Do you ever imagine that you don’t know this life and you’ve entered just a short clip of what your future you will be? You look around and you get clues about what your future entails? I do. Maybe I am more dramatic than most and this isn’t the norm but this blog is a transparent me and so I thought, why not share? Maybe others do the weird things that I do.? Maybe they don’t? Oh well! … So this evening I stopped for a moment and I looked around. My mind pretended I didn’t know this life. I was outside a house, standing on warm, hard pavers. Where am I?, I thought. I looked around for clues. I saw two pink bikes, multiple pairs of toddler shoes, two pairs of pink, flowered swimmers drying in the sun…I have twin girls I thought. Then tears of joy ran down my face. How lucky am I!? And now I live in a house, not an apartment…awesome! Next I continued into the house. I walked past my hungry dogs (whom I am just about to feed) and into the living room. I was now drawn towards a bookshelf and atop it a portrait sketch of a baby in my hand or perhaps, a baby angel. I see his name sketched and I notice his halo. And I think…oh that’s right I lose a precious baby boy…
And when I am not off in a daydream like this, this is what its like…every day. Yet most of the time its not so gentle or gradual. Its every moment of happiness, or every ray of sunshine I absorb…then circled around to the memory…oh, but I lost my baby boy. Its only when you sit down and think about it, that you realise how awfully exhausting this rollercoaster is. Its having a fun night with friends, then noticing the bassinet that they have returned that was supposed to be for your baby boy and you absolutely lose it; Its putting your baby girls to bed for the night and high-fiving your husband, then sitting on the couch and wishing you were nursing your baby boy; Its getting so excited with planning Christmas fun, then remembering that your newborn won’t be snuggled in your arms, nor passed around for cuddles by the Christmas tree; Its lying in bed at night and gazing out the side of your bed, visualising the bassinet and your baby boy that should be cooing next to you. And you wonder… when will I ever experience happiness again, without the almost instant realisation that I lost a child?
I know how blessed I am to have my baby girls. And I do not need any more reminders of this..I never needed to be reminded. This loss is not about my girls. And having them does not make the loss okay.
I also know how lucky I am to have the support I do. Even though friends are close and afar, I have people who try to understand and who show their love most days; this means the world to me. And had I not gone through the heartache that I have, I would not have connected with some amazing people who give me more strength every day.
I have not written in a while. I’ve been dissolving in twin life, uni commitments, grief, moving states, legal meetings for medical negligence, exercising for my mental health, human rights complaints, the maternal inquest, and planning to say goodbye to my beloved current school. I did not plan to write tonight. But it has been on my mind because of a lovely friend. I was recently telling her a twin story and she asked if I wrote about it and encouraged me to. This reminded me that I have neglected my writing and so I plan to get back into it. I guess tonight’s post doesn’t really have a flowing goal or purpose. I apologise for this. But it is a start. A start of beginning to share again. And I do aim for my next post to be much more uplifting. Specifically, I have a ‘Day in a life’ post planned very soon to feature on Growing Our Tribe’s page. I am looking forward to writing more.
Today is the final day of breast feeding week so I thought I’d share a little bit about my breast feeding journey.
With Dahli and India being born at 27 weeks and in NICU and SCU, for a very long time I was not able to try and breastfeed them. They were not strong enough and not ready, plus their CPAP would have gotten in the way anyway!
It was an hour after the girls birth that my midwife came and offered to help me hand express some milk. I was surprised that I was doing this so quickly. And even more surprised that she managed to help me get enough milk out for my girls first feed! (They were fed through a nasal gastric tube). I think it was about 1ml in total. From this lesson on, every three hours, day and night I would express. At first just with my hands, then with the expressing machine as a stimulator before hand expressing, and then solely on the expressing machine. I would set my alarm for every three hours and expressed day and night. At times I did it next to one of the girls in their humidicrib, sometimes downstairs in my hospital room and then at home when I was finally discharged. When I was allowed to hold the girls I would hold one of them for ‘breast cuddles’ to encourage my milk supply and then I would sit there next to them and express afterwards. At home I would flick through the millions of photos and videos of my baby girls to help me make lots of milk. And I made a hell of a lot. It’s amazing what our bodies can do! I was expressing so much milk, litres a day. The hospital had to freeze some and I got to freeze some at home when they couldn’t fit anymore in their freezer.
The girls first breast feeding practice was sucking my milk off a cotton tip. Soooo cute and fascinating. And then at around 31 weeks (1 month old), India was off the CPAP and had her first proper breast feeding practice. She was 1377g this day and it was quite remarkable that she managed a little feed at this stage. I still remember how excited and proud I was. She got quite the surprise with how much milk came out, I remember she threw up on me and herself a few times! 🤣 For a long time we would continue this breast feeding practice as the nurse tube fed her my EBM.
Dahli didn’t get to start practicing breastfeeding until a little while longer (almost 35 weeks) because she she still needed the breathing support. But finally while on high flow, she got her first practice. Dahli latched straight away and then screwed her face up. She was either shocked or unsure of the taste and then she fell asleep on me as I stared at her beautiful face that after almost three months, I could finally see properly. Now both girls were off CPAP and able to practise sucking I was able to start tandem feeding. This was super exciting and a huge moment for me. When I learnt I was having twins this was one of the first things I thought about. The twin feeding pillow was no longer just for cuddles, but for actually feeding my babies!
tandem while girls are tube fed
The tandem feeding journey was filled with joy and anxiety, proud and happy tears and sad, disappointed tears. It had far more unsuccessful experiences than successful and it was heartbreaking. Once the girls were in SCU the focus became on getting them to full feeds so that they could finally graduate and go home. I was determined to breast feed. I would breastfeed them and then top them up with my EBM. It was an intense juggling act made easier when my husband was there. It also brought up lots of feelings of incompetency as nurses had to help feed because tandem was not working and they were on the same schedule. I longed to get them home and focus on breastfeeding in the comfort of our own home. But in hospital I was only allowed to practice with them every alternate feed. And then when we could see that the bottle was the fastest route home, that’s what mattered most.
SCU tandem success!
SCU tandem success!
When we finally got home the juggling act continued but with much less anxiety and stress. On and on for months. I eventually decided to just do breast feeds for bonding and supply purposes because they just couldn’t get a full feed. So I learnt a way to express while bottle feeding them simultaneously. And if one bubba wanted a little settling or mummy time, I’d offer them my breast. One of my fondest memories of this time was having them both on me in the bathtub and them both fighting over the same nipple 🤣
bath time boobie bonding
Eventually the girls weren’t really interested in my breast. They wanted the bottle of EBM and eventually formula top ups when my supply started to run low and not be enough for the girls. A combination of their growing appetite and less time to express.
I expressed until the girls were 9 months old. My machine wasn’t really cutting it any more, my girls were now on solids and my spare time was spent making them solid food! If I tried expressing as I bottle fed them, they would pull out the tubing! And if I tried expressing as they played, their attention span would dwindle…along with my supply. So I weaned my boobies and put the expressing machine in storage….and I burnt my god damn expressing bras! 🤣 From then on the girls were on homemade, delicious solids and organic formula. I was happy that I had gotten them to this stage, although mummy guilt was also very much present.
So that’s my breastfeeding journey! I hoped Reuben to be a more successful breastfeeding story. My supply did actually come in and I was back to expressing again. This colostrum/milk was a gift to the girls from Reuben (which came at a good time as they were very sick). This was an extremely hard and emotional thing to do. I tried to just zone out and not think about what I was doing and why I had to do it. In the end I ended up needing help to make my supply go away and after a few weeks, I got tablets to help stop it.
Everyone’s breastfeeding journey is different and I believe that all mummy’s make the decision that is best for them and their babies. I have moved on from the sadness and guilt I felt from my unexpected breastfeeding experience. I now know that I was a NICU mummy rockstar and I did absolutely everything I could do to get my bubba’s their mummy’s milk (including the multiple batches of lactation cookies, nighttime googling of lactation foods (hello oats!), many cups of lactation tea and finally motilium to help boost supply!).
I was asked recently if I have experienced any joy since Reuben’s passing. I was a little confused by the question but it had quite a simple answer: yes. And then the question got me thinking, perhaps there are people who go through similar trauma and loss and for a very long time, they will not experience real joy. But me, I receive joy every day. At first the joy came with guilt. But now most of the time I am able to be present in the joy and not feel bad about it. The joy I am of course talking about is my precious, little warrior princesses Dahli and India. And I think it helpful and the perfect time to write a post about the joy they have been bringing me daily.
We are so grateful everyday to have been blessed with twins. It truely is double the love.
Its double the giggles, double the smiles, double the milestones, double the poo…double everything really and it is absolutely amazing. I feel that I was destined for this role. It feels natural, it is challenging at times but it is all that I know and I love it every single day. India and Dahli are now 18 months old (15 months corrected). This corrected business means that developmentally, this is where they are. I am not completely sure, but I think by the time they are around three, we can let the whole ‘corrected thing’ go a little.
So lately, these little girls have been making us laugh and smile and really been holding our whole world together. Let’s talk about some of these things that make me feel so grateful and happy every day.
Twin talk really started when the girls were in NICU. I remember feeling so proud yet devastatingly disappointed and upset that the nurses heard it first. One night the girls began calling out and responding to each other in their humicribs from opposite sides of their room. The nurses were telling me how cute and yet how naughty they were chatting all night long. Hehe. Such cheeky girls from the very beginning! It wasn’t long though until I heard it for myself. The video below shows one of my twin cuddles with the girls where they sound like little lambs chatting away. Total heart melters.
Today their twin talk has changed a lot. No longer do they speak in their little lamb prem voices, but they babble expressively in an undecipherable language. Usually one takes the lead and talks the most and the other responds here and there. A few days ago, India was sharing her sultanas with Dahli and telling her to say ‘ta’. Tonight in the bath they were both cuddling their bubbas and India let hers go ‘bubba’?! Dahli found India’s bubba and kindly gave it back to her. Sometimes I look at them having their conversations in disbelief. When did they get so clever?! I have been trying to get their conversations on video for a while now but they stop as soon as I try! So I did my best.
So I already told a little story above about India sharing her sultanas and there are a quite a few other sharing moments. They often like to pass food to one another in their highchairs or steal from one another trays. Haha. Apart from food, the girls have security bunnies and security lambies. Lately if Dahli has been getting upset, India has found her dummy and given it to her and also given her the lambie or bunny that she was holding. Soooo cute! One time she instantly got upset and wanted her bunny back though! Most of the time though, the girls don’t like to share. India is the boss at the moment and she wants everything. Dahli is adapting and beginning to not get bothered if India takes her toys…but her tolerance depends on how tired she is.
As the girls were born so premature, I had in my mind that they would walk at 15 months corrected. And guess what! I was right!! The anxiety has always been there about milestones-smiling, rolling, sitting, crawling…would they ever get there? And if so, when?? Walking seems like for now, the final milestone and they have stood up to the ‘statistics’, toddling their way into a whole new phase, completely unaware of the trauma they experienced in the first few months of their lives and oblivious to the fact that they are mummy and daddy’s amazing little miracles…suddenly getting too big too fast! I could just sit and watch them toddle around all day, it still takes my breath away the pride I feel.
India’s joy when Dahli came home from hospital..and there were balloons!
Dahli’s warrior strength-smashing her head through her drum!
Kissing and cuddling me and each other
Oh my gosh this has to be one of the best things about twins. Double the affection! Dahli and India can be so kind to each other. Cuddling and kissing and laying on one another. At the moment they cuddle and kiss on cue…its unbelievably cute! And then at other times one tries to ride the other without permission which of course ends in screaming and mummy and daddy trying not to laugh. The first time I ever showed the girls Reuben’s little urn, they both kissed it. So sweet and in-tune. From that day, each time I put the girls to bed I say goodnight to the girls and to Reuben and they all get a little kiss (at the moment Reuben’s urn is on a little shelf in the girl’s room so that he can be with his sisters). Sometimes I get his urn down, and without fail India always goes in to kiss him.
The girls were never really cuddly, loving babies when they were littler. I always wondered if its because they spent their first three months of their lives in an isolette or hospital cot, away from one another and only having one or two long cuddles a day. It could have been that or perhaps just their personalities. It made me sad though that when they got wriggly they wouldn’t want to have many cuddles. But literally, since the day Reuben was born they have been the most cuddly babies ever. They always want me and are always up for a cuddle, snuggle or kiss. It is absolute bliss.
Already we are having to be careful of what we say because we have double the chance of being mimicked. Its funny the things the girls start to say that we don’t even realise we must say a lot. India’s favourite is ‘uh oh’! At the moment. And the other day Dahli actually mimicked daddy’s ‘f*#! that!’ Haha. I feel like they are trying to show each other how clever they are with their words at the moment.
This one is hilarious. The girls absolutely love our dogs Yogi (happy and energetic 5 year old boarder collie) and Bongo (old and cranky 13 Year old Maltese Poodle). They love to mimic them, pat them, chase them and having Yogi drag them along by their socks! The girls go under their highchairs after they have eaten and help eat up the scraps they dropped with the doggies. They also like to get down on their tummies and pick the food up from the floor in their mouths just like their big brothers. Hehehe. Great for the immunity no doubt. And a favourite toy when playing outside is the dog bowls (I know…disgusting but these girls can just be too quick for me!). They quite like to clang them together and to sit in them (their little bottoms sit quite perfectly inside the bowls..it actually looks like they are trying to go potty!). I look forward to watching their doggy bonds continuing to grow.
My baby girls love to come and sit with me when I do my makeup. They pull everything out of my makeup bag and put it all back in. Although yesterday I had taken my ugg boots off and they managed to put most of the contents in them which I hadn’t realised until they were napping and I tried to put my uggs on. Sometimes I put a little lip gloss on them and they get so serious about it, watching as I do their sister and leaning forward ready for their lips to be painted too. hehe.
These little, big things and so many more twin antics are my daily dose of joy. But grief is weird. It is always there, it never goes away. Its like this constant bubble that you are living inside from which you do your best to live, to love, to laugh, to carry on with life. All the while knowing that as shit as this grief bubble is; as much as you wish everyday that you could wake up from this nightmare and bring your baby back, You are still so blessed, you are still so loved and you are a god damn, freaking Warrior Queen.
I’m not okay. I’ve never been so not okay in my life. Once upon a long time ago my life was so simple. But everyday of my adult life I had honestly been so appreciative of all that I had. Of the places I went, the beautiful people I met and the amazing experiences I was given.
Today though, I feel that in a past life I must have been a god awful, evil bitch. Simple was a lifetime ago. Woe is me. Although I still realise I am so blessed (hello gorgeous Dahli and India and my amazing husband Luke), I too feel so broken, so numb, so incomplete.
Before I lost our baby boy Reuben Luke, I was in the middle of a tongue in cheek blog post about being pregnant again with 15 month old twins. The reactions I was getting (mostly laughing in my face), and the passable bump as most people thought I was just still fat from having the girls. How ridiculous that these were my thoughts when in a breath, it could all be taken away.
How crazy it is to think how happy and complete I felt just moments before this whirlwind began. We had two gorgeous, miracle bubbas and another on the way! One minute I was a healthy and happy mummy who had a healthy, happy baby growing in my tummy. And the next minute, my body let him go.
I won’t lie, I was a bit scared about having another with two babies already. But I wanted Reuben so bad. I had painted his future. I had visualized his homecoming and the days, weeks, months, years ahead of us. He was to be a normal, healthy, full-term pregnancy. I was already seeing him next to my bed in his Moses basket. I had seen him playing with our baby girls and had been planning how to teach Dahli and India to be caring and gentle with him. I had also already planned him to be my successful breastfeeding journey. We were so close, yet so far from when we should have met him. A million what ifs, a million tears, a world much sadder without our baby Reuben.
I usually try to have a positive, final conclusion to my blog posts. I don’t have the brain for this right now. I’m learning to just be with my grief. To not rush it. The triggers and waves of emotions will and do come unexpectedly. For the moment I am not okay, and that is okay. I am though doing my best to be strong for my baby girls. My smart, crazy, beautiful twins who aren’t silly. They know mummy is hurting. They know something is up. So while I am not okay and it is okay, I am thoroughly enjoying lost of cuddles with my sweet, sweet baby girls.
Please reach out if you have/are experiencing something similar. I have joined yet another family. Although not a family I had ever dreamed of being a part of. Us Mummas to angels are the only ones that understand. And together, we can support each other through the dark times. I don’t know how, but I know that we will.
And in the meantime, I am off to Fiji with my family to escape and try and heal together.
I love you so much baby Reuben Luke and I am so so sorry.
So last you heard I was to be the first person running the Australian Running Festival’s half marathon with a pram (twins included) and training was going wonderfully. The girls loved their awesome running pram (and still do) and they were on their best behaviour on all our runs (still are). However, our campaign has changed just a little.
We are still aiming to raise $3000 to purchase the much needed Neopuff machines for The Canberra Hospital’s NICU (so please get on that already if you haven’t and donate!). The only difference is that just over 6 weeks ago now (hence the silence) we got a huge surprise when we found out that we are expecting baby number 3 (another blog post to come on this soon). And of course it is Dr’s orders that I do not run this race. Thankfully my amazing husband is stepping up and will be running the event with the girls while I cheer them on at the sideline.
There are only 13 days left until this big day! Please please please go and fund us. If everyone that has viewed our posts so far had only donated $1 we would already almost have reached our goal of $3000. Honestly, any amount will be greatly appreciated and will go towards saving precious baby’s lives just like Dahli and India.
Thank you so much to all who have donated so far!
I know we have missed a lot of advertising time for this event while we waited until we were at least 12 weeks (13+1 today) so be prepared to be reminded daily that we would love your support and generosity with any amount of a donation!
In case you missed the memo, we are running the Australian Running Festival Half Marathon on April 14th. We are doing this to raise awareness about premature birth and funds for the Neonatal Intensive Care Foundation (see previous blog for more info or go to our pagehttps://www.gofundme.com/running-4-NICU 🙂
I am posting daily on our insta (double_the_luv) and for our blog, my aim is to try and do a recap at the end of each training week up until the half marathon on April 14th. So here is Week 1….
Our little Warrior Princesses turned 1! It was a huge, emotional few days with a birthday party on Saturday, Christening on Sunday and the girls actual Birthday on Monday. We had friends and family travel a long way to celebrate our precious girls as well as friends who live locally. Of course we had a Warrior Princess theme! The girls were absolutely spoilt and we enjoyed time in the sunshine and in the pool. Thank you to everyone who came. The girls had a wonderful time 🙂
1st Birthday Party
Day 1 of training
Our training kicked off on Monday, the girls actual birthday. Of course we had our morning snuggles and the girls had their 6:45am bottle then we headed off for our 5km ‘easy run’. The girls were happy and settled the whole time and even enjoyed a nap. 🙂
When we got back I attempted a sweaty group selfie and then cooked the girls a green pancake stack and sang happy birthday. It was just us girls because poor Baby Daddy had to work.
Day 2 of training
Tuesday is the training day I dread. Intervals! This morning we did a 2km warm up, 8 x 60 second sprints (well as hard as I can go for 60 secs), with 60 sec rests and then a 2km cool down. Last week I did 6×60 sec sprints and felt like I was going to die! But this time, I felt that I wasn’t as exhausted so I think I am improving!
Day 3 of Training
Rest day! This morning I attempted some Yoga while the girls played. They lasted 15 mins and then we went for a walk. We played lots and the girls fussed a lot (they have a little cold) and we also had a little dip in our unicorn pool.
we are 1!
Day 4 of Training
This morning I was supposed to do a 2km warm up and 2 km cool down with 2x 2km race pace (3 minute rest in between). I changed it up a bit though so the girls wouldn’t fall asleep because we were going to buy a pram after their morning nap so a pram sleep was a no go! We just did 1km warm up and 1.5 cool down with the 2x 2km race pace and then we had another little run when we went to try the pram out.
Planned to perfection, the girls napped beautifully after their breakfast and we went to purchase BOB! This pram is huge! But it is a proper running pram, feels great and I am so excited that we can train and run the event with it!
Day 5 of training
Just an ‘easy 5km’ this morning in our new truck! We had a little stop off at the shops. So glad our local grocery store has extra wide isles for our sweet ride.
This brings me to the end of week 1 recap! So far we have raised $690 which is fantastic!!! We have however, reached over 2000 people and I can’t help but think if each of these people had donated just $1 we would already almost be at our target! Please help us. Donate. Share our story. Cheer us on!
The Neonatal Intensive Care Unit is a place that no one ever wants to visit or no baby ever wants to call home. Even so, this place is where miracles happen. Here, warriors fight the fight of their lives and their superheroes work their magic. It is a place of uncertainty, isolation, grief, exhaustion, guilt, longing, and loss. Yet also a place of wonder, hope, joy, gratitude, life, love, pride, strength and humility. Although we prayed for the day we could leave NICU with our babies, we also have the upmost respect and gratitude for the world of NICU. Before our babies, we were unaware. But now we are so aware. We know that if it was not for the skills, expertise and resources available to us and our girls in NICU, then our story would have ended in complete and utter heartbreak.
I have talked a lot to my husband about how we could possible give back, after our time spent in NICU. I wanted to do something that would hopefully turn heads and raise awareness while also raising much needed funds for the NICU in Canberra. One day he suggested that I run a half marathon with the girls in tow and raise funds for NICU.
So, as our beautiful girls are about to turn 1 (9 months corrected), we have started to train in preparation to run the half marathon in the Australian Running festival to raise awareness about premature birth and funds for The Newborn Intensive Care Foundation. I will be pushing the girls the whole way who will then be 15months old (12 months corrected). We have been given a special exemption to run with our twin pram and will be the very first pram in this event! We run on the 14th of April, which is just 5 days before the day that the girls were supposed to be born.
A bit about our charity:
The Newborn Intensive Care Foundation is a local charity that raises money for medical equipment, research and nurse education to help give the ACT and Southern NSW’s critically ill newborn babies, the best chance to lead healthy, normal lives. During our time in hospital I was not aware of the amazing work they have done but after our girls graduated NICU and Special Care, I found their website and all the wonderful things they have been able to achieve.
This foundation purchased a Nava ventilator, which pretty much saved little Dahli’s life (we have joked that we might give her the middle name Nava). Things were not looking good until this amazing technology came along. And not only do they raise money for equipment and education but their funding helped me to provide breast milk to my babies. They purchased the brilliant breast pumps and funded a trial for a dedicated lactation consultant for the NICU which was successful- and this amazing lady is still there!
Currently, NICU needs 14 Neopuff machines with each one costing $1,500. Neopuffs are resuscitation devices used to provide breathing support if a baby stops breathing or has an apnoea (pause in breathing associated with prematurity). These devices provide blended air/oxygen and an inspiratory pressure and end expiratory pressure. We are hoping to raise enough funds to purchase two of these.
If you would like to see more of the amazing work this foundation does, you can check out: https://newborn.org.au
From the very beginning our warrior princesses Dahli and India had a fight to live and without the incredible advances in neonatal technology we would not have our beautiful twins brightening our life every day.
We race on Sunday 14th April (feel free so come and cheer us on!) and we hope that we can raise $3000 to donate to the Newborn Intensive Care Foundation so we can give back in whatever small way possible.
If you would like to follow our journey, training, and life after NICU, please keep reading our blog: https://doubletheluv.com
As World Prematurity Day draws to a close across the globe, I nervously publish the second part to this poignant and honest post.
Our identical twin girls were born on 21st January, 2018 at just 27+3 weeks. They were both 35.5cm long, Dahli weighing 925g and India 890g. I’d like to do my best at describing some of our time in NICU. I don’t know that I have all the words to convey the raw journey that it was. But I hope to shed a little light. Perhaps this small insight may help to prepare someone just a touch for the journey that they, or someone they love may one day have. Of course all NICU journeys are different and this is just part of my experience.
My first visit to NICU was shortly after my emergency Cesaerean. Once the wardsman was happy that I had feeling back in the lower half of my body, they wheeled me up in my bed to meet my girls. I remember feeling so excited but also a little hollow inside. We got to the door…I was ready…and then we were turned away. They were not ready for us yet and still floaty from medication I just smiled sweetly; I did not really mind that I had to wait longer. I felt like they were not really mine anyway and the doctors and nurses needed to be their protection at this time.
Later that afternoon, they were ready for us to visit and so I was wheeled up in my bed once more. It felt so surreal. I was still floating and running on adrenaline. I could not wait to meet them. They opened the heavy door and wheeled me in awkwardly. There were two humidi cribs at opposite sides of a largeish, sterile room. I think it was Dahli that I met first, to the left side of the room. They wheeled my bed right up against it, but I couldn’t see. They adjusted the height of Dahli’s humidi crib but I couldn’t lift my body so I could barely see a thing. She was inside a perspex box, in a nest and I couldn’t see over the edge. I think I caught sight of a leg and maybe an arm but my body was so heavy, I tried so hard and felt that I let her down. I wasn’t able to see her the way I needed to see her.
It was then time to be wheeled over to India, my husband recorded this memory on my phone. The exact same thing happened; I couldn’t see her. We had someone take photos of my husband and I next to the thick perspex cribs. Our first family photo, well not exactly (one baby at a time) and you couldn’t even see our little girls. I didn’t let myself cry. Instead I asked my husband to take photos of the girls for me and when back in my room, I was able to look at them (silently disappointed at my husbands photography skills). Tiny, red gummy bears. Eyes closed. Paper-thin skin. Not an ounce of fat. So fragile and weak. But all I saw was perfection. They were here and they were mine. I was ecstatic. The thought that they may not make it never entered my mind. I wouldn’t let it. I was happy and we had no idea what the journey ahead would involve.
That day I also started a new hobby…expressing. Just an hour after the girls birth, my nurse came and taught me how to hand express, collecting with a syringe. This was my job. I remember telling my husband that it was my new favourite thing to do. My milk was sent up every hour. I was nourishing and protecting my babies in the only way I could. My expressing machine was my new best friend.
The following day after practically no sleep due to regular meds being pumped through me and expressing every couple of hours, we were allowed to go up again to see our babies. My husband wheeled me up in a wheelchair. And this this time the lights were on…physically, mentally, emotionally…
I stood up like a frail old lady, keeping my chair behind me incase I fell. And there was Dahli, protected inside her little perspex box. Oh my heart as I peeped through. I felt torn. Torn because I couldn’t just reach out and grab her and torn also because I needed to see India at the same time, but I couldn’t. I just had to be patient. Dahli first and then India.
This time I saw them I noticed all the wires and cords. I saw the bulky CPAP strapped on with their tiny little genie hat. I heard the alarms, the beeping, the bubbling. These beeps and alarms I would grow to understand (and hear all night long in my sleep). And the bubbles, well they were eerie and made me anxious every time they stopped. Bubbles meant my girls were breathing and the air was helping to open their lungs.
I remember meeting the nurses. The nurses who were my heroes. Who even though they did their absolute best to make me feel like a parent, it still didn’t feel like my babies were mine. In fact, it felt like they had been stolen. I missed my whole final trimester of pregnancy and for now my babies were theirs. Weirdly, I was okay with that. These heroes were keeping my babies alive. They were who my girls needed most. For now I would look on with pride and worry as my girls fought. I would touch and hold them whenever I could. I would pray. I would sing and read to them. I would write in both their journals every day. And I would continue to pump my heart out to provide them with my magic milk. On this note, I also remember the encouraging lactation consultant and the kind words from doctors and nurses about my expressing efforts. This meant so much to me. It helped me feel more a part in my babies lives.
Twice a day we helped with the girl’s ‘cares’. This meant changing their nappies, giving a head and ears massage as the nurses changed the CPAP, helping administer oral drops, gently wiping under their arms and neck and if we were lucky, holding them up as their nest was changed. Cares was everything. While the CPAP was changed I remember the awful sucking tube that they would thread into the girls noses to suck out any gunk. The tiny little mouse like squeals the girls gave when this happened broke my heart. As we changed our first nappies, I noticed that our babies didn’t have a bum crack like normal newborns, just a hole. They were however, still pretty fantastic at pooing! Cares was the time we could feel a little more connected with our babies. Each day we would notice something new about our little miracles.
Daily the doctors would do their rounds. I would always feel like I was holding my breath until they gave me the day’s news. It wasn’t just one or two doctors. Everytime the team came through, the room was full. I think there were about six or more plus the two nurses allocated to our babies. Although this was overwhelming and scary, it was also reassuring that such a large, professional and compassionate team were taking the absolute best care of our precious baby girls. No news was always good news. And then there were days when they would speak and the room would spin, my ears would ring and I felt the urge to run and hide.
So I have attempted to try and explain our first couple of days in NICU. But I know that my words will never be enough to convey the experience properly. So many new things, so many layers of emotion, so much uncertainty. Feelings of isolation, heart-sinking and heart soaring moments, as well at times of complete hollowness. I never broke. Of course I cried, but not as often as I thought I would. I held myself together on the outside. My girls had no choice but to be strong and so being strong was the least I could do for them. Our mantra was always ‘one day at a time’, and then finally, after 91 days, came the one perfect day: the day that we took our babies out in the sunshine. The day when we buckled them into their fluffy cloud-like seats. The day we blared ‘I’m coming home’ on the car stereo. The day we walked the girls through the front door and introduced them to our confused doggies. The day I felt totally and utterly complete.
In concluding this post, I asked my husband how he would describe the experience as I feel that my words really have failed. His response included the following: I don’t know. It’s hard to explain. Purgatory. Limbo land. It was shit. You don’t know what’s going on. You don’t know if you should be sad or happy. You don’t know if you’re babies are sick. You don’t know if you should continue normal life or if you should be there every day. When you’re not there and you remember that your babies are, you get really sad and just want to be with them… And at the end of our conversation, together we agreed: You just don’t know how to do it.
To all the NICU Parents in the now, in the past, in the future: You’re babies are the strongest people that you will ever have the pleasure of meeting. Have faith. Reach out. And please know that you are not and never will be alone.
Yesterday I was thinking to myself, ‘I really should move past this… it has had a hold of me for too long.. it doesn’t have to be this way anymore.’ But then a day like World Prematurity Day comes around and I remember why it is okay to feel and why it is okay to keep sharing. Because we are not the only family that prematurity has affected, we definitely won’t be the last, and in no way are we the most affected.
Every year, 15 million babies are born premature worldwide. More than one million of these babies die, and many more face serious, lifelong health challenges. Worldwide, one in ten babies are born too early – more than 25,000 each year in Australia alone. Raising awareness of preterm birth is the first step to defeating it (miraclebabies.org.au) and I believe that it can also help to shed light on how common it is and what the experience can be like.
Having a premature baby or babies in my case, is heart wrenching. It’s so frightening, frustrating, isolating and traumatic. It is something that no one should have to go through. NICU (Neonatal Intensive Care Unit) parents have experienced loss in one way or another. In many cases, NICU parents never get to bring their babies home. We were so blessed to bring home two gorgeous baby girls and not a day goes by where I forget how fortunate we are.
In NICU I constantly felt lost. Of course there were many ups and downs in the rollercoaster that is NICU life, but one thing I intrinsically knew, was that I needed to celebrate the mini milestones that most newborns never need to meet. Like when our babies began breathing with less support, when they started to breathe without support, when they opened their eyes, when their tiny little bottoms had just a smidge of fat, when they reached their birth weight, when they reached 1kg, when they went up a nappy size, when they beat an infection, when they wore clothes for the first time, when they turned off the heat in their humicribs, when they went into open cots, when we had our first touch and our first cuddle, when we finally had the first twin cuddle, when they reached full feeds, when they had a line taken out, when they graduated to special care, when they had their first breastfeed practice, when they had their first bottle practice, the list goes on and on. And with our girls, these milestones didn’t happen at the same time because, even from the very beginning, they have been very much their own person.
I know we have had it easier than other premmie families. I know that others do and will struggle more. I also know and understand that when we look at our babies, not only do we see their perfect gorgeous little faces, and their deliciously squiggy bodies. We also see warriors. Warriors who fought the fight of their lives and kicked but. Warriors who stayed strong and resilient, even when their parents found courage difficult and at times, near impossible.
Watching our baby girls fight every day, I would have given anything to see them healthy and happy like all newborn babies deserve to be. These days, when I get frustrated or when the girls have totally exhausted me, I remember how tiny, fragile and helpless they were and how lucky I am to have this crazy twin life! Now that we have our babies home, we have realised that it really doesn’t matter in the grand scheme of things if they have delays or other prematurity related issues. The most important thing is that our children are alive. Whatever it is they need, we will be here to love, nurture and provide. Always. There is no need to be frightened anymore. My babies have given me strength that I never knew I had. We really are the lucky ones.
Being the mother of two extreme prem babies has undoubtedly been the hardest thing that I have ever gone through. In a way though, it has also been an eye opening and amazing experience. I mean, we got to spend an extra three months with our baby girls! And not only have we made our own little family, but we have also joined two others: the multiples family and the NICU family. Families who also know and understand, that even when the days are tough. Life really is a wonderful blessing.
Just over two months after my identical twin girls birth (at 27 weeks), I still couldn’t shake the anger that I had towards the my obstetrician. I couldn’t move past the fact that throughout the time that I was in his care, he was so complacent and treated me as he would a general singleton pregnancy, with low risk. I was so distressed with his and the ultrasound technician’s carelessness that many thoughts would flow through my mind at night. It was relentless, I just could not move on and accept what was. So much was stolen from me. One thing that I always imagined was that I would attend his practice after the birth of my girls with a thank you card and a picture of the girls for his wall, along with a nice bottle of champagne for him as a grateful gesture. Just one of the many unrealistic expectations of my pregnancy.
In attempt to help me grieve, express my concerns and hopefully prevent other mums going throughwhat I was going through, I decided to send him an email. I spent many days writing, editing, rewriting…Until finally I pressed the send button.
It has now been over 6 months since I sent that email and I have not recieved a reply. I guess it is due to legal reasons, as if he were to admit fault, he could get in big trouble, not that I would ever take this any further. Mistakes happen and I know that others have had wonderful experiences with this doctor.
To this day, I am still having great trouble moving on and dealing with this hurt. I have re-read and re-edited my email in hope to continue my healing process, to raise awareness about prematurity, and to encourage other mummy’s to never be afraid to advocate for themselves. I am definitely a lot more forward in this email than I was in the original and I have included pics to help break it up. Get comfortable, it’s a long one.
Thank you for being so kind and supportive throughout my girls birth. During the traumatic time leading up to their birth and the actual procedure I felt reassured and comfortable that you were there. I am extremely grateful that my girls entered the world in safe hands.
But doctor, my girls have been dealt a hand that I believe could have been prevented. The have been dealt a hand that could mean that I won’t ever get to bring them home. They have been brought into the world at a time when they were not ready to live and breathe on their own, at a time when they needed to be inside me, protected and nurtured.
For me, becoming pregnant was a long, physically and emotionally exhausting process and when we found out we were expecting twins, we were over the moon. I did my research and you were recommended to me by two doctors, both informing me that you specialized in twin, and high risk pregnancies. With this being my first pregnancy and it being twins, I of course took this advice and decided to pay to go private as I believed it was the best and safest thing to do for my unborn children and myself. I would pay you thousands to ensure that my babies and myself had the absolute best care.
I always wanted to be the calm, easy, breezy mum in pregnancy and in birth. I was this. And now I know that perhaps it was my downfall.
I trusted you. I trusted you with my life and my unborn twins’ lives and you let me and my babies down. You had a duty of care for myself and my babies. And I do not believe that you did your best to keep me safe and my babies alive.
I was hospitalised at 26+5 weeks and every day I was in hospital and my girls stayed inside, was a blessing. My gorgeous girls were born via emergency c-section at 27+3 weeks. I honestly believe that their extreme prematurity could have been prevented and I wish to explain why. Although it won’t help my girls now, I do hope that this feedback may help families with multiples that come through your practice in the future.
To begin with, at my second appointment with you, I mentioned that my babies were identical twins, because this was what my previous doctor had told me from my 8 week ultrasound. But when you giggled at me and asked me how I knew that, I doubted myself. You had received all of my files, scans and information so I thought, ‘okay, I’ll just shut up and let you do your thing’. But my previous doctor had told me originally that there was in fact one placenta and since the girls birth I have learnt that it is on this first scan that it is the most clear. Your ultrasound technition was unconfident (and boring quite frankly) and she said that she thought (with definite doubt in her voice) there were two placentas. You looked at the results and told me two placentas too, so I trusted this as we continued into our pregnancy. But now I know ALARM BELLS…you should have double checked, triple checked, quadruple checked even! If the first scan said one placenta, wouldn’t you think to look a little closer at the ultrasound? The difference between one and two placentas was the difference between a low-er risk and high risk pregancy. You didn’t listen to me. You didn’t listen to my previous doctor. You condesendingly giggled (at the time I thought your giggle kind and cute, but now I think different as I am slamming my keyboard) and told me two placentas, which meant you did not have to see me regularly. Major boo boo. I only wish I spoke up, advocated for myself and demanded you took a closer look.
As I said, this error meant that I was not given more regular (fortnightly) ultrasounds that I obviously needed. Before I was hospitalized, My last ultrasound was at 22+6 weeks and the next one wasn’t planned until 27 weeks. Had I have had one at 25 weeks I believe that we would have picked something up and prevented the traumatic experience that was my birth and the horrible start to life that my girls have had
Another issue is that I was never informed of the risks of prematurity, the possibility of twin-to-twin transfusion, signs that I should look out for, or the fact that it was very likely that if my girls did come early, that I would have to go to Canberra hospital. I booked with the private hospital which now I understand, was not a good choice as the chances of birthing there with twins was unlikely. I wish I was informed about what NICU and special care is and perhaps even statistics of premature births so I didn’t go into this whole experience completely blind. I was a first time mum. You were my doctor. I needed to know these things even if they were scary. I am a studious person but I had decided not to use Doctor google, after all I had paid for a real-life doctor, that specialised in twins. I trusted you would tell me all that I needed to know.
Furthermore, I have now learnt that I could have been having my ultrasounds at Canberra hospital, where they are very accustomed to multiple births and it is free. I wish I had been informed about this to help save us financial stress and also as they may have picked something up sooner (and been less boring).
At my last ultrasound (22+6 weeks) my girls were both head down and Dahli was so far down that the lady couldn’t get a measurement on her head. First of all I can’t understand why she did not just do an internal to get the measurement (they did this at Canberra hospital when I was first admitted), which would have put our minds at ease as the information that we had to wait for two weeks for over Christmas to be confirmed, showed that her head was extremely small (not even on the scale, small). Also, at the time I thought that being head down and so far down was probably a sign that the girls may have been coming soon, but nothing was said so again, I just trusted and went with it. I feel this was a big mistake.
After this scan I found out that you had looked back on my first scan (from previous doctor) and did in fact see that there was one placenta. Information that was gathered a little too late and yet still, nothing was done until I ended up in hospital bleeding. I also learnt after the birth of my girls that my cervix was not really looked at properly at all. I pressured to have this information at my 6 week postnatal appointment and there was nothing. After the premature birth (with no explanation) of my babies I thought perhaps my cervix was short and maybe that it should have been stitched, but the information was not recorded. Surely my cervix is something that should have been studied over the course of my ultrasounds.
Finally, the couple of times that I suggested to you that we make a birth plan, you giggled and said we would do so closer to the birth. This not only made me feel stupid but also gave me a false sense on security that my girls would go close to term. Of course birth plans can not always be followed, but perhaps this was your chance to go through the what ifs and possible scenarios of twin births, rather than acting chilled and moving on to your next patient.
This rough start to my babies’ lives may affect them for the rest of their lives. It will most definitely stay with me forever and I just can’t seem to shake the feeling that this all could have been prevented. I believe that everything could have been handled with greater care and that I could have been better prepared. I am so unbelievably dissatisfied and disappointed and it is my hope that this feedback is taken on board and that it may help people who are pregnant with multiplies that come through your practice in the future.
Our future is uncertain. The health of our babies is uncertain. The trauma that I have experienced is like nothing I could have ever imagined. I do not wish to cause you hurt. But I do believe that you should know the affect that few complacent, careless mistakes can have.
So there is is. Raw. Uncensored (Okay maybe a little censored). Of course I won’t ever send this re-edited version of my email but already, I feel a little more release.
Please remember to never doubt your mummy instincts. Don’t worry if you feel silly. Actually, if you are made to feel silly, find another doctor because if you don’t advocate for yourself, then who will! You are strong and fearless and you know best.
Our girls Dahli and India are almost 9 months old now (6 months corrected) and are growing stronger and healthier everyday. Looking at them, you would not know that they had such an awful start to life. They are incredible. They are my heroes. They inspire me to be a stronger and better person every single day.