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
Friday, April 15, 2011
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:
Update
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
here is the update I have just sent the editor:
Update
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
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.
~ ~ ~ ~ ~ ~ ~ ~ ~
<>, 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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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 ..
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
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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.
~ ~ ~ ~ ~ ~ ~ ~ ~
<>, 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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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!
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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.
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So here we are almost a week post-op .. still no liver biopsy results .. more soon .. babes awake xXXxx
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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!
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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!!
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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!
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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!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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?
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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!!
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*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
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did i mention i am exhausted????????????
i guess all mothers of twins are!
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From Intensive Care to Special Care
everyone
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.
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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
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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.
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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
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18-09-2010
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 ..
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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 ..
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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
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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?
xXXxx
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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
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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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29-09-2010
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.
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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
xXXxx
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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.
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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
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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.
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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
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18-09-2010
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 ..
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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 ..
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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
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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?
xXXxx
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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
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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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29-09-2010
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.
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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
xXXxx
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Room 2 ~ Weeks 4-8
Grrr to nurses!! Yeah they are great .. most of them, most of the time. They love and help my babies .. but I do feel overall that they are desensitised to their environment. A nurse that has been on my boys a lot the past few days just won't listen to me. She is a lovely older women, obviously been nursing a long time with fantastic knowledge, but she is now so very aloof to it all and just going through the automatic paces of her job without putting much thought into it.
I noticed Kutura had a puffy face a few days ago. I told her. Yes that's the CPAP headgear squashing his face, not much we can do about that. I mentioned it again and again. The other stock standard reply I got was that it is the positioning of the baby, once we roll him over (every 4 hours with cares) the fluid drains in a different direction. I know all this stuff. We have been here 4 weeks tomorrow. There is something else going on. The boys doctor is back on after a weekend off and she says Kutura's body is slightly swollen as well as his face, and it is obvious to her that his fluids levels are too high. 3 days I have been speaking up about this, but didn't speak loud enough (or high enough up the ladder) as I was being a good girl instead of listening to my instincts! Grrr .. His face is looking much better already.
In the meantime, the same nurse drops a pair of scissors on the floor, picks them up, uses them to cut tape to replace on Moss' oral feedtube. Now today (2 days later) he has a temperature and suspected infection. These are their rules she broke! His feeds have been cut and antibiotics have been administered :-(, and the blood culture comes back in 48 hours. His temperature has come down thankfully.
I am recovering from mastitus and my energy is returning. Getting great sleeps during cuddle time .. and hoping for more .. but it all depends on the baby and the day - and the nurse But perhaps it was all just a coincidence, hey?
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I'm such a dobber
I emailed the clinical nurse consultant. And from now on I'll be chatting with the consultant/doc about symptoms I notice. These two women are higher up the ladder, great listeners and proactive. Tried trusting and utilising the nursing staff, as discussed in meetings with doc and boss nurse, but why settle for less??? This is my sons health!! In this system where only few listen, I am sticking with those that are and have the power to act; so will be directing my efforts accordingly from now on
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Well Moss' infection was minor and cleared quickly.
Loving having cuddles in between the two cribs .. had a couple of double cuddles the last two nights
In a routine of going to the hospital at 3.30pm (after 'quiet time') and staying until 3-5am, then going home for sleep. Having lunch/brunch with M n B and spending time with them .. then going back to the boys. Such a strange thing having 2 members of my family a 5 minute walk from the other two.
On the medical front, the boys are great. Did I tell you they were upgraded to room 2? No more sterile procedures (well, rarely) and babies in open cribs are around us too! They are both off TPN, which means they are living purely on my breastmilk now. Their birth weights were 1000gms and 950gms and they are now 1400gms and 1360gms. They are getting better at breathing and so over the CPAP nasal prongs being in their faces! Poor lil men Moss is on a peep (pressure) of 8 (we are aiming for 5) and is now in 21% oxygen - which is the same as the air we breathe! So Doc will probably reduce his peep to 7 soon. Kutura has had his peep reduced to 7, and now 6 and his oxygen is fluctuating between 22-25%.
Kutura's cry is becoming so healthy! He is not greedy for his food, but let's us know when he is uncomfortable and wants his headgear adjusted or to be repositioned. Moss' was hoarse for a lil while after being ventilated, but his larynx has healed nicely the last few days and he lets us know when he is hungry!! I love that my boys are doing 'baby' things as well as 'premmie' things. They are getting so strong and I am loving seeing their personalities shine through.
Matt had his first cuddle with Kutura the other night. I sat next to him and cuddled Moss. He is now keen for a cuddle with Moss of course, so next time Bluqi goes to Dea's for a sleepover than is our plan Bluqi is awesome, she has been so playful and accepting of the whole situation. We have been making the most of the times we do have together these days.
Love to you all xXXxx
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The last few twin cuddles have been difficult, but for such a beautiful reason ~ two babies trying to nuzzle their Mum while on CPAP is just frustrating for all involved!
So last night I had a solo cuddle with each of them to offer them the chance to meet the breast. Moss was exhausted after his wash and weigh, so fell asleep. Will try him again tonight. Kutura had his first lil suck! Three sucks of the nipple and only two drops of milk (as I expressed before so as not to drown my babies!) .. and he was asleep content. Awww... The milk did come back out of his mouth tho, so his swallowing reflex hasn't kicked in yet.
I have been avoiding updates as I have been processing the results from Moss' last head scan myself. He initially suffered a brain bleed (they both did actually, but Kutura's is healing well), but he has now been diagnosed with hydrocephalus. There is a blockage, probably a bloodclot, which is preventing the cerbral fluid from draining (this fluid is a constant cleaning and communication mechanism of the brain and spinal cord, from what I can understand). Because the fluid is always producing, yet cannot drain, the ventricles in the brain are becoming full of fluid and putting pressure on the brain. In adults this is a lot worse than in babies as their bones are not yet fused, meaning the head can swell and grow. His head has grown a little, and doctors are still hopeful it will correct itself and drain ~ we are not critical yet, they say (sounds f*#ken critical me), and there is no talk of death (family please be assured). However, if the head continues to grow the only option is surgery. Moss' headscans are weekly now, and his care is in the hands of neurosurgeons. I am emotional and scared and doing my best to keep depression from dragging me into a deep hole .. looking into Moss' gorgeous eyes, seeing how alert he is and reminding myself of the symptoms of hydrocephalus he doesn't have help me keep hope that the blockage will clear and the fluid will drain. If anyone googles hydrocephalus, please don't be scared of the swollen head images around Moss. These are old science photos and these days babies are treated before their heads swell. I do feel for the babies in 'developing' countries tho, who still endure and die from this. If you must google, the surgery we would be looking at if needed is the insertion of a shunt, which I will only chat about later here if that is where Moss' path takes us. For now .. draining energy to my boy!!
Breathing and weight wise the boys are still progressing. Kutura now 1.6kg and Moss 1.5kg. They are regarded as 'bigger babies' in here now, incredible hey? I took some lovely photos of them the last few nights, will share soon.
It is Kutura's turn for a wash and weigh tonight (they are weighed every 48 hours so we know how much to increase their feeds) .. so I am curious as to if he will take the breast again, or if he will be too tired! Moss has had the healthier appetite and better suck of the two to date, so I am hoping he will take the breast tonight. I will make sure he is rested first this time
Spent the day with Bluqi yesterday .. we went out for sorbet, had a bath together, read lots of new books. Was great to be one-on-one with her again and feel really connected. I have missed her. She has accepted that she has two brothers now (she wanted a sister) .. and is feeling emotionally ready to meet the babies. I am sure her cough will heal now I want her first meeting with them to be special, but as siblings are not even allowed to touch the babies I have another hurdle to contemplate jumping over. She has sat in on a few meetings with Matt and I with the docs/etc and they can see how cooperative and understanding she is, so that is a good first step in giving her a quality meeting with her brothers.
Looking forward to getting the cloth nappy system in place. Not this week .. but probably the week after we will be ready to go! I will then be bringing in all the boys bedding too. I didn't take in the bits and pieces I had, as apparently stuff goes missing, so I thought it would be easier for the nurses if it was all mine. It will be nice to be finally doing my boys washing. Can' believe I said that??!!
Matt is well and send his love too.
As always .. your support has kept me afloat
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Oh!! I forgot to tell a story of Matt's from the other day .. hehee
He got there to have his first cuddle with Moss (as arranged with the nurse) and was told there was a sterile procedure that would only take 10 minutes. He wasn't happy, but complied. He rang me, a bit upset, as the nurse has used the line "it's only 10 minutes, thet are all yours for the other 23 hours of the day" .. we hate that lie. Was obvious she was one that hadn't read our care plan, lovely as she was. So Matt had his cuddle with Moss, and an hour into the cuddle it was quiet time. Matt 'refused to give the baby back' was the phonecall I received. I laughed and corrected the consultants language. The baby IS back when with his parents. I told her I can't offer any help, but I am pretty sure Matt is claiming his 23hours of the day after the nurses comment to make a statement He had the clinical nurse consultant, nurse unit manager and consultant talk to him. I can see him shooshing them and gently patting Moss. When Moss was next due for cares the nurse asked him 'what are we doing? am i doing these on you? or what would you prefer?' Matt thanked her helping with the cuddle, and told her how we like to cuddle from cares-to-cares and let her put Moss in the crib
I love my man!
(And my girl and my boys!!)
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I met with a neurosurgeon the other day. She was quite arrogant. I made the mistake of calling her by her first name and she corrected me like a norty school girl. I complied and played nice. Don't really want to get on the wrong side of someone who may be doing surgery on my son's brain, hey? I believe she is good at what she does tho, which is all I am really concerned about. One of her registrars is keeping a close eye on Moss. His head circumferance was stable for a few days, and he was very headachy and looked sick. His head then grew at the rate of 0.5cm a day for a few days, and the last two days has not grown. However bad this sounds, he is actually looking a lot better. I believe that the ability of a baby's head to grow is an advantage, as now the body has more of a chance to diffuse the blood that is blocking the fluid from draining, and that is a good thing. I have noticed that he is more headachy when his head is laying one way than the other, so am trying to help him by positioning him the way he likes. He is still increasing his feeds and weight - now over 1.7kg my lil Moss man has become my big guy!! Although he is very interested in the breast it is too draining for him at present, so we are spending our together time in skin to skin and enjoying sleep instead. No need to push him. He like me dropping milk into his mouth and sucking on my finger. His eyesight is amazing. I was told that prems can only see about 30cm-1m in front of them, but Moss was following a toddler playing with great interest yesterday; she was 4+ metres from him He has been much more alert the past day or two, and regardless of if he needs a shunt or not I feel he will be ok.
Kutura is now having one breastfeed a day. The boys are tube fed 2-hourly and I feed him with the 11am, at the start of his 'time off cpap'..!!! This means he is breathing all by himself! He has had 2 days of 4 hours and is currently attempting 6. I know he will be fine. We will increase his 'time off' and if all goes well he will be 'off off' in a week-ish. I am told that newborn babies attach and suck and 14-18 times before coming off for a breather, then reattaching again. Kutura sucked 10-12 times today at his peak, during the 20 minutes he spends at the breast. He is so tiny. He is the tube fed his usual amount, which is pretty harsh as he does get a bit from me. But as he is on 'restricted feeds' (due to his edema, did I mention that earlier? anyway .. it's just about gone now) .. so I let it go. There is a feeding system here and no top-ups (tube feeds) are given for scoring a 5 or 6, I think. Nurses are impressed he is scoring a 3 .. I just think he is going at his own pace and obviously ready for it. He has been dropping weight slightly, mostly as his edema is clearing, so hopefully now the weight he puts on will be real weight. He is over 1.5kg and looks so very cute in the oversized hoodie he wears for his morning feed. We are frustrated spending more time together, as he just want to be at the breast, and he really doesn't have the energy for it yet. I am hoping Matt will take up the job of the boys wash and weigh.
As much as I am wanting a different model of care, I have accepted the one I am in and working withing it's frameworks. If they were set up for 24/7 kangaroo mother care (private room, appropriate beds, staff trained for it and equipment made for such care) .. it would be different. But it is not like that. I see where they are coming from. I see the compromised oxygen levels in my boys, their increased or decreased heartrates, how exhausted they get from coming out for cuddles; but I have come to understand that and choose when I how long I cuddle for within their framework. It's not 24/7 .. infact it is no more than 6 hours a day; but I am content with that and have learnt to interact with the boys in other ways. Teaching the nurses to get out of my way has been an interesting process (and still is!) .. but there are my babies whether they are on me on in a crib and how I handle myself in the space has developed. It is a skill I wish to teach.
There is compromise tho from them too. Last night was line change night (for eg) -a sterile procedure parents are not to be present for- .. there were 4 in our room and they were all done with me there. None of the nurses said a room, and I am trusted not to make a big deal of it to other parents. Breastfeeding is not really encouraged here until babes are 'off off' cpap .. yet my morning breastfeed with kutura is now a part of our routine. The doctors listen to me when I talk about the changes in Moss' head and behaviour, as another example. I know parents should be trusted to make statements to docs about their babies, but let's face it, many of them are quite detached from their babies (thru no fault of their own), and staff encourage parents to be this way unknowingly when they do things 'the way it is done here'. I have made it clear that 'this is just a standard procedure' is not an answer to a question - sadly most parents accept it as they are so afraud their baby will die they are scared to help them live. Perhaps it is different in the special care unit .. but the intensive care unit really is intense!
I am still struggling with many things .. but they are listening and slowly implementing some of the changes I am suggesting. The biggest thing is the lack of communication and information, as well as the assumption that the parents will consent to their every move. I have had outbursts, meltdowns, tears of frustration and laughter inside the NICU and my fight has become much more than just about my boys, as I have met so many women and heard so many stories. The expression room is a haven where we comfort each other. Others are speaking up too. I do hope I have the energy to continue such when I am finally at home with my boys. I wonder if they will let me in again to visit other mums there?
My focus of course is Moss and Kutura .. but if everything happens for a reason, there is always so much more around the corner.
I am hoping Matt will update on behalf of him and Bluqi soon. As I haven't seen them much the past few days. They are park hopping today my phone tells me
Thankyou to the dahl fairy .. absolutely devine!
love to you all xXXxx
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Well it's Friday 13 and the bad news is that Moss had his first procedure done on his head today. The good news is, I was present to calm and console him (sterile procedure during quiet time!) .. the staff were wonderful. We shaved a lil loveheart piece from his hair and put numbing cream on. I thought the nurse was doing it in slightly the wrong spot, and discussed this with her, but she explained why and how. I accepted .. being invited to my first sterile was not a time to argue, I thought. An hour later a neurosugeon/registrar, Toby returned, and I was right .. grrr. So he asked for a lil more hair to be shaved, which I asked to do myself this time. (I had smeared the anesetic cream over that bit too, just in case ). After a scrub up and a bit of communcation, Toby placed a needle into a ventricle in his head and took about 10ml of fluid. Moss handled this surprisingly well. I put 'calm and clear' remedy (from BugBoy - thanks!!) on his pulse points, and drank 7 drops myself. I wasn't allowed to touch him, but the nurse swaddled him gently and help his cpap in and he could hear my voice the whole time. His face was covered by a 'sterile field' (green sterile cloth) so it was kinda as if it was me holding him still. Toby was very smooth and gentle, I was impressed. Moss didn't cry nor try too much to wriggle. More good news - the fluid was clear!! Not one speck of blood. The second Toby was out of his crib I was in. I actually thnk he find the cpap more distressing than the needle.
His head size has remained the same for the past two days, so considering the fluid is clear, maybe it is close to draining by itself. We will have results back from the lab in 2-3 days about the fluid. I have kept my surgical mask for Bluqi and Moss' dark hair for his memory book.
Kutura is currently having 8 hours off cpap. The first 1.5hours he spent with me at the breast in his funky hoodie.
They both have new socks and love them, even tho they are somewhat big.
Matt and Bluqi are at the EKKA patting baby animals .. I wsh I could be there with them.
Sometimes I feel I need two of me! Actually, a third me to do some sleeping would be lovely too
This is now between the boys cribs:
"There is a common perception that compassion is, if not actually an impediment, at least irrelevant to professional life. Personally, I would argue that not only is it relevant, but that when compassion is lacking, our activities are in danger of becoming destructive. This is because when we ignore the question of the impact our actions have on others' well-being, inevitably we end up hurting them." ~ The Dalai Lama ~
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Moss' head hasn't grown in two days
The lab results showed his protein levels were almost normal (excess protein is thick and gluggy residue from blood) .. so drainage may be happening. Then again, just coz the fluid is good it doesn't mean there isn't permanent damage done to what I can only describe as the filter-holes up the top of the head, which would require the intervention of a shunt. All we can do is wait and see. Neurosurgeons suggesting a resovoir tap, nicknamed a 'button' next week will take pressure off his head if it is still swelling. This is like a non permanent shunt, and used to tide us over while a decision is made. They also feel he is a bit little for the shunt.
Little??? Pffft .. Moss is a big boy now. Fitting in 000000 and even some 00000 clothes. Yes I am dressing him as he has been moved out of his incubator and into an open crib. The requirement is a weight of 1.8kg, and he is now 1.9kg. So we are working out what clothing and blankets he likes to keep his temperature stable and I will moved his wash time to the day as it is a bit warmer and will help him. He will be able to have an immersion bath (real bath ) once he is stable. Until now he has been getting sponge baths.
He is happy. Doesn't like to be cuddled upright like he used to .. my big boy now likes to be cradled and look lovingly in my eyes while falling asleep. Awww .. I tried him again on the breast and he used me like a tasty dummy He is happy when I drop milk from a small syringe into his mouth. He is learning how to swallow at his own pace. For most babies that is in the 34th week. We are in our 33rd.
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Kutura did a couple of days of breathing on his own for 8 hours. Today he just did 12 hours. I left tonight when he was on his home stretch and he wasn't working hard at all ~ very comfy. He is still in his humidity crib as his weight is unstable. He had edema (swelling/fluid retention) and this has mostly cleared. So with that he put on a heap of weight which he is now losing; to be expected. He is nearly 1.7kg, but there is new evidence to suggest that babes with a weight of 1.6kg do as well as babes that are 1.8kg when moved into an open crib. So I will be watching the system with interest to see how quickly change is implemented based on this new evidence.
Speaking of evidence, Kutura loves to breastfeed at night, as this is the time we have been having long cuddles. So when the consultant said I should give him is one suck feed a day at the beginning of his 'time off cpap', and said that time has to happen in the morning; well .. it wasn't working! I chatted with nursing staff about this and decided to get some evidence to support my case. There is a scoring system of 1-6 used for feeding. In the mornings we were scoring 2s and 3s. So I had a sneaky night feed with a lovely nurse and he scored a 4, but that was off the record, of course. Next day I asked the nurse for another one as my fave team leader was on board. We talked about my plans and she dropped milk into Ks mouth (as I was cuddling Moss on cpap) .. she could see how much he loved it and swallowed 4mls without a dribble, so she could see he wasn't just using me as a dummy. That got written in too.
Next day I asked if his 8 hours off cpap could start at 5pm instead of in the morning. He scored a 5 Suck feeds are done when the tube feed is due and the 5 meant he wasn't given his full tube feed A score of 6 means no top up at all. Next, a nurse explained to me that they find it easier to monitor a baby having time off during the day and she explained all the medical reasons. It all made sense, but what about the first time he will do 24hours I asked??? Will he be given a break, then have the first 12 hours thru the night so the second 12 hours can be monitored during the day. Needless to say a bit of persistance got me a switch in plans and Kutura will now be the only night-time-offer in the unit as of tomorrow.
They think I'm mad as he is so close to being off the cpap altogether they don't understand why I can't wait to breastfeed like everyone else does. Umm .. coz everynight when I see my son he begs me for the breast. Not really that confusing where I'm sitting.
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Bluqi is emotionally ready to meet the boys (still have to get rid of her cough; hoping it is psychosematic. We took her to the EKKA the other day and we went on a ride that made her squeal (as she requested!)
Matt has a semi-flu (tis the ekka, go figure) and has put himself on quarantine from me
That is hard right now .. but I just can't be sick!!
I have taken lots of photos and starting to get a little footage now too. Sorry we haven't got more pics up. Such a tease, I know. Matt and I are quite particular and haven't had the chance to sit down together with it.
I saw a JBer in the ward tonight .. small world. She was tired from supporting a birthing woman.
So much more I could share about the institution and the dynamics in there .. my head is reeling! But time to sleep.
Thanks for sharing my journey
I look forward to see locals this Friday
Love to all
xXXxx
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thankyou lovelies
i love that you are all listening and sharing this with us
when i feel weak in the system of think of you all and take a deep breath and it fuels me on
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Moss' head circumferance is the same ..
His cpap peep is down to 6 from 7 (basically his breathing is improving)
Loving his open crib and funky clothes and blankies!!
He now weighs 1984gms and is a size 00000 (just ~ it really depends on the brand)
Kutura has been quite anemic over the past week or so, and recent bloods revealed a transfusion would help him, which it did. He is doing fantastic now completely off cpap with now extra oxygen required in his crib! (Breathing all by himself!!) Was a long day yesterday as we missed our daily breastfeed due to the increase in workload on his lungs .. which he is rockin' with He did have edema a few weeks back (fluid retention, very puffy) .. so he put on weight with fluid, then lost the weight when he lost the fluid. He only put on 20grams last weigh-in, but we now know this is read weight ~ 1684gms
Moss to date:
born 26/5
brain bleed
ventilator
helicopter transfer
humidity crib
TPN feeding
grade 3 brain bleed, possible re-hemorrage (ventricles only)
partial collapsed lung - drainage surgery
blood transfusion
steroids for 12 days
cpap
anemia - 2nd blood transfusion
hydrocephalus diagnosed
brain tap (10ml fluid removed from head)
out of humidity crib
currently cpap of 6 in 24% oxygen
currently on the surgery avoidance scheme
Kutura to date:
born 26/5
brain bleed
attempt to ventilate - nearly lost him
helicopter transfer with manual bagging - flatlined twice
3 shots of adrenalin and cpr
ventilator
humidity crib
TPN feeding
grade 2 brain bleed
blood transfusion
prem diabeties - insulin
cpap
edema - plasma trannsfusion
anemia - blood transfusion
currently in humidity crib
currently requiring no respiratory support
I think I got it all.
The boys were born on June 29. My EDD was Sept 29. Nearly 2/3 of the way home.
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Moss' head has shrunk by 0.5cm since yesterday
Kutura had TWO breastfeeds today
Life is good
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Kutura no longer needs top ups on his breastfeeds and has been upgraded to special care so we can gradually increase his tube feeds to all breastfeeds so we will be ready to go home ~ but he can still visit his brother in the intensive ward when I am there. I am home at Rons now, but making my plans to move into Intensive Care so the boys can stay together. Moss has improved and settled so much since Kutura moved in with him just yesterday. His peep is now down to 5 which is what it needs to be (with less oxygen tho) to start having 'time off' his cpap. His head is stable and he has avoided surgery this week, with the aim to avoid it altogether!
Yes locals .. ongoing help will be appreciated over the coming month or so With your support I know this move will be easy. Thankyou in advance. Matt has recovered from his bout of the flu and is heading to Briz now. Bluqi will finally meet her brothers tonight or tomorrow. My favourite nurse is currently seeking out the most comfortable recliner chair for me.
Wow .. 8 weeks ago Jo was painting henna on my belly. How time flies!
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I noticed Kutura had a puffy face a few days ago. I told her. Yes that's the CPAP headgear squashing his face, not much we can do about that. I mentioned it again and again. The other stock standard reply I got was that it is the positioning of the baby, once we roll him over (every 4 hours with cares) the fluid drains in a different direction. I know all this stuff. We have been here 4 weeks tomorrow. There is something else going on. The boys doctor is back on after a weekend off and she says Kutura's body is slightly swollen as well as his face, and it is obvious to her that his fluids levels are too high. 3 days I have been speaking up about this, but didn't speak loud enough (or high enough up the ladder) as I was being a good girl instead of listening to my instincts! Grrr .. His face is looking much better already.
In the meantime, the same nurse drops a pair of scissors on the floor, picks them up, uses them to cut tape to replace on Moss' oral feedtube. Now today (2 days later) he has a temperature and suspected infection. These are their rules she broke! His feeds have been cut and antibiotics have been administered :-(, and the blood culture comes back in 48 hours. His temperature has come down thankfully.
I am recovering from mastitus and my energy is returning. Getting great sleeps during cuddle time .. and hoping for more .. but it all depends on the baby and the day - and the nurse But perhaps it was all just a coincidence, hey?
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I'm such a dobber
I emailed the clinical nurse consultant. And from now on I'll be chatting with the consultant/doc about symptoms I notice. These two women are higher up the ladder, great listeners and proactive. Tried trusting and utilising the nursing staff, as discussed in meetings with doc and boss nurse, but why settle for less??? This is my sons health!! In this system where only few listen, I am sticking with those that are and have the power to act; so will be directing my efforts accordingly from now on
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Well Moss' infection was minor and cleared quickly.
Loving having cuddles in between the two cribs .. had a couple of double cuddles the last two nights
In a routine of going to the hospital at 3.30pm (after 'quiet time') and staying until 3-5am, then going home for sleep. Having lunch/brunch with M n B and spending time with them .. then going back to the boys. Such a strange thing having 2 members of my family a 5 minute walk from the other two.
On the medical front, the boys are great. Did I tell you they were upgraded to room 2? No more sterile procedures (well, rarely) and babies in open cribs are around us too! They are both off TPN, which means they are living purely on my breastmilk now. Their birth weights were 1000gms and 950gms and they are now 1400gms and 1360gms. They are getting better at breathing and so over the CPAP nasal prongs being in their faces! Poor lil men Moss is on a peep (pressure) of 8 (we are aiming for 5) and is now in 21% oxygen - which is the same as the air we breathe! So Doc will probably reduce his peep to 7 soon. Kutura has had his peep reduced to 7, and now 6 and his oxygen is fluctuating between 22-25%.
Kutura's cry is becoming so healthy! He is not greedy for his food, but let's us know when he is uncomfortable and wants his headgear adjusted or to be repositioned. Moss' was hoarse for a lil while after being ventilated, but his larynx has healed nicely the last few days and he lets us know when he is hungry!! I love that my boys are doing 'baby' things as well as 'premmie' things. They are getting so strong and I am loving seeing their personalities shine through.
Matt had his first cuddle with Kutura the other night. I sat next to him and cuddled Moss. He is now keen for a cuddle with Moss of course, so next time Bluqi goes to Dea's for a sleepover than is our plan Bluqi is awesome, she has been so playful and accepting of the whole situation. We have been making the most of the times we do have together these days.
Love to you all xXXxx
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The last few twin cuddles have been difficult, but for such a beautiful reason ~ two babies trying to nuzzle their Mum while on CPAP is just frustrating for all involved!
So last night I had a solo cuddle with each of them to offer them the chance to meet the breast. Moss was exhausted after his wash and weigh, so fell asleep. Will try him again tonight. Kutura had his first lil suck! Three sucks of the nipple and only two drops of milk (as I expressed before so as not to drown my babies!) .. and he was asleep content. Awww... The milk did come back out of his mouth tho, so his swallowing reflex hasn't kicked in yet.
I have been avoiding updates as I have been processing the results from Moss' last head scan myself. He initially suffered a brain bleed (they both did actually, but Kutura's is healing well), but he has now been diagnosed with hydrocephalus. There is a blockage, probably a bloodclot, which is preventing the cerbral fluid from draining (this fluid is a constant cleaning and communication mechanism of the brain and spinal cord, from what I can understand). Because the fluid is always producing, yet cannot drain, the ventricles in the brain are becoming full of fluid and putting pressure on the brain. In adults this is a lot worse than in babies as their bones are not yet fused, meaning the head can swell and grow. His head has grown a little, and doctors are still hopeful it will correct itself and drain ~ we are not critical yet, they say (sounds f*#ken critical me), and there is no talk of death (family please be assured). However, if the head continues to grow the only option is surgery. Moss' headscans are weekly now, and his care is in the hands of neurosurgeons. I am emotional and scared and doing my best to keep depression from dragging me into a deep hole .. looking into Moss' gorgeous eyes, seeing how alert he is and reminding myself of the symptoms of hydrocephalus he doesn't have help me keep hope that the blockage will clear and the fluid will drain. If anyone googles hydrocephalus, please don't be scared of the swollen head images around Moss. These are old science photos and these days babies are treated before their heads swell. I do feel for the babies in 'developing' countries tho, who still endure and die from this. If you must google, the surgery we would be looking at if needed is the insertion of a shunt, which I will only chat about later here if that is where Moss' path takes us. For now .. draining energy to my boy!!
Breathing and weight wise the boys are still progressing. Kutura now 1.6kg and Moss 1.5kg. They are regarded as 'bigger babies' in here now, incredible hey? I took some lovely photos of them the last few nights, will share soon.
It is Kutura's turn for a wash and weigh tonight (they are weighed every 48 hours so we know how much to increase their feeds) .. so I am curious as to if he will take the breast again, or if he will be too tired! Moss has had the healthier appetite and better suck of the two to date, so I am hoping he will take the breast tonight. I will make sure he is rested first this time
Spent the day with Bluqi yesterday .. we went out for sorbet, had a bath together, read lots of new books. Was great to be one-on-one with her again and feel really connected. I have missed her. She has accepted that she has two brothers now (she wanted a sister) .. and is feeling emotionally ready to meet the babies. I am sure her cough will heal now I want her first meeting with them to be special, but as siblings are not even allowed to touch the babies I have another hurdle to contemplate jumping over. She has sat in on a few meetings with Matt and I with the docs/etc and they can see how cooperative and understanding she is, so that is a good first step in giving her a quality meeting with her brothers.
Looking forward to getting the cloth nappy system in place. Not this week .. but probably the week after we will be ready to go! I will then be bringing in all the boys bedding too. I didn't take in the bits and pieces I had, as apparently stuff goes missing, so I thought it would be easier for the nurses if it was all mine. It will be nice to be finally doing my boys washing. Can' believe I said that??!!
Matt is well and send his love too.
As always .. your support has kept me afloat
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Oh!! I forgot to tell a story of Matt's from the other day .. hehee
He got there to have his first cuddle with Moss (as arranged with the nurse) and was told there was a sterile procedure that would only take 10 minutes. He wasn't happy, but complied. He rang me, a bit upset, as the nurse has used the line "it's only 10 minutes, thet are all yours for the other 23 hours of the day" .. we hate that lie. Was obvious she was one that hadn't read our care plan, lovely as she was. So Matt had his cuddle with Moss, and an hour into the cuddle it was quiet time. Matt 'refused to give the baby back' was the phonecall I received. I laughed and corrected the consultants language. The baby IS back when with his parents. I told her I can't offer any help, but I am pretty sure Matt is claiming his 23hours of the day after the nurses comment to make a statement He had the clinical nurse consultant, nurse unit manager and consultant talk to him. I can see him shooshing them and gently patting Moss. When Moss was next due for cares the nurse asked him 'what are we doing? am i doing these on you? or what would you prefer?' Matt thanked her helping with the cuddle, and told her how we like to cuddle from cares-to-cares and let her put Moss in the crib
I love my man!
(And my girl and my boys!!)
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I met with a neurosurgeon the other day. She was quite arrogant. I made the mistake of calling her by her first name and she corrected me like a norty school girl. I complied and played nice. Don't really want to get on the wrong side of someone who may be doing surgery on my son's brain, hey? I believe she is good at what she does tho, which is all I am really concerned about. One of her registrars is keeping a close eye on Moss. His head circumferance was stable for a few days, and he was very headachy and looked sick. His head then grew at the rate of 0.5cm a day for a few days, and the last two days has not grown. However bad this sounds, he is actually looking a lot better. I believe that the ability of a baby's head to grow is an advantage, as now the body has more of a chance to diffuse the blood that is blocking the fluid from draining, and that is a good thing. I have noticed that he is more headachy when his head is laying one way than the other, so am trying to help him by positioning him the way he likes. He is still increasing his feeds and weight - now over 1.7kg my lil Moss man has become my big guy!! Although he is very interested in the breast it is too draining for him at present, so we are spending our together time in skin to skin and enjoying sleep instead. No need to push him. He like me dropping milk into his mouth and sucking on my finger. His eyesight is amazing. I was told that prems can only see about 30cm-1m in front of them, but Moss was following a toddler playing with great interest yesterday; she was 4+ metres from him He has been much more alert the past day or two, and regardless of if he needs a shunt or not I feel he will be ok.
Kutura is now having one breastfeed a day. The boys are tube fed 2-hourly and I feed him with the 11am, at the start of his 'time off cpap'..!!! This means he is breathing all by himself! He has had 2 days of 4 hours and is currently attempting 6. I know he will be fine. We will increase his 'time off' and if all goes well he will be 'off off' in a week-ish. I am told that newborn babies attach and suck and 14-18 times before coming off for a breather, then reattaching again. Kutura sucked 10-12 times today at his peak, during the 20 minutes he spends at the breast. He is so tiny. He is the tube fed his usual amount, which is pretty harsh as he does get a bit from me. But as he is on 'restricted feeds' (due to his edema, did I mention that earlier? anyway .. it's just about gone now) .. so I let it go. There is a feeding system here and no top-ups (tube feeds) are given for scoring a 5 or 6, I think. Nurses are impressed he is scoring a 3 .. I just think he is going at his own pace and obviously ready for it. He has been dropping weight slightly, mostly as his edema is clearing, so hopefully now the weight he puts on will be real weight. He is over 1.5kg and looks so very cute in the oversized hoodie he wears for his morning feed. We are frustrated spending more time together, as he just want to be at the breast, and he really doesn't have the energy for it yet. I am hoping Matt will take up the job of the boys wash and weigh.
As much as I am wanting a different model of care, I have accepted the one I am in and working withing it's frameworks. If they were set up for 24/7 kangaroo mother care (private room, appropriate beds, staff trained for it and equipment made for such care) .. it would be different. But it is not like that. I see where they are coming from. I see the compromised oxygen levels in my boys, their increased or decreased heartrates, how exhausted they get from coming out for cuddles; but I have come to understand that and choose when I how long I cuddle for within their framework. It's not 24/7 .. infact it is no more than 6 hours a day; but I am content with that and have learnt to interact with the boys in other ways. Teaching the nurses to get out of my way has been an interesting process (and still is!) .. but there are my babies whether they are on me on in a crib and how I handle myself in the space has developed. It is a skill I wish to teach.
There is compromise tho from them too. Last night was line change night (for eg) -a sterile procedure parents are not to be present for- .. there were 4 in our room and they were all done with me there. None of the nurses said a room, and I am trusted not to make a big deal of it to other parents. Breastfeeding is not really encouraged here until babes are 'off off' cpap .. yet my morning breastfeed with kutura is now a part of our routine. The doctors listen to me when I talk about the changes in Moss' head and behaviour, as another example. I know parents should be trusted to make statements to docs about their babies, but let's face it, many of them are quite detached from their babies (thru no fault of their own), and staff encourage parents to be this way unknowingly when they do things 'the way it is done here'. I have made it clear that 'this is just a standard procedure' is not an answer to a question - sadly most parents accept it as they are so afraud their baby will die they are scared to help them live. Perhaps it is different in the special care unit .. but the intensive care unit really is intense!
I am still struggling with many things .. but they are listening and slowly implementing some of the changes I am suggesting. The biggest thing is the lack of communication and information, as well as the assumption that the parents will consent to their every move. I have had outbursts, meltdowns, tears of frustration and laughter inside the NICU and my fight has become much more than just about my boys, as I have met so many women and heard so many stories. The expression room is a haven where we comfort each other. Others are speaking up too. I do hope I have the energy to continue such when I am finally at home with my boys. I wonder if they will let me in again to visit other mums there?
My focus of course is Moss and Kutura .. but if everything happens for a reason, there is always so much more around the corner.
I am hoping Matt will update on behalf of him and Bluqi soon. As I haven't seen them much the past few days. They are park hopping today my phone tells me
Thankyou to the dahl fairy .. absolutely devine!
love to you all xXXxx
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Well it's Friday 13 and the bad news is that Moss had his first procedure done on his head today. The good news is, I was present to calm and console him (sterile procedure during quiet time!) .. the staff were wonderful. We shaved a lil loveheart piece from his hair and put numbing cream on. I thought the nurse was doing it in slightly the wrong spot, and discussed this with her, but she explained why and how. I accepted .. being invited to my first sterile was not a time to argue, I thought. An hour later a neurosugeon/registrar, Toby returned, and I was right .. grrr. So he asked for a lil more hair to be shaved, which I asked to do myself this time. (I had smeared the anesetic cream over that bit too, just in case ). After a scrub up and a bit of communcation, Toby placed a needle into a ventricle in his head and took about 10ml of fluid. Moss handled this surprisingly well. I put 'calm and clear' remedy (from BugBoy - thanks!!) on his pulse points, and drank 7 drops myself. I wasn't allowed to touch him, but the nurse swaddled him gently and help his cpap in and he could hear my voice the whole time. His face was covered by a 'sterile field' (green sterile cloth) so it was kinda as if it was me holding him still. Toby was very smooth and gentle, I was impressed. Moss didn't cry nor try too much to wriggle. More good news - the fluid was clear!! Not one speck of blood. The second Toby was out of his crib I was in. I actually thnk he find the cpap more distressing than the needle.
His head size has remained the same for the past two days, so considering the fluid is clear, maybe it is close to draining by itself. We will have results back from the lab in 2-3 days about the fluid. I have kept my surgical mask for Bluqi and Moss' dark hair for his memory book.
Kutura is currently having 8 hours off cpap. The first 1.5hours he spent with me at the breast in his funky hoodie.
They both have new socks and love them, even tho they are somewhat big.
Matt and Bluqi are at the EKKA patting baby animals .. I wsh I could be there with them.
Sometimes I feel I need two of me! Actually, a third me to do some sleeping would be lovely too
This is now between the boys cribs:
"There is a common perception that compassion is, if not actually an impediment, at least irrelevant to professional life. Personally, I would argue that not only is it relevant, but that when compassion is lacking, our activities are in danger of becoming destructive. This is because when we ignore the question of the impact our actions have on others' well-being, inevitably we end up hurting them." ~ The Dalai Lama ~
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Moss' head hasn't grown in two days
The lab results showed his protein levels were almost normal (excess protein is thick and gluggy residue from blood) .. so drainage may be happening. Then again, just coz the fluid is good it doesn't mean there isn't permanent damage done to what I can only describe as the filter-holes up the top of the head, which would require the intervention of a shunt. All we can do is wait and see. Neurosurgeons suggesting a resovoir tap, nicknamed a 'button' next week will take pressure off his head if it is still swelling. This is like a non permanent shunt, and used to tide us over while a decision is made. They also feel he is a bit little for the shunt.
Little??? Pffft .. Moss is a big boy now. Fitting in 000000 and even some 00000 clothes. Yes I am dressing him as he has been moved out of his incubator and into an open crib. The requirement is a weight of 1.8kg, and he is now 1.9kg. So we are working out what clothing and blankets he likes to keep his temperature stable and I will moved his wash time to the day as it is a bit warmer and will help him. He will be able to have an immersion bath (real bath ) once he is stable. Until now he has been getting sponge baths.
He is happy. Doesn't like to be cuddled upright like he used to .. my big boy now likes to be cradled and look lovingly in my eyes while falling asleep. Awww .. I tried him again on the breast and he used me like a tasty dummy He is happy when I drop milk from a small syringe into his mouth. He is learning how to swallow at his own pace. For most babies that is in the 34th week. We are in our 33rd.
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Kutura did a couple of days of breathing on his own for 8 hours. Today he just did 12 hours. I left tonight when he was on his home stretch and he wasn't working hard at all ~ very comfy. He is still in his humidity crib as his weight is unstable. He had edema (swelling/fluid retention) and this has mostly cleared. So with that he put on a heap of weight which he is now losing; to be expected. He is nearly 1.7kg, but there is new evidence to suggest that babes with a weight of 1.6kg do as well as babes that are 1.8kg when moved into an open crib. So I will be watching the system with interest to see how quickly change is implemented based on this new evidence.
Speaking of evidence, Kutura loves to breastfeed at night, as this is the time we have been having long cuddles. So when the consultant said I should give him is one suck feed a day at the beginning of his 'time off cpap', and said that time has to happen in the morning; well .. it wasn't working! I chatted with nursing staff about this and decided to get some evidence to support my case. There is a scoring system of 1-6 used for feeding. In the mornings we were scoring 2s and 3s. So I had a sneaky night feed with a lovely nurse and he scored a 4, but that was off the record, of course. Next day I asked the nurse for another one as my fave team leader was on board. We talked about my plans and she dropped milk into Ks mouth (as I was cuddling Moss on cpap) .. she could see how much he loved it and swallowed 4mls without a dribble, so she could see he wasn't just using me as a dummy. That got written in too.
Next day I asked if his 8 hours off cpap could start at 5pm instead of in the morning. He scored a 5 Suck feeds are done when the tube feed is due and the 5 meant he wasn't given his full tube feed A score of 6 means no top up at all. Next, a nurse explained to me that they find it easier to monitor a baby having time off during the day and she explained all the medical reasons. It all made sense, but what about the first time he will do 24hours I asked??? Will he be given a break, then have the first 12 hours thru the night so the second 12 hours can be monitored during the day. Needless to say a bit of persistance got me a switch in plans and Kutura will now be the only night-time-offer in the unit as of tomorrow.
They think I'm mad as he is so close to being off the cpap altogether they don't understand why I can't wait to breastfeed like everyone else does. Umm .. coz everynight when I see my son he begs me for the breast. Not really that confusing where I'm sitting.
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Bluqi is emotionally ready to meet the boys (still have to get rid of her cough; hoping it is psychosematic. We took her to the EKKA the other day and we went on a ride that made her squeal (as she requested!)
Matt has a semi-flu (tis the ekka, go figure) and has put himself on quarantine from me
That is hard right now .. but I just can't be sick!!
I have taken lots of photos and starting to get a little footage now too. Sorry we haven't got more pics up. Such a tease, I know. Matt and I are quite particular and haven't had the chance to sit down together with it.
I saw a JBer in the ward tonight .. small world. She was tired from supporting a birthing woman.
So much more I could share about the institution and the dynamics in there .. my head is reeling! But time to sleep.
Thanks for sharing my journey
I look forward to see locals this Friday
Love to all
xXXxx
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thankyou lovelies
i love that you are all listening and sharing this with us
when i feel weak in the system of think of you all and take a deep breath and it fuels me on
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Moss' head circumferance is the same ..
His cpap peep is down to 6 from 7 (basically his breathing is improving)
Loving his open crib and funky clothes and blankies!!
He now weighs 1984gms and is a size 00000 (just ~ it really depends on the brand)
Kutura has been quite anemic over the past week or so, and recent bloods revealed a transfusion would help him, which it did. He is doing fantastic now completely off cpap with now extra oxygen required in his crib! (Breathing all by himself!!) Was a long day yesterday as we missed our daily breastfeed due to the increase in workload on his lungs .. which he is rockin' with He did have edema a few weeks back (fluid retention, very puffy) .. so he put on weight with fluid, then lost the weight when he lost the fluid. He only put on 20grams last weigh-in, but we now know this is read weight ~ 1684gms
Moss to date:
born 26/5
brain bleed
ventilator
helicopter transfer
humidity crib
TPN feeding
grade 3 brain bleed, possible re-hemorrage (ventricles only)
partial collapsed lung - drainage surgery
blood transfusion
steroids for 12 days
cpap
anemia - 2nd blood transfusion
hydrocephalus diagnosed
brain tap (10ml fluid removed from head)
out of humidity crib
currently cpap of 6 in 24% oxygen
currently on the surgery avoidance scheme
Kutura to date:
born 26/5
brain bleed
attempt to ventilate - nearly lost him
helicopter transfer with manual bagging - flatlined twice
3 shots of adrenalin and cpr
ventilator
humidity crib
TPN feeding
grade 2 brain bleed
blood transfusion
prem diabeties - insulin
cpap
edema - plasma trannsfusion
anemia - blood transfusion
currently in humidity crib
currently requiring no respiratory support
I think I got it all.
The boys were born on June 29. My EDD was Sept 29. Nearly 2/3 of the way home.
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Moss' head has shrunk by 0.5cm since yesterday
Kutura had TWO breastfeeds today
Life is good
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Kutura no longer needs top ups on his breastfeeds and has been upgraded to special care so we can gradually increase his tube feeds to all breastfeeds so we will be ready to go home ~ but he can still visit his brother in the intensive ward when I am there. I am home at Rons now, but making my plans to move into Intensive Care so the boys can stay together. Moss has improved and settled so much since Kutura moved in with him just yesterday. His peep is now down to 5 which is what it needs to be (with less oxygen tho) to start having 'time off' his cpap. His head is stable and he has avoided surgery this week, with the aim to avoid it altogether!
Yes locals .. ongoing help will be appreciated over the coming month or so With your support I know this move will be easy. Thankyou in advance. Matt has recovered from his bout of the flu and is heading to Briz now. Bluqi will finally meet her brothers tonight or tomorrow. My favourite nurse is currently seeking out the most comfortable recliner chair for me.
Wow .. 8 weeks ago Jo was painting henna on my belly. How time flies!
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