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

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

 

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

 

Running 4 NICU

Please help us raise funds: https://www.gofundme.com/running-4-nicu

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 neopuff-t-piece-resuscitator-500x500resuscitation 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

and follow us on Instagram at Double_the_luv

Thank you so very much,

Love Terri, Luke, Dahli and India

go fund us

World Prematurity Day

Part 2

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.

birth

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.

peep hole

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. 

daddy head massage
India gets head massage from daddy

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.

Love Terri

professional

 

 

Dear Doctor

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. 

 

Dear Doctor,

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.

just born
One of the girls straight after birth with their NICU team.

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.

scan
8 week ultrasound. One placenta. Dichorionic/Monoamniotic twins

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.

last scan
The last ultrasound before I was hospitalised.

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.

me at last scan
Oblivious to what was to come. My last scan before I was hospitalised.

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.

christmas bump
Christmas time bump! I thought I would last at least another 10 weeks.

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.

Thank you,

Terri

 

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.

last pic

Love Terri