Third NICU Week

Will update properly soon .. but the meeting went well
I am surprised at the willingness to compromise after all that is going on .. but compromise I must too. The reality is, that I cannot give the boys the care I want in this environment. Once I swallowed that and starting taking notes of what I know about the staffs routine and how we can better include parent care in it, ideas starting flowing.

Kutura has been moved into Moss' room (finally!).. which will make life so much easier.
Kutura cuddles were wonderful! Although Moss has been desat'ing all day, the doc is happy for me to cuddle with him tomorrow morning - I was very surprised at that to be honest. Listening to me perhaps?

Matt has gone to visit them now .. and I am about to hop in the bath with the lovely Blu
More detail later

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15/07/2010
Even when I am with them, I miss them
This is so hard

Sure there are some positive things being put in place, tho this is just scrathing the tip of the iceburg and I have done a lot more compromising than them. I have learnt so much, tried so hard, and the saying 'pushing shit uphill' comes to mind.

it is the system .. i can't implement change and get my way overnight .. but there are people open to change in there
dunno what hope we all have to be honest .. the whole place is on autopilot


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Chatting with our doctor, it is clear that Moss really needs to come off his ventilator. He has outgrown the tube and if he doesn't move up to CPAP like his brother soon he will have to undergo getting his tube removed and another put in. We discussed steroid treatment and agreed to a short course (which is 12 days, a long course being 6 weeks). We were a having a cuddle yesterday morning when he was given his first dose. This morning he is showing huge changes already!! I have a photo of him, taken shortly after birth with big bright eyes. I hadn't seen his eyes like that since today .. he is much more alert and interactive, and has a much lower oxygen requirement, so we are confident this treament will help him make the transition to CPAP. He is now on 7ml feeds 2 hourly and weighs more than Kutura.

I got to the hospital last night to wash n weigh Kutura, was there 10 mins and there was a medical emergency in the crib next to his. It seems the wee girl's ventilation tube had come out, lights were flashing, doctors came running and the machines around her weren't making the prettiest of tunes. I smiled at my nurse, grabbed some expression kits, and left without being asked. The night doctors stabilised her, the head doctor was called in from home and worked on her for another hour. She is still with us today, but I can see why my doctor has fears around Moss and his ventilation tube around him being handled at night. What I can't understand is why ventilated babies come out for a weigh in the night time at all, considering the doctors on duty are inept to handle the full situation. Contradictions abound!

I returned after expressing, and washed my gorgeous Kutura. I told the nurse that my doctor has no issues with me cuddling him at night now, and asked her to get the cuddle chair as Ks sats were good. The other two nurses in the room weren't up for it was a line change night, but mine was, and felt bad about the emergency eating in to my time with Kutura. I had a wonderful hour or so cuddle after washing him, he has been asking me for a cuddle after his bath and he stabilised well on me and had a better night once I left too. He sucked milk off my finger much of the time. His milk is up and down with his gassy lil tummy, but he is still increasing weight and taking at least 5+ mls per feed.

Did I mention that yesterday was the first day I have cuddled each of my babies in the one day!? <3

Once both boys are on CPAP this routine will 'allow' me a big cuddle with one in the morning and a wash and smaller cuddle with the other in the evening. I am pushing for more as they get used to me I can feel the difference in staff attitude to me, so they have obviously been briefed by the CNC.

Went in for my big cuddle with Kutura this morning (and like I said, found a very alert Moss!) .. and afterwards both of the boys were awake and fussing. First time I have really experienced being torn between cribs .. wow! This is what twins are like Loving it! Matt is going to try and get their cribs next to each other. He is doing well going in first thing in the morning to make things happen. Means I get there a lil later, but he gets things done. I guess we are playing good cop, bad cop. I haven't put the care plan in place yet, but the routine is happening, and we seem to have regular nurses assigned to the boys now, so it is easier to have them learn the details of the care we seek.

Only in week 3 of life .. not even 30 weeks adjusted yet. We have come so far and have such a long way to go. I feel bonded and connected to my babies. They are so different looking to each other, I am enjoying that they are non-identical. I feel Moss is going to be a little snuggler, where as Kutura may be a boob-and-run kinda babe. Time will tell! May just be where they are at right now too.

The support is continuing .. loving the meals and sweet treats, parcels and blessings!
I know I haven't been up for visitors, and I thankyou all for understanding my one tracked mind. Not much room for anything else in my conversation I have been dreaming about them every night .. so many different perspectives.

I am happy and sad .. up and down like the rollercoaster I have heard it described as.

Bluqi still has a lil cough .. just enough that she still cannot meet her brothers, but no so bad that she is 'sick'. She is still loving it here. Her and Matt did a trip home the other day where she loved her own space and toys!

2.5 weeks .. IN the 3rd week
I hope Blu can meet her brothers soon
She is emotionally ready now .. so the lil cough should fade soon

Thanks for reading and continuing to send love


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A little 24 weeker is fighting for his life tonight. He has been with us nearly a week. Despite losing his twin, he has been very persistent. His crib is in between my boys. The energy in the room is heavy. His mumma singing to him sweetly, his daddy holding his hand, a compassionate nurse assisting them, his doctor working thru the night despite being on all day.

Despite my grief around the birth I wanted, and how long I wanted to carry my babes, how I long to hold them all the time rigtht now and can't .. I am still so 'lucky' to have what I do. My boys are continuing to grow, breathe and thrive.

Please send some love to little Cody tonight .. maybe in the morning he will have responded to the blood transfusion he is currently receiving .. or maybe he will be flying with the angels. Namaste lil man.


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Cody is still with us
His Mum had tears of joy today after chatting with the docs.

Moss is getting moved out of his noisy spot and next to Kutura
Except for Kutura's tummy aches causing him little bradys (pronounced bratty around here, and short for bradycardia, meaning slow heart rate) .. the boys are rocking. Can't believe they will be 3 weeks tomorrow!

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20/07/2010

As for a shared crib .. Moss will make the transition from ventilator to cpap tomorrow .. and will be watched closely for 48 hours
then i will push for that harder xX
My boys are soon to meet again

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