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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