So we have moved into Ronald McDonald House aka 'Ron's .. Blu loves the excitement of the city. She has been into the myer centre today and on a train ride with her Dad. A friend took her to a library so he could have a break. The room is more cozy here now since Matt did a trip home, and we are feeling settled. Matt is currently cutting up the placentas.
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had a cuddle with K today .. M kept his first two feeds down .. I sang to him for an hour before giving it to him
going to change my routine and have my 5 hour sleep in the afternoon as I will get longer sits at night when the docs aren't doing their obs/scans/ect (i take one long sleep per 24 hours to keep milk supply up, 8-10 expressions in a 24hour cycle)
off to sleep .. very content after myu cuddle .. will be tacking the same issue with M this evening
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After their rocky start the boys are doing great on the health front!
I have changed my routine to have my big 5 hour sleep in the arvo, as this is when they have their 2 hour lockout, followed by a timely changeover between day and night staff when they don't like parents being in there. So I will be heading there now and staying till sunrise.
Had a cuddle with K earlier today. Overwhelming for the nursing staff as his belly button line (bloods) was still in and there is a lot of inbred fear wround this. The doc-in-charge is supportive of me and knows I know my shit and am happy to learn from them how to go about these things safely and calmly, so has been fantastic! I will make no decisions or discuss such stuff with anyone else on staff and have made that clear so noone is in my ear
Ks stats/obs were the best they have been his whole stay for that 1.5hrs he was on me.
I just rang the hospy and he is now on cpap (no more ventilator, breathing mostly for himself). They have a policy of no cuddles for 24 hours after this, so will cuddle him again tomorrow night, and every night following! K is on 3ml of feeds 3hourly
Off to get a cuddle with M tonight, just played hardball with the nurse on the phone - got her! Think of me at midnight. M has finally started keeping his down, so is on 1ml 6hourly. I think it was the hand cradling and singing for an hour before the first one today that helped. But skin-to-skin will help him more!! He was x-rayed today, but I feel all is stable with his lung, and he is doing more work and the ventilator less today.
The birthsong doesn't stop when you've got prems .. gotta keep roaring for longer and louder and softer all at once. That NICU doesn't know what hit them, but they are now understanding who I am and who's babies they are.
I have been collecting names of nurses I like and will approach the roster-maker soon when it is a chunky sized list .. see what happens I guess. Keep the ones I don't like off my babes. Makes such a difference.
Many have been asking for photos .. we are compiling some lovely ones and Matt will photoshop something gorgeous before we share. Thanks for your understanding and patience.
Blu n Matt have been very busy! Rockclimbing, trainrides, play centes, parks, they are going to the wizard of oz on the weekend. I am a little jealous!! They are well bonded and loving being together like I am being with the boys. Can't wait to all be together tho .. I feel so divided, but all is well in perspective.
Love to you all and thanks so much for the support.
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I STILL HAVEN'T CUDDLED MOSS .. it's been 10 days!!
The nurse I had spoken with said all good .. then I got there and the head nurse came to me and said it couldn't happen as there were no senior docs on duty at night, only juniors. Been at hospy all night, i slept for a few hours in the lounge there, and got home coupla hours ago. This is fucked. I am explaining my values around constant kangaroo care and they are repeating theirs. They say they get it, I really think many of them are trying. It is the system, not the people working it I am up against. He needs to feel me .. to give him a greater will to live .. to feel love, protection, the homebase of my heartbeat.
I am worried about Moss' lungs. Had a dream that I was leaving hospy with the two boys in a wrap on the front, and the oxygen bottle on my back At least the dream showed us all leaving together, but this is a challenging road!
Spoke with their Doc today, who I really like. I understand the model of care they are working from, but their requiring stability before cuddle time is irrelevant in mine. I said that I don't see me as a 'cuddle' I see me as the incubator, and one that is better than the cribs. I can see how busy the staff are. A 24 weeker came in next to Moss last night, plus a 31weeker, and there is now one of a set of triplets is near Kutura. Both my boys have their umby lines out. This is a blood line basically, it is used to draw blood from the artery so oxygen levels (etc) can be checked. Bubs have been left on their backs for 4hours as bleeding is what they fear around this. It is then another 4 hours until they 'allow' cuddles. So will have K tonight, but M they are still keeping away from me around the weakness of his lil lungs He is on 2ml feeds tho now, and K is on 4ml feeds. The way they check for that is with a line they suction from their tummy. If bile comes up, no feed. After a feed, they check to see how much is left to asertain when to increase/decrease or stop feeds.
So tired .. off to sleep
Loving the meals and support sisters. Been thinking about how to spoil you all back sometime
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Off to cuddle K and to arrange time to cuddle M for tomorrow .. that's the plan, as organised with registrar/doc anyway
woohoo .. 110ml .. I need at least 120ml every 3 hours by the time we discharge with twins they say .. nearly there
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Well I arrived tonight expecting a cuddle with K (skin to skin like i had the other day with hm)
.. didn't happen. Bit we are more connected now, so we had a good night.
Had a hold of Moss (not a cuddle, just held in my hands in the crib) and really connected with him tonight.
I now have scrapbooks by the boys cribs and some coloured pens, glitter, glue, tape etc and have encouraged the nurses to contribute
More detail later
ZZzzzzzzzzzzz..........
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Day 11
Had a cuddle with Moss, 2 hours of bliss! He is such a smoocher! We fell asleep, he woke, so I put a drop of fresh milk in his mouth with my finger. He sucked gently then drifted into sleep, as did I. When I woke again he was sucking his finger, which he also did when he was placed in his crib. The nurse told me this is seen as a 'good' sign' to them, as it is a self-settling tecnhique. He is now much more stable now.
The latest international studies show that babes do better with kangaroo mother care than without. The hospital we are at has wonderful staff and great medicinal care, but an outdated model of care is being practiced .. they know I am right about this, tho individual staff members have differing beliefs, so this effects what care I can give my sons from visit to visit based on rostering and staff duties. I have arranged a meeting with relevant authorities for Monday to set up a patient care plan for my boys based on the evidence I have (thanks crew) supporting attachment parenting in an intensive care environment. I have been looking and learning and trying to get my head around the very real job these people have juggling the needs of so many babies. I want to find a way to 'fit in' with their schedules and minimise the handling of my boys, whilst still giving them as much KMC as I can.
Matt has gone to visit the boys now, them i am on cuddle time with Kutura tonight. Tho I am nervous it may not happen, as it depends on the nurse I get on duty. Can't wait till after Monday's meeting to have some consistency in place! My time with the boys is very much a part of their medicine.
And .. I am so in love!!
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Also .. the expression session I had after the cuddle was great! Milk starts as colostrum, then is transitional, then mature. I have been getting mature milk, but the milk I got after cuddles looked more transitional. My body seems to know what it is doing. The nurse I spoke to said she couldn't see the difference, but I asked her to 'humour me' and make sure both boys are drinking that particular milk right now, and my wishes are being respected.
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Another expression session ..
Am sad again .. I rang earlier to arrange KMC with K and was told nurse changeover at 7pm meant I would only get one hour if I went in now. I asked her, so he is 'stable' and ok for a cuddle. Looking at his chart, the nurse said there is no reason I can see for him not to. So I told her I would wait till after changover so I could have a longer sit. After changeover I rang back, and was told that I couldn't cuddle .. grrrrr.
Last night the night nurses did tell me they were under strict instruction from the doc no cuddles till sunday with K. Yet my doc told me that cuddle last night would be organised, and if instruction was so strict, why wasn't the day nurse informed about this? The inconsistency is so unprofesional, not to mention very annoying and compromising the care I wish for my babes. Bring on Monday's meeting to get this care plan in place and written up by their cribs!! Going in to wash and weigh K tonight for 10pm. Am hoping to see a settled lil Moss after our snuggle today too.
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pumping milk - will be aiming for 900mls in a 24 hour cycle. been keeping notes on this.
I haven't even had a lactation consultant (LC) approach me since I have been here yet .. how do other wimmin know what to do who don't have access to the network I do???
am getting 550-650ml currently, and halfway thru week 2
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no parents 'allowed' for handover time, due to reasons of confidentiality. There are 3 nurses assigned to a room, on two babes each. But they help each other with various two person tasks; and those that are care based (rather than medically based) I have been learning. there is also one or two nurses rostered on as 'help' that float from room to room. so there are 6-8 people in the room during changeover, and they go over the events of each baby as a group, one at a time. this process can take 20-45 minutes, but seems it is meant to be half an hour. this happens 2-3 times a day. i understand why they don't parents listening on the details of other's babes. docs rounds are once a day, and go for anywhere from 15mins to an hour in each room.
i was previously offered one hour cuddle with K coz of handover time .. should have taken it! i went thru the wash, weigh, move to fresh crib ordeal with k tonight. the weigh and bath happens every 2nd night, so they recommend kmc on the alternate day as these are high-stimuli activities for them. i totally agree that it is exhausting for these lil ones. however, i don't see mumma-time as an activity, i see me as the incubator these babes have learnt that interaction with humans is exhausting, annoying and often painful, so they have learnt to settle in their cribs. i want my boys to learn to settle with me .. and for this not to be a high stress situation for them (other than the move from crib and back again) .. and u know what? they did settle with me i think the longer kmc is left the harder it would be for them to learn this. even if baby is critical, there should be some kmc on day one or at least two .. as the boys have both been so much more settled since just the one kmc sit with them. it is the noisy environment and over-chatty loud staff that need more control - that overstimulates the babes more than mums! not to mention all the trainee docs and daily obs .. talk about over-handling! anyway, i now have more confidence with my boys and can better read their needs thanks to the cuddles ...
also .. in response .. K is not stable enough yet to walk around with; can;t really walk far with all the cpap gear anyway. cpap is on 7, trialing on 6 at times. when it gets to 5 they will start to try him off it. not that i know what those numbers mean yet (something to do with pressure in the airways) just what we are aiming for
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the doctor and clinical nurse consultant i was to meet with today were both off sick
had a great chat with 'the other' cnc (didn't know there were two), and another doctor.
i guess it was a practice meeting
getting a template emailed to me to write up patient care plan, so i can be better organised for the meeting .. whenever it is!!!
boys are both on increased feeds, sucking EBM on my finger, making eye contact, scanning my face, aware of when I arrive and leave (makes it so hard to leave!) and continuing to put on weight. Kutura is really showing me his personality. Moss is still having trouble keeping his tired eyes focussed on me
more to share .. but will be online later tonight
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i'm exhausted .. they are still stalling!
the meeting yesterday was postponed .. i was told both women called in sick
was told i would be emailed template for patient care plan .. haven't received it
went in for kurura's wash n weigh last night .. (they have 'line changes' on mon,weds, fri nights which is a sterile procedure and i can't go in so i had arranged a time with his nurse that suited) .. so here I am with k .. freshly washed, nurse setting up to weigh him .. k has his cpap hat off and is settled under a towel, making eyes with me and so very very cute .. when a few docs walk in and i am asked to leave the room. the connection i was having with kutura at this time was exactly the reason i was there. i was a 'good girl' and went thru the right protocol to set it up. this is fucked! they are so inconsistent .. the left hand doesn't know what the right hand is doing and there seems to be little communication between the docs team and nurses team .. AND i have no idea why k couldn't be on me with a cuddle after his wash, stupid policy about wash one day cuddle the next .. both him and i were craving it, we would have settled into a lovely sleep together .. he sucks milk off my finger so well, and I believe he would start nuzzling soon with regular KC .. but one cuddle with my son every 2 days is bullshit. put the babies in the crib so they can crank their radio and slam their drawers and talk shit .. grrr
A nurse told me she understands my concern for moss .. but that he is doing well .. he is walking a usual kinda path for one so little. the fact that kutura is doing exceptionally well, and even dubbed a miracle baby by some, is not what we should compare moss of other lil babes too. i did tell a doc yesterday that k made his big turnaround when he had the same nurse 3 nights in a row. i asked if moss could have such contunuity of care for a few days/nights and see if this helps him. being handled by so many diff people causes them stress. if they must be handled, the same hands as much as possible minimises this as they are familiar with them and know what to expect.
kutura had a weak pancreas and has been on insulin .. he is better off it now
there is a heart valve that is open when babe is in utero that closes off before birth. on premie babes this valve is still open. he had a chest scan result come back, and his heart valve is nearly closed - this is great
nothing medical to report on moss .. but he is keeping his feeds down. he does de-sat (drop his oxygen) quite a lot, so in the medico's eyes he is not very stable. i want the opportunity to have him stablise on me!! in discussing this with people we are worlds apart. talk about big brother
feeling sad, tired, emotional, constantly shot down, unheard, lied to. some of the staff have cold attitudes to me. i wish they could understand it is not them i am critisizing, but the current model of care. most of them really are lovely - just trained a certain way and not open to change.
feel like screaming from the top of a mountain ..
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xXXxx
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