping for a big step forward with the recent ones.

Poor lil Moss .. his immune system and blood stuff has had trouble kicking in the whole way. Bit scary to think he hasn't the blood-stuff to fight bacteria! So glad he is on breastmilk to keep the antibodies flowing and stimulate his gut flora to grow naturally

In my googling i found this:

"Acquired Neutropenias:
•The most common cause of acquired neutropenia are infections.
•Vitamin B12, folate, copper and low levels of other nutrients can cause neutropenia.

Whilst still in the NICU (2 weeks before discharge) a blood test showed Kutura was B12 deficient, so it was assumed Moss and I were deficient as well, tho we weren't tested. Both the boys had B12 injections, I am yet to have mine, as I need to run around a bit to arrange. Damb system lol. That was about one month ago, perhaps another shot is now needed. Can we test for this next bloods please?

Also, Moss had a bit of golden staph on his face the week before last, following a scratch on the chin (always trying to pull off his nasal prongs!). The infection then seemed to go to my breast (itchy red nipple), then Kutura had a splotch appear on his chin and cheek. We have managed to clear it all up, thankfully using natural therapies, which we have done before with impetigo in this household. We have been clear for 10 days on writing this.

~ ~ ~ ~ ~ ~ ~ ~ ~

<>, for us to have ongoing relations I need you to understand that, while we appreciate your opinion, we do not feel language such as "he must be checked out and started on antibiotics" is necessary. This is your professional opinion, but not your right to impose a method of care on my children. Please continue to advise us, but 'allow us' (lol) to be the decision-makers. We both know you would have had my boys and possibly myself on ABs for staph, yet it is clear that there was no need. Your way is not the only way with all things. If the staph returns and persists in the near future I will come to you for a script, of course.

We are free-thinkers and attend your clinic to access the science and medication our sons' may need. We are not coming to clinic to 'report in' with the doctors, nor to go through the usual paces of the system, that individuals like yourself carry out. We appreciate having the usual routines and standard medical practices explained to us; as this allows us to make informed choices in accepting or declining medical services and pharmaceutical products you offer.

I want to take this opportunity to debrief with you around the first clinic we attended with you.

We were shocked by the suggestion to feed Moss artificial food. As a professional, what happened to advice before formula is mentioned? A referral to a lactation consultant seems the obvious first step. EBM in bottles or fortified EBM could be a subsequent option. How can a parent not question the intelligence of a system that immediately turns to such drastic measures if the numbers don't fit their text books? McDonalds fattens children up too, but if they are underweight it is not the food for choice, and neither is formula for babies. My own research into Moss' weight has shown me that the A.B.A. and W.H.O. would not be impressed by the advice we received at the clinic we attended.

There is a large team of doctors and specialists that take notes on our boys, yet is has come to our attention recently that these notes are not necessarily read by others in the care team. We, the parents, are the only people that know the full picture on these babies. We know that, you know that. In order to give us advice doctors first need to listen and hear what we are saying and asking.
Also I've raised some concerns and a theory around what caused Kutura's abnormal bile duct growth, compromised liver function and hypoglycaemia ~ and it didn't even made it to your notes.
I discussed this theory with one of the Directors of Gastroenterology at clinic in Brisbane recently.

I also shared my concerns with you about Kutura's BSLs being high, at like 9.9 post feed. You told me there is no need to take sugars after a feed and that these numbers were of no concern. You suggested we to continue with the feeding plan already in place. I found this response contradictory to my own research.
At present, Kutura is no longer on ployjoule. We have weaned him off it completely by the 16th December, and sadly this has taken place without any support or consultation with the paediatric unit at your hospital, or any hospital actually.

I gave the specialists in Brisbane the above information and they have now advised us to feed Kutura every 2-2.5hrs and take his sugars 2-3 times a day, with a view to moving to 2.5-3hour feeds as the BSLs indicate. They did note that the extreme highs following low is abnormal and were of the opinion I did the right thing weaning him off the poly-joule (despite his occasional low) at this time.

The boys weights are ironically identical, 4.385kg. I too am concerned about Moss and am giving him at least two 60ml bottles a day of EBM. I feel his low weight is because he is a slow and social feeder, and irritated by his nasal prongs during feeds.. I am hoping the bottles will help him learn he wants to guzzle, and he is already taking to the breast with more gusto!

Currently Moss has a stuffy nose and thermometer says he is around 36.5 – 37C
I have him on echinacea, homeopathics, probiotics, quality breastmilk and love.
I have increased his oxygen from ¼ to ½ overnight, and at times in the day when he will tolerate it.

I hope you receive this letter well.
With due respect,
Suzi, Matt & Family


Kutura is no longer on polyjoule and his sugars have stabilised
He can now sleep for up to 4 hours
We weaned him before solstice, and have since been weaning the bottles as my own milk supply increases.
However now, I have found that Moss needs extra EBM as when he growth spurts he hasn't the energy to drain the breast and the bottles seem an easy evening meal (especially now he has super-sucker brother on here more too)

So, we were going thru up to 800mls per day. Now we go thru about 300-400mls per day. I am hoping my milk supply will continue to increase and as Moss grows strength and comes off oxygen. I hope this takes the pressure off the community a bit.

I have asked Temple to compile a list of names and addresses of women who have donated so I can send out personal thankyous; any help with that appreciated (be sure to include your own )
I would also love a list of names/addresses of EVERYONE who has helped us in anyway at all I hope you are up for this Temple ) .. will start a new thread about it

Off to update my own thread .. thanks again
Da Boyz are just rockin' thanks to real food

They are now approaching 5kg (I think??) .. and are just sooooooo much fun!
I am loving that Kutura is finally living in my room with Moss and I. At first he lived in Matt n Bluq's room as Matt did his polybots and I snuck in and dreamfed him with the breast every other feed. I have got the hang of getting thru the night on my own with da boyz, which gives Matt a good sleep to give me a break from the after the morning feed so I can sleep or eat or housework or shower or .. ?? what'da'ya mean OR .. what else is there??

Love n Light and Hippy Now Here


Surgery & The Home Stretch

surgery today .. what a rigmoral trying to get things sorted
if departments could communicate better with each other things would be so much easier!
i am so glad i am assertive .. i really don't think they way they usually do this standard procedure (hernia repair) would work for kutura at all .. more later .. just send love!! especially in the afternoon whilst in theatre .. oh my lil big guy i hope we find out what is going on (liver biopsy) and fix up your sore lil insides that keep squelching to the outsides!


This week has been so fast and slow. The surgery went well, but lead up was stressful.

The surgery takes place at the children's hospital, and babies need to fast for 4 hours before being put under. The usual procedure is to wheel a hungry baby to the children's in a transit crib. I did not like the idea of my crying hungry scared baby being treated this way, so I asked if we could do the intubation and sedation here before going over for the GA. My consultant Dr D was off sick much of the week, and another consultant sent a message thru the nursing staff that my request was declined. I asked to meet the anestitist (spelling? let's say sleep doctor ) .. so he came over, coz that is standard procedure too, to meet me. He told me he would be happy to do the intubation and sedation here in the nursery, but that it is considered professionally rude, so he wouldn't jeopardise his working r'ship with the unit. wtf?? grrr .. i asked again to speak with da boyz acting consultant, who i still hadn't met, if he would do it, and he once again passed a message 'no'. I have heard about this particular Drs absence around parent communication and involvement in decision making, so I wasn't impressed. I was scared for my lil man and feeling emotional about it all.

That was Weds and Thurs. Friday came .. the big day and I was freaking out. If Kutura was to have the surgery he would have to have the canula put in by 9am, as that is when he was to begin fasting by, and I wanted the canula inserted whilst on the breast. It was 8.30am and I still didn't know shit. I starting talking as if the surgery wasn't happening. I had the unsigned consent form in my pocket, which a few staff members found amusing, and others didn't. Then in walks Dr D .. "I wouldn't miss this for the world' she says. She had been trying to will herself better and it must have worked! She told me she was happy with my plan, and that we needed to begin. The lovely Dr L (who was our retreival Dr on day 1) tried to get a canula (for fluids) into Kutura 3 times then handed over to Dr D. On the 5th attempt she was in. My poor lil pin cushion was having a flat-vein day, and it was so easy the last time Dr L put one in I stood up and held him in my arms as we walked around to intensive care.

I lay him down on the cot (an 'open care system', which basically means has a big heater over the top rather than use a humidity crib - better for surgery) .. and he looked mildly amused at his surroundings. Soon he was heavily sedated and ready to be intubated. My cue, as agreed with Dr D, to leave. I went back to parent craft room and cried! The phone rang soon after, I was told the canula had tissued and the first attempt at intubation had failed. I hurried there, sang to him, calmed him in his groggy haze of confusion and pain as a needle was placed in his little body for the 8th time that morning. The tissued arm was swollen with morphene and we couldn't tell how much was actually in his system, so he had his full dose once again thru the new canula. Now he was truly out. I left and Dr D had no trouble intubating that time. He is such a fighter .. I am thankful they actually managed to get the tube into his throat!

I returned soon after and had flashbacks of when Moss n Kutura were ventilated for weeks in those sterile rooms. The smells brought back memories of the early days. I was overwhelmed with emotion as I looked around me at the machines and listened to the noisy monitors. I went back to special care, my boys now 15-20 metres apart from each other, and gave Moss a breastfeed, and leaving him safely in the arms of Heather.

The trip to the children's was fast. Not too many dorries trying to peek in the crib this time; I hate that. Kutura's nurse handed over to the surgery nurse. I explained that Kutura was in a cloth nappy, and gave her a fresh one for after the surgery and a wetbag for the old one. As Bluqi was dressed as a ****bug it seemed right that he return to us with his ****bug nappy on, with raw silk liner post op. I was so stong, until he was wheeled away, and I burst into tears.

The hernia was repaired, the hydroseal was drained. A piece of Kutura's liver was taken. We made it back to the nursery. I lay my body over his. I watch the monitor and listen for secretions on his chest. He is suctioned often. That is a good thing .. his body is strong enough to fight the ventilator. The suctions increase, I stay with him overnight, except to breastfeed Moss. Does Moss know why we aren't there? He seems happy. He actually seems well rested without his brother waking him up all the time!

Kutura was extubated at 4am. I sing to him. I don't know how I managed to keep my voice so steady. I massaged his chest and face as the tape is removed and tell him I love him as the tube is pulled from his throat. He coughs and cringes and cries a raspy cry. My instinct is to gently lift him to my chest, I tell the nurses I am picking him up, I kinda ask 'is that ok' tho I am doing so. They are watching him and the monitors. It is hard to tell if he is desaturating due to the movement of handling him. This is unfamiliar territory for the staff and I can feel that. I ask them to help me to the recliner and they do. We try to settle in, and it appears Kutura's sats aren't good, I ask for a few minuted to settle. The Dr on duty looks at us 5 minutes later. 'Sats of 100' he says, 'Perfect, he can stay there' he says to the nurses. We slept from 4am until 8am when I was woken to a tap on the shoulder to say we could return to special care. That was the first time an extubated baby has recovered on mother's chest in this unit. He rested well and recovered quickly.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ ~~~~~~~~~~~~~~

So here we are almost a week post-op .. still no liver biopsy results .. more soon .. babes awake xXXxx


we are heading home! yeeeeeeeeeeeeeeeeeeeewwww................!!

this last week i have felt like a bird in a cage. we have had the boys in parentcraft room by day, but as Kutura has had very low sugars overnight medical staff wanted him back in room 7 fair enough indeed .. but going nuts here!

the boys don't settle properly in their big hospy crib anymore. they can sense when we go, hate sleepin on their backs every sleep, are woken by the noises of the place and the bright lights are just horrid. our room has had a well-used admission spot the last week. I couldn't help but sit and cry, my heart aching as a 15 minute old baby gets a vitamin k shot under bright lights in a humidity crib and cry out for mum, who can't hear coz she is up one floor. another admission gets wired up to a monitor, heel-pricked a few times, settled into bed the has the vernix gently wiped off by nurse in preparation for dad coming to visit. i understand more why they do these things now with sick babies; but the WAY i would have such done and the way it happens in these institutions is world's apart. i don't hide my truth from the nurses as i cry and send the babies love. i think the reminder is healthy .. and so do some of my favourite nurses

back in parentcraft Moss slept after a big feed at 8.30pm, and Kutura was clustering as usual. nurse came in to say go back to room 7, we agreed that once Moss awoke we would. at midnite another nurse came back - Moss is a good sleeper
so off we went to special care. i spent the next 2+ hours settling the boys into bed. i vented my frustration to the lovely team leader as i went back to my room. I told her how we were sleeping, and now we are unsettled in bright lights, and that Kutura is due to feed again in 30 minutes, and that this is bullshit, and also no, i won't let strangers bottle my babies while i sleep'. she looked at me tenderly. i really love some of the women that work here.

the next day when we collected da boyz we knew we would not be going back to room 7. mgr A came around and talked to us about managing sugars and doing the BSLs ourselves (blood sugar levels; lil prick of blood) on his feet and to report in. i have my phone alarm to make sure he doesn't go 2 hours without a feed. we finally had our first night all together .. matt n blu stayed late, then heather and i did the all night feeds. sometimes we even slept. last night we started K on poly-joule .. just a sprinkle in EBM at 11pm and again in the early hours to keep his carbs up and his sugars safe. it worked and he went 2.5hrs between feeds. will be trying for 3 hours tonight.

as for his liver.. it can be dealt with as an out patient. he has immature bile ducts, which will hopefully grow. there is more to it that that, but no need for a lesson here he had another liver function test (LFT bloods) taken yesterday and those results will determine how soon we return to clinic at the children's hospy.

learning about Moss' oxygen .. am damb good at changing his prongs just right now. matt has oxygen at home and ready for us.

da boyz and i are going by ambulance to nambour hospital monday with a view to home on wednesday, matt, bluqi n heather will meet us there. medical handover is important for it is where we go if there is an emergency and i want them to know who we are and what we about should anything happen; that's for sure.

we have been here about 130 days or so now .. whoa .. homeward bound at last!


on da way home today from nambour .. yeeeeeeeeeeeeeeeww!!!

lovely friend is in my house making it beautiful today and putting food in my fridge
(it must be a mess after all this time .. matty n blu coming and going just dumping stuff, collecting other stuff and coming back to hospy again) .. wow .. home with my boys

may the day be lovely!!


Special Care Continued ..

Moss has come good after his blood transfusion Actually he is great .. fiesty little boy just like his brother!! He has gone from 1 or 2 breastfeeds a day to 'I want the boob NOW' .. so we have had a frustrating few days as he is working it all out. He wakes up hungry beside himself and still doesn;t quite trust that all this sucking at the breast is going to satisfy him as he is so used to his tube feeds. Loving his spunk!

Good news about Kutura - gastro team has ruled out all the big nasty conditions with their testing and feel that this is a reaction to the TPN (vein food from micro-prem days). Dr D thought it was this in the early days too, but as it was prolonged and not improving was concerned. Gastro team suggested a shot of Vit K. They said this will do him for a month and if it helps we are all good, that's all he'll needs. If it doesn't, we are back to testing.

Had a great night breastfeeding both boys in twin feeds every 3 hours. Yay - we are doing it!
Just got a call from the ward .. more later xXXxx


What a week!

Moss is now off vapourtherm and just on sub-nasal oxygen. That is the 'usual' O2 that he can come home on. He has an MRI booked for next Wednesday which I am quite nervous about, despite the technique they use ('feed n wrap') which seems ok. Kutura is coming with us too, as the boys stay with the boobs at all times! Moss is feeding well and fiesty .. can't believe how much weight he is putting on! His reflux is better with the medication he is on and I am sure his next heel prick will reveal a successful blood transfusion, as he is just fantastic! He is loud and fussy at times, as he is still learning to attach properly and if I don;t get there quick enuf he is just beside himself! .. which is difficult and tiring. I love that his first day of demand feeding was on our due date. Such a sentimental

Kutura's colour is looking better after his Vit K jab .. bloods today. I am hoping this is the last time he is pin cushioned. I breastfeed him when this is happening (like I do with heel pricks and other interventions) .. and I have insisted that a seniour registrar or above do it as I am sick of the incompetancy of people learning on my boys as much I am told and retold that we are public patients and this is a training hospital :rollseyes

I don't think I have talked about the eye tests yet, as they are so traumatic I have had a meltdown most Mondays when the eye team is here. They are given 2 lots of drops 15 minutes apart to dilate the retina. The boys are held still by a nurse, eyes forced open with little metal clamps that are then widened. The eye doctor then shines a bright light into their eyes and looks into the eyes wearing scary-to-babies-I'm-sure headgear. They scream like nothing else, then pass out asleep from the overstimulation and trauma. They are looking for ROP, retinopathy of prematurity. Basically it means that the retina can peel off, common in prems, and even more so in prems under 28 weeks on a lot of oxygen in the early days. Stevie Wonder is blind from ROP and it is now treatable with laser surgery but it has to be caught at the right time, which means constant monitoring, via weekly or fortnightly tests. We did our best to minimise these, we skipped the first one, then a few here and there. We tried to make these educated misses, but the eye doc is very conventional and it made it hard to feel safe in doing so. He was away for a few weeks and another stepped in who helped us with our timely test skipping. I couldn;t sit in .. Matt sat with a syringe of EBM and was on cuddle duty after the tests. I can;t stress enuf how horrible this is. I don't think it is overley painful, but the psychological trauma seems massive and I am thankful it is less that a minute per eye each time.
Both boys have finally been given the all clear. I can smile on Mondays again.

I am tired, emotional and I have had enough. We all want out.
Staff are telling me I am overtired and to get some sleep. I am sick of explaining that I can't sleep at Ron's House anymore, I am breastfeeding 2 babies. They tell me to tube them overnight and get sleep. I tell them that I must wake to express anyway. I don't understand how they can't understand, you know? When I am not in the hospital I am panicked and anxious. The last few sleeps I did have at Rons (over 2 weeks ago?? longer??) .. I was there an hour or so, before up and ringing the ward to check on the boys. I have been sleeping on the couch in the parents lounge. My nurse on duty either phones me and comes and tells me one or both of the boys are awake. Sometimes nurses are asleep on the couch as they take powernaps during night duty. Sometimes cleaning staff are having breakfast in the room. Hardly a parents lounge, but there is not much in the way for staff here either. It is a public hospital, the resources are so minimal. I sleep in the recliner tnext to the boys too, but I don't get a good sleep there as I wake to every monitor alarm and baby cry, and there are 5 bubs in the room, so it can be constant.

There are two parentcraft rooms here. They are for use by locals on the transition home, or parents of dying babies to be close to them. I have asked about using one so I can sleep in an actual bed and have been booked in for Saturday. Dunno how many days I can have it, but it's usually 2 nights. I am getting more disciplined at taking rest at night. I feed the boys and hand them to the nurses to settle, then go back to sleep on the couch. Dependant on the nurse on duty of course .. In the day I spend more time, so perhaps this will help them with their day/night cycle.

Now that Moss is on just O2 he is portable! Am aiming for a pram ride with both boys today, they will fit in a single pram next to each other, with the portable O2 tank underneath. Not sure where we can and can't go, but I am hoping there is an outside area somewhere that is not filled with smokers! I am nervous about smoke and pollution with their little lungs. The smoking side of my verander at home will not welcome smokers any more, and that's just the start of it! .. Have to be careful of O2 with fire as well .. perhaps no fire dancing for a bit.

My children's GoddessMother will be with us soon. We have her for a month to help with the transition home (whenever that is) .. hoping it will be in October sometime. As we birthed in Gympie that is where we would usually be required to go to for 24-28 hours before going home. But as Nambour have a Special Care Nursery I have arranged to be going there instead. Still not sure about all the details of that, but basically the boys and I will be in an ambulance with Matt, Heather and Bluqi close by. I do want the medical handover to happen so that the team there know our history should there be an unforeseen situation that lands us there. They are also the ones to organise our home oxygen delievery, of which we will get a prescription for once we meet the respiratory team, sometime next week, pending Moss stability (which is so far rockin').

Matt sent out a message to many of our friends about me yesterday, as I am going a bit nuts...!! Thankyou for all the beautiful text messages I have been receiving. I cried all day and felt both more and less lonely at once! I am missing friendship and company that is not a part of this hospital. I have staff who I deem friends, tho I know they are not, and it's kinda sad really .. There are staff that shit me to tears too, and I do my best to keep their hands off my boys, and have shitful days when a 'dud nurse' is on the boys .. I don't take breaks on these days either, which makes things hard. I can't believe at this point I am still getting new nurses assigned to us.

Bluqi my gorgeous girl. Where has our time together gone? I feel so guilty I am not there for her like I used to be and miss her so much! Love you my special girl .. we will all be together soon.

Anyway .. hopefully only a few weeks to go.
Breathe in .. Breathe out
I have done the hard yards .. I have two fully breastfeeding boys .. and still a few litres of EBM in the freezor
Just showing off

We are one week young adjusted .. today


beautiful sistars!!

yes, visitors are welcome. but grown-ups only, no children (except siblings of course). visitors can't touch the babies, but can help with passing things, nappies, cushion, etc. strange rules, but with infection control they do need to cater to the lowest common denominator iykwim .. .. i am open to visitors, perhaps in ones and twos ..?? visiting hours are 8am-8pm, but not encouraged from 1.30pm-3.30pm (tho i am ok with it ). i have had a few people come to say hello, and have a few other JBers planning to visit which I look forward to.

it is a strange environment to visit. when you walk in you are handed a gown and told to wash your hands. there is an awkwardness over where to put handbags and such. imo it is easiest to put you gear down near my bubs crib, then put the gown on, then wash hands (and forearms up to elbows) before seating on a chair near me. it is said that once you touch your face, or a chair, or anything that you then need to wash your hands again, but if you are not touching anything but yourself try to relax. i know that can be hard in this environment, but it makes for a more pleasant visit.

there are other babies around and they all have their own amazing stories and one can't help but be curious and have a peak. a peak is one thing, but gazing into other cribs is regarded as disrespectful and nurses will kindly redirect visitors to the family you are here to visit if this happens. it can be pretty funny at times really, some people look like they are in a tourist park. but on saying that, it can be really lovely to chat within the room with parents and visitors about all the babies. but i have found it tiring to have new faces ask me when i will be going home, how long i've been here, and what medical condition my boys are in, as sometimes i just want to sit with my boys and ignore my neighbours visitors. so i kindly ask my visitors to consider their impact on other families as well as mine, as i know goes without saying for the aware people i am blessed to have in my support network.

please remember you have been invited to visit, so if staff explain policy to you, they are just doing their job with new faces, you do have every right to be present and comfortable. the nurses can be very chatty and love answering questions you may have about the unit and machinery you may see around you as well as the systems in place.

yes .. heather will be here tuesday .. i am craving her! i always say every family needs a heather!


on the home stretch
most tests done .. most results received .. outlook great .. details later
sooo busy with feeding .. madness!!

missing Bluqi .. reconnecting with her as she slept over with me in the parentcraft room .. cuddled her tightly between feeds .. and her me .. wanting my children all together with their mummy and daddy .. talking about going home when the boys weight gain started to drop .. fussing and not feeding well .. the last setback (touch wood)

boys are not taking their full feeds from the breast .. they are tiring before they are full and therefore hungry again 1.5-2 hours later, or just staying on the breast indefinately! .. with one baby i would go with it, with two, i can't as it compromises my milk supply. introduced a feeding plan with the help of a wonder lactaction consultant (LC). breastfeeding one bub at a time so i can compress milk while the are feeding and keep them in prime positions for latch .. 20 minutes only .. then top up with a bottle for no more than 20 minutes (yes, premmies can be very slow drinkers!) .. then i do the other bub, then i express to get my supply going stronger (as it had dwindled a bit with all the stress of Moss' purple episodes!) ..

thankfully heather is here to help me .. weight gain is improving again so we are back on track. fear around breast rejection and bottle/nipple confusion .. reassurance from LC and nursing staff about this being normal for premmies and that they will take more strongly to the breast once all home and relaxed in our own space. just wanting to curl up in a big bed with them and feed feed feed!!

Moss is 2.9kg and now a 0000 and xs bubblebubs now fit him
.. Kutura 2.55kg and finally a 00000 .. heather bought him a suit that says 'big guy' awwwww

Moss handled his MRI ok .. I stayed in the damb noisy jackhammer room with him and we did it. my lil man has been thru so much. results show that he still has hydrochephalus, residue blood in the holes of the filtration system of the ventricles. cyst in the back of the brain reveals there was in fact a mild grade 4 bleed (eeek!) .. glad i didn't know about that earlier. it is a thankfully just a small static cyst in the area of the brain that affects vision .. but his eyes are just dandy. phew!

respiratory team have been great .. doing some overnight sleep studies (just in his own crib with a different probe on his foot) to determine what prescription of O2 he comes home on .. looking good. learning to change prongs myself .. fussy .. I am neater than most nurses now wanting to decorate tape with whiskers

Kutura's liver seems good .. his colour has improved .. heel prick test Monday to make sure all it well with it, so the specialists will be away with! and to see how his anemia is going while at it .. not that he will need a transfusion, but the poor lil guy is so exhausted! he has had a few visits out to parentcraft room with me. snuggles in bed .. falling in love .. felt like when i snuggled Bluqi on day 1 .. tears .. it took so long to experience that. craving Moss. wanting to go home.

had enough .. thinking about my house. found an old recliner on ebay .. Matt picked it up, said it is perfect. want my mattress on the floor, carpets steamcleaned, house cleaned .. soon so it has time to settle before the boys get there. worried about their lungs and adaptation. grasses, pollens, cattle, dogs, pollution from cars, smoke from fire, on people's clothes, perfumes, anything new .. will introduce a little at a time selectively .. chronic neonatal lung diesease is the technical term for keep the fuck away from my precious little boys who I am so thankful are here .. so proud they made it .. are making it .. the week of Monday 25th of Oct we will be going home ..

whatever shall I dress them in?


what a week! the nicu rollercoaster continue .. up and down .. down and up ..

so i snuck kututa out to the parent craft room
the nurse went to do her 5pm obs and there was a doll under his blanket and we were gone! she went on her break, and came and found us after it, with a cheeky smile telling us we should just ask he is a 'border baby' now. not as much fun, but like night clubs when you're 17, you know? so sick of being here, gotta get my kicks somehow

anyway, the next day we had him out for a few hours. i stripped him to his nappy and took off my shirt and we lay in milky snuggles under a doona on a rainy day. bliss. moss missed us quickly tho, and us him. but now he has his home oxygen prescription he is no longer hooked up to a monitor and is a border baby too he is just rockin'!

we had the two boys out in our room, got family photos without hospital white gowns .. they had the best feeds and sleeps they have had in ages (and so did I!) .. the next day I asked the nurse mgr and dr d if they could stay the night out there. we got the all clear! two border babies, moving out to parent craft with me .. we had that status for only one hour .. when kutura became an in-patient again

a routine blood test for his liver function revealed low sugars .. his sugars are actually dangerously low prior to feeds, so he has been put on IV sugars and is stuck in room 7. the metabolic nerd specialists are now on the job and we await their input eagerly! to top it off, he has a hernia, which will need to be operated on. dr d says we may as well get the liver biopsy the gastro team wanted while we are at it .. and we are yet to decide, pending what the metabolic team says.

my head is a blurr. anxiety levels once again thru the roof. i am hungry and tired and thirsty all the time. my milk supply is up and down. i have started on dom peridome and not sure how i feel about it. i am so sick of being here.

matt's step-mum and aunty came to visit today, unfortumately it was at a busy time when kutura was screaming for a feed and i wish i could have been more accomodating for their first meet with the boyz.

as we are now going to be here a few weeks longer i doubt that i will be able to hang onto the room i am in much longer, i have had it longer than most by far already and the nursery is so very busy.

breathe suzi breathe .. get me out of here!!


*sniff* thanks
I'm going to eat chocolate oreos and drink hot chocolate and get some sleep
i think i got hypoglycemia from kutura .. contagious? hereditary? hrmm


did i mention i am exhausted????????????

i guess all mothers of twins are!


From Intensive Care to Special Care

I wrote an update the other day full of emotion and tears and lost it to the universe

After 62 days in intensive care we have finally made the move to special care. I was told after midnight on the day of my birthday that is was a gift from the staff. Moving was an emotional day for me. One of my fave nurses was on and we took the cloth nappy system, linen, clothes and family photos down from our space in room 2 and set ourselves up in room 7 where the big babies are. The rooms are quieter, more women are breastfeeding, the babies' cries are stronger and healthier, usually from hunger rather than pain. Wheeling the crib down the hallway past the familiar faces had my heart in my throat. I was hugged by 4 nurses that day, and many more told me that room 2 just won't be the same without us. Room 7 is now not the same with us!!

We have settled into a comfy corner with a window to the outside world. I have set up an alter on the window sill and Matt bought me LED candles that look real for my birthday. My around the clock routine is finally encouraged and welcome in a new way. Kutura is breastfeeding up to 6 of his 8 feeds a day. Moss is having 1-3 depending on his energy levels. Did I tell you he is no longer on cpap? He is trialling a new respiratory system called vapour-therm. It looks like the simple oxygen prongs in the nose, but has the added pressure that cpap provides, without the trauma. We are so lucky to have been offered this! My hear was aching as my beautiful boy grows so big and wants awake time to interact with me, but only wanted to sleep when his headgear was on. My heart was sore and sad, as was his. I turned to a psychic healer friend for help. She flooded the room with angels and the above has all happened since! The boys consultant said she had a freaky weekend and you can do that anytime, S, if you are reading

Moss may come home on oxygen .. perhaps we are due for some more energy work, and I will let you all know the time so you can all send us love too??

Moss' last head scan actually showed a slight improvement. Neuro team is surprised, nursing staff are impressed, I am elated! Kutura has some liver stuff going on, which we actually think may be a reaction to the TPN (which I also felt caused the edema he endured prevsiously). Blood tests next week will see where the boys are at once again. I really feel the worst is over!

Bluqi loves being with the boys and the love her singing them songs and holding their hands. There is a rule here that siblings can't touch the babies which we have been ignoring. The nurse unit manager came and met with me about it the other day. She is a lovely woman, and we sat and stared at each other for a few minutes after realising that neither of us could compromise. I had let Bluqi hold Kutura the day before, and the compromise was that she not hold the babies. I am glad I had a compromise to offer really. I will also be selective of the times of day I bring her in. As she is a night owl it should be easy to continue giving her quality time with her brothers. She is such a wonderful big sister!

My Mum surprised me with a visit up from Melbourne, which was lovely. She Nanna'd her 3 grandchildren silly and we all loved it! The boys have had a few visitors too .. which has shown me how protective I am of them and that I really want my babymoon even more so after this!

Care plan is in place and noone even touches the boys these without my consent, and being there. We are still in hospital, and I don't know exactly when it happened, but I finally feel like my boys are my boys. Can't wait to take them home. We are over 36 weeks adjusted now .. and looking forward to seeing the spring sunshine.


Now the boys are in special care it is about full time breastfeeding with continued weight gain, getting the last of the tests done (those I consent to of course) as well as meeting the sids guidelines, which basically means bubs have to sleep on their backs *rolls eyes*

Kutura is demand feeding and handling about 80% of his feeds on the breast, with the rest being tubes that he sleeps thru. Moss is still on breathing support, but he should be weaned off that over the next fortnight. He may come home on oxygen. Will have to learn how to wrap that in a baby carrier too :p
I am focussing on Moss' breastfeeds as this is what will get us home. I am hoping his lil lungs will be strong enuf to allow him to sleep on his back. Heavy lungs make for tummy sleepers, but I am feeling like we will be home in september. At the latest we want to be home with the boys come Matt's b'day on 15 oct

Moss is 2.5kg and I am just about to bath and weigh Kutura - am sure this weigh will take him over the big 2kg milestone.

Moss hydrochephalus has self-resolved. It is a miracle! He is like flowing water .. such a gentle spirit with his dark hair and dark eyes. So soft and sweet I just want to eat him up and he loves it when I pretend to!

Kutura has some liver stuff going on, which is the organ connected to anger in alternative medicine .. and I understand why he would be angry, both this life and his previous one .. so am taking the wholistic perspective around that. Blonde hair, blue eyes, firey spirit .. he is staunch .. so little yet handles like a term baby with grunt now - he has come so far so quickly.

Looking forward to the springtime and being in the yumi area I have come to call home.
And spending more time with Matt n Bluqi who I miss sooo much!
My family of five will soon be together


I'm sad today.
In special care the babies are not as sick as in intensive care. The babies can be cuddled and handled as much as the parent likes. So why do I listen to a little baby girl cry all day and all night for her mother? He mum comes to visit for 2 feeds in a row a day, often doesn't even stay to settle her, before she leaves again. This baby has lots of belly aches and much trouble sleeping, yet her dad will wake her for a cuddle if he is there, as he is not there that often and is on a schedule. I cannot understand how mum is not here all the time as I am - or at least all day.

One mum is here all day tho. But she goes home (back to Rons house) at night to get her sleep. She has a term baby who is here for a few tests over a week period. She demand feeds by day, but is tube-fed by night. Dad wants to give the first bottle, so she suffers thru 3-4 feeds a night with a nurse, dummy and artificial sensation. I don't understand.

There was an admission into our room today. A healthy baby boy who had a rough start as he was sectioned out of his mother. At over 4kg I assume it was because he was 'too big', but am speculating. One doctor said to another that a midwife suggested baby be checked but he felt baby was fine when he checked, but should get a second opinion to be sure. Baby is alone in a humidity crib, crying to meet his mother. His dad comes to visit and takes a photo for mum then leaves. Baby falls asleep, and is woken by a doctor checking him. He falls asleep so confused and alone, to be woken by a nurse wrapping him in preparation for his mum, who is on her way. But mum has not yet come and there is talk of moving him to her ward. I cried and my nurse handed me a tissue. This baby had a low heart rate during a c-sec .. that is not sickness, that is trauma. More trauma will not help. The nurses know that, yet seem as helpless as me while the whirlwind of protocol terrorise this newborn child. I don't understand.

This is one room .. there are 14 here in special care, perhaps more. My heart aches as I am with my babes around the clock, every waking moment I am with them, or at least on my way once the nurse has called me. I change every nappy, do every bath, am present for all the wonders that are my babies. Why am I so alone here in my beliefs? What has happened to society; to people, to have become this way. I simply don't understand .. and would rather be called a freak, different, radical, obsessive .. I simply call myself mum .. and the true meaning of that in my world is all I need to understand.

My boys are well .. and so so beautiful.


hope i didn't sound to harsh on people with that last entry .. was just sad
will update again when not so tired
love to you all xXXxx


Been too busy to update

Have pretty much moved into the hospital now that Kutura is demand feeding around the clock. He is too strong to insult him with a tube feed and can sleep 4 hours at a time at night, so I sleep in the parents lounge. I go back to Rons for a shower and Matt is awesome with helping to wash nappies and grab more food. As Kutura is basically dischargable, I am thankful that newborns are not allowed at Rons, as they cannot ask me to discharge him (not that they would anyway I doubt). I want the boys together Tho Kutura has been for walks around the nursery with nurses to distract him from his almost constant waking desire for the breast, so I can spend quality time with Moss. Kutura is fiesty and knows what he wants. He is actually getting bored with being here and I can't wait to show him the outdoor world. There is a courtyard on level six where we can see the sky and there are potplants, I will ask to take him there for an outing next week

Moss is still up and down, but so sweet and patient with it all, and happy with life and to be with me. He really is a sweetheart of a soul and I feel he is here to soften me He has had a few bradycardias (low heart rate) with meals the last few days. Two really scared me, I had to pick him up and really stimulate him to get him pumping again. After a chat with the consultant we dropped the feed volume, figured perhaps it is reflux and he seems to be coming good again. My letdown proves too much for him as he bradys in breastfeeds at time too, so I am feeding him solo for a while. I am also using a nipple shield with him. Despite my fantastic anatomy for breastfeeding, I have found the shield helps Moss with his attachment. He has a good latch, but tires easily, so the shield keeps him on and feeding with less work. I use it intermitantly depending on his energy levels and will wean him when ready. We haven't dropped his vapotherm much this week due to this feed stuff, but on Monday we will start bringing it down again

Moss hydrochephalus is still present, but stable, and I asked the neuro when we will know, she says it should reveal itself within 3 months as to which was it will go. Keep sending love .. it's working!!

A nurse and I filed my ebm today .. all 8.5 litres of it
There is still some transitional milk so Moss will be getting that over the next few days, 2 litres is being donated to a JBers friend, and the rest is on hold for now. As I am feeding Kutura 24/7 now, and Moss is on 2-3 breastfeeds a day, I am having trouble timing when to express, so we have been using the frozen ebm for Moss' tube feeds. The other day I had just expressed and ended up with the boys asking for a twin-feed and was devasted I couldn't come thru! I currently have one Kutura-drained breast and the other is full and I am not game to touch it as Moss may wake up

Matt has been sorting the house .. he sent me an sms saying 'Da Boyz are gonna love it here!' .. I want to show them trees and leaves and blue sky and clouds and flowers .. I want them to hear birds and windchimes and the sound of their family relaxed together with them ..

81 days so far .. patients get balloons for the crib and a card signed by all the staff at 100 days .. lovely as that is we are trying to avoid it I wonder if we will get to the JB fest here in Bris? Hrmm ..


advice to a friend's friend:
belly bands to use with KMC to help with parents confidence. bubs tend to slip down (or wriggle down to the breast ) .. and this is scary as they are on breathing support. the bands are a great baby-wearing/kmc tool.

the staff will talk to your friend about over-handling the babies when she speaks of cuddles. this is real .. the babies cannot be overhandled - which is exactly why parents need to know what staff are doing, because in my opinion it is them that over handle the babes. KMC is a priority in handling, not something that gets pushed down the list of priorities. i recommend new parents in this situation learn the priorities of the team looking after the baby .. then make their own.

do KMC from cares-to-cares so parent is incubator rather than cuddler (hope that makes sense)
also .. ask questions .. ask the same questions to everyone!! learn who makes what decisions so you can get involved in them (ie nurses make some, doctors others) .. meet the consultant in charge of the babies care and let them know you are proactive. ask for an information handout on anything that is wrong with bub. meet the clinical nurse consultant and put a care plan in place - update as needed, at least weekly x

tell your friend not to let anyone undervalue the love she has for her babies ..


oh yeah .. as for the twin thing .. the sooner they get to hang out together the better
they may be able to:
*twin cuddle on mum
*sleepover in humidity crib
*move into open crib together
different people have different ideas on this stuff xXXxx


forgot to mention breastfeeding ..
express express express .. kmc will help with milk flow
look after your diet .. contrary to what icn staff told me about 'going home and getting sleep to help supply' i actually found i was too anxious being separated fom my babies, which is no good for supply. hanging at the hospital exhausted worked better for my supply - which is fantastic i might add! i wish i had met the physio and LC earlier .. i wish i had of thought to have swaddled my babes before a weigh sooner (weighing the swaddle first to deduct it from the bub's weight) .. to prevent the flailing movement and shock of my tiny boys sooner .. i also put them in the bath in the swaddle then slowly unwrap .. keeps them calmer .. i can then place fabric over them if they startle

how is your friend going j?


thanks .. yes we are truly blessed to have had babes that have died .. rather than never having known them at all. i am at the royal women's in bris .. and I asked a nurse if she knew you when i was a few weeks in here. she said she had heard your story, but never actually nursed your boys. i was thinking of you when my boys had their 10-day head scan .. i thought of you again on day 12.

who was the nurse that wouldn't let you express? that is just fucked. must have been around nurse handover or medical round time, ey? they gather around me and include me in that now .. but they are a bit more relaxed in special care. mind you, they still ask other parents to leave, unless they are breastfeeding or in a kangaroo cuddle. so wrong .. expressing milk next to a baby you are 'not allowed' to cuddle is the same as, in my opinion. i am so sorry you were treated that way.

hindsight around this place is great ey? not. lol .. i am already looking at ways i could have been more assertive .. now around the medicines that my boys have been given and what the natural alternatives are .. just no time to research and such a critical time to negotiate in!

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i am blown away with all the comments .. as it is the jbers helping me keep going here .. your perspectives keep me grounded in who i am .. this community helps me remember who i am as it is so easy to get overwhelmed and forget in here .. the spunk of the women here is what gives me the confidence to fight .. tho i shouldn't have to .. and these days the battle isn't really a battle against the system ..

next up vaccinations .. i told the consultant we would be up for partial vax if she could tell us what she recommended and why .. so scared of my g'uys fragile little lungs being challenged by whooping cough for eg .. but my instinct is telling me no ..

must sleep ..ZzzzzzZzzzz


So many of the staff here just rock. It is the system that is hard to shake - even for the most compassionate of nurses. The Special Care Nurses are a different flavour to the Intensive Care Nurses. More family orientated and relaxed due to the working environment as opposed to being on edge in response to alarms and a keen scientific mind.

I've had nurses give me hugs, include me in the nurses coffee round, hang out with Bluqi so Matt and I can be with the boys longer when her attention span has wondered .. even the exchange of phone numbers in women that have now become friends. Having said all that; there are always personalities that aren't up to the compassionate scratch.

There is a Team Leader (TL) here that would not look me in the eye or respond to the hallway smiles I offered here, over the past month we have been in Special Care. Two weeks ago. however, I had the nurse in my room ask me why I wasn't wearing a gown. I explained that I kept tripping over it and tangling it when breastfeeding, particularly the twin feeds, and that it was dangerous. I was sitting in a twin feed at the time. She told me the policy, I told her I know, I should talk to 'A' the nurse manager about it. Next thing I know the TL was in my face, one hand on her hip, other hand pointing the finger at me telling me the policy on gowns, like a school principal talking to a norty school child. I told her what I told the nurse and she dissappeared with a huff. On the way out I asked her name .. I think she answered but I didn't hear as she was already out the door. I sorted the gown situation with the lovely 'A' the following day. School Princpal TL continued to ignore me and my hallway smiles, and didn't seemed to like that I was now wearing an altered version of a staff gown.

A week later I was having a hectic day! Both boys were very demanding with their breastfeeding and I felt like one feed rolled into the other. I put Moss down, handed a nurse a screaming Kutura, and ran to the toilet. A cleaner came out of the nearby staff toilet and I raced, wee'd, and headed back to Room 7. Busted by cranky TL! That's the staff toilet she speaks firmly, and begins explaining why nurses need a close loo. I know and I'll talk to you later when my baby isn't screaming for me. She gave me a filthy look as I went back to my boys. The public toilet is too far away, and I figured if cleaners can use the nearby toilet, I could when the situation called for it. I tried to approach the TL to talk about this on later occasions but she made herself unapproachable each time I smiled her way. I could see where she was at, and I still didn't even know her name, so I didn't bother.

This is just the history for the coming saga ...

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Nastasha is lovely, Moss had her a few times in room 3.
Neroli was our retreival nurse, the one who had the job of telling me I wasn't to be in the helicopter transfer - tough job! She was great with me; simply explained what the flight would be like and what would happen on arrival. She told me it seemed that once I was with my babies again I wouldn't want to leave, so she encouraged me to go home and pack my bags properly before going to Brisbane. Wise words really as I have't been home since. Neroil has a special place in the heart of my story. She also happened to be the nurse on that day when my IM came in to meet the boys 6 weeks ago.

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Now for the update .. been a long time coming, hasn't it?

Moss has a checkup with his neuro in 6 weeks. She would like an MRI before then. The flashy new machine looks like he won't even know what is going on if we nestle him in there after a feed and take him straight away Too easy. Once he is off vaportherm we will do that. This is to see if there is any damage to the brain from the ventricular swelling. She said we should know in 3ish months if it has self-resolved. Head circusmferance is stable

Moss was getting better in regards to his vapotherm pressure and oxygen coming down, but started tiring with his breastfeeds. His attachment was starting to get lethatgic and a lactaction consultant suggested a nipple sheild to make it easier for him to maintain his latch in his breathers. He was having up to 3 breastfeeds a day, but we seemed to be getting worse at them and it was so frustrating! Then the reflux started, which brought on the bradys (slow heart rate) and desats (reduced oxygen levels in the body). I was here around the clock for every one of his feeds to pause them and prop him as needed. I insisted he be fed slowly (over nearly an hour). Friday morning he was fed over 20 minutes and his heartrate dropped (down to 60!) he desated (down to 40s!) .. and he went an interesting shade of purple. Nurse suctioned his mouth, gave oxygen and I propped him, sang, loved and begged him to open his eyes or show some sign of life. He returned to us with a cough and the hiccups. I took a deep breath, nurse manager 'A' (who I love!) came in, all was well with sleeping Moss, so I went to the parents lounge for a cuppa tea. Took two sips when I was called back to the room, 'A' in crib saying 'get in here with me suzi' .. purple is really not the colour for Moss! I slid myself around him as best I could while 'A' worked to bring him back. We all breathed a sigh of relief when his tired eyes fluttered open to peek at us before falling into sleep. We all agreed it was clearly reflux, but why he was reacting so strongly was a mystery.

Consultant, Dr D, who has been fantastic this whole journey, talked to me about reflux medication and I felt reassured that she was on duty for the weekend. Come Friday night Moss had another episode. Dr D had left, the jnr registrars were on, and the school principal team leader seemed to be in her element (not!). She walked in the room and announced that bloods had to be taken, a canula put in and antibiotics administered over the next 48 hours

This is the saga bit obviously! .. The fact that she announced to the room what 'had to be done' with my baby without looking me in the eye, introducing herself (I still didn't know her name at this point), or including me in the conversation was disgraceful behaviour - let alone the part where she needs my informed consent and everyone there knows how proactive I am. It is pretty darn obvious at this point considering I now live at the hospital, have sussed out my fave sleeping couch and found a shower to use regularly

Anyway .. I told the docs and nurses that they have my consent to do nothing and said I wanted Matt here first. Long story short, they told me that if I didn't do what they said, Moss would probably be dead come the morning when Dr D was back on duty. I asked to speak with her. They told me as a public patient I couldn't. I told them we wait till morning then and they could explain to Dr D why her patient was dead. I then asked my lovely nurse on duty for the paperwork to make a formal complaint about the TL. TL show up. She walks in the door and says 'Have you got a problem'. Yep, school principal all right. I was norty, obviously! I told her exactly what I thought, and she was more interested in defending herself than supporting a family thru a difficult time. Matt mediated the conversation well, but nothing changed. She still rejects my hallway smiles some 4 days later. But she used her 'power' to get Dr D on the phone

Dr D did not sound impressed that I had been told my baby would die, and it seemed that her instructions had been misconstrued .. I was in such a worked up state .. so scared, so confused about what my instinct was and when I had to handover, just like when I watched them take my boys for the helicopter ride some 3 months earlier. We worked out a plan. We did a blood test. I was right. Moss had a blood transfusion Saturday and has started LoSec (spelling?) for his potentially fatal reaction to his reflux. He is on the mend and had a lovly first breastfeed back yesterday after recovering from the whole ordeal. Antibiotics would have hindered his gut and all he is going thru right now .. and there was no infection or bacteria from the tests they took. Matt and I made the right call.

But fuck it was tough. I am left asking, why does it have to be this way?
And I am off to meet with 'A' now to chat some more about that.


Now .. Kutura .. my 'border baby' .. not any more

There is something going on with his liver. The gastro team are now on board and tests-seeking-results are what specialists do best. We went to the children's hospital with him yesterday for a liver scan, we are taking bloods today with the next breastfeed (well, this is take two, as one of the jnr docs from Fri nite tried twice yesterday and didn't get so much as a drop of blood from piercing the skin ) .. poor nervous woman, apparently I am intimidating. lol .. intimidating is having a room of people telling you your baby is going to die! Grr .. anyway .. I won't be allowing jnrs on my boys anymore.

So 2-4 weeks till home has become 4-8 ..
tomorrow is my 'due date' ~ boys will be '0 days adjusted'
we have been here 3 months

I'm doing ok
Breathe in .. breathe out