Grace's Journey
The moment I found out I was expecting twins was probably one of the most surreal of my entire life. 'What can you see?' said the sonographer? I didn't need to be asked, or maybe I did, I just couldn't believe this was happening to us. It was out of my wildest dreams, but it was definitely a dream come true. For a minute there we didn't even think there was one baby as the sonographer had to switch to an internal to get a clearer view! Now we knew why he needed to be clear! Two beating hearts, two babies. Identical twins. Monochorionic Diamniotic twins at 9 weeks gestation (see glossary). A dozen thoughts flooded my mind but they all seem a bit of a blur now. I wondered how this had happened to me. At 20 I can't say I knew a great deal about twins (although this was suddenly about to change), I thought the majority of twins happened to older couples, IVF patients and people who had a history of twins in their families. Well we had none. Breaking the fabulous news to our families was so much fun. People joke about the prospect of having twins all the time but it was no longer a joke and our two little bundles of pure joy were already eagerly anticipated! I also had an answer for my severe morning sickness. I was suffering from hyperemisis gravidurum and although having an answer made it no better, I had two babies to try and nourish now so I needed to work that extra bit harder at keeping something down. For 3 months solid, I barely ate or drank anything. It became very difficult trying to celebrate my twins when I couldn't lift my head off a pillow due to such severe migraines and even if I hadn't consumed anything, just to move would bring the very last contents in my body up. I gave up work. It was a no brainer. Still people sound shocked when I tell them I terminated my contract therefore not being entitled to maternity pay but unless you have suffered from hyperemisis gravidurm or carried identical twins I would ask you to walk in my shoes! Work becomes an impossibility when even if you manage to get there you can't remain on the shop floor due to sickness and hospital appointments happen to fall on every working day. It's not 2 appointments in 9 months. It can be 2 appointments weekly! That was something I loved though. Whether the reason for my appointments was because my pregnancy was so high risk or not, nothing beats seeing your babies on the ultrasounds kicking and squirming away, especially before I started to feel any movements inside, which was quite late for twins. It was always reassuring that my pregnancy was going just as we hoped. Smooth sailing. The morning sickness called it a day just before Christmas 2011. This was the first and last Christmas Ryan and I would be spending as our family of two. We had been together the previous year but we hadn't celebrated Christmas together. It was time to start to prepare for our future as a family of four. Especially providing our due date was the 24th May 2012 but twins are never expected to reach term and identical twins under NHS guidelines are delivered between 34-36 weeks gestation. We really didn't have long left, so much to do, so little time. We had to buy almost 2 of everything and wouldn't you believe just as we receive the most expensive gift known to mankind, Ryan is made redundant. He never once let me down though. He would take any days work that came his way. He would get on his bike and ride for an hour every morning and evening to pack boxes in a warehouse to get his hands on any money he could to support us. We were slowly getting closer to being ready for their arrival and we had a brilliantly supportive family that would never let our babies go without in our first time of real need. We still ended up with two very spoilt girlies. Oh yes, girls, that is what we were having, two beautiful baby girls. I thought I wanted boys, but after I came crashing back down to reality, I didn't care, I just wanted two healthy baby girls. And so the name picking began. Countless hours back and forth. Isabella and Grace. Isabella Faith Katy Lewis and Grace Indi Elizabeth Lewis. No longer just twins, no longer just two babies, they were two tiny people with their own identities.
I had several hospital stays through the duration of my pregnancy, something that I wasn't entirely comfortable with in the early days. Being only 20, it really made me feel young and vulnerable. It wasn't something I had ever gone into pregnancy imagining was going to play a big factor, my naivete told me I would have a text book, singleton pregnancy but I quickly had to grow up and do whatever I had to protect both my babies. The hospital stays were usually pretty routine for a high risk, twin pregnancy. High blood pressure, occasional spotting and eventually hypertension that needed close monitoring to make sure it didn't progress to pre eclampsia. Ryan never left the hospital grounds. He was with me beginning to end. As he couldn't stay on the women’s ward with me, he would sleep in the car. Sometimes we would wander over to the main hospital and drink coffee all night with magazines and papers until the women’s centre would call me back for another set of observations. I could always see him from my hospital bed out the window. I always felt safe and I knew then he would be the best father. He would never let anything happen to any of his girls.
The 10th of April 2012 begun like every other day with a routine appointment although it turned into my last hospital stay. 33 weeks and 5 days. My blood pressure was once again raised and I had protein in my urine. I was told to go home and pack my bag, there would be a bed waiting for me on level 6 and if my observations didn't level out there was a good job I would be in until delivery (most probably an elective caesarean). I was gutted that I was probably going to be staying in on bed rest but that is just my over compulsive behaviour. No matter how ready I was for their arrival, I just couldn't be ready enough. But time up. I was excited too, it really was drawing to an end now and their imminent arrival had been eagerly anticipated for way too long now. I had my first CTG trace that evening and that
was the last time everything appeared relatively normal.
The next 48 hours were the most crucial 48 hours of my girls lives and Grace fought the good fight right up until the very end. I had one too many abnormal CTG traces, she was trying to tell us she was ready to enter the world and I had carried both of my girls to their best weights & term. Grace's heart rate began dramatically decreasing setting off alarm bells in my head but much to my disbelief and the hospitals breech of duty they continued to pursue my pregnancy with no chance of delivery. Wednesday evening 11th April 2012, after not one normal CTG trace, I asked to be delivered for the last time and I now know the last chance of surviving my pregnancy with two baby girls. Alive. I was refused. I was refused because an ultrasound had shown two babies heartbeats with no obvious issues. The only mistake that was made by the sonographer was the recap of the weights. Only after delivery did I find out the last weights at that scan. Grace had increased in size by 8lbs. 8Lbs in less than a week. She was actually born at 16lbs heavier from the transfusion of Isabella's blood. Acute TTTS had started.
Thursday 12th April 2012 I was hooked up to the CTG machine for the second from last time. The incompetent midwife managed to record the same heart rate twice and sent me on my way. I write this from the perspective that I now know when Grace had passed but at the time although I was now concerned, never did the thought ever entertain my mind that Grace had gone. Things were no longer as simple, but my baby wasn't dead. I would go back for another CTG trace later that afternoon and Grace's heart rate would flash up on the screen. Maybe not as strong as Isabella's but of course she was still there. Maybe this time I would be delivered who knew. In the afternoon I was reviewed by the doctor. I was being discharged with a elective caesarean date for the 26th April two weeks to the day. I was being sent home with an angel baby in my tummy. I was placed on the CTG for the very last time. I requested not to be monitored by the same midwife as the morning as she was very adamant she was monitoring two babies but nobody knew my babies better than myself and I knew all along she only had Isabella. Grace was becoming very difficult to find so we put it down to that but I didn't want the same mistake being made twice. I wanted to hear two heartbeats. I was re assured it was to be a different midwife. When the trace began it was written all over the midwife's face all was not right. I was taken to the same sonographer as the night before. The sonographer laughing and joking that I was back again and that everything was fine with my babies, but this time all was not fine. As he rolled the cold jelly over my tummy. No heartbeat, Twin 1. Grace was gone. For a second I pretended not to believe it but I only had to look at Ryan's face. A consultant was frantically called and I thought desperate things. The consultant would find a heartbeat, she was just hiding. My consultant was a twin genius. He didn't find a second heartbeat and it was worryingly late to deliver my survivor with a decreasing heart rate also. Grace was already bleeding back into Isabella. Twenty one minutes later both my girls has been delivered. Grace stillborn and Isabella breathing alone at 18:41 weighing in at 5lb 9oz and 4lb 7 1/2oz. I was asked if I wished to see Grace at delivery. I declined. This is not to mean I didn't want to see her, I couldn't rest until I had seen her, but I needed time. Twenty one minutes was not enough to accept our fate, no time has helped me to accept it but after a couple of hours the reality had begun to sink in. I wanted to see her when I could move, when I could hold her tight, feel her skin against mine and when it was quiet enough that she could hear me whisper how much I loved her and how sorry I was and it just wasn't the right time on an operating table. I didn't really get a chance to see Isabella during delivery either, I saw a little face wrapped up in some blankets blowing bubbles after an excruciatingly long wait for a cry. I thought she had gone too. Her cry was like music to my ears. And then she was gone and our special care journey began.
I saw Grace again before I saw Isabella. Isabella was alive and doing well I had been told. I was also given a photograph, I'm not sure if this is normal practise after a caesarean section but it seemed like a gesture to say take your own time. Grace was perfect. Total perfection and I felt at peace with her in my arms after almost an eight month wait to meet. She was beautiful. She had lots of dark hair, fingernails and toenails and her eyes were closed where she was sleeping soundly. We had given our coming home outfit to the midwives and they dressed her in what we had before they brought her to us. We spent time as a family. Kissing and cuddling. Crying and smiling. Taking photographs as soon that would be all we had left. Handing her back to the midwives was heart breaking. It felt like she was a possession rather than a real baby. I never wanted to let her go. But she had to go and I couldn't go with her and look after her like I was supposed too. All she had was her teddy bear.
In the early hours of the morning I lifted my legs into a wheel chair and was taken to see Isabella. I felt like I was in a strange dream. Long corridors, blue lights and lots of bleeping. I had never stepped foot in a special care unit before now and I realised I wasn't eve pre warned at what to expect which I thought was pretty poor considering even if circumstances had been different a stay would have been unavoidable. There were four cots in this room, Isabella was in the far left. I was wheeled past the other cots but I don't remember even seeing another baby. Just my baby, my Isabella. So small and tied up to too many machines. Goggles over her eyes so she couldn't see me either. I just hoped she could hear me and feel me slipping my finger into her tiny hand. I'm not sure how long we stayed for, we stayed until the point of exhaustion and then I had to reside back to recovery suite.
Isabella remained in the special care units in total for three weeks. She graduated from intensive care within a day and went on to the high dependency unit and low dependency unit to feed and grow. They were the most emotionally confusing few weeks of our entire lives. Trying to celebrate the life of our survivor whilst grieve our loss. It is an impossibility and I still don't think we have fully come to terms with our outcome. We will never stop grieving. To be told we were lucky, we certainly didn't feel lucky. Writing funeral invitations and having to leave our daughters cot side to meet with funeral directors when we should have been sat by two cots. Splitting time between sneaking a cuddle with our Grace whenever we could to come down and watch our survivor thrive. I never wanted to get out of bed. I prayed so hard that if I just pulled the covers over my head I would wake up from this evil nightmare.
We waited to lay Grace to rest until Isabella came home from the hospital. A month from birth. There was no way in this world we would of held her sister's funeral without her being there. One chance to be in the same room as each other. To see them side by side, dressed in their identical coming home outfits. It was as perfect as it could be. And it is a memory we can always share with Isabella. Ryan carried her tiny white coffin scattered with butterflies in and out of the church to Wishing On A Star and Amazing Grace. She will always be our Amazing Grace. She taught us to love from a place inside that we never knew existed.
Living without Grace has made me question everything I have ever believed in, I was no longer sure whether I wanted to believe in a God that took away my baby. Watching Isabella day by day trying to picture what it once would of been like with the two of them. The attention Isabella receives from passers by, what if there was two? What if? That's a question I will ask myself everyday.
I had several hospital stays through the duration of my pregnancy, something that I wasn't entirely comfortable with in the early days. Being only 20, it really made me feel young and vulnerable. It wasn't something I had ever gone into pregnancy imagining was going to play a big factor, my naivete told me I would have a text book, singleton pregnancy but I quickly had to grow up and do whatever I had to protect both my babies. The hospital stays were usually pretty routine for a high risk, twin pregnancy. High blood pressure, occasional spotting and eventually hypertension that needed close monitoring to make sure it didn't progress to pre eclampsia. Ryan never left the hospital grounds. He was with me beginning to end. As he couldn't stay on the women’s ward with me, he would sleep in the car. Sometimes we would wander over to the main hospital and drink coffee all night with magazines and papers until the women’s centre would call me back for another set of observations. I could always see him from my hospital bed out the window. I always felt safe and I knew then he would be the best father. He would never let anything happen to any of his girls.
The 10th of April 2012 begun like every other day with a routine appointment although it turned into my last hospital stay. 33 weeks and 5 days. My blood pressure was once again raised and I had protein in my urine. I was told to go home and pack my bag, there would be a bed waiting for me on level 6 and if my observations didn't level out there was a good job I would be in until delivery (most probably an elective caesarean). I was gutted that I was probably going to be staying in on bed rest but that is just my over compulsive behaviour. No matter how ready I was for their arrival, I just couldn't be ready enough. But time up. I was excited too, it really was drawing to an end now and their imminent arrival had been eagerly anticipated for way too long now. I had my first CTG trace that evening and that
was the last time everything appeared relatively normal.
The next 48 hours were the most crucial 48 hours of my girls lives and Grace fought the good fight right up until the very end. I had one too many abnormal CTG traces, she was trying to tell us she was ready to enter the world and I had carried both of my girls to their best weights & term. Grace's heart rate began dramatically decreasing setting off alarm bells in my head but much to my disbelief and the hospitals breech of duty they continued to pursue my pregnancy with no chance of delivery. Wednesday evening 11th April 2012, after not one normal CTG trace, I asked to be delivered for the last time and I now know the last chance of surviving my pregnancy with two baby girls. Alive. I was refused. I was refused because an ultrasound had shown two babies heartbeats with no obvious issues. The only mistake that was made by the sonographer was the recap of the weights. Only after delivery did I find out the last weights at that scan. Grace had increased in size by 8lbs. 8Lbs in less than a week. She was actually born at 16lbs heavier from the transfusion of Isabella's blood. Acute TTTS had started.
Thursday 12th April 2012 I was hooked up to the CTG machine for the second from last time. The incompetent midwife managed to record the same heart rate twice and sent me on my way. I write this from the perspective that I now know when Grace had passed but at the time although I was now concerned, never did the thought ever entertain my mind that Grace had gone. Things were no longer as simple, but my baby wasn't dead. I would go back for another CTG trace later that afternoon and Grace's heart rate would flash up on the screen. Maybe not as strong as Isabella's but of course she was still there. Maybe this time I would be delivered who knew. In the afternoon I was reviewed by the doctor. I was being discharged with a elective caesarean date for the 26th April two weeks to the day. I was being sent home with an angel baby in my tummy. I was placed on the CTG for the very last time. I requested not to be monitored by the same midwife as the morning as she was very adamant she was monitoring two babies but nobody knew my babies better than myself and I knew all along she only had Isabella. Grace was becoming very difficult to find so we put it down to that but I didn't want the same mistake being made twice. I wanted to hear two heartbeats. I was re assured it was to be a different midwife. When the trace began it was written all over the midwife's face all was not right. I was taken to the same sonographer as the night before. The sonographer laughing and joking that I was back again and that everything was fine with my babies, but this time all was not fine. As he rolled the cold jelly over my tummy. No heartbeat, Twin 1. Grace was gone. For a second I pretended not to believe it but I only had to look at Ryan's face. A consultant was frantically called and I thought desperate things. The consultant would find a heartbeat, she was just hiding. My consultant was a twin genius. He didn't find a second heartbeat and it was worryingly late to deliver my survivor with a decreasing heart rate also. Grace was already bleeding back into Isabella. Twenty one minutes later both my girls has been delivered. Grace stillborn and Isabella breathing alone at 18:41 weighing in at 5lb 9oz and 4lb 7 1/2oz. I was asked if I wished to see Grace at delivery. I declined. This is not to mean I didn't want to see her, I couldn't rest until I had seen her, but I needed time. Twenty one minutes was not enough to accept our fate, no time has helped me to accept it but after a couple of hours the reality had begun to sink in. I wanted to see her when I could move, when I could hold her tight, feel her skin against mine and when it was quiet enough that she could hear me whisper how much I loved her and how sorry I was and it just wasn't the right time on an operating table. I didn't really get a chance to see Isabella during delivery either, I saw a little face wrapped up in some blankets blowing bubbles after an excruciatingly long wait for a cry. I thought she had gone too. Her cry was like music to my ears. And then she was gone and our special care journey began.
I saw Grace again before I saw Isabella. Isabella was alive and doing well I had been told. I was also given a photograph, I'm not sure if this is normal practise after a caesarean section but it seemed like a gesture to say take your own time. Grace was perfect. Total perfection and I felt at peace with her in my arms after almost an eight month wait to meet. She was beautiful. She had lots of dark hair, fingernails and toenails and her eyes were closed where she was sleeping soundly. We had given our coming home outfit to the midwives and they dressed her in what we had before they brought her to us. We spent time as a family. Kissing and cuddling. Crying and smiling. Taking photographs as soon that would be all we had left. Handing her back to the midwives was heart breaking. It felt like she was a possession rather than a real baby. I never wanted to let her go. But she had to go and I couldn't go with her and look after her like I was supposed too. All she had was her teddy bear.
In the early hours of the morning I lifted my legs into a wheel chair and was taken to see Isabella. I felt like I was in a strange dream. Long corridors, blue lights and lots of bleeping. I had never stepped foot in a special care unit before now and I realised I wasn't eve pre warned at what to expect which I thought was pretty poor considering even if circumstances had been different a stay would have been unavoidable. There were four cots in this room, Isabella was in the far left. I was wheeled past the other cots but I don't remember even seeing another baby. Just my baby, my Isabella. So small and tied up to too many machines. Goggles over her eyes so she couldn't see me either. I just hoped she could hear me and feel me slipping my finger into her tiny hand. I'm not sure how long we stayed for, we stayed until the point of exhaustion and then I had to reside back to recovery suite.
Isabella remained in the special care units in total for three weeks. She graduated from intensive care within a day and went on to the high dependency unit and low dependency unit to feed and grow. They were the most emotionally confusing few weeks of our entire lives. Trying to celebrate the life of our survivor whilst grieve our loss. It is an impossibility and I still don't think we have fully come to terms with our outcome. We will never stop grieving. To be told we were lucky, we certainly didn't feel lucky. Writing funeral invitations and having to leave our daughters cot side to meet with funeral directors when we should have been sat by two cots. Splitting time between sneaking a cuddle with our Grace whenever we could to come down and watch our survivor thrive. I never wanted to get out of bed. I prayed so hard that if I just pulled the covers over my head I would wake up from this evil nightmare.
We waited to lay Grace to rest until Isabella came home from the hospital. A month from birth. There was no way in this world we would of held her sister's funeral without her being there. One chance to be in the same room as each other. To see them side by side, dressed in their identical coming home outfits. It was as perfect as it could be. And it is a memory we can always share with Isabella. Ryan carried her tiny white coffin scattered with butterflies in and out of the church to Wishing On A Star and Amazing Grace. She will always be our Amazing Grace. She taught us to love from a place inside that we never knew existed.
Living without Grace has made me question everything I have ever believed in, I was no longer sure whether I wanted to believe in a God that took away my baby. Watching Isabella day by day trying to picture what it once would of been like with the two of them. The attention Isabella receives from passers by, what if there was two? What if? That's a question I will ask myself everyday.
