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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