After a crazy year in 2009/2010 living between both sets of parents with a four year old and a new baby, in April 2010 we finally moved into our brand new home.
Indiana turned one and we celebrated with a big party. At her party we were showing some family around the house and when they walked upstairs they said “Oh wow you have a spare room for another baby”. Saxon and I both jumped in rather quickly and said “our family is complete, we’re done”
It took two and a half years of IVF and a tumultous time for a our marriage to get Indiana and then a very stressful pregnancy where she attempted to get out at 23 weeks. Thankfully she arrived at 38 weeks nice and healthy.
Fast forward to May 2010 and I turned the big 3-0. I partied in style and got nicely inebriated (a few nights in a row). Little did I realise that this is not conducive to keep the mini pill working. (N.B. I was on the mini pill as I was still breastfeeding Indiana. Never fear I didn’t drink and feed, that’s what expressing is for!!)
At thirteen months Indiana woke up one day and when I put her to the breast she promptly spat it out and screwed up her face. I tried again and got the same reaction. That was the end of our breastfeeding days and I was devastated.
In June we employed a Nanny to start work as I was going back to work four days a week after sixteen months of maternity leave to a brand new boss at the job I loved. I had been feeling sick the week the new nanny arrived and one night I realised my period was late (not unusual for me but because I was tired and slightly unwell I thought I’d do a test).
I peed on a stick and got in the shower whilst my husband was downstairs making dinner with the nanny. I got out of the shower and looked ta the testa nd nearly fell over when the darkest two lines I’d ever seen were staring back at me. No wonder Indiana had refused the breast I was pregnant and heard it changes the taste of milk.
I was beside myself with excitement and sheer panic as we had decided our family was complete. So I did what any normal woman would do, I called my best friend. I think she passed out when I told her. She was quiet for a very long time. I decided with my husband having a very important board meeting coming up at work that I’d have it properly confirmed before I told him.
The next day I had blood work which confirmed I was not only pregnant but the levels were very high. The day after I visited my IVF specialist who was my obstetrician who did an ultrasound and confirmed yes, I was five weeks pregnant.
That night I cooked my husband a beautiful meal and sat down to tell him the news. He stopped eating and went and laid on the floor and didn’t speak for at least an hour. I thought this was a positive sign, he could be crying, or laughing or yelling but no he was utterly silent for a man who always had words. We kept looking at eachother and saying two kids under 21 months plus a five year old, what were we thinking?
Two days later I was out with my best friend and started feeling unwell and crampy. I went to the bathroom and had quite a big bleed. I called my Dr who advised me to get into bed and see him tomorrow. The next day he found a large heamorrage in the placenta. It was huge in comparison to the yolk sac. It would be two weeks before we would know if the pregnancy was viable before he could see a heartbeat.
So off I went to my first day of work.
After a lengthy two week wait I went back to my Dr. I was so anxious that I couldn’t stop wriggling. He said “If you don’t stay still I can’t check properly”. My response was “I just want to know there’s at least one healthy baby in there”.
He looked at me strangely and continued doing the ultrasound and then started smiling and then stopped. He sat me up and told me that it’s twins, there’s two heartbeats but I’ll probably need to have them aborted as they share a sac.
I was elated and devastated all at once. I went to the car and sobbed. I was seven weeks pregnant with identical twins and I had to have an abortion because it wasn’t likely they’d survive.
After some serious research, we decided to change Drs and go to our big public hospital. We scheduled an extensive ultrasound with the specialist and found that were carrying monochorionic-diamniotic twins. This means two babies, one placenta, two sacs. Our original Dr was concerned that our babies were monochorionic-monoamniotic twins (two babies, one placenta, one sac – where the babies can get twisted in their ubliical cords which can be fatal).
We were told it’s the second highest risk pregnancy that you can have. This is because the babies share a placenta and they are at risk of a condition called, Twin-To-Twin-Transfusion-Sydndrome (TTTS). This is where the blood vessels get a bit confused and one baby gets lots of nutrients and the other baby doesn’t get enough.
We were told we would have fortnightly scans unless they saw an issue and then it would be more frequent but most identical twins are born early because of this condition. Our paediatrician told me if I got to 28 weeks he’d kiss me. Twenty eight weeks became my goal.
At 13 weeks pregnant I woke to a pain in my chest. I drove myself to my local hospital and after a series of ECG’s they sent me home and said I was fine. Two days later I went for my regular obstetrician appointment and everything suddenly got scary. I ended up hospitalised for a week witha virus around my heart.
During this stay I had my 13 week ultrasound and not long after a genetic counsellor turned up in my room and I immediately knew my results were less than perfect. We were told we were at a high risk of the worse genetic abnormality and because the twins were identical they’d both have it. I was devastated.
By this stage my belly was huge, I looked about 20 weeks preganant and I could feel the babies moving all the time.
I opted for an amniocentesis to be sure, as it was safer for the twins than a CVS. During the procedure the specialist was concerned that we had early onset of TTTS as the twins size was a bit different. Because of the early bleed I had on the placenta we had to wait fourteen days for the results.
I was so overwhelmed with anxiety I could barely answer the phone. We were relieved to find out that our babies were fine and I was told to relax and enjoy the pregnancy. Sure, I can just enjoy one of the highest risk pregnancies you can have with two other children, a husband and a job.
At our next scan our specialist ruled out TTTS as the size of the twins was very close. So I started to breathe again.
At 25 weeks + 5 days we had another scan and the girls were measuring 750grams and 770grams pretty much as close as you can get. They were so adorable, they kept touching each other and making sure they were close by at all times. I remember thinking, wow, these two little people are going to be inseparable when they’re born and I can’t wait. I was so proud telling people I was having twins. We were going to have a five year old and three little people under 21 months. It was going to be busy and fun all at the same time. I couldn’t wait.
That weekend I went to the zoo with the kids and my parents. It was a beautiful weekend and the twins were happily playing in my belly.
A few days later on Thursday 10th November I was at work busily preparing for our international VP to come into the office for a few days of meetings. Earlier the previous day I had thought the twins were being very quiet in my belly but put it down to it being a very hot and busy day.
I had a meeting with my bosses wife at 10am. I was actually getting a little worried that the twins seemed quiet today as well. I went to my 10am meeting and only managed about an hour until I requested my colleague take me back to the office as I was pretty sure I was having contractions.
I called my Dr when I got back to the office and by this stage I was getting a little stressed as I wasn’t really able to feel twin 2 move and twin 1 wasn’t so active. My Dr (Sarah) who was also pregnant with her 4th baby told me to come in immediately. I’ll be honest, I was scared and I also realised at that the moment I entered the hospital I knew I wasn’t leaving until the babies were born. So, I tidied up my desk and handed over my job to the new girl. By the time I got to the hospital (I drove myself there) it was around 2pm and my contractions were 5 mins apart and hurting.
Sarah did an ultrasound straight away and because I have had SO many ultrasounds as soon as I saw it I knew something was wrong. Twin 2 had a massive amount of fluid around her. This is called polyhydramnios. Twin 1’s fluid was deteriorating around her and this is called oligohydramnios. Immediately I knew this was Twin to Twin Transfusion Syndrome.
I was 26 weeks and 4 days and every moment counts. This was the day our girls got their first names of Polly and Olly. All the nurses and Dr’s referred to them as this but I was still convinced they were boys at this stage. Deep down I was praying for girls as I knew girls were stronger than boys when it comes to prematurity.
Thankfully Saxon arrived at the hospital and Sarah explained to us how serious this was and that I would not be going home until the babies were born. The plan was to try and keep them baking until 28-29 weeks and then get them out. I was given steroids to try and develop their lungs and plenty of drugs to stop my contractions, which just knocked me out until they wore off and the next wave of contractions started again.
I was monitored very closely – I was not allowed to get out of bed unless it was to use the bathroom. I was moved to a room later that night.
The next day it was decided I would have regular ultrasounds as well as constant heart monitoring of the babies. This was extremely frustrating as it was very difficult for the nurses to get an accurate trace on the babies hearts. What would happen is they would get one of the twins and then the other one would kick the trace off.
So, up to ultrasound I went and the fluid had not increased around Polly nor had it decreased around Olly. We were still sitting at Stage one twin to twin transfusion syndrome which made me feel a lot better. Basically if it gets to Stage three you have a matter of hours before you will lose one or both of the babies. But some twins can sit at stage two or three comfortably for a few weeks. Stage one was good, they were both active even though I couldn’t really feel Polly too much. It was comforting to know we were very well looked after.
I was given a second shot of steroids and it wouldn’t be worthwhile unless I could keep the babies in till 5.30pm on Saturday. I was determined to keep them in until 28 weeks as I knew that was a very magic number.
On the weekend of 12th/13th November I was moved everytime I had contractions back up to the delivery ward, given more drugs, waited for them to settle, checked the babies hearts were okay and then moved again to my room in maternity. To be honest I was really getting over it. I was so happy that I made it to Saturday 5.30 pm as that meant the babies were now steroid covered.
On Saturday afternoon I complained that I wasn’t feeling Olly (Twin 1 – Charlize) moving very much. This worried me as she had limited fluid around her and I should be able to feel her. The nurses didn’t seem concerned.
On Sunday early evening something changed, my uterus became very irritated and I was contracting every 2 mins from about 7pm through to 3am. I was completely exhausted and very emotional. I still wasn’t dilating so this was a good sign. More drugs and trying to get some sleep …….
After an exhausting evening, I was finally moved back to maternity around 5am on Monday morning and I managed to have a bit of a rest. I was suprised at 8.30am when Saxon came in for a visit. Of course he used me for an excuse to get out of work! Just after he arrived a porter arrived to take me down to ultrasound.
Whilst waiting in ultrasound I received a phonecall from my friend Melanie. We were chatting away and I promised to call her back after the ultrasound…..well that call never happened. Later that day she sent me a text saying “now I know why you didn’t call me back”.
I was lucky enough on this particular day to not only have Saxon by my side but a Professor from Randwick Womens Hospital was visiting Royal North Shore on this day and my obstetrician (Sarah) and the ultrasound technician asked her to look at the ultrasound.
I noticed they all looked quite serious and were going over and over one of the babies heart. I remember asking her a question and she snapped at me and told me she needed quiet. I actually nearly burst into tears.
The ultrasound took well over an hour. Then we were put in a small room and asked to wait for them. I heard Sarah call the NICU (Neonatal Intensive Care Unit) and ask them how many beds they had available. I heard the Professor calling her boss. I turned to Saxon and said “I think we are having our babies today”
Sarah and the Professor finally came back into the room. They explained that the twins now had Stage 3 Twin to twin transfusion syndrome and that Polly’s heart (twin 2) was not beating as it should due to the excessive strain being caused on it.
Basically Twin 1 transfers a massive amount of blood and fluid through the placenta to Twin 2. This is why twin 2 has lots of fluid around her and twin 1’s keeps reducing. This then affects urine output, kidney function and of course heart function. Twin 2 is usually the twin that does not survive if this progresses any further.
They were considering transferring me to Randwick to do laser surgery and try and keep the babies in longer but because I was over 26 weeks (I was now 27 weeks plus 1 day) it was too dangerous and both babies could be lost if this process is attempted at this gestation.
They decided the safest thing to do was an emergency c-section as soon as possible.
Although we were kind of expecting this I was still in shock. My hands started shaking and I started getting teary. Thankfully Saxon was there to hold my hand.
I was moved to the delivery ward whilst we waited for a theatre to become available. There is a protocol when having such premature babies that the theatre adjacent to the NICU has to be used so we had to wait for that to be emptied and prepped for us.
Meanwhile my room turned into a circus. At one stage I had four staff attempting to find our babies heartbeats. It was imperative that they were monitored in case twin 2 went into distress. They actually gave up trying as they kept picking up mine and one of the babies kept kicking it off. I think they were a bit tired of being poked and prodded. The room filled with all sorts of drs and nurses. We called both our parents and told them that the babies would arrive soon.
I was then asked to walk across the hallway to the theatre to have my epidural put it. On my way down the corridor I walked past Dr Mary (who was the Neonatologist) who was briefing the NICU team for the twins arrival. There was one dr and three nurses for each baby. I heard Mary telling them how fragile the babies were. I had two obstetricians who each had an assistant and in total there was approximately 25 people in the room.
I was sitting on the bed waiting for the dr to put my epidural in. I could still hear Mary briefing her team when I just broke down and started sobbing. I felt really sorry for the dr putting the needle in my back but the emotions just flowed. I had this amazing nurse who got me to do some visualisation and calmed me down. Within moments I couldn’t feel anything and then finally Saxon arrived and was at my side again wiping my tears away.
Both Orlando and Indiana were born by c-section. Orlando’s was an emergency (that was actually a planned c/s until he decided to arrive early) and Indiana’s was elective. Both times the atmosphere was different but in here it was like you couldn’t breathe. The room was thick with anticipation as no-one really knew how the twins were going to be.
On the 14th November at 3.24pm the dr pulled up twin 1, she gave a tiny squeal before she was ventilated. If you weren’t paying attention you wouldn’t have heard it. But I remember it clearly. I knew the twins would be tiny but wow she was so very small and perfect. She was quickly whisked to the resuscitation table and then all I saw was Dr Mary giving orders and her team trying to keep my little baby alive.
At 3.25pm one and a half minutes after her sister arrived, twin 2 was pulled out with a splash. The amount of fluid around her when broken actually flooded the floor and ruined the drs shoes. This tiny little person let out a much louder squeal. She actually sounded like a kitten and really was as small as a kitten. She was whisked to the next resuscitation table.
Then what seemed like hours we waited and waited some more. Our girls were given surfactant which was to help their lungs. They were wrapped in plastic to keep them warm. They were ventilated as they were unable to breathe on their own. Charlize was given a blood transfusion as she was severely anaemic. They were given life saving interventions whilst we waited and watched.
Finally a nurse came over and told us they were fragile but looking good. They both breathed on their own at birth which was already a miracle. I asked what sex they were. Of course no one had checked because the main thing to do is keep them breathing when they are this little. She asked me to guess whilst she went to check.
I said girls and yes she came back with a huge smile, we had little girls. And so it was that Twin 1 became Charlize Ersilia Stephens (weighing 749 grams) and Twin 2 became Lucia Vera Stephens (weighing 802 grams). The girls were whisked next door into the NICU and the team finished sewing me up and moved me and Saxon together into a room in delivery.
We were so excited that we had two little girls. Identical girls. How fun it would be to dress them up the same and trick people with their identity because they were so alike. We were going to go home and be a family of six with Orlando being a wonderful big brother to three little girls all under the age of 18 months …. wow!! I needed a cup of tea. Even though it was hospital tea it tasted amazing.
Saxon and I had decided a few days earlier that we didn’t want to risk infection with the girls so we wouldn’t take any family or friends into the NICU until the girls were stronger. It would only be us with them.
I was wheeled in to see my lovely girls a few hours later when they stabilised them both. I was wheeled up next to Lucia’s humidicrib and Charlize was on the other side of her. Lucia was wearing the coolest sunnies as she was under the special lights due to her having severe jaundice. She was so red in colour due to the amount of blood transferred in-utero. At one stage they were considering draining some of her blood to reduce the stress on her heart but she managed to sort herself out on her own. I got to see Charlize briefly as they were still doing things to her. When she was born her head was bent in an awkward shape because of my tiny pelvis and so they found it difficult to put her ventilator tube in. It took a little while but she straightened her neck out on her own. She was very pale as she didn’t have the required amount of blood which was why she had a transfusion. But our girls were gorgeous. I was only with them a short time as I started feeling very unwell after the surgery.
My Mum and Dad and brother and sister arrived and were so very excited about our new arrivals. I felt bad that they couldn’t see them but we wanted to protect the girls until they were a bit stronger.
Hindsight’s a great thing isn’t it? If I had my time over again I’d let my family go in and meet our girls together side by side in the NICU and have photos with them, lots of photos and be smiling and happy that our girls were here with us. But we do what is right for us at the time.
We said goodbye to my family and Saxon also went home. I was taken to a private room in maternity and I went to sleep dreaming of my beautiful precious baby girls and how lucky I was to have had twins and have four beautiful children.
The next day, Tuesday 15th NOvember, Lucia was no longer under lights and they were happy with all her levels. Charlize was wriggling around more now and her neck had straightened up. She was still quite anaemic but they were happy with how both girls were progressing. We knew the first 48 hours were the worst and that these were all good signs.
I knew the best thing I could do was keep expressing milk for my little babies which they would start receiving very soon to fatten them up.
We spent a lovely afternoon with the girls and headed back to my room for dinner and then Saxon went home to be with Orlando and Indiana. After dinner I remember talking to my beautiful bestie Michelle on the phone and I’m sure she will remember how excited I was to have two perfect little girls that were doing well.
About half an hour after I spoke with Michelle I was sitting on my bed watching some TV when I heard high heeled footsteps walking rapidly down the corridor. My room was at the end of the corridor and I just knew those footsteps were coming to my room.
Dr Mary knocked on the door. I knew this wasn’t good. She told me that when she was doing her rounds at 4pm the nurse told her how Charlize had suddenly become quiet and her temperature had dropped.
When you and I get an infection our temperature increases but for a premature baby it is the opposite. They started running tests as she was deteriorating rapidly. They started her on anti-biotics and she was re-ventilated. They had been working on her for about 4 hours and she didn’t seem to be getting better. Mary explained they had tried three different types of anti-biotics and she wasn’t responding. She suggested I call Saxon and get him into the hospital asap. She gave me a hug and told me she’d see me up there.
I had the most adorable nurse that night. I can’t remember her name but I remember her face. She put me in a wheelchair and held my hand and took me up to see my baby girl.
As soon as I saw her I knew she was very sick and her body could not fight any longer. You could hardly move around her humidicrib as there was so much medical equipment around her keeping her alive. I felt crushed and shocked and I didn’t believe this was really happening. I looked at the xrays and ultrasounds with Mary very calmly and I knew what she was saying. I called Saxon and told him to drive faster.
The look on the faces of the other parents in the NICU said it all. They were cuddling their babies as close as they could and most of them had tears in their eyes. When a situation like this occurs in the NICU the social worker tells the other parents in the room so they can choose to leave should they wish. There are only 8 babies in the NICU and two of them were mine and you get to know those other parents very well so when something like this happens it’s devastating.
The dr’s and nurses gathered around Charlize spoke to me in hushed voices and their eyes were red from crying. I just knew this could not turn out the way I wanted.
Finally Saxon arrived. We were given big blue reclining chairs and once again Mary explained what was happening to Charlize. They could only assume it was a severe infection as they had tried absolutely everything possible and she was not responding. Her little body was tired and could not fight any longer.
I wanted to desperately hold her. Regina was Charlize’s nurse that night. She was in the theatre when the girls were born and took delivery of Lucia. Regina was the most beautiful nurse with the most gentle nature.
She delicately removed Charlize’s ventilation tubes as her skin was very fragile and she didn’t want to hurt her. She took all the monitors off her and wrapped her in a fluffy cream blanket and put a lovely pink bonnet on her head. She put her in my arms and I could no longer hold back the emotions. I sobbed and sobbed. I held her close to my heart so she could feel me. I gave her to her Daddy for a cuddle and the tears flowed freely down his face.
We had her baptised and the staff were so wonderful arranging everything for us.
I had asked my sister Kathryn and my best friend Hilary to come to the hospital to meet her. I had also called my parents and asked them to come but I knew how difficult this could be for them. When I was only 18 months old my Mum gave birth to my little sister, Danielle, who was born at 26 weeks. She only lived for 9 hours.
Saxon had called his parents and asked them to come and meet their grand-daughter.
We were moved to “the quiet rooom”. It was a room filled with comfy chairs and too many tissue boxes.
I introduced Charlize to her aunty Kathryn and her aunty Hilary and they both held her and cried and talked to her. Saxon’s parents also arrived and held her. When my Mum and Dad arrived I was so relieved. I really wanted them there. I handed Charlize to her Nanny and I could see on my parents faces the love and hurt they had for Charlize and for me. Mum and I sat and cuddled her.
The eight of us talked to her and kept her comfortable and warm. I wanted her to know that she was absolutely surrounded by love.
At 10.55pm on Tuesday the 15th November 2011, Charlize Ersilia Stephens took her last breath, after 32 hours of fighting so hard, in Mummy’s arms. She looked like a perfect little baby peacefully asleep being rocked by her Mummy.
The rest of that evening is a blur. I was given a beautiful patchwork quilt for Charlize earlier in the evening which I wrapped her in. I kept it and have slept with it since. If I try really hard I can smell her on it.
I remember only waking up the next morning really disturbed by the dream I thought I had, but when I tried to open my eyes I realised they were swollen and Saxon was lying in the room next to me. Unfortunately it was no dream, it was our reality that we now had to work out how to live with. The heaviness in my chest. The physical pain in my heart that has never gone away. It feels like part of my body is missing and I have only just learnt how to adapt to the change.
I knew now that I must fight with all I had to make sure Lucia survived, that Lucia came home to her family. I can’t tell you the panic that set in the next day when we went to the NICU to see Lucia and she had been put on the ventilator again. We were told late in the evening she started struggling and they didn’t want to push her so they were letting her body rest. The nurses believed that she had felt the pain of losing her soul mate as they saw this particular behaviour quite often in twins, especially identical twins. They just wanted to comfort her and let her recover from the shock of losing her sister. She was put on antibiotics as a preacaution as they still had no idea what had happened to Charlize.
It was extremely distressing standing at Lucia’s humidicrib and seeing Charlize’s completely empty, waiting for a new baby. From that moment on I stood with my back to bed 7 and I refused to speak to any parent whose baby was put in that crib.
A few days after we lost Charlize twin boys were born at 22 weeks. They were half the size of my girls. One died at birth and the other precious little boy fought hard for a day but couldn’t fight any more and once again bed 7 was empty.
A week after that, twin boys arrived at 24 weeks from the Central Coast. One little boy Tyler was put in bed 7 and the other Tristan in bed 2. Tyler fought hard for a week but could fight no more. That day I watched his parents faces as they went through exactly what we had been through only weeks before and I knew instantly that I would be friends with his mother. Sharon and I became inseparable in the NICU as we understood what the other was going through and we were determined to take one baby home.
Not long after Sharon lost Tyler, bed 7 received a new resident. Becky, she arrived at 27 weeks and was a little fighter. Her Mummy had kept her baking for 18 days after her waters broke and that was a miracle all on it’s own. To be honest I had never seen a mother look so glamorous after having a baby. Her Mummy was all style 🙂 These two Mummies and I became best of friends, we cried with eachother when the babies took a step back and we celebrated with eachother when the babies took a step forward. We had our favourite nurses and we had the ones that weren’t our favourites. We expressed milk together and had our lunch together and got very exhausted together.
At the end of the day we all went home with a baby in our arms and Tristan, Becky and Lucia are all thriving.
Not a day goes by that Sharon and I don’t think about Tyler and Charlize and we believe they are up in heaven playing with eachother.
The day after we lost Charlize the pathologist called Dr Mary and told her that Charlize had contracted Group B Strep. For those who have had babies you would know that at about 36 weeks pregnant a swab is done to test you for this. I was swabbed on three different ocassions, twice before I had the girls and once after. In addition, my placenta was sent to pathology and put through the wringer. All tests came back that I was negative to Group B Strep. The strain that Charlize had was so agressive that it cultured in only four hours. To this day Dr Mary and I both bang our heads not knowing where it came from. We are forever thankful that Lucia did not contract this nasty infection as well as our story would be very different today. Saxon and I don’t blame anyone or anything for what happened to our little girl. We believe that she gave Lucia everything she needed to be the fittest and survive the rollercoaster that is prematurity.
We are very blessed that our girls were identical as we get to see how Charlize would’ve looked as Lucia grows up. Sure, they would’ve had differing personalities but I will always remember Charlize’s amazing dark eyes and the first time I held Lucia when I looked into her little face staring back at me was Charlize’s beautiful eyes.
Our beautiful little girl will live on in our hearts forever and ever and I am truly blessed to have shared 27 weeks and three days with such a strong little angel.
So, today seventeen months after losing Charlize, my heart is filled with so much love but it is very heavy with sadness. There was a time not long ago that both my little girls could see eachother, feel eachother and were breathing next to eachother both fighting for their lives and I had four children here on earth with me.
Charlize is the reason I’m writing this blog and she and my other children are the reasons that I smile every day and hold my head up high, forever proud of my beautiful family who have been through so much.
Sometimes you will never know the true value of a moment until it becomes a memory.