Thursday, January 24, 2013

Developmental Assessment Program (DAP)

My Facebook status this morning ....

 How was the boys assessment? Slack on the blog update aren't I?

The DAP is a Developmental Assessment Program that has been running 5-6 years thru the research dept of the RBWH NICU in BrisVegasTown. It is for micro-prems only, so those born under 28 weeks gestation and less than 1kg in birthweight. They 'assess' the children at age 2 and 4 for purposes of research, data collection and referring the kids to specific areas of follow up if 'required'.

Our boys are the only babies to return at age 2 who have never had formula and are still breastfeeding. Their speech is the most advanced the psych has seen in there, and they are very socially mature compared to their peers. The written reports are going to look great!

 Unfortunately, the statistical part of their assessment may see them looking 'under estimated' as Mumma didn't consent to all the activities :p Moss anarchist approach to life was in fine form .. and when Kutura was tired he boobed to sleep in the psych office happily without meltdown (apparently 2yos are meant to melt down before sleep).

 It was a hard day but glad we went as I wanted them to see my boys are rockin! Despite saying no to most of the follow up recommended (and pursuing our own alternatives) my boys are healthy, happy and have none of the key problems common to prems.

 I gave the systems staff plenty of feedback too ;-)

 Bluqi was pretty happy to check out the wonder factory again!

 *key problems to micro prems include; poor weight gain, oral aversion/'fussy eating', sleep troubles, socially withdrawn, poor/no speech, bronchial/chest problems or prone to cold/flu. The fact that neither of my boys has had antibiotics or a trip back to hospital is 'very rare'. But it makes perfect sense to me *Gloats*

Friday, June 29, 2012

Wow! Moss and Kutura and TWO..!!

Time for update, huh?
I am loving my family of 5 .. the cosleeping with two queen mattresses on the floor is a world away from K in room 4 and M in room 3! It was Matt and Blu on one mattress and da boyz and I on the other .. but things are starting to switch around now they take just one breastfeed overnight each (sometime two). Blu loves snuggling into 'her babies' and K will settle by rolling next to her after a feed ..

So I sit here at 4am .. contemplating my family .. thinking about my birth experience 2 years ago .. it was not a 'Happy Birth Day' .. it was not a Happy BirthING Day .. in fact it is the anniversary of my birthrape .. my rape. Memories stir and emotions rise .. We are all here, so we best be thankful and get on with it, right? Sure, I will focus on making cake and blowing up balloons .. But in my heart I am remembering the RN who tugged on my cord .. I wrap presents .. and recall my little Moss travelling 1.5m in mid-air before his head collided with the knObs's arm .. I sing 'happy birthday' to myself and burst in tears as I remember Kutura's punch to the face he received when only his head was out of my body .. I push it all aside, on the day when it all comes up the most ..

'Medically' my boys are great! We still have Dr D on board for a few months (until they are 2 adjusted), we have found the perfect 'GP' for us all and in recent months have met an amazing guru woman, Angela. She is osteo, cranial-sacral, acupuncturist, neurologist, chi gong master, wise elder, laughing woman!..

Moss was the first to have a session with her, just a few months ago. Due to the ongoing incompetence of Nambour Hospital we have not been going to physio. It was suggested that Moss require muscle and core strength development and that there may be some physio exercises that would help Moss. Angela validated my and Matt's instinct to avoid physio when we understood that exercise won't help muscles that aren't receiving messages from the brain. She told us Moss' little head was full of trauma and blockages, preventing fluid and energy flowing freely up and down his spine. She said it was like a low-pressure flow.  Moss was lacking strength in his hips and torso, very evident when walking-along-holding-hands. After his first treatment he could stand upright while walking-along-holding-hands.

Where Moss was previously struggling to drink and swallow (he took fluids in a syringe and breastfeeds) he can now drink thru a straw and with a cup, also after the first session!  Two more sessions later .. Moss can now walk :) He took his first steps on his own a week ago and his record is now 8 steps! My little boy I was told by some may never walk is walking!! Bathtime is one of his favorite things .. but natural water and sand like the beach sees this lil man in his element. He speaks in bubba jibberish a lot .. very chatty with lots of deep eye contact and expression .. he is a great kisser! He can say clearly 'aw shit' and 'look-a-dat!' and point out lots of things he sees around him, which he says by name (light, star, moon, car, shoe, Mumma ..)

Kutura is a little powerhouse too. He is a sponge for learning and recognises much of his letters, numbers, shapes and colours; his favourites being K, 2, star and red. He has a broad vocabulary and has just started on two syllable words. He clears the kids table often and loves taking the rubbish out with Dadda.
Kutura has always been kinda sitting in his fight/flight response - the main reason I have avoided further intervention of any kind. We are yet to scan his heart to see if the PDA has closed (and see what Dr Ds murmur sound is?) ..
After watching other family members see Angela he was keen for a go. He has relaxed and come into himself since that session .. he now hugs and kisses, high fives and waves .. things he avoided before as he always had his defences up. My K man is such a relaxed little dude!

The three kid thing has been a challenge .. not enough grown ups to go around mixes things up a bit! But the five of us have much rhythm to our lives now.

Teeth (and lack of enamel) is a big thing here! But I plan to do another blog post about the nutricional changes in our kitchen and bellies!!


Well, I didn't get my blogpost up yesterday as planned. It sat here and thought about 'this time two years ago' .. and the thing that hit me most of all .. is how 'in the moment' birth and emergency and the NICU experience is .. right here right now is where my energy was wit my beautiful children.

Off to be here and now with them now.
Thanks for reading my boys birthday blah
Pics for you later ... xX
Suzi :)

Tuesday, January 17, 2012

18 months on

So my prem boys hit 18 months of age just after christmas, 15 months adjusted. Took them to clinic with Dr D the other day. Our family enjoys catching up with her; the human doctor who helped us grow our babies in that strange sterile world known as the NICU.

I knew she was running late to clinic that morning, as she was with my friend's lil bubba up in ICN. Jett has been there over 100 days now and things are finally starting to move forward for him and his mumma Abby. So we went for coffee while we could and got there late ourselves.

We were greeted by the lovely familiar nurses. We weighed and measured the boys. Moss 9.5kg and 73cm and Kutura 10.5kg and 79cm. A man who was a Dr then came in the room and stood on my shoe, in between Kutura and I, and in front of the nurse I was chatting with. Ah! Emotions around the arrogance and ignorance of this institution came flooding back!

"Excuse me" I said, "I may not be a member of your staff but I am a person and I am standing here". He apologised when he realised what he had done. I told him "I hope you have learnt something today, Sir". He left the room. The nurses laughed. "Have you missed me?" I asked. I said lil sorry to them for making a scene in their space. The reassured me they were ok with it non-verbally showed me their agreeing :)  They warned me that Dr D might not be down today as she was held up, upstairs. The rude Dr was hovering close again; "I ONLY see DONNA" I said in a clear voice with a wry smile. "And I am happy to come back another time if she is busy, I completely understand". The nurses said they would give her a call on my behalf. I told them to tell her that "Jett comes first and we are happy to wait".

Dr D came in, and it was great to see her!
I showed off my Kutura walking dude and my commado funky frog crawling Moss. We hugged. "They look great!" she says.

Updatey Stuff;

Moss - his by-the-book milestones are 'delayed' .. but for someone with his medical history I think he is a speedy lil tough guy! He is by far the happiest baby in the world, he just oozes joy and delight :) He is still seeing Dr G the eye specialist as he has a 'hidden turn' (like a lazy eye, but where a lazy eye is muscular a hidden turn is neurological). It is mild, so it could go either way. We are manifesting it to self-resolve like everything else with him has.

He is rockin' the jolly jumper! Two legs bouncing, lil face grinnin'! Wants to stand on his own, he can for a second or two, gets the wobbles and crashes in for a tackle-cuddle *melts*.

Moss needs to develop more core strength and we are looking at finding a physio or osteo who can help us develop some Moss-specific exercises. My lil man is about to go-go even more!!

Kutura - Ahh my lil Ra! We never got the all-clear on his PDA on leaving the hospital, and I didn't bother seeing the heart specialist he was referred to as the only treatment is surgery around age 2 if the valve is still open. So I deferred tests, and we are looking at getting that echo done soon. Let's hope there is more all-clear signs ahead. He *may* have a murmur, he *does* suffer from seasonal asthma, so let's see what happens. I can't imagine going back in for surgery after coming so far!

We didn't even test his liver function as we think liver disease manifests pretty clearly! Kutura is so active and healthy! Such an outdoor, must be on a mission lil dude! He is powerwalking and experimenting with jogging. He has started doing adventures with Daddy in the morning, which means he sometimes falls alseep on the way home without a breastfeed *sniff*. My big guy!

Is that second teste coming down? Does it need to? There is a risk of prostate cancer with such, I am told. It was prostate cancer than came for my grandfather, but that doesn't mean I want to have a toddler teste pulled into place surgically. We are buying time, but I really don't think Dr D could talk me into that one. Hrmmm ... more research.


Both boys loves stars and lights and ceiling fans. I can't help but wonder about the connection to that helicopter flight shortly after they were born and their memory of it around ceiling fans. We have star shaped light shades of which Moss points and says "Dah!" and Kutura agrees saying "Gar!".

Dr D asked if they had 'a handful of words', of which I said yes. But on further thinking they have MANY words! Mumma, Mum, Dadda, Dad, BooQi, star, boob, cheep (for the chickens), toy, that, car, fish and a few people's names too. Moss even said Dr Ds name three time while bouncing on her lap. Show off! Dr D was happy :)

I will have to add more as I hear them being used. They talk to themselves and each other in a fantastic jibberish more than anything tho, which I adore <3

Life is hectic, but we have home and space and rhythm. We love the move we have made to this beachy town. Loving seeing my children come alive as we shed our skin once again and are born into a new space, a new year and a new state of improved health and happiness.


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!