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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Friday, April 15, 2011
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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Sunday, April 10, 2011
Pics ~ xX
Some pics that Matt did up :)
Kutura
Moss
But these pics are old-skool now. The boys when on ventilators; but now they are both on cpap!! They are both growing and doing well .. so much to share, but having a bit of a discussion with my breasts about mastitus the last 24 hours. Grrr .. Will get back to you soon xX
Saturday, April 9, 2011
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The Second Week in the NICU
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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..........
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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 ..
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
xXXxx
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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..........
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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!!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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 ..
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
xXXxx
First Week in the NICU - Update Snippits
Day 3 Update
He was my smooth sailor at first, and tasted some of my colostrum and I enjoyed seeing him have a postive oral experience. So we were surprised that Moss had a bit of a hard time yesterday and is recovering from surgery to drain a partially collapsed lung and receive a blood transfusion. I was present for the procedure, and sang to him as he went under and came to. He is now relaxing on high intensity ventilation, mildly sedated and is recovering really well. The docs here are giving the gympie ob (mild and professionally tasteful) shit for not getting the steroid into when I first asked for it. His stats/obs look good.
After Kutura's rough start he is still fighting the ventilator and cranky that it is in his mouth and down his throat. He has been breathing well and it looks like he may come off the ventilator tomorrow and upgrade to c-pap(?) .. where he will be breathing for himself, but have a little help keeping his lungs inflated on the exhale. If all goes well with that he will begin to feed the following day!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Memory from the Birth ..
At around 2am Kutura went purple .. I spoke with the doc (good one from bris) about the ethics of keeping him here. I asked him if he wanted to go on the copter with his brother .. I sang om mani padme hum to him .. I had a christian midwife next to me saying a quiet prayer. I had my top off ready to receive him on my skin should he have chosen to pass. I put my finger in his hand and told him it was up to him .. he took a gasp on his own, his body surged and pinked up and even the doc said she was surprised at his strength! He made his choice and off he went!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
At Bith
Moss 947gms
Kutura 1000gms
On arrival in Brisbane 10 hours later
Moss 949gms
Kutura 950gms
Both heads 25.5cm
Feet are about 6cm long
Hair is dark - black! Eyes are deep water blue. Moss has a kiss curl like his Daddy and Big Sister. Kutura is a lil more like me, and I think his hair may lighten xX
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Moss is recovering well from surgery. He is off the high ventilation, and on the 'normal' one again. His sedation has been weaned thruout the day and is now sleeping heavily, rather than sedated. I hope to reconnect with him tomorrow, I hope he is not in too much pain. I am yearning to bond with him and feeling guilt that we are disconnected, tho I know it can't be helped right now.
I have been doing Kutura's 'cares' regularly and am enjoying the bonding that comes with tending his little body. When I arrived today I told the nurse he had a full nappy and said I would change it. She said he did his cares only 2 hours before, and that I could do it with his next cares in a few hours. I disagreed, I told her he is a very heavy wetter like his big sister .. but he looked so settled, I dropped it and agreed seemed silly to wake him. I went next door to visit Moss, a few minutes later Kutura's nurse came and told me Kutura had wet thru his nappy and needed his bedding changed. She asked me if I could help her change his bedding by
holding my baby!
First I changed his nappy. So fragile to lift up that little body. Blood flow needs to be considered when angling, as where cords are, how they are connected and how they move. Then the nurse lifted him to me and managed to cradle him in my hands, I can see how painful it is to move such a tiny precious thing I cried and he looked me in the eye and it calmed me! I melted! His little body snuggled into my hands, the nurse took photos and changed his bedding. my breasts cried. it hurt so much i couldn't hold him to my skin, aching breasts!! but i was grateful for that early gift.
i then prepared for his cares, wiped each eye, cleaned the mucous from his mouth. it hurts him as he is so sensitive to the cord, i can almost feel the rawness in my own throat, my poor darling! the way he tenses his face. i fixed his nappy then gave him his tiny dummy, to which I added a drop of my milk. his eyes shot open with delight and he sucked. i gave him another drop and our eyes remained connected until he drifted off to sleep.
he did not not another ml of milk to his stomach tho, as the 2ml (1ml per feed) he had yesterday didn't digest, as bile was extracted via the tube to his belly. we will wait a day or two then try again.
both babes had brain scans and results show they have experienced bleeding on the brain
this is caused from a lack of oxygen to the brain. moss would have experienced that when his lung was partially collapsed and kutura during his ordeal when the copter landed upon arrival at brisbane.
cerbral palsey (how is that spelt?) is a possibility for 10% of babes with such bleeding .. so lets send some love to keep them in the 90% .. the bleeding is in the ventricals of the brain (ie the gaps, not the body) .. and that is a good sign. both their little heads have improved shape and reduced circumferance size, which means the bleeding has stopped and the brain is hopefully repairing and healing. we will do another scan later this week.
the nurses took a pic of each of the babies and wrote 'hi bro' so they have each other's pics with them
i have been talking a lot about my ethics around getting them together in the future and am feeling my way thru the more responsive nurses and doctors to help me with that. i have been asked lots of curious questions about eating placentas and i am happy to say there are staff learning from me just as i am learning so much from them!
words can't thank EVERYONE .. friends, family, JBers, staff (most of them) .. still overwhelmed and prone to meltdowns like my daughter!
i will be going to the cityfarm on sunday mornings. that will be my social outing of the week, so would love to meet and chat with locals there, as I did m. comfrey this morning xX
time to express AGAIN ..
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
4/7/2010
Moss is recovering from surgery and they are both on ventilators. they get themselves in quite a tangle with just their own necessities in their crib, so i do understand why they are apart. once their breathing is upgraded to cpap (no tube down throat, but in nose), then i will look at getting them together. i will probably skin-to-skin with one at a time until i gain my confidence to receive both .. and i plan on doing that quickly!! i have found a lovely nurse open to helping me get twin-skin time regularly earlier than most, so will be sussing out her roster when the time comes
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
considering moss was literally airborne .. air-birth as opposed to water-birth comes to mind
at least the knOb dived in and caught him tho .. what sort of midwife stands back like that when they actually are required to be hands on?? that was so weird
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
i have been trying to influence the other mummas in the hospy around what is the expressing room. they call it the dairy .. someone said the lactation consultants came up with that (?) .. we are now calling it the expression room as we have some pretty full on convos in there of course. every story is so different! i have been enjoying looking at the way wimmin are around fear, yet how strong we all are without realising it. milestones and heartache every day .. laughter and tears every day.
My boys are 1 week young today, 28 weeks corrected. Kutura is now keeping his feeds down. He is on 1ml every 6 hours. He is given this directly into his stomach via a tube that is up his nose. After doing his cares (clean each eye, then mouth, then change nappy) I put a little milk on a dummy and drip it into his mouth and give his cheek a gentle stroke. I love the way he opens his eyes at this! Sometimes he takes the dummy, sometimes not. I like the idea of the suckling and feed happening at the same time to help his little system kick in. His head looks good, the brain bleeds he experienced are clearing healing and we are confident all will be well with his next scan in 3 days. I sit for hours with my hands on him singing and chatting to the staff. He loves me being there. Still not in cpap, his oxygen intake is great, but he is still a little slow getting the c02 out. Hopefully tomorrow.
Moss is off his sedation and painkillers, but still not wanting much attention, like his brother is. He like to hold my hand and have me sing to him, but clearly show distress if I place a hand on him. He lung drainage was successful, but his lungs are still healing from damage. I had a great chat with a nurse today who explained it all to me, and I am confident my little fighter can grow his lungs with strenth. His head shape is also looking good following his bleed, but as he is not connecting with me yet the way Kutura is I am yearning him!
There were 2 tubes from the umblicus, one feeding fats, the other used to take blood to do his stats around oxygen/c02/minerals/etc .. these are now in their arms. One has been removed from the naval, the other is still there. Once the other one is out they will be ready for skin to skin. I understand the fear around bleeding from the cord, such is their reasoning for no cuddles till then. Perhaps I will feel differently in time to come.
Expression session complete .. off to hospy.
Love to all
xXXxx
He was my smooth sailor at first, and tasted some of my colostrum and I enjoyed seeing him have a postive oral experience. So we were surprised that Moss had a bit of a hard time yesterday and is recovering from surgery to drain a partially collapsed lung and receive a blood transfusion. I was present for the procedure, and sang to him as he went under and came to. He is now relaxing on high intensity ventilation, mildly sedated and is recovering really well. The docs here are giving the gympie ob (mild and professionally tasteful) shit for not getting the steroid into when I first asked for it. His stats/obs look good.
After Kutura's rough start he is still fighting the ventilator and cranky that it is in his mouth and down his throat. He has been breathing well and it looks like he may come off the ventilator tomorrow and upgrade to c-pap(?) .. where he will be breathing for himself, but have a little help keeping his lungs inflated on the exhale. If all goes well with that he will begin to feed the following day!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Memory from the Birth ..
At around 2am Kutura went purple .. I spoke with the doc (good one from bris) about the ethics of keeping him here. I asked him if he wanted to go on the copter with his brother .. I sang om mani padme hum to him .. I had a christian midwife next to me saying a quiet prayer. I had my top off ready to receive him on my skin should he have chosen to pass. I put my finger in his hand and told him it was up to him .. he took a gasp on his own, his body surged and pinked up and even the doc said she was surprised at his strength! He made his choice and off he went!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
At Bith
Moss 947gms
Kutura 1000gms
On arrival in Brisbane 10 hours later
Moss 949gms
Kutura 950gms
Both heads 25.5cm
Feet are about 6cm long
Hair is dark - black! Eyes are deep water blue. Moss has a kiss curl like his Daddy and Big Sister. Kutura is a lil more like me, and I think his hair may lighten xX
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Moss is recovering well from surgery. He is off the high ventilation, and on the 'normal' one again. His sedation has been weaned thruout the day and is now sleeping heavily, rather than sedated. I hope to reconnect with him tomorrow, I hope he is not in too much pain. I am yearning to bond with him and feeling guilt that we are disconnected, tho I know it can't be helped right now.
I have been doing Kutura's 'cares' regularly and am enjoying the bonding that comes with tending his little body. When I arrived today I told the nurse he had a full nappy and said I would change it. She said he did his cares only 2 hours before, and that I could do it with his next cares in a few hours. I disagreed, I told her he is a very heavy wetter like his big sister .. but he looked so settled, I dropped it and agreed seemed silly to wake him. I went next door to visit Moss, a few minutes later Kutura's nurse came and told me Kutura had wet thru his nappy and needed his bedding changed. She asked me if I could help her change his bedding by
holding my baby!
First I changed his nappy. So fragile to lift up that little body. Blood flow needs to be considered when angling, as where cords are, how they are connected and how they move. Then the nurse lifted him to me and managed to cradle him in my hands, I can see how painful it is to move such a tiny precious thing I cried and he looked me in the eye and it calmed me! I melted! His little body snuggled into my hands, the nurse took photos and changed his bedding. my breasts cried. it hurt so much i couldn't hold him to my skin, aching breasts!! but i was grateful for that early gift.
i then prepared for his cares, wiped each eye, cleaned the mucous from his mouth. it hurts him as he is so sensitive to the cord, i can almost feel the rawness in my own throat, my poor darling! the way he tenses his face. i fixed his nappy then gave him his tiny dummy, to which I added a drop of my milk. his eyes shot open with delight and he sucked. i gave him another drop and our eyes remained connected until he drifted off to sleep.
he did not not another ml of milk to his stomach tho, as the 2ml (1ml per feed) he had yesterday didn't digest, as bile was extracted via the tube to his belly. we will wait a day or two then try again.
both babes had brain scans and results show they have experienced bleeding on the brain
this is caused from a lack of oxygen to the brain. moss would have experienced that when his lung was partially collapsed and kutura during his ordeal when the copter landed upon arrival at brisbane.
cerbral palsey (how is that spelt?) is a possibility for 10% of babes with such bleeding .. so lets send some love to keep them in the 90% .. the bleeding is in the ventricals of the brain (ie the gaps, not the body) .. and that is a good sign. both their little heads have improved shape and reduced circumferance size, which means the bleeding has stopped and the brain is hopefully repairing and healing. we will do another scan later this week.
the nurses took a pic of each of the babies and wrote 'hi bro' so they have each other's pics with them
i have been talking a lot about my ethics around getting them together in the future and am feeling my way thru the more responsive nurses and doctors to help me with that. i have been asked lots of curious questions about eating placentas and i am happy to say there are staff learning from me just as i am learning so much from them!
words can't thank EVERYONE .. friends, family, JBers, staff (most of them) .. still overwhelmed and prone to meltdowns like my daughter!
i will be going to the cityfarm on sunday mornings. that will be my social outing of the week, so would love to meet and chat with locals there, as I did m. comfrey this morning xX
time to express AGAIN ..
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
4/7/2010
Moss is recovering from surgery and they are both on ventilators. they get themselves in quite a tangle with just their own necessities in their crib, so i do understand why they are apart. once their breathing is upgraded to cpap (no tube down throat, but in nose), then i will look at getting them together. i will probably skin-to-skin with one at a time until i gain my confidence to receive both .. and i plan on doing that quickly!! i have found a lovely nurse open to helping me get twin-skin time regularly earlier than most, so will be sussing out her roster when the time comes
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
considering moss was literally airborne .. air-birth as opposed to water-birth comes to mind
at least the knOb dived in and caught him tho .. what sort of midwife stands back like that when they actually are required to be hands on?? that was so weird
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
i have been trying to influence the other mummas in the hospy around what is the expressing room. they call it the dairy .. someone said the lactation consultants came up with that (?) .. we are now calling it the expression room as we have some pretty full on convos in there of course. every story is so different! i have been enjoying looking at the way wimmin are around fear, yet how strong we all are without realising it. milestones and heartache every day .. laughter and tears every day.
My boys are 1 week young today, 28 weeks corrected. Kutura is now keeping his feeds down. He is on 1ml every 6 hours. He is given this directly into his stomach via a tube that is up his nose. After doing his cares (clean each eye, then mouth, then change nappy) I put a little milk on a dummy and drip it into his mouth and give his cheek a gentle stroke. I love the way he opens his eyes at this! Sometimes he takes the dummy, sometimes not. I like the idea of the suckling and feed happening at the same time to help his little system kick in. His head looks good, the brain bleeds he experienced are clearing healing and we are confident all will be well with his next scan in 3 days. I sit for hours with my hands on him singing and chatting to the staff. He loves me being there. Still not in cpap, his oxygen intake is great, but he is still a little slow getting the c02 out. Hopefully tomorrow.
Moss is off his sedation and painkillers, but still not wanting much attention, like his brother is. He like to hold my hand and have me sing to him, but clearly show distress if I place a hand on him. He lung drainage was successful, but his lungs are still healing from damage. I had a great chat with a nurse today who explained it all to me, and I am confident my little fighter can grow his lungs with strenth. His head shape is also looking good following his bleed, but as he is not connecting with me yet the way Kutura is I am yearning him!
There were 2 tubes from the umblicus, one feeding fats, the other used to take blood to do his stats around oxygen/c02/minerals/etc .. these are now in their arms. One has been removed from the naval, the other is still there. Once the other one is out they will be ready for skin to skin. I understand the fear around bleeding from the cord, such is their reasoning for no cuddles till then. Perhaps I will feel differently in time to come.
Expression session complete .. off to hospy.
Love to all
xXXxx
Moss n Kutura's Birth Story
It was time to welcome the third timester! After losing a babe at 23 weeks and another at 22 weeks, it felt significant to honour my body at the approach of 27 weeks this time. A friend had come to stay for a few days from interstate and our gorgeous men had taken the children out for the day so she could surprise me with a hennabelly. She asked me to answer with my instinct, is there one baby or two? Two I said.
What we didn't know is that I would be birthing with the fresh henna just hours after it's completion! I thought I'd lost a bit of plug, but it was the tightenings that had me worried. As they strengthened I decided I would go to the hospital for a few reasons. Firstly, I knew I had a transverse baby. He had being trying to turn himself without success for a week. Secondly, I was suspicious I was carrying twins but wanted an ultrasound to confirm this. (Initially I was hoping my IM would be able to tell me the answer to that question upon her next visit). I also wanted the hormones to hold off the labour and the steroid injection to help with lungs.
The syncronicity of having our friends settled in our home meant it was easy to leave our 4yo daughter to play and slumber with her friends. Although she was playfully hiding under a table when we left, she did sing thru one contraction with me like we had talked about when talking homebirth plans together the previous week.
'Grey area' ethics were not yet flying thru my head .. I was sure I could get to Gympie hospital and come home with a settled uterous and knowledge about my babe/s position. I called a friend, not my hired IM an actual Friend it just happened that she used to work at this hospital as a midwife. I asked her to support me and asked my partner Matt to be my bulldog.
By the time we got to the hospital the contractions were strong and radiation pain in my upper thighs was distressing me. I was pissed off. I felt defied by my body. Why can't I hold my babies in for longer?? Anger. Anger that I was at a hospital, anger at my body. Anger.
We had phoned ahead, and a few contractions later I had made it from the car to a room. Matt and Friend were with me, and thus began the hospital journey! A knOb named Frank didn't seem to be happy if I wasn't on my back. He asked me 4 times if I had any previous scans, and on my forth 'no' I told him he was wasting my time .. he had to help me now or stop telling me what to do. Contractions were 4 mins apart, I told him again and again I need to stop this labour now. He wanted to u/s first. I wanted steroids now! He did the u/s in between contractions, a bit of my glorious henna smudged on the machinery was a treat! He said I had a lot of fluid and one transverse baby that I could not birth vaginally. I saw the screen too. I was scared. I was angry. Transition was approaching, soon I my body would start bearing down on my sideways baby and I feared for us both.
KnOb told me he couldn't do anything to stop the labour unless it was confirmed I actually was in labour with a VE. I told him he's not touching me, swore a bit, and he walked out of the room and had a sulk. Matt followed him to have a man-to-man about how to treat a birthing Goddess. Meanwhile, the midwife on duty witnessed my friend NB do my VE, she said I was fully dialated with bulging waters. She asked me what my instinct was, I said I still feel there could be two, but I saw the u/s screen too.
KnOb and Matt came back in, knOb wants me to read and sign paperwork. I said I consent to a c-sec, but it had to happen fast, I couldn't hold this pressure much longer. KnOb then wanted Matt to sign paperwork without reading it. Matt read and signed.
I had finally got a the shot of steroids I went in there for!
I was being prepped for a c-sec! Friend talking me thru contractions, suck it in, suck it up, breathe it out .. I developed some new breathwork. Strange trying to work against the flow of the contractions. Catheder was in, I was in pain, I was scared. This is fucked. This is not how it is meant to be!
Getting wheeled to theatre. Stupid panicked people all around me. KnOb and Matt's voices getting fiercer with each other. Friend repeating the mantra every 2 mins. Transition brain .. holy fuck .. c-sec .. no .. YES! This will save my transverse baby .. I don't want to bear down on his lil body this way.
At the door to the theatre, Friend and Matt are asked to step aside now. NO! the 3 of us say. Matt argues with knOb to get Friend in, she gets prepped, she coming in. Matt arguing with knOb to get himself in .. knOb is a prick, he has turned this into a personal war, they wonder why we call them knObs. My waters are bulging as big as a tennis ball outside my vagina, my body is bearing down, I'm on my fucking back you arseholes and all I can hear is people arguing above me. I am scared, I am in pain. I scream that I can't so this anymore .. give me the needle, knock me out. I don't care. Transition
As I am wheeled into theatre, Matt left behind, Friend is with me, she whispers words of encouragement in my ear. On my back, anaesitist prepping his needles, I look thru my knees and see 4 or 5 people in front of me, I had no choice, my body let go and my uterus pushed. My waters exploded and I showed all 4 of the bastards. On reflection I laugh at the way they held their hand up to protect their faces from the splash. My baby was airborn for a moment as he shot out of me into the knOb's hands.
Shock. I need to be on my knees. Someone is cutting a pulsing cord, I am trying to get to my knees on a stupid skinny little bed-thingy, 4 people holding me down saying now, Friend saying yes and telling them it will help me. Her hand on my belly. Someone behind me says syntocin, I can birth my own placenta I tell them. Someone is pulling on the cord .. stop pulling on the cord I yell. Noone is touching the cord, they say. I look down and see scissors dangling coldly against my bloody thigh. Can someone hold the scissors for me, they are heavy. I am told that they are not scissors. No help there. Morons. Belly is too hard to be just placenta Friend tells me and a midwife. I feel the second baby engage. This isn't a placenta birthing wriggle tightening. My body is resting and preparing to birth again! I can feel fear and confusion around me. I knew I must birth quickly or they would command my body. I took a deep breath and summoned a contraction to push out my second babe's head. My waters explode! Got you again fuckers! Ow! The catheder stings and hurts. I reach down to stroke my babe's face. I feel this cord across his face, I can feel it pulsing, I can slide a finger under it, I feel ok, his skin is warm. I love him.
Suddenly there are two other hands with mine, they are pushing my hand aside, stretching my labia, hurting my babe's face. I yell out, who's hand is that? get it out or talk to me!! what's going on?? They are flustered with my hand .. my poor baby! Welcomed to the world with 3 fighting hands around his face. Baby I'm so sorry. The next contraction comes and I birth the body. His cord is cut and I look up to see a sceond resus table has appeared next to his brothers.
The babes were born exactly 10 minutes apart. More talk of syntocin, Friend helps me keep them away, I birth both placentas at once just minutes later. I want to see my boys! Get me off this table, let me up, where's my babies??!! 4 people around me trying to stop me moving. Get the cathear out. Get all this crap off me. Let me up. Friend gets them off me, gets me up. Matt is here again! Finally .. honey we have twins! The crazy cranky midwife is trying to mother me. I'm the mother .. fuck off, give me space. Matt gets the crazy cranky medwife off me. I'm hot and feeling cramped and she's trying to blanket me. He says to her that he will put it on me, she huffs and puffs and finally fucks off.
I can see my first baby. He looks me in the eye. He's so lovely and pink. I love you I tell him. I touch his arm. I go to the next baby, he looks fragile. I send him love. Matt and Friend managed to take photos. We are taken to a room.
I have henna all over my belly. Friend's hands are covered with it too. We make jokes about nicotine. I shower and wash it off to reveal and beautiful desgin once again!
We talk of names. Our daughter Bluqi had chosen the name Moss. Which one was Moss? What is another name? I drift away. I have been having dreams about the letter K, but couldn't quite grasp it upon waking. Kutura, I say. Matt and Friend are at the end of my bed, Matt had just asked Friend, what is another word for syncronicity, and I had answered, they explained to me. So Moss and Kutura it is.
The boys were taken for a joy flight by helicopter to the Brisbane Women's Hospital. The transfer team were amazing, as are the people looking after them here. These people seem calm and human and I am quite relieved, to say the least.
Born at 26 weeks and 5 days they have a huge journey ahead of them. I am told term here is deemed 37 weeks for twins, so they have been declared 10 weeks early optimistically, but medically regarded as 13 weeks early (!). One day at a time. I sing to my babies. I pump milk. One day at a time. Keep sending love.
Holy Goddess! I love you Moss. I love you Kutura.
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