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

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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


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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!


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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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