Asking my questions

Today was a day I have been anxiously waiting for. A day that I dreaded and yet a day that I knew needed to come. It was time to once again attempt to advocate for myself and for my baby boy Reuben, this time with the words I had been preparing for quite a while now. This morning my husband and I attended our 6 week post birth appointment at the hospital.

I walked into our appointment this morning with anxiety riddling my body: from my cloudy, irritated brain and watery strong-willed eyes, to the the butterflies in the tips of my fingers and stomach, right down to my hesitant, fearful feet. As my name was called, I instinctively I knew I just needed to breathe and it would be okay. Well as okay as such a thing could be. Once in the sterile room, I pulled out my prepared typed sheet of questions, as ready as I could be to finally verbalise these questions that have circled my mind since the awful day that I lost my baby boy.

At first we met with a lovely and compassionate female doctor who gave us results to Reuben’s postpartum and to the many blood and placenta tests. This gave us some answers. She also looked at the placenta results from the twin’s pregnancy and we discovered the same issues with the girl’s placenta that my doctor had never disclosed to me. To say I was angry and upset about this is an understatement. Don’t I deserve to get the results about my own body and own pregnancy? Aren’t I entitled to this even if you think I wouldn’t understand? Because these results would have informed future pregnancies, Reubens pregnancy. All I was ever told was “sometimes we don’t know why these things happen”. The paperwork I was given last year to make a complaint about this doctor will finally be getting filled in and sent. No longer will I feel afraid and guilty about affecting him and his career. This information was the final straw and has informed this next step that I will be taking for Dahli, India, Reuben and the future mothers and babies that land themselves in his care.

After we were taken through these results this doctor did her best to answer as many questions as she could. She was very sorry, kind and patient and at times understandably nervous and unable to answer my questions. She also used Reuben’s name—a million brownie points for her. I was determined not to be rushed through and pushed out the door of this appointment. This was our time and we deserved all the time in the world until all our questions were answered and we felt we had received what we had came for. This of course led to the addition of another doctor, the director of specialist outpatients.

This doctor’s speech was very slow and his uncertainty was filled with many umms and errs. When it seemed like he was squashing me and my questions I pushed and fired back. When he was happy with his answers, I pressured and wanted more. Right now I feel pride for how strong I was and amazed at the confidence I found to stand up for my baby boy. We were of course told things that should have been done and about a wonderful new program that will be taking place to avoid these things…all the while I thought blah blah, fucking blah (excuse the angry cursing please) and when there was a pause I would remind him…”Yes but I did not get this”….”Yes but its too late, my baby is dead”…”so you’re telling me that if a high risk pregnancy came in tomorrow you wouldn’t refer them on to the high risk clinic?” I did not filter my thoughts, I did not worry that I might offend or upset someone. I needed to show these medical professionals how wrong this all is. I needed them to know how much I love my son and how deep this grief goes. I needed them to know that they did not do enough and that they made me feel helpless, hopeless and unheard. I used my words. I used my heart. I used my stubborn spirit to do all that I could in honour of my son.

I knew we wouldn’t remember all that happened in this appointment and so I supplied the doctors with a copy of my questions and they will be replying to them in email as well. There is one thing I do remember right now that made me feel kind of relieved in a way. And that is that I finally got to say something that has been burning a hole in my heart for a very long time. I told these doctors that I am so disappointed and upset that I was never taken seriously. I wasn’t taken seriously with the girls and I nearly lost them. I wasn’t taken seriously with Reuben and now I did lose him. These medical professionals need to learn to listen to mums because sometimes, well actually not sometimes, I honestly believe that always, a mum’s intuition knows best.

Another moment of the appointment that sticks with me is that the doctors went on to tell us what usually happens with these appointments (the ones mum’s who lose their babies have). I learnt that usually we should have an appointment a few weeks after to ask questions and then again at six weeks to answer any questions that may have been unanswerable at that early stage. When I was told this I laid my heart out there and I said “You know I never got a phone call about a follow up appointment. I had to make this appointment. It was like ‘well you gave birth but your baby died so you don’t deserve an appointment’…that’s what it felt like”. Its not really the words that I said that stick with me so much as the sad and regretful faces that I saw on these doctors. It is my hope that no other mum at this hospital, in this situation is made to feel this way because I have made the doctors totally aware of how shit that is and how awful it feels.

The unanswerable questions may or may not be answered in the next appointment we have or the email that should eventually be sent.  But one thing that has put me a little at ease is that when I asked the question ” I don’t understand what more I could have done…my referral said high-risk…I verbalised regularly in my first appointment that I am/was high risk….what else could I have done?…” the answer was ‘nothing. You did everything you could’.

So these medical professionals now know my thoughts. They know that I believe that my son could have been saved. They know that my son was living and healthy one minute and gone the next. They know that things which should have been expedited were not and will now begin the search and cover their bums to explain why my sons life or death situation was not a priority. They know that I have the paperwork to prove that my referral was in fact high-risk and that I should have been liased with and most likely referred to the high risk clinic. They understand that I will not be pushed over and this awful situation will not be swept under the rug. I have fought and I will continue to fight until I am satisfied with the answers that we receive. This is the least that I can do to honour my baby boy.

Having no control is hard. I had no control when my baby girls were born and to fill this hole I expressed breast milk like a mad woman. It was all that I could do. This time I had no control yet again. And its a pretty helpless and hopeless feeling that all I have been able to do for my baby boy is write him poems, plan his funeral, order his urn, be strong for his big sisters and fight for answers.  I know nothing will fix this. Nothing will bring him back or mend the huge, gaping hole in my heart. But this appointment was another something. It was something to help me through the grieving process. It was something to help me honour my baby boy. It was something to be in control of. It was something to make me feel strong, fearless and powerful – much like the warrior women that I consider my baby girls to be.

Thank you so much for the ongoing support. Apologies for the possible many spelling and grammar mistakes…it seems a couple of glasses of wine help to get my creative juices flowing.

finch

 

Love Terri

You are here

Every day I wake up and I think of you. Throughout the night, as I stir, I rub what used to be your home. Some mornings I wake from dreams of you and your big sisters and everything feels lighter. Other mornings my body doesn’t want to move and my mind races through a million unhelpful, yet necessary thoughts. People tell me you are always with me and with every ounce of my being I want to believe this. In this moment as I have began typing,  I am beginning to see that perhaps it is true, you are here.

Right now your here in a way that hurts me so bad that I feel like I am choking and there is a knife in my heart. Yet this morning you were with me in a way that floated me to my baby girl’s room and gave me the sense that everything is going to be alright. You were with me in the car today as I drove myself to an appointment, feeling reassured and noting that everything that I am right now and that I will be, is a part of you just as you are a part of me. You were with me at lunchtime today when I finally made the decision that I actually do need to care for this body, if not for me, for you and Dahli and India. I can not let what happened make me weak and a bad role model for my baby girls and I must not lose myself as well. If I were to lose myself then I will have lost you completely.  You need me to be strong. You need me to take care of myself and you’re guiding me as I do this for you, for my girls, for my husband and for me.

The things I do every day, the things I say, the emotions I feel, you have led me to them all. I can not hold you, but I can feel you. I can not see you, but I am beginning to believe that you can see me. I can not smell you, but I can talk to you. You have given me signs and I patiently await for more. It is not enough. It will never be enough. But it is something. And right now, in this uncharted territory, something is all that I can hope for.

Fly high my sweet finch, and don’t forget to visit your mummy.

 

A million questions

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:

  1. Would have Reuben been in pain when he passed away? 
  1. 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? 
  2. 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.
  3. Why did my body let my perfectly healthy baby boy go? Why did I go into preterm labor again?
  4. 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. 
  1. Is there something I could have done to have stopped this happening? Or something I might have done that caused it?
  1. Did falling pregnant so soon after the twins have anything to do with why this happened? 
  1. Is it safe for me to have another baby?  
  1. 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?  
  2. 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? 
  3. 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 going to 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.

Love Terri

Fiji, you were good to me.

Oh Fiji, you were good to me.

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.

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.

 

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.

 

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.

 

 

painting on south pacific island

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.

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.

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.

beautiful sofitel 2

 

Love Terri

 

Untitled

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.

Love Terri

 

 

Running 4 NICU Update

It is definitely time for an update as I know it has been a while. I had planned to write weekly blogs, post regular pictures and remind you all to go and support this amazing organisation (The Neonatal Intensive Care Foundation)by donating to our page https://www.gofundme.com/running-4-nicu

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.

big sisters 2

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!

 

 

 

 

 

 

Love Terri

Week 1 training – Running 4 NICU

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!

tuesday runDay 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.

day 5

 

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!

 

Love Terri, Dahli & India