Home..!!

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

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 ..


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"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."

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it is so good to be HOME!


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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!


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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 ..


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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.

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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


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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


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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.


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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.

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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.



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<>, 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
xXXxx


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Wow!!
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

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