The NICU

Dani shares with us the time Jasper spent in the NICU and having to make the hard decision to turn off life support.

     "I could have stayed in that NICU unit for hours just touching his delicate hands 

      and stroking his arms and head, but we weren’t allowed. Many of the babies

       in the NICU are very sick and I know they try and limit contact until babies 

      can be removed from their special chambers. Regretfully I agreed to go back 

      to my room."

November 18, 2011, at 9.31am my sweet baby boy Jasper was born at 9.31am by emergency classical cesarean at 26 weeks. When he was born I didn’t get the opportunity to say hello, or to see him, he was in respiratory distress. The nurses showed us some photos before he was whisked away to the NICU unit.

It would be almost 4 hours before I got to see him for the first time. He was intubated and was on a positive airway pressure machine to help him breathe. He was so small at 785 grams but he was fighting. In his small humidification chamber I could see his tiny legs kicking and I could see him trying to cry – he couldn’t make a sound because of the breathing tube. I was told I could put my hand in and touch him as long as I sterilized my hands first. That first touch – his skin so soft, but so bruised and red from the trauma of his birth. But I didn’t even notice the colour of his skin – all I could think was that I had birthed a perfect baby boy – a fighter. He was naked, save for a tiny nappy that could have fit on my fingers, and a teenie tiny leg band that won’t even fit over my finger. The doctors told us he was doing very well and that they were able to reduce the pressure of his machine and that he was starting to breathe on his own.

I could have stayed in that NICU unit for hours just touching his delicate hands and stroking his arms and head, but we weren’t allowed. Many of the babies in the NICU are very sick and I know they try and limit contact until babies can be removed from their special chambers. Regretfully I agreed to go back to my room.

It took so much begging to the nurses before the consented us to go back down and see him. They finally allowed us at 7pm, but when we got there, it was not cheerful anymore. The doctor was about to call us. Jasper had stopped taking oxygen and was suffering pulmonary hyperplasia, meaning his lungs weren’t developed. The doctor gently explained that with the amount of time he had been without sufficient oxygen, the chance that he would get through this was remote – and the chance that he would ever be able to see, talk, walk or be without oxygen for the rest of his life was nil. They told us they believed that his death was inevitable and that we had a choice. To remove his life support and let him fly to God peacefully, or keep him on his oxygen and to see if he improved.

How does a parent make this choice? My mind was numb. Could I possibly live the rest of my life knowing that I agreed to remove care? The doctors said his death is inevitable but what if they’re wrong? Can I live with that? My mind was numb. I looked at my husband. Silent tears streaming down his cheek – still in his work clothes from when he bought me in that morning. My only thought was that I didn't want to be alone. ‘Can I please get my parents here’ I remember asking. The doctors agreed and our parents were called.

Somehow I fought through the fog and mind numbing pain to ask for Jasper to be baptized. I don’t know if there is a life after this, but I wanted to make sure my baby got every chance at heaven and God. Our parents came and finally, Corey and I knew it was time. Time to make sure our baby suffered no more. We knew. He wasn't fighting anymore, he was still. He was exhausted. They placed him in my arms and slowly removed his tubes. I held him tight and all of his grandparents came and told him how much they loved him, touching his hair. In the final moments of life, all he knew was love and comfort. In his mummy’s arms and hearing the voices of people who loved him.

He passed away in my arms at 7.31pm. Finally I was able to give him to his grandparents for a cuddle. They said their goodbyes and I sat there thinking – I had to switch off life support on my son. My first born. I did that. Nothing will ever change what I did. I hope he knew I loved him. I didn't want him to suffer anymore. If nothing else in his short time on Earth I wanted him safe and loved. And I hope he felt that.

The absolute soul crushing, heart wrenching physical pain that comes with losing a child, and the guilt I felt for ending his care – words can never make someone who hasn't lost a baby understand. The pain – it’s physical and it tears apart your heart. You literally feel like your heart has shattered and you are surprised it still beats. Each beat is physical pain. My baby was gone. I helped that along. And 2 days later I walked out of the hospital without my baby, slowly, bruised, and with a broken spirit.

Dani    

If you require support after reading this blog please contact 
Sands on 13 000 72637 

Danielle Hall

Wife to Corey and Mumma to two boys: Jasper Rhys in heaven and Harrison Phillip Robert in her arms. Jasper passed away after PPROM at 23 weeks and birth at 26 weeks, surviving for 10 hours in the NICU unit. Currently completing a Master of Social Work with the goal to aid in the safety and protection of all children, because all children deserve to feel safe and loved.

A Letter to My Daughter

Genevieve shares with us the letter she wrote to her daughter, Amalie.

"You are my rose, Amalie. My perfect little daughter. You made me feel whole… complete… for the first time in my life.  You were the piece of the puzzle I didn't fully understand how much I was missing having - the piece that rendered almost everything else in my life insignificant in comparison."

A letter to my daughter (read aloud as we planted a tree in her memory)

My darling daughter Amalie,

Thank you.  Thank you for coming into my life and bringing me more joy, peace and fulfilment than I thought possible, albeit only for six short months.

I felt you move inside me, and part of me wished I could kept you there, protected, forever.  I would have done anything, anything at all if it meant harm did not befall you.

But alas your life journey was tragically short, nipped in the bud.  I was lucky. We spent several months together. The rest of the world only knew you for a few short days.  But the ripples from your arrival and departure are still being felt, by so very many people.

There have been trees and flowers planted in your name all over Australia and beyond. Like this one. They will grow and flower, celebrating your life. And my hope is that as they are tended, they will not induce sadness in those gardening, but instead, gratitude and wonder at the blessings your short life has reminded us we have.

Your Dad, Nanna, Granddad and I will feel pain too, that is inevitable. Pain that we will never get to see your first steps, your first day at school, your first love, your first heartbreak. Pain that you will never know much love you can feel for a child growing inside you.

But pain is not only inevitable but invaluable for a full and fulfilling life.  The lows give life contrast and context.  They help breed resilience, empathy and humility, and these are some of life’s most important skills. So much comes down to attitude.

I won't complain because roses have thorns, but instead rejoice because thorns have roses.

You are my rose, Amalie. My perfect little daughter. You made me feel whole… complete… for the first time in my life.  You were the piece of the puzzle I didn't fully understand how much I was missing having - the piece that rendered almost everything else in my life insignificant in comparison.

I understand so much more now- about myself, about motherhood, about the world.

And for this, I will be eternally grateful.

All my love,

Mummy.

If you require support after reading this blog please contact 

Sands on 13 000 72637

Genevieve Yates

Genevieve is a GP, medical educator, medical writer and musician from the Northern Rivers region of NSW. After a long and difficult road to motherhood, her beautiful daughter, Amalie Ella, was born in December, 2014.  Tragically, Amalie died of neonatal sepsis after only four days.

Through her clinical work, teaching and writing, she hopes to she can use her experiences to help support both patients and other doctors in managing the complex emotions surrounding fertility issues and perinatal loss, and also encourage more open discussion in the general community.

Her website can be found at: http://genevieveyates.com

Levi's Story.....

Adin shares her story about the birth and death of her precious son, Levi.

"Just recently I read an excerpt contributed by Deborah L. Davis PhD from 
the book "Never Forgotten".  She wrote "it may help you to remember
that you were in the impossible position of having to 
choose between terrible and horrible.” I have a profound connection 
with this statement, and it provides me with bittersweet comfort."

I was always afraid of becoming a mother because I was scared my baby might die.

There wasn't one thing that particularly scared me. I was scared of the “what if’s?” In my head I resolved to the fact that every prospective parent must worry at some point about these things. It comforted me to know that over one hundred billion people have ever been born, and of the seven billion on the planet right now, the average life expectancy was about 70 years of age. Millions, no, billions of people do this parenting thing every day. So surely I could?

So, I did.

And guess what? My baby died.

Actually, that’s a selfish thing to say.

Our baby died.

My husband lost his baby too.

Our first child, a son, Levi Duxbury Hewat was born on at 4.58pm on Saturday 8 November 2014 at 38 weeks exactly, and was 2.92kg and 49cm of perfection.

Levi died six days later.

Surprisingly, when I fell pregnant the fears I had weren’t really bothering me and we had 38 weeks of joy, excitement and anticipation. I was fortunate to be one of those enviable women with a ‘breezy’ pregnancy (thank you, Levi).  

I was due to finish work on 7 November. Levi had other plans. My membranes ruptured on Thursday 6 November.

We went to the hospital for a check-up that afternoon. It seemed my membranes hadn't ruptured completely, and all was looking OK, so I was given the option to join the queue for an induction or go home to await the natural onset of labour. We chose to wait and get one last good night’s sleep in (Ha! We didn't sleep a wink). We were advised to return to the hospital the following morning if nothing was happening. Apparently the vast majority of women will go into labour naturally, and are likely to give birth within 24 hours of a rupture. I’m one of the minority.

We returned to the hospital on the Friday morning. Again we had the option to join the queue for an induction that day or go home to await the natural onset of labour. This time we chose the induction.

The labour was long and difficult: medical staff struggled to insert the cannula; nine hours after contractions commenced I requested pain relief and it made me vomit (hard to do ‘nicely’ when you’re contracting); several hours later I opted for an epidural. The first attempt resulted in a dural tap, so the anesthetist gave it a second go. A short while after the epidural kicked in there was a prolonged fall in Levi’s heart rate and I was being prepped for an emergency caesarean. Levi’s heart rate recovered, and labour continued as before. Late into afternoon I was able to start pushing. Over an hour later the doctor was called to perform a vacuum assisted delivery. Around fifteen minutes later, our Levi was born.

After the birth, Levi was administered oxygen. Eventually, he was placed on my chest for a few minutes. He had big, dark eyes, my lips, and his Dad’s dimple. He is the cutest baby I have ever seen. Because Levi was administered oxygen, he was going to the special care nursery for observation and I was going into the theatre room to receive a blood patch following the dural puncture.

While Levi was in the SCN staff saw him have a seizure so he was moved to the Neonatal Critical Care Unit and was being monitored by an EEG machine. The second time I saw my son he was covered in wires. He was in an open crib so whilst we were unable to cuddle him we could gently cup his feet or hold his hand. He was to be given an MRI and a lumbar puncture to determine or rule out possible causes of the seizures. Throughout the next 48 hours, my husband and I along with our family members would sit with Levi and wait for updates on his condition. The seizures seemed to have subsided, initial blood tests came back clear, the EEG and the majority of the wires were removed. The lumbar puncture however wasn’t successful and he was still waiting for his MRI.

By the Monday evening, and throughout Tuesday, Levi’s condition was stable, or at least hadn't regressed. In fact on the Tuesday evening, the clinical nurse was going to arrange for us to have a cuddle. The nurse told us to go and have dinner and by the time we finished, she would get him ready for to nurse. In the time it took to have dinner Levi’s condition deteriorated. I can’t recall exactly what happened, but we weren't able to get our cuddle with him that night. They tried another lumbar puncture, but again it was unsuccessful.

The following day was tense, and they were hoping that the MRI would go ahead. The doctors felt that Levi was battling an infection and more seizures were visible. They suspected Levi had E.coli which more than likely meant he would also have meningitis. As such, they began treating him for E.coli and meningitis. That afternoon they took more blood cultures and put Levi back on the EEG machine for some testing before he was finally taken for his MRI.

It was later confirmed that Levi had E.coli and the strand of E.coli he had was resistant to the usual E.coli medication that is prescribed. He would still be treated for meningitis, however they were unable to confirm or rule this out due to the unsuccessful lumbar punctures. A neurologist also confirmed that the lesion on Levi’s brain was the result of a stroke, but they were unable to confirm if it occurred in utero (causing my membranes to rupture), during labour, or was exacerbated by his vacuum delivery.

I was hoping the first time I had to write out Levi’s name was on his birth registration. Instead I was  days into motherhood and filling out his details so he could receive blood, platelet transfusions, further brain testing, and various other interventions. As it would happen, we would sign and pay for his funeral before we would lodge his record of birth.

It was apparent that Levi’s infection was taking over his body. His blood wasn’t clotting properly and the platelet transfusions weren't working. The E.coli, which was septic, was compromising Levi’s organs, and as such he was put on further support. He was being administered a number of medications to combat the infection and seizures, and as a result his body was becoming swollen. The seizures became more apparent, but no one was sure if that was a result of the stroke, or the infection taking over his body, or both.

Just recently I read an excerpt contributed by Deborah L. Davis PhD from the book “Never Forgotten.” She wrote “it may help you to remember that you were in the impossible position of having to choose between terrible and horrible.” I have a profound connection with this statement, and it provides me with bittersweet comfort.

The doctors conceded that Levi was receiving the maximum dosage of medication that his body could handle. His seizures were occurring almost every minute and were distressing to witness, and we was becoming unresponsive to stimuli.

The afternoon of Friday 14 November 2014 my husband and I made the decision to withdraw Levi’s life support.

We had time to notify our immediate families, enabling those who were able, the opportunity to say goodbye (and hello in some cases). The hospital arranged a blessing and we were fortunate to have a volunteer from Heartfelt come and take some photographs.

When the machines were turned off I got to hold Levi for the second time, but my husband got to hold his son for the very first time. We held Levi; kissed Levi; talked to Levi; bathed and dressed Levi (we were terrible at it); and held him some more. We had the opportunity to say good bye and tell him how much we loved him. We are very thankful for that.

Levi had been born, lived, died, and farewelled all before his estimate due date arrived. It’s been almost six months since then. My husband and I have our daily memorial rituals that keep him alive in our hearts and our home. We’ve had help and love from family and friends, and sought help from organisations such as SANDS and SIDS and Kids. We just want to live a life that honours Levi and makes him proud of us.

In a couple of weeks I’ll be running in the 2015 Mother’s Day Classic. When I was pregnant the 8km fun run was my personal ‘benchmark’ event to aim for in my post-natal fitness quest. I was going to push Levi around the course. Exercise has been a big part of my therapy, and as it turns out, Levi’s going to be the one pushing me.  

By Adin  – Levi’s Mum

27 April 2015.

If you require support after reading this blog please contact

Sands on 13 000 72637

Adin Hewat

Adin loves camping, the beach, travelling, quizzes, puns, (bad) dancing, (really bad) karaoke, and shamelessly laughing at her own jokes.  She hates clutter, is scared of dogs, won’t eat fruits touching and struggles to swallow tablets.  Adin is a wife to Adrian and a Mum to Levi who passed away in November 2014 at six days’ of age. She currently lives in Brisbane but supports NSW in the State of Origin

More Sweet than Bitter

Larissa shares again her feelings as she approaches her third Mother's Day without her precious Ariella.

"I know not everyone will feel the sweetness on Mother’s Day and I know it will still be partially bitter for me as I long for Ariella in my arms."

This year will be my third Mother’s Day and it’s the first one I haven’t dreaded. In 2013, Mother’s Day was just three short months after my daughter’s stillbirth and the grief and devastation I felt was raw. It was so raw that I decided I couldn’t face Mother’s Day in any form whatsoever and instead of celebrating, my husband and I spent the weekend away together. The day itself turned out easier than I thought, but the lead up to it was very, very bitter. I didn't feel like I could celebrate without my daughter (nor did I want to do so).

Last year, it was different. My son was born safely four months before Mother’s Day and having him around certainly made the lead up easier. In 2013 I was scared that no one would acknowledge I was a mother because my daughter wasn't with me but I knew no one could deny my motherhood in 2014, considering I had a child in my arms. But the day itself still felt bittersweet. My son’s safe arrival didn’t lessen the pain of Ariella’s death and I still felt the bitterness of her absence on the day. But being able to hold one of my children added a little sweetness to the day.

Recently, as I thought about this coming Mother’s Day, I realised something that I didn't think was possible. This year, it’s more sweet than bitter! I know the day will be hard and I’ll almost certainly shed a tear when we visit Ariella’s grave, but the rawness of the pain is largely gone. It’s not that I won’t miss her (I will) nor is it that I don’t wish she was here (I do), but the sweetness of my memories with her are starting to take over the bitterness of her death. I feel like this year it is easier for me to see my motherhood defined by all of my children, instead of fearing that others will forget my firstborn, the one who made me a mother.

I know not everyone will feel the sweetness on Mother’s Day and I know it will still be partially bitter for me as I long for Ariella in my arms. But I do hope that all of us mothers will somehow find peace this year on what is usually a difficult day.

Larissa

If you require support after reading this blog please contact 

Sands on 13 000 72637

Larissa Genat

Larissa is a wife to Marcus and a mother to two beautiful children – Ariella Jade in Heaven and Levi William in her arms. She loves spaghetti bolognaise and the smell of rain, but neither of them could make her smile when, after a textbook pregnancy, Ariella unexpectedly died at 39 weeks gestation. No reason was ever found for her death. Soon after Ariella’s death Larissa began writing. 

You can find Larissa's posts at:

Deeper Still (www.loveisdeeperstill.blogspot.com)  and on Still Standing Magazine (http://stillstandingmag.com/author/larissa).

Keira's Song

Valerie is sharing her story with Sands with the aim of opening a window into the experience of stillbirth.  Her precious daughter, Kiera was born 2 years ago on May 4th and she wanted this to be a gift to her.

"Your body slipped into this world at

6.10 am Saturday the 4th of May 2013 

just as the birds were waking.

The silence upon your arrival was deafening  

but your birth was beautiful."

We were always going to have 3.  I've never been surer of anything.  From writing our wedding vows  and even during my labour with your second sister Isla ( who must have known also because right from a toddler she often talked about a baby sibling)  I just knew our family wasn't complete without you – our number 3.

I knew right from the moment of conception - from the first  flicker of your earth song, you were finally joining us, I didn't really even need to take a test but I did anyway just to see those two pink lines one final time.  I was Happy! Excited and nervous too - but so so happy... to  greet my final pregnancy journey, and babyhood - with you.

My pregnancy with you felt different to both your sisters right from the very beginning.

Perhaps because I was older this time? Perhaps because we had so recently been through a very stressful period of our lives with the Christchurch earthquakes, and the upheaval and transition of moving to Western Australia?  Or maybe just maybe you were sending me little warning signs all along - that our journey would be brief?

Sometime around 10 weeks I began to feel your first tiny fluttering's, the primitive beginnings of your own unique language through which I began to know you. Your patterns of wakefulness, positions you liked and disliked, sounds and people that soothed you, music that you liked, loud noises, ultrasounds and other monitoring that scared or distressed you. Whenever I spoke directly to you - you ALWAYS without fail answered with a reassuring kick or bump.

 At 12 weeks Daddy and I were so excited to see you on our very first ultrasound scan – there you were on the screen so infinitesimally small yet perfectly formed!  We marvelled at your tiny perfect fingers and toes, and your little heart pulsing so fast. 3 days later the Dr asked to see us, it was disquieting when the receptionist refused to divulge why.

We learned at that appointment that you were considered high risk for Down Syndrome. 1:132 - were your statistical odds.  Daddy and I were shocked and surprised, which led us to research, question and deliberate on the statistics, the syndrome and further testing procedures.  Ultimately we decided it didn't matter to us if you had DS, we just wanted to know one way or the other to prepare ourselves. So four weeks later at 16 weeks gestation we had an amniocentesis performed at King Edward Memorial Hospital.   The Specialist obstetrician who expertly singlehandedly carried out the procedure told me you were bouncing up and down on your head the whole time!!!  24 hours later  preliminary test results showed you were a chromosomally perfect little girl!  Finally we felt we could relax and enjoy the rest of our pregnancy and prepare for your arrival earthside.

Christmas Eve 2012  I saw you again  - a routine anatomy scan showed you to be a busy robust healthy little baby.  Santa came and left your first Christmas present - the softest sweetest little bunny with silk edged blanket. Your big sisters loved that!

You were very aware of your sisters - particularly Alena. Whenever she rested her hand or head on my belly and spoke to you - you always kicked and wriggled right back - every single time!  Whenever they put the Swan Lake Ballet DVD on and danced - you danced too. At swimming lessons you even seemed to swim when they did!  Often it seemed their noise and chaos would lull you off to sleep.  Both of them were so excited you were on your way, they made so many plans for you...

We began to make a physical space for you in our lives - a nursery of sorts.  I really relished the experience, and knowing it would be my last, chose carefully.  Bizarrely a series of strange incidents ensued over the selection, purchase and construction of your cot -  which eventually (out of pure frustration) had me ask Daddy if the Universe was trying to tell us something?  The fact that I even said that gives me chills now.

Also at about this same time I was carefully considering how and what I needed to birth you in the closest possible manner -  to that of your sisters - which were both for the most part calm ,natural, and empowering births.  The public system here in WA does not utilize an LMC model of maternity care - rather teams of Drs and Midwives in very busy scheduled clinics.  This effectively means there is no personalised care - and you see someone different each visit. We were ineligible for private maternity care as we hadn't been here long enough. I was looking to establish a partnership/relationship in lieu of an LMC  and was very fortunate to cross paths with an exceptional Trainee Midwife  Steph. A mother herself, in her third year of midwifery and nursing training looking for expectant mothers to share their pregnancy and delivery journeys to help fulfil her course obligations.  I am eternally grateful for whatever force bought us together, because she was to become our rock, my port in the storm and a very special friend for life.

At 29 weeks I was diagnosed with borderline gestational diabetes.  This meant I had to tweak my diet a little and prick test my blood sugars 4 x day to make sure we were keeping healthy.  At 34 weeks we had another scan to check your growth and well-being. You were doing great - apart from an usually large chest measurement calculation which potentially meant you might be very big - or macrocosmic - which can occur with Gestational Diabetes. I never believed you were a big baby, my weight gain was minimal and tho I felt I was carrying bigger than Isla , I felt I was either the same as or slightly smaller than with Alena. I learned later I was bang on, and the scan was well out...  Another scan was booked for 38 weeks. I suppose you could say this was the beginning of the end...

Tues April 31st 2013  38 weeks and 1 day old, at 1pm was the last time we saw you alive.

It was school holidays and during the morning I had felt really anxious about having this scan - so anxious in fact I asked Daddy to drive us.  I am so incredibly glad I did now, because it was the first time we all went – Me, Daddy and your sisters. They were so excited to see you, and there you were happy and healthy and wriggling around non stop!!!

The following day I had an appointment at the antenatal clinic for a routine check up and to discuss the ultrasound.  Unfortunately neither Steph nor Daddy were able to come so I was alone. It was crazy busy and a long wait after seeing the midwife and physio but eventually I got to see the Dr - yet another different one and she was by far the kindest and most attentive. She was happy with how we were both doing until she saw the scan report.  After consultation with one of her superiors it was decided it was better for you and for me to birth you sooner rather than later as there was a strong possibility you could get stuck during delivery. If you had measured only 4mm bigger they would have scheduled a caesarean. On that basis I was scheduled for an induction in 4 days time.  The Dr then proceeded to outline all the possibilities of birthing a big baby - shoulder dystocia and all the awful things they might have to do to get you out if you got stuck.  The descriptions  made me feel quite sick and very very anxious for both of us.  Before I left the Dr asked to examine my cervix - presumably to check its readiness for induction. She also offered a membrane stretch and sweep to help get labour started. She felt sure that it would, given you were my third baby and my body was was now well versed in labour and birth.  I agreed to both simply because,  my beautiful girl, I wanted you to have the safest, smoothest, most natural entry into this world possible - and that seemed at the time like the best alternative I had.   I  was alone, afraid and not thinking clearly.

I will regret that decision for the rest of my life.

  

Afterwards I was put in a monitoring room blowing the most freezing cold air.  A staff member told me someone was menopausal and needed it that cold. I sat in that antartic room for 45 minutes on my own shaking uncontrollably.  You did not like that CTG machine and kept moving away from the probe, no matter where it was placed.  You probably didn't appreciate my shaking either.  Nearly 4 hours after arriving at the clinic I went home cold and stressed to make preparations for your sisters for sunday night as Daddy would be staying with me at the hospital.

The next day was Thursday. You were flipping around quite happily but I was feeling a bit off. I wanted to stay close to home, feeling labour would be imminent and still feeling unsettled and anxious, such a  contrast to how I had been at the end of my previous pregnancy with Isla.  Thursday evening I asked Daddy to give me a reflexology foot rub - with the hopes of stimulating labour.  We slept peacefully till 4 am when my waters broke! I was SO relieved  - you were on your way without needing the induction! How clever of us both! 

The hospital asked us to come in for a check up as soon as we were able.  9.30 am we arrived and they did another CTG - and checked my vitals. Your readings were textbook perfect!!! Mine were also good, so we chose to go home and wait for labour to begin with strict instructions to return at 4am even if it hadn't for IV antibiotics.  About  an hour after that we decided to go for a walk in a bid to get things moving. Such a nice walk (waddle) with your Daddy down to the jetty and back. I vividly remember walking back up the street towards home and feeling you moving -  I thought it strange because you usually moved most when I was still.  I didn't know it then but that would be the last time I ever felt you move.

The walk had worked!!! Soon after I was getting contractions – regularly. Long strong ones - every 10 minutes for about 45 - 50 minutes. Then everything stopped.  Frustrated by this I tried to keep moving and spent loads of time on the edge of the couch, on my knees on the floor etc to encourage you into the best possible position. You seemed 'quiet' but I felt quite  sure you were just getting ready for your big entrance into the world.   Alena wasn't home to ask me if you were moving either - she was at the zoo with Grandad Mikey .

By the middle of the afternoon I was really tired - and a little bit concerned that labour wasn't progressing so decided to rest in bed and slept. I woke when your sisters came home and Daddy was making dinner. I wasn't hungry and still felt a bit off but ate a light dinner.  By now I was growing more concerned about your inactivity. Something felt different. I went back to my bedroom for a quiet chat with you.  My belly felt different, quiet and heavy, I quietly begged for you to move for me, I told you how excited we were to meet you, how safe you were, how loved you were - I poked and prodded and poked and eventually exhaled with relief when I felt you respond. In hindsight this wasn't you - it was gravity. The reality was this is when you left us, you were already returning to source... your light, your song was ending... the autopsy told us that.  Somewhere somehow I think I knew - but not consciously. 

After an evening walk with Daddy, and your sisters, I spent the evening trying to keep warm, I was so cold and unable to identify or shake a deep feeling of unease, anticipation - something I still can't properly explain.

By 10 O'clock I was ready for bed. Once settled contractions began again frequently and rhythmically. I was so glad - it felt like we had dodged another bullet. You were not moving, I assumed because you had tucked yourself well in, in preparation for birth. I decided not to wake your Daddy sleeping so peacefully until the contractions got closer. I was still cold and began to shake - anxiety does this to me, as does a woman's labouring body. I remembered it well when labouring with Isla.  Deep breathing usually subsided it quickly but this time it wasn't working, in fact it was getting worse. My mouth was very dry despite drinking cupful's of water. By 11.30 pm Daddy insisted we get to the hospital.  For a brief moment I was overwhelmed by the feeling I couldn't move, get out of bed.  Like I was this great impossible weight.   The truth  was I was actually very sick but I didn't know it just yet...

I remember just before leaving the house I had another drink of water, my mouth felt like sand, I could hardly hold onto the glass my hand was shaking so badly and my teeth were clattering hard on its rim. I turned the heater on full in the car I felt so frozen.

A midwife was waiting for us, at first she looked cheerful, calm and relaxed - but her demeanour began to change when she noted I was unable to provide a urine sample and was shaking so violently. I was covered with a warm blanket, and she proceeded to strap the CTG monitor around us.  She seemed to keep moving it around and told me our heartbeats were mirroring. Maybe if I hadn't been so ill at that point I would have understood what that really meant?

My student midwife Steph arrived right about then.

She immediately knew from the midwifes movements, my high temperature, racing pulse and declining kidney function that things were very very wrong, I had no idea she knew this though - because she kept smiling, holding my hand and both offering words of encouragement and answering mine and the midwifes questions without hesitation.  An intern Dr came to see me and then we were moved to a delivery room, where the atmosphere suddenly swung from a quiet business like manner to an intense, strained and hurried one, I knew right then things were not good for us my darling. Time seemed to warp into alternating slow motion and fast forward all  at the same time.

There were now 2 midwives, the intern, and an obstetrician with me. I was having blood drawn and an IV iline inserted, still contracting regularly all the while. I remember a parade of tense and anxious faces, even a murmured argument between staff on the other side of the room, Daddy and Steph were my 2 constants and where I  tried to keep my focus, to concentrate, to try and think through a head full of hazy cotton wool. I was there but I wasn't - acutely aware of the increasing contractions yet emotionally and mentally detached – far far away. Maybe sepsis does that to you - or maybe it is natures protective mechanism? 

Next they needed to insert a special probe into your head to read your pulse, a horrible but essential procedure. I'm oddly  grateful you never had to feel that stress and trauma - it was agony, through a swollen infected cervix.  They made 3 attempts - changing probes to rule out mechanical failure. I distinctly remember seeing one of the midwives stand back after reattaching the cables, hands folded, smiling a little... fading quickly when there were no reassuring beeps... and it was then I knew for sure, way down deep,  Her face, my heart and soul all told me the cruel unjust truth.  The consultant arrived to conduct an ultrasound scan  - first with one machine - and then a second one.

The whole room was so still and quiet, just as you were when the probe moved over you that one last time.  My whole world shattered in the second it took for me to register your still heart. The silence broken by the consultant softly uttering that sentence I will never forget - in the most gentle way he could. "I'm so sorry but your baby has died" followed by Daddy's deep distraught sobs...

I have no idea what I said or did right then - I was in pieces, someplace far away, feeling so utterly hopeless because my womb that was so supposed to have been your safe place  had betrayed us, I couldn't save you, couldn't take away Daddy's pain or even comfort him because I was still labouring... trying to absorb the enormity of the situation,  with every contraction starkly reminding me that although you were gone, our dream smashed into tiny pieces, your physical entry to this world was still happening – Your body still needed mine to complete that.  I waited for , and fully expected them to say they would take me to theatre, they didn't. It felt like such a cruel joke that they expected me to birth you naturally, until Steph gently explained that it was actually better for the grief and healing  processes in the long term. Somehow – I was able to process that and feel grateful that was at least one thing  - the only thing I could still do for you - just as I had for your sisters.  I'm so very proud and glad I could and did.  I begged for pain relief - an epidural, anything to make it all go away. They declined explaining with the infection I had it was too dangerous to put a needle into  my spine. They gave me morphine instead.

We were transferred by ambulance to King Edward Memorial Hospital where I would be able to be monitored more carefully in the adult special care unit. Steph drove Daddy in her car. I do not know what we would have done without her!

The ride seemed quick - the morphine was taking the edge off and I felt very numb and sleepy. A delivery room was waiting for us. Such a lovely peaceful room - dimly lit, and so very quiet.  Such a welcome contrast from the bright, busy stressful room we had just left.

 The midwife - Pauline,  whom met us there was exceptional. So gentle and respectful. Her eyes so full of care, concern, empathy.  With Daddy on one side of me and Steph on the other holding my hand, talking me through, never wavering in the slightest, they both gave me the strength and courage to birth you in my own way, in my own time. It was very peaceful, very sacred, it was ours. I couldn't wait to meet you - see you, hold you, surprisingly that anticipation was as great as it was with your sisters - maybe even greater mixed with the  tiny crazy silver of hope that maybe they were wrong, and I would wake up from this nightmare after all.   I reached down and touched your soft curly hair as you crowned - lots of hair just like your sisters -how very bittersweet.   The next thing we noticed was the cord wrapped very tightly twice around your neck (I knew you had been a busy little bee in there) but were later told this was not a factor in your demise.  Your body slipped into this world at 6.10 am Saturday the 4th of May 2013 just as the birds were waking. The silence upon your arrival was deafening  but your birth was beautiful. And uneventful. No darling you didn't even get stuck like they worried you would.  The midwife handled you so delicately, wrapped you and gently placed you in my arms, and for a moment there was only you and me my sweet baby girl. 7lbs 2oz - a little smaller than Alena and a little bigger than Isla.  For the briefest moment I marvelled at your absolute perfection, kissed your angelic face and felt the same enormous surge of pride as I had after the birth of your sisters, before the force of reality finally caught up and I caved into a heaving, sobbing mess.  How on earth could this have happened? What did we do to you? Why? Why? Why? 

I held you for the longest time - still so warm from my body.  I unwrapped you and studied you carefully from your soft golden curls , your chubby little cheeks, your pretty eyelashes, rosebud lips, delicate long fingers and toes - and big feet!!! They were a surprise!  You looked for all the world just like a peacefully sleeping baby.  That Keira, was a huge comfort to me, I hoped/believed it meant you hadn't suffered and your journey home was a peaceful one.  That and knowing on your short journey here on earth that you were never alone, never felt pain, or hunger, or fear, only ever knowing warmth, nourishment and love - so much love,  is what  got me through those first agonizing minutes, hours, days and beyond. My treacherous body did not seem to realise you had gone, my breasts became painfully engorged and leaking with milk for you, along with usual birth trauma and major bruising from IV's and so many blood tests.  My arms ached so much to hold you. I cannot imagine anything more incongruous and empty than a childless post partum mother...

We know now that the pathogen we were both infected with was Golden Staph. It is commonly found in hospitals and although harmless externally it is known as a super bug internally. We don't know where it came from, why we were susceptible or why it was so aggressive.  Clearly you became ill before I did, but I had no way of knowing that. A follow up review showed that your vital signs were textbook perfect at 9.30 am that Friday morning but according to the autopsy report you were gone just over 8 hours later.  It is extremely rare antenatally in the developed world affecting less than 2% of pregnancies.  There's a sort of strange irony that statically infection was the least of our worries throughout pregnancy yet it became our biggest?  Who would ever have imagined?

Your official due date was May 15 2013 - circled in my diary in excited anticipation, I never dreamed it would actually be the day we physically parted, but somehow it seemed right.

It was a beautiful sunny day. We gave you a beautiful send off. We set you free.

Thank you for the beautiful memories we made, for choosing me to grow, nurture and love you on this brief part of your soul journey. As much as my heart aches daily for you, for us all, I also feel strangely blessed  to have travelled this journey and met some very special people along the way who have become lifelong friends. Your life and death Keira - have woven your own unique pattern into the fabric of our family. You've made us stronger, wiser, more vulnerable, more intuitive, understanding, empathetic and more able to live and enjoy each moment. Maybe that is your legacy?

So my little precious on your Second Birthday in the stars - this is my gift to you.  Your story.  Your earth song. I hope I've done you justice.

                                                                                With all my love                  

Mummy XXxx

If you require support after reading this blog please contact

Sands on 13 000 72637

Valerie O'Connor

Valerie is a kiwi girl living in Perth, married to Neil and is a devoted Mama to her three beautiful girls - Alena and Isla earth side and her youngest Keira, her angel. She is a survivor of many things including anxiety and depression, earthquakes and stillbirth. These experiences have led her on a curious and empowering journey of self discovery which she hopes will inspire and encourage others on this crazy unpredictable ride called life! 

Choosing to Celebrate Love.

Jess shares with us her thoughts on approaching her first Mother's Day as a bereaved mother.

"As bereaved mothers we have to make too many decisions that no parent should ever have to make. So let’s make a decision for us, let’s celebrate Mother’s Day, because we are mothers too."

Through all the anniversary and festive dates of our 8 month journey, I have come to learn that the lead up is always the worst. But just like every other day, you crawl into bed as night falls and you take a deep breath, and you acknowledge that you have survived another day.

We lost our Isobel just weeks before Father’s Day last year. The upcoming event didn't even occur to us until the day we needed to refill my painkillers prescription. There in the pharmacy was a nice little display of Father’s Day gifts, a table of dad-like products staring back at us. At the time I chose to ignore it, not realising how painful those 5 minutes were for my husband, until we got home and he broke down. That was the day we wondered if we would ever celebrate a special day again.

Christmas was just as hard. We thought putting up a tree would help, and we were even lucky to receive beautiful ornament gifts for Isobel. But the days leading up to it were torture, and the day itself even worst. Friends posted pictures of their baby's first Christmas. Strangers wished us a "Merry Christmas" but we couldn't even say the words in return, we weren't 'merry', there was nothing 'merry' about Christmas to us. We put smiles on for our families on Christmas Day so they could at least enjoy it without feeling guilty, but we were heartbroken inside.

Now Mother’s Day approaches and the fear lurks in my mind - how will I survive it?

I know that I am not alone in this fear. Mother’s Day is a "trigger" for thousands of mothers out there, although one of many triggers I'm sure they feel every day; for me it's the colour yellow, her songs, hearing her name called out in the supermarket. The triggers never really stop, but the Mother’s Day trigger is a big one. For a bereaved mother, Mother’s Day is a blend of numbness, disbelief and sorrow. It feels like everything in the world is reminding you of your loss, every television ad, every display in the shop window, even the sight of every mother with their child knowing they will have the chance that you won’t have to celebrate together.

As bereaved mothers we have to make too many decisions that no parent should ever have to make. So let’s make a decision for us, let’s celebrate Mother’s Day, because we are mothers too.

I recently watched a beautiful video about motherhood by American blogger Missy Lanning. It talks about what motherhood means, and to Missy it means love. And I agree. Love is the most important part of being a mother because it is there from the very beginning and it never goes away. The moment we started trying for Isobel I felt the love for our unborn child, although it took a long 3 years; my love just grew stronger. As my belly grew I remember feeling strange because I loved our child so much but I couldn't define if my love was for a girl or a boy, it was just pure love. The moment she was born I felt instinctive love of wanting to protect her, and I always will.

This Mother’s Day I will tell the world that I am a mother. I love my daughter unconditionally, a love which grows stronger each day. I worry about her, hoping she is safe. I am proud of her, and I hope she is proud of me. I feel guilt that I am not doing enough for her, or giving her enough attention. I share every moment with her. I am her mother. She is my daughter. I choose to celebrate our love on Mother’s Day, and I hope all mothers will choose to celebrate their love with their child.

Jess

If you require support after reading this blog please contact

Sands on 13 000 72637

Jess Schulz

Living in quiet beachside Adelaide, Jess is a fundraising officer for Motor Neurone Disease SA, freelance graphic designer, and social blogger. Married for 5 years (together for 12), Jess and her husband experienced the saddened loss of their first child in 2014 at 40 weeks. Their daughter Isobel Lola, passed away 6 days after she was born. A perfect pregnancy ended with a cord prolapse during labour, and now Jess and her husband are walking the road of grief while trying to survive each day without their Isobel. Love, hope and support are the essence of their survival, and Jess has chosen to share their story on Sands to hopefully support other bereaved parents walking this road too.