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.
Friday, September 16, 2011
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 ♥
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
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! :-)
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 :)
Moss ~ the boy with chocolate eyes
Dadda with K
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
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
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
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