I lost Reuben at 22 weeks. One more week and they would have tried to save him. But at 22 weeks my baby’s definition -insert dr speech marks here – was “not-viable”. I fought for him, but it wasn’t enough. They said they would check his weight and if he was big enough they would try and save him. But it was too late. While waiting for this ultrasound to check his weight, I went in to labour. He was born about 15 minutes after the ultrasound was planned. A million questions go around and around in my head every day. Some far too raw for me to have the strength say, let alone write down. But here are 11. 11 questions that may never be answered. But 11 questions that I will be asking when I finally have my follow up specialist appointment (an appointment I had to chase up by the way. No planned 6 week appointment for me unless I actually pushed for it).
So here are just 11 questions that burn a hole in my heart daily:
Would have Reuben been in pain when he passed away?
I went private with my twins and it was a waste of money as I didn’t get the care I needed and my Dr was complacent and in my eyes, a reason my girls came so premature. So this time I went public. I had learnt that public is where NICU is and all the resources for preterm birth. But when I was admitted this time, there was a lot of waiting around. Waiting for a Dr, waiting for my ultrasound, waiting for my pessaries, waiting for my cannula and antibiotics. Realistically, had I not have had to do all this waiting (ie if I had a private Dr) could have my baby boy survived?
Why was I and my high risk pregnancy referral not taken seriously? Why was I not a part of the high risk program? The program I learnt about after it was too late. Especially as not only was I a ‘high risk’ pregnancy, but I also fell pregnant in under a year after having twins a 27 weeks.
Why did my body let my perfectly healthy baby boy go? Why did I go into preterm labor again?
What were the results to the 10+ blood tests I was tortured for after everything? It’s been 6 weeks and I’ve been told nothing.
Is there something I could have done to have stopped this happening? Or something I might have done that caused it?
Did falling pregnant so soon after the twins have anything to do with why this happened?
Is it safe for me to have another baby?
My drs appointment was changed to a week later: The Thursday after I gave birth. If I had attended this appointment at the original time (the week before), is it possible that you could have seen something? And if so, could we have done something to save my baby boy?
Whatever is wrong with my body, is this something that I could pass on to my girls? Could they have the same problems that I have?
Why did I by some miracle fall pregnant naturally, if it was just going to be taken away from me? (Okay, I won’t ask this one of the drs but I think about it all the time).
These are hard hitting questions. And I know some won’t have answers right now or maybe ever. However, asking these questions is going to be part of my healing journey. It’s going to be extremely hard. But I’m goingto do it. If I don’t, I will regret it. I know none of these questions will ever bring Reuben back but I need to at least try and get some answers. I need to ask these questions along with many others, to help me move forward, to grow stronger and to heal.
I miss you every day Reuben. Sometimes, in a blissful moment, I forget that all of this has happened and you are still here. But then I remember and it breaks my heart all over again. I love you so much.
Writing is also part of my healing process. I write a lot. Some things I share, some things I don’t. I was not sure if I would share this piece. But then I began to think, if there is just the slightest chance that this could help someone else, then why not? People who don’t want to read this, won’t. People that want to or need to, hopefully will. I may never know, but it this could help someone who has gone through, is going through or will go through the trauma, heartbreak and loss that I have. I have had many people thank me for being so open and vulnerable with my journey. And also some other amazing angel mums who have reached out. I haven’t shared everything. Just when the time comes and I feel ready, I have shared parts of my journey and I know already, that I have helped others. I find comfort in this. Helping others also helps the healing process.
Running away to Fiji for a bit was actually my husband’s idea. He is a problem solver and wants so bad to fix what has happened. And although we are both coming to terms with the fact that this can not be fixed, that things will never be the same and we need to grow to accept and live in the new normal, Fiji was just what we needed.
We had many people help us to get to Fiji: financially; support to help us organise it so fast; minding our dogs; helpful advice and even cooking snacks that were perfect for the girls on the plane. We are forever grateful. Thank you.
waiting for our plane
India’s first plane ride
Dahli’s first plane ride
India and Dahli were the movie stars of Fiji. I knew that the Fijians love children, but I didn’t realise just how much! In Australia, maybe every fourth or fifth person stops me when I have the girls asking, “twins?” But in Fiji, it was absolutely everyone. From toddlers to the elderly. Even young men, who is Australia would have no interest in babies! Everywhere it was, “Bula! Twins?” and then the many questions and clucking and cooing that followed. The girls loved it and I think they may have even said Bula themselves. I was trying so hard to teach them! Not only did the Fijian’s love to look and touch and kiss our babies, but they also kept stealing them.
Lovely baby stealers
Plenty of picnics
Nannies are super sweet, amazing with children and really cheap in Fiji! We didn’t plan to use one really but by the second last day, both my husband and I were physically exhausted! Another afternoon of swimming with the girls was not going to be possible for either of us. So we booked a nanny for both of the girls and finally, we got some time to ourselves. We sat by the pool for two hours, had a mocktail and even ate some tacos which we didn’t have to rush and stuff down our throats as the girls pointed and screamed that they wanted them. It was pretty blissful. And we knew the girls were in such safe and loving hands.
India at kids club
Fighting for the slide
Kids club fun
Although beautiful, my gosh Fiji is so expensive! I would say even more so than Australia. I guess because it is a resort area they can charge what they want. I had a local on the plane suggest going on an island tour. But this was going to set us back over $400 and also we couldn’t see how on earth the girls would handle a whole day of island tripping (from experience without twins, we already knew it was exhausting). However, we did go for a stroll one evening by the marina and a local managed to reel me in and suggest a half-day tour that’s perfect for families that we could go on for just $20FJD…there had to be a catch, right? He admitted there was. So fast forward to the following day we hopped on a bus to another resort and sat through a presentation where a lovely man tried to sell us a new amazing ‘time-share’ where we can go anywhere in the world! Twins crawling everywhere, crunching rice crisps and making a hell of a mess of their immaculate presentation room, while we had to answer a few questions and listen to a sales pitch…but I wasn’t having any of it. I just wanted our cruise. So as soon as the chance came up, I said no. No no no, this is not for us. We are spontaneous people. We can’t be tied to this for life. Luke joined in on my ‘no no no parade’ and so the salesman didn’t really know what to do. I think we stayed for about 40 minutes of the 90 minute presentation when I left to change a nappy. Luke finished up with salesman and we left. We explored their resort and then hopped back on the bus. So for sitting through 40 minutes of a sales pitch and having a lovely walk throughout their oasis, we got a $400+ cruise for 20FJD. This cruise included all transfers, food, alcohol/beverages, a finding nemo tour and submarine ride (which we chose not to do) as well as a nanny for the girls. It was absolutely amazing. In my eyes, it was the best day we had. It was my happiest day since we lost baby Reuben.
Our lovely island set up
Twins are sleeping!
Dahli loved the bean bags
Our South Pacific Island Nanny
Time to relax
Babies sleeping in pram!
As lovely as getting away and having some special family time together was, it was also weird. We shouldn’t have been in Fiji. And it was surreal to be there. We should have been at work. The girls having fun at daycare. I should not have been drinking alcohol or many of the foods I ate. And we definitely shouldn’t have been spending all the money as we needed to keep saving for my mum bus and for when we became a family of 5. I kept telling Reuben that I wanted to give Fiji away. I apologised to him that we were in Fiji and promised him that all I ever wanted was him. For his sisters to have a baby brother. For us to be happy at home, awaiting his safe arrival. I dreamt of him and I have since. I hope he stays in my dreams forever.
sunset fish and veg
Riding on daddy
Rainy day pamper session
The girls loved the comfy beds
Relaxing with Daddy
I took lots of photos and videos of our holiday. I want to remember our very first holiday in memory of Reuben. And we plan to do something every year around his birthday (although not as extravagant as Fiji) because we want to honour his memory. We want his sisters to know about him. I am trying my hardest be be strong and live a happy life in honour of Reuben and for our precious baby girls. I remember a quote that resonated with me so much when the girls were in NICU, and even more so now “you don’t know how strong you are until being strong is your only choice”. I don’t know that I am ‘strong’ but in this moment, I am doing my best. Some days my strength is my tears; some days its me getting out of bed; sometimes it me playing and laughing with the girls; some days its making myself eat a healthy meal; sometimes its writing to help me heal; sometimes its being vulnerable; often its pouring all my love into my baby girls and my husband; its admitting that I am not okay and reaching out to others; at times its keeping myself busy with a never ending list of to dos, and some days its catching up with friends. Strength comes in many forms and daily, I am slowly finding mine.
swimming with daddy
hanging on the balcony
dinner on the marina
So thank you Fiji. Although I am finding it extremely hard coming back to the ‘real world’, something has shifted. We are slowly moving forward as much as I wish we could rewind and somehow fix it all. Fiji was special. Just like our precious baby boy. It holds a special place in my heart, somewhere in there along with our guardian angel, Reuben Luke.
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 🙂
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.
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.
I preface this post by saying that I had planned to write a lighthearted dig at Mummy Guilt. But then I started at the beginning of my experience with Mummy Guilt and well, suddenly I just started to go to town, resulting in more of a self indulgent post. So if you are expecting a funny, tongue in cheek post about the guilt that is Mummy Guilt…sorry but this isn’t it!
Mummy guilt is relentless. She is an evil enemy who poses as a friend and doesn’t care for your feelings or about the people you love. Mummy Guilt is a vicious, repetitive monster that is so very hard to leave behind. She is always there, lurking in the shadows. No matter how hard you try or how much love you shower your children with, Mummy Guilt somehow creeps in. And if you are not careful, she can steal from you what should be the most precious, important time in your life.
I met Mummy Guilt before my babies were even earth side, which I am sure is the case for other mummies too. At first it was just little glimpses like, “hi, hello- are you sure you should eat that?” Or “You really should be reading those baby books, all good mums read the baby books”…But boy oh boy, did she ramp it up when I was hospitalised with severe bleeding, a ruptured membrane and a dilated cervix, at 26+5 weeks. Was it that exercise I did? Was it the heat I exposed myself to at the beach? Was it the travelling in the car over Christmas? Was it the rearranging of furniture as I began to nest? Was it that I didn’t question my doctor when I should have? Was it the food I ate? Was it Karma for something I have done in the past? Was it that I have no business being a mother?….. the list went on and on and on. And I hadn’t even met my precious little warrior princesses yet.
On the magical (and traumatic) morning when my gorgeous girls greeted me, fortunately Mummy Guilt didn’t show her face. I was able to enjoy the moment, although it was quite different to anything I ever expected it to be. No matter how tiny and fragile my girls were, at the time all I felt was love and pride for what my husband and I had created. Hearing their cries as they entered the world filled my heart in a way that it has never been filled.
It wasn’t until 2 or 3 days into the NICU (Neonatal Intensive Care Unit) journey, that Mummy Guilt surfaced again. She mostly wanted to judge me for the time I couldn’t be with my girls. For the time I spent away from them. To begin with, I spent this time being closely monitored with an infection and round the clock antibiotics fed through my drip.I also expressed every three hours religiously, in my hospital bed. Oh and even more time away from them- at night, where I selfishly slept and tried to recuperate from the traumatic birth that I had experienced. Mummy Guilt expected me to be by my baby’s bedside twenty-four seven.
When I was finally discharged after 12 days, Mummy Guilt was one chunk of the reason why I cried hysterically the whole car ride home.For the first time, I really did leave my girls; I had to go home. I went home and left two parts of me at hospital. What a horrible, selfish thing to do. Even though Mummy Guilt knew that I had no choice in the matter, she still slept next to me at night. After being discharged, whenever I was a home, I tried to be zen for my own health. Yes I did practice Yoga everyday as the sensible, rational me knew that I needed this so that I did not go insane. Mummy Guilt, on the other hand thought that it was completely unnecessary and selfish. She also told me that the nurses judged me for the time that I was not at the hospital.
Then there was the time when a lovely, sweet nurse could see that I was not coping and that I had family visiting, so she suggested I spend an afternoon at home with them. I listened and I did just this, even though Mummy Guilt was yelling in my ear that I should always be with my babies. Well, Mummy Guilt won this one. Staying at home for my own mental health meant that I missed out on Daddy’s first cuddle and not just that, but also the first twin cuddle. This was something that broke me completely and required lots of help and time to work through the awful guilt and disappointment.
Mummy Guilt was already so present in my life and I had not yet even had the experience of taking my babies home. For the 91 days that my babies spent in hospital, she always had plenty more material to drown me in guilt: morning, day and night. I did not however let her ruin my time with my babies. I was fortunately able to cast her aside most of the time and focus on my precious baby girls.
And now comes the reason why I decided to write this post. I tried my absolute hardest to breastfeed my twins. I was there at the hospital, every day, giving my babies breast feeding practice every alternate feed, as they received my expressed breast milk through their nasal gastric tubes. Then when they were moved to special care and the focus was on gaining weight, it became a cycle of learning the bottle, having tube feeds and practising on the breast. They needed to be confident on the bottle and no longer need tube feeds to come home. So once they could feed without a tube and weighed over 3kg, we were allowed to take our little miracles home.
“Your twins will, no they must be exclusively breast fed within the first couple of weeks they are home”, Mummy Guilt told me. Well..sorry to disappoint, but this didn’t happen. My girls were never able to get a full feed from the breast. It is only recently I gave up (although we do still do some ‘breast feeds’ just for bonding). Mummy Guilt had me lose lots of sleep over this. Even though I spend hours expressing litres of milk, Mummy Guilt expected me to breast feed my babies until they turned one. But I have been able to let this go and move on with the new plan. I now always express whilst simultaneously feeding the twins my milk from a bottle.
And this brings me to today and the current argument I am having with Mummy Guilt. My bubs are now almost 8 months old and so she has me questioning, for how long do I continue this exhausting task that is expressing? My supply dropped with mastitis (this was hell) and I have had to supplement with some formula, which I know people judge and Mummy guilt makes sure I know this. It is her job to listen to the nonsense that people tell me about breast being best, and how I really should see another lactation consultant, and that formula can cause cancer (hello! I was formula fed, and I happen to think I turned out quite wonderfully!). Mummy Guilt doesn’t listen to the kind, positive things that people say, she only cares about the negative. She has absolutely no idea and no place in our lives and yet, here she is clouding my decision making and just filling me with sadness for even thinking about ceasing my milk making days.
Reading over this post, I hadn’t realised how present Mummy Guilt has been in my parenting journey so far. I was so focused on the tough decision that I have to make about feeding my babies that I had forgotten all the unkind things Mummy Guilt has already said to me in the past. I didn’t realise that I could dig up so much dirt on Mummy Guilt, but gosh has it helped me feel better!
As I reflect, I can see clearly that I don’t have time for Mummy Guilt; Mummy Guilt doesn’t know best. In fact, she doesn’t have a clue what she is talking about. Everybody’s parenting journey is different and the choices we make don’t need judgement. My introduction into motherhood was not ideal and I know that the most important thing I can do, is to give my babies love.
I believe that one day when I tell my gorgeous warrior princesses the story of their first year of their lives, they will be so proud and grateful that I was chosen to be their mummy.
So I choose to cast Mummy Guilt aside. I know I can do this, because I have done it before. I will do my absolute best to keep her away as I continue to enjoy the special moments with my baby girls every day. I don’t need to make any decisions immediately, but when I do decide to stop expressing (or make any other motherhood decisions, for that matter) it won’t be Mummy Guilt that makes the decision for me. She has no place in my life and nor should she.
Love to all mummies and may you have the strength tame your Mummy Guilt too! Because, You are amazing.
Becoming a twin mummy has definitely been the hugest, most rewarding learning curve I have ever experienced. I wanted to be a mum so much for so long. I thought that I was prepared as could be and then the universe threw me twins! Everyday I definitely learn something new and along with the following 15 lessons, the overarching theme of twin mummy life, is that you have to laugh at everything. I think having a sense of humour and understanding the hilarity that is twins, gets you through everyday and makes the journey all the more enjoyable. Here are 15 things that being a twin mum has taught me (so far):
If one of your babies is going to have a poo explosion, so will the other. Most likely at the same time, and if not, definitely straight after you have just changed the first nappy. Often they decide to do their number twos while I am feeding and hooked up to the expressing machine and then won’t take their bottle until I change them! Quite the challenge!
All of my four limbs can and will be used simultaneously all day long! Example 1: Right arm: bottle; Left arm: bottle; Right and left leg: cradling baby and/ or bouncy-bouncy burp (whilst boobies being pumped!). Example 2: Left and right leg: cradling baby and/or bouncy-bouncy burp; trunk and chin/shoulder: position second baby here to burp and/or soothe; both hands: patting backs to a tune as I try to keep bubs calm and bring up their burp/s! (pumping here too!) Example 3: Right knee: baby; Left knee/upper leg: baby; right and left hands: entertaining with toys. Example 4: Right knee: baby; Left knee: baby; Right and left hands: baby piano. Example 5: Both arms hold baby and dummy in baby’s mouth; both feet jingle play gym for second baby. Example 6: Both feet: bouncing bouncers; both hands: eating lunch and entertaining babies. I think you get the picture, there are quite a few more variations!
One smile makes me melt, double smiles makes my heart explode! And catching them on camera- much more difficult than you think. Double smiles always end with a mummy celebration (insert delirious mummy whooping and nonsense lyric improvised song here).
When I feed one baby, I absolutely must feed the other at the same time! Getting off schedule is never an option in our household! Of course, I make the rules and the girls do not always follow suit!
Double cots make for a fun, simple exercise circuit or stretching station while waiting for bubs to drift off to sleep. Who knew!?
Twin conversation is a real thing and definitely the cutest thing I have ever heard. I think one day I may feel a little left out, but for now, listening to my babies chat to one another as they drift off to sleep makes me a very happy, proud mumma!
Double screams hurt my ears! Especially when Bub’s heads are next to my ears as I desperately try to burp both.
Feeding two babies has turned me into a midnight, mummy monster snacker! I am so hungry. All. Of. The. Time!
Double morning snuggles are the best part of my day!
I actually do like dressing the girls the same, even though I thought I wouldn’t. Its easier and cuter. Oh and I love love love baby bows!
It is important to get out of the house every single day!
Twins are soooooooooo much fun!
Travelling with twins is exhausting but well worth it!
My husband is nothing short of amazing.
How powerful, and all encompassing love can be…doubled!
I think I could probably add to this list daily, so expect another post like this soon!
Tonight I was mindfully going through our bedtime routine, listening and enthusiastically singing along to Spotify Acoustic covers, as I changed Dahli into her Pyjamas. India was changed and happily wriggling on her lambswool mat and Dahli was on the change table, her brilliant-blue eyes grinning happily into mine as I sang and dressed her. Soon the song pace slowed and the next artist began to play the familiar tune, Can’t Help Falling in Love.
While we were in NICU, I would hold and sing to my babies for hours, and this was one of the few songs that for some reason, always came out. As it began to play tonight, suddenly Dahli was no longer a 5.2kg happy, chubby baby. She became the tiny, frail, squeaky baby in her humicrib back in NICU. Her body fitted with cannulas on three limbs and a monitor on the fourth, as I changed her micro nappy over her sore, swollen abdomen. She was sick and I was scared. Along with this vivid flashback, inevitably came a wave of emotion that rather quickly, brought me back to present. There she was again. My chubby, little warrior. My baby girl who in the first few weeks of her life, exhibited more strength and determination than I think I ever will in my lifetime. I took a deep breath, wiped my tears and asked myself, How did I get so lucky? What did I do to deserve such an angel, and not just one, but two.
These moments are common. A simple trigger like a song, a loud beep (screaming monitors), a picture, a smell; I become totally overwhelmed as it takes me straight back to NICU. Not just in the day, but often in my dreams (hello dream jaw clenching again. I told my dentist I was over that habit!). These moments, although insanely emotional, always end with an astounding sense of pride and gratitude for what we have. I regularly remember that some parents aren’t so lucky. Some babies continue their fight for much, much longer than our precious girls and other warriors don’t win their fight; they grow their angel wings.
I know I will never forget how fortunate we are. Not a day goes by where I don’t remember how fragile life can be. Not a day goes by where I don’t think about the families currently in NICU with their bubs too eager to meet the world, battling to stay positive and sane; to hold their world together. Not a day goes by where I don’t remember the nurses and doctors who cared for my babies at a time when I couldn’t. Not a day goes by that I don’t reflect on the fact that our babies were saved. Not a day goes by where I don’t think, our babies are so special and so absolutely amazing.
I hold my girls just that little bit tighter every day. I kiss them maybe a little too obsessively. I constantly remind them how wonderful they are. I play, play, play until I have nothing left give, on repeat, all day long. I stare at my babies as they sleep with a deep, overwhelming sense of pride. I sneak back into their room a few more times at night whilst my husband is nagging me to get to bed (daddy’s shift). I scroll through their pictures while I lay in bed, too excited to sleep because I have two strong, gorgeous, lovable twins.
Maybe as a parent without the experience of NICU, I still would be doing the exact same thing. But as a NICU mum, there are always underlying thought processes that help you see the blessing of life a little clearer. The simple things become so much more because you are so, acutely aware that in a moment, life can change; life is so fragile; nothing is ever permanent.
In NICU the mantra was always, ‘One day at a time’. Today that continues to be a useful mantra, although it’s more ‘one moment at a time’ as the life of twins gets busier and busier! Of course there are definitely moments of complete frustration and exhaustion, but then I promptly remember how lucky I am to be a mum and just how blessed we are to have two bundles of complete joy.
NICU has changed me, but I believe it to be for the better. I am not sure if the flashbacks will ever cease or if my girls are completely through the woods, but NICU has taught me how important it is to live life in the moment and to celebrate every little success. And while in NICU, if my girls have taught me one thing, it is what it means to be brave and strong. As the saying goes, ‘you never know how strong you are, until being strong is the only choice you have’. I know that if I can handle NICU, I can take on anything- just like my determined, ambitious warrior princesses.
The future is bright and beautiful my precious, baby girls!
I don’t remember your name, nor can I picture your face, but what I do remember is your no bull honesty. I remember your brazen sincerity as I lay in the hospital bed; veins burning like webs of fire, heart pounding through my chest, arms and thighs bruised from steroids and cannulas, my tummy sticky and gooey with the monitors used to chase my active babies around, and my neck killing me from having to sleep upright, keeping my babies in sight for the nurses. I also remember the relief I felt when finally, a reassuring, firm voice from above (that would be yours) told me, “Honey, these babies are on their way!”
Throughout my whole pregnancy it was like all doctors and other nurses danced around the hard truths. I floated along with my not regular enough appointments, thinking all was wonderful and perfect. I wish I was more informed throughout the whole process and although having my girls arrive so early was extremely frightening, it was also a relief when finally, after almost a week in hospital with nurses and doctors pussy footing around the inevitable, you told me the truth. Thank you for not treating me like an idiot. This is my body, and my babies and I always should be told the truth, even if the truth is scary.
You didn’t wait for my Dr to arrive (like you were supposed to), you didn’t hold my hand and tell my babies “stay in their bubbas, the world is not ready for you yet”, you didn’t tell me that perhaps things would get better and that maybe I would get back to work and the whole situation could reverse itself, you didn’t make irrelevant small talk. You didn’t whisper in the birthing room corner with the other nurses or doctors about what I feared may be happening. You didn’t care that you broke the rules, not allowing my Doctor to give me the news when he finally turned up. You saw a distressed, pregnant woman, fearing for the lives of her twins, and you told her what she needed to hear- that within the next 30 minutes, she would meet her 27 week old (gestation) babies.
This was my first pregnancy and in just a moment, you taught me a lot. If I do have any more children, or if I find myself in hospital for some other reason, I will be requesting non-sugar coated information. I am not a fan of sugar coating, not in my diet or with my health. I don’t need a pretty picture to be painted of the best possible outcomes, I need all the possible outcomes handed to me. This way I can prepare myself for whatever is to come. Yes, we received some information while we were in this whirlwind, about survival rates and possible disabilities if our babies were to arrive, but it didn’t feel real because no one would tell me that it was likely that our babies were on their way. Maybe I should have figured it out, but when I was deep in this tunnel of the unknown, for some reason, I wouldn’t believe my girls were coming, not unless the words were said by a professional. Just a simple, “it’s likely they are on their way”, or “you should prepare yourself for their arrival”, would have been enough to kick my brain and thought processes into gear, to get my head around the fact that: this is serious, this is very real, I will be meeting my babies soon.
I know the other nurses were all beautiful, caring people (well most of them). But until there was you, I felt like I wasn’t being taken seriously. I felt like it was all a bad, fuzzy dream as my head spun and one day rolled into the next, and the next, and the next. All the while, I imagined that in a day or two I would be on bedrest at home, chilling and watching Netflix. No one would tell me that it was likely that my girls were on their way. No one would whisper the words. True, every day they stayed inside was a blessing, but living in limbo, on a hard, stiff hospital bed, thinking I would return home any day now, was false hope.
So thank you, for giving it to me straight up. I wish I had encountered you at the beginning of my hospital stay. I only met you the morning my beautiful girls entered this world. Now 6 months later, as I reflect on the whole traumatic experience, I remembered you and how somehow, as you handed me the news I had feared, your honesty made everything seem okay. I heard the news; it was go time, and yet somehow, I knew my babies were going to be okay.
With the increasing rate of premature births, it seems that someone always knows someone who has had a premature baby. Yet the topic itself seems a bit taboo. Hell, my Dr didn’t even feel the need to go through the possibility and he was supposedly the expert doctor for twins and high risk pregnancy. Nobody talks about it. Perhaps out of fear, perhaps just innocently unaware or maybe its because they would never think of it happening to themselves or their loved ones. I was the later two.
In NICU, each day was completely new and we never knew what to expect. You really do just have to take it one day at a time. Some days are extremely positive (like when India had her first cuddle without her CPAP-it felt like I was holding a real baby, weird thing to say but it is how it felt); other days it feels like the whole world is crushing down on top of you (like when we found out that Dahli’s PDA (hole in her heart) was not closing like it should). And all the days, as they add up and up and up, blur into one big, long, messy roller coaster ride, with the one overarching, glowing light at the end of the immensely, intricate tunnel-the day your baby/babies graduate and can finally come home.
Although friends and family found it hard to understand our heartbreaking situation, throughout our time in NICU, we experienced so much generosity and kindness. Family, friends, nurses, doctors, cleaners, neighbours and organisations all reached out.
I recently had a friend ask me what would be a good gift to give their friend who had just had a premature baby and was currently in NICU. I instantly wanted to help because I knew what was so helpful for us and I could relate to their situation. I knew what people did and didn’t do that was so wonderfully helpful and so greatly appreciated. So I decided to make a list of great gifts and things that you can do for parents who have a baby or babies in NICU:
Cook healthy meals that can be easily frozen (for long NICU day lunches and dinners). Some families are a long way from home and may be staying at the Ronald Mcdonald house, and if this is the case you could either send meals with family or purchase meals or groceries online, to be delivered.
Make or purchase healthy snacks (helped to get me through the long drive, the long stays and the perpetual expressing that I needed to do).
Transport. After having a C Section I couldn’t drive so I had family and friends driving me to and from the hospital twice a day. When family left, I was so lucky that an organisation (Community Options) gifted me taxi vouchers which I used until I had clearance to drive.
Bake some lactation cookies or muffins (I ate many of these and I swear by them-post on these coming soon! Pretty sure I have perfected the recipe!)
Create a NICU mummy pack. You could include things like: tissues (for all the tears), memory box (to put tags, CPAP, caps etc in), a cute pen (to label all the expressed milk bottles), some prem baby clothes (these were hard to come by and when buying for two, very expensive), lip balm (and coldsore cream if applicable), nipple cream, hand cream (oh so much hand sanitising!), chocolate (for those weak, I need chocolate comfort moments! And for breastmilk supply, of course!), nice tea bags (you can even get lactation tea), a water bottle.
crochet blanket from a friend
Prem sized clothing. So Cute!
Support. Knowing that you care, actually means a lot. You don’t have to understand. Just a few words of love and well wishes is wonderful. We had messages of love from many people, including on Facebook, from long ago friends who I wouldn’t have expected at all. Weekly check ins (texts) from friends were lovely. Of course, never expect a reply (although I always did my best) and just make sure that your messages of support don’t press for information about the situation. Your friend will open up if they want, when they are ready. Another nice way to offer support is to ask if they would like a visit (not to see the baby). You might catch up for tea/coffee, have a little picnic near by, or take a walk outside in the fresh air. I remember one day going to watch a movie with a friend in between cares. This broke up a long day and was great for my mental health.
Space. Of course support is lovely but also be aware of space. Like I mentioned, checking in regularly is nice but it you don’t hear from your friend or family member for a while, don’t be offended. Sometimes the world of NICU consumes you totally and you can’t bear speaking to or texting another person the same thing, explaining how well or not so well your bub/babies are going.
Don’t be nosy. I know you may just be a caring, concerned friend, but please don’t ask your friend, “why did this happen?” Chances are they are already feeling hopelessly responsible, losing sleep over what they could have done differently to have prevented it. And what I have read and heard from a few doctors is that, in the majority of cases, we don’t know why things like this happen, they just occur and nothing the mother did differently could have helped anyway.
The usual baby shower gifts. If your friend had an extreme premature baby (and it is their first), then chances are they missed out on their baby shower. Mine was planned for the day before the girls were born, so I was really disappointed that I didn’t get to experience this special day. Often new parents wait until after the baby shower to purchase things (like we did), so any baby gifts will most likely be greatly appreciated.
A massage or pamper voucher for mumma at a place close to the hospital.
A voucher for dinner close by to the hospital.
Purchase NICU milestone cards (Like the ones from Miracle mumma https://www.miraclemumma.com.au). I wish I had known about these or thought about creating them myself. Like I said though, we had no idea what to expect and so I really had no idea what the milestones would be.
Offer to feed and/or walk their dogs (in our case it was dogs, but other families had children. You could help with babysitting, dropping off and/or picking up from school, preparing kid friendly food or even doing some cleaning for them).
Mow their lawn. I was worried about our dogs barking late into the night, while I spent 12 days in hospital. So I had a family member put a note in our neighbours letterbox, apologising and explaining our situation. The next thing we knew, our lawn was mowed and continued to be so, until after we got home with the twins.
Writing this now and reflecting back on the overwhelming support and kindness that we received during our time in NICU, I have become quite emotional. Big or small, the thoughts, gifts and actions from our family and friends will always be so greatly appreciated. You all helped us through, and it is my hope that this list can help other families, as they are in the depths of their own NICU journey.
“Sometimes the smallest things take up the most room in our hearts”. – Winnie the Pooh, A.A Milne