‘Connor and I focused all our energies on Charlotte. We were now a family of three. I struggled with the mornings and evenings and often wandered around the house feeling lost and empty. One morning before visiting Charlotte, I finished off glossing the woodwork. I basically glossed anything in sight. Unfortunately this also included the polished copper radiator tails. When Connor found out about this, he was livid. I was oblivious to how much he loved the copper look, presumed they were unfinished and slapped some paint on them. He is still upset if I bring it up now and can’t believe I did it. I apologised.
My mind obviously wasn’t thinking straight. In fact, I had no idea where my mind was at. Away from Charlotte, I lived on autopilot, lost in a bad dream where I was unable to escape the cold, dark fog that frequently enveloped me.
When I was with Charlotte, the fog lifted. I spent most of my day with her. I’m not sure Charlotte will ever know how grateful I am to her for getting me through each day, especially the darkest.
Life at St James‘s
The ward sister had been right about St. James‘s; it was a lot more homely and hands on than the neonatal unit at Leeds General Infirmary.
On the day that we arrived, I looked around in shock. Charlotte’s room was quieter than in the LGI and seemed to have a relaxed and calm atmosphere. I looked at the other two babies in her room and they were much bigger and had fewer wires attached to them. One of the babies was in a wooden cot which looked like it was Victorian. The other baby was in one of the wheelie, plastic cribs. Neither baby relied on any breathing tubes. I watched as a young dad picked his son up and walked around the cot with him. It was something so natural and simple, I found it hard not to stare. I had been waiting for two months to be able to do that with Charlotte and due to the ventilation she was on, I still wasn’t able to. My arms longed to pick her up and cradle her. To this day, I still cherish the feeling of lifting Charlotte out of her cot. The freedom of being able to do this, free of tubes, free of asking permission has still not left me.
As I walked down the neonatal corridor, getting to know my new second home, I saw many mothers breastfeeding or tube feeding their babies, chatting happily to the mother next to them or cuddling their baby whilst relaxing in an armchair and immersed in a book. I couldn’t wait to embrace all of this with Charlotte. It felt like a different world. A world of motherhood.
As I reached the last room at the end of the corridor, Room 1, there was a large cot with twins lying in it. I felt like I had been punched in the stomach, unable to take my next breath. There was only one set of twins on the ward at that time and I felt nervous walking past their room, nervous to see and hear the parents interacting with both of their babies and nervous to see the twins interacting with each other. It was something I wanted more than anything else in the world and it had been taken away from me. Despite not wanting to look or hear I also felt drawn to the twins or any sets of twins that I met. My eyes wanted to stare and my ears longed to hear their interaction. This painful curiosity has never left me.
That afternoon I overheard the nurses discussing that another set of twins were due to arrive on the ward. I felt sick and anxious while hearing this. I plucked up the courage to ask if what I had overheard was correct. I spent the next five and a half weeks unable to escape my anxieties about seeing twins, especially twin girls. At one point there were twins in every room except for Charlotte’s. I was grateful to the hospital staff who were mindful and tried their hardest to keep twins in different rooms.
Over the next few days, I began to find my feet at St. James’s and adapt to our new way of life. I had many questions about all the things I had seen the mothers doing when I had explored the ward. The nurse explained about Family Integrated Care (FICare), which the ward incorporated into their practice.
I had spent the best part of two months asking for permission to do anything with Charlotte and Esme, even just if it was ok to open the incubator window and hold their hands. I yearned to do everything that was included in the Family Integrated Care. It included all the little things that I imagine I might have taken for granted if I hadn’t been initially denied them. Things such as lifting Charlotte up, changing her nappy, getting her dressed, changing her incubator or cot sheets and feeding her.
The FICare gave me the opportunity to do all the things which I had craved to do as a mother, to embrace my maternal instinct and to feel like a Mummy. I felt my days were filled with doing ‘Mummy jobs’, cuddles and reading stories. It was an insight into what my life might be like if I could take my baby home.
Meeting other Mums
At St James’s I sensed that there were greater opportunities to meet other mums. I felt quite a newbie at first, like it was my first day of school all over again. All the other Mums seemed to have their routines down to a fine art and had made good friends with the other mums on the ward.
The first mum I spoke to showed me where to go to find my meals over in the maternity ward and pointed out a family room where I could eat my hot dinner. Unfortunately, I was too late for lunch so she showed me where the sandwiches were kept in the fridge back in the neonatal ward. She taught me a few things I needed to know about the neonatal ward and including informing me that the ladies who served the meals don’t hang around. This was very important for me to know and she has remained a good friend ever since.
As I walked through the maternity ward, I felt quite numb and just wanted to stop and stare. It was exactly how I imagined it would be. I’d never been in one before. When I was pregnant, I had daydreamed of doing what the other mums were doing. Everything looked and felt so normal, so natural, a place where you wouldn’t necessarily crave to be, yet I did. I wanted to be one of those mums, sitting on their beds, wondering when they could get the go ahead to go home, being only a matter of days, if that, since they had given birth to their baby. Maybe if I had reached this point, Esme would still be here. I envisaged myself sitting in my hospital bed, in my new nightie I had bought and with Charlotte and Esme in their wheelie plastic cribs by my side, welcoming family in to see my beautiful twins. I would have my hospital bag next to me, carefully packed with all the essentials. I felt sad and quite lost that I was denied this chance. I didn’t expect that going for my lunch would trigger so many emotions.
I found it hard seeing photographs of Mums on social media who had their full-term bumps, then their photographs of a tired face after giving birth and snuggling into their newborn, followed by a few days later by their baby safe at home, filling out their newborn babygrows; no tubes, wires or monitors. It was a very unpleasant feeling to be jealous of them. A feeling which took many months until I could shake off and acknowledge my journey into motherhood had not been my choice.
It was whilst queueing for my meals that I made another ‘mummy friend’ and had to explain the ropes about mealtimes. I enjoyed sitting down for lunch with her and discussing our babies and the nature of the neonatal ward. It was comforting to know I wasn’t alone.
As I think back to my time in the neonatal ward and some of the mothers I met, I felt we shared many things in common. We were able to empathise with one another and understand the pain of what it is like to leave your baby every night and spend many days going against everything your maternal instinct is telling you.
I lived in hope that one day Charlotte would finally move to Room 1 and I would hear the news that we’d been given the go ahead to take her home. I fought hard to combat the feeling of fear that I would never get the chance to do that. I spent each day, continuously, trying to remain strong, keeping a positive mindset and remembering to put one foot in front of the other.
Donating my milk
As I would no longer be breastfeeding two babies, I decided to donate all of my breast milk that I had stored in the freezer at Leeds General Infirmary and the majority of breast milk I had in my freezer at home. I completed the application form and sent off my blood tests to make sure I could donate. Although it was deeply upsetting knowing I would never be feeding both my babies with my expressed breastmilk, it felt good that all my hours upon hours of expressing were not wasted and were going to help other premature babies. When I was pregnant, I had researched the best ways to feed twins. I had been excited to buy the ‘Peanut and Piglet’ breastfeeding cushion and had looked forward to the challenge of feeding Charlotte and Esme at the same time. Sadly, this again, would all just be my imagination. I hoped Charlotte would breastfeed successfully.
I arranged for the ‘breast milkman’ to collect my milk stored at home one morning before heading into the hospital. When he arrived the first thing he said was “We call women like you milk cows.” “Charming” I thought. What a pleasant greeting! He said in all the years he’d been collecting donated milk, he’d only met one other mum like me, at Great Ormond Street Hospital. I felt quite proud of myself. My inner competitive streak willed me to ask “Who donated the most?” but I kept quiet and accepted the achievement that I was in the top two.
The week leading up to the funeral
That week, I finalised the cake design. I decided to go for a collection of stars instead of the two white butterflies. I couldn’t wait to see it. I met up with the florist and enjoyed listening to her carefully thought out ideas for decorating the church and village hall. She suggested Gypsophila which is also known as Baby’s Breath. We decided it was very fitting for the occasion. I was delighted and satisfied that everything was going to look so pretty for my little girl. It was quite a numb feeling of happiness, one that I haven’t felt since. My heart ached so deeply for the loss of Esme yet I enjoyed and took great pride in planning her day. The feeling of wanting to make her proud of her Mummy returned and I felt proud, too, that I was achieving this.
My sister Kirsty did an amazing job of designing the order of service. She created ‘Esme’s star’ for the front cover. It is probably the most beautiful star I had ever seen. We decided on two poems and the friend and the cousin who had found them kindly agreed to read them.
One evening we met up with the licensed day reader, Lois, she was the lady from the village who was going to conduct Esme’s funeral service. We hurried back from the hospital to make sure the house was tidy and the floors were hoovered, and we made a pot of tea ready for her arrival. I had bumped into her a couple of times on dog walks and was looking forward to meeting her again. She was full of kind words and admiration for Connor and me. Her calm demeanour made our room feel relaxed and peaceful. We told her about our difficult journey into life as parents and all that we had overcome throughout the summer. We went through the order of service, checking for spelling mistakes. It was then that she suggested calling the piece of writing I had written with Esme, “A Tribute to Esme“. Connor and I were very grateful that his Auntie Anne had agreed to read it at the service.
While I visited Charlotte, Connor spent many mornings busy building all the flat pack furniture we had bought for the nursery. This included a cot, a matching chest of drawers with a changing table on top and a pine wardrobe. He sent me copious messages of his achievements as he complimented himself on building them inside a poky room with rather complex instructions. He did a great job. On the way to the hospital, I returned the cot we had bought for Esme. I did it with no emotion and said very little.
When Esme died, I often wondered what to do with all her gifts. We had two of everything. They had been bought for Charlotte and Esme with love and hope that one day they would come home and play with them together. I didn’t want to get rid of half of them. It didn’t feel right. Some of the presents; blankets, cuddly toys, towels, bookends, letters, alphabet poster and a beautiful print were personalised. Family and friends were nervous about giving these to us. I loved all of them. They were so special. It showed Esme was with us, that she was known and loved by all of her family and friends and that she will always be Charlotte’s twin sister. One morning before going to see Charlotte, I decorated her nursery with all of her and Esme’s gifts.
While putting all her toys out, I thought about how fantastic Charlotte will be at counting in two’s. I am intrigued and looking forward to the day of watching Charlotte lining all her toys up in sets of two. I often think about how she will grow up, knowing she is a twin.
It was a satisfying and bittersweet feeling once I had finished decorating Charlotte’s room. Apart from only one cot, the room looked exactly how I imagined it would if I had been bringing both my babies home.
On a midweek evening, I invited my friends round to discuss how we were going to decorate the hall. I’m not sure why I felt I needed a reason to invite them, but I just needed them there for me. I needed to see their friendly, supportive faces and I needed to feel their comfort, warmth and understanding. When they arrived, I don’t know why I felt the need to hold it together in front of them. I think I was more scared for myself that if I let my guard down and started crying, would I be able to stop? Once I had let them in it would be impossible to put on my brave face in front of them. I was overwhelmed by a sense of relief to be able to cry in front of friends and it felt good to grieve in their company, knowing I was surrounded by their love.
As I showed them Charlotte’s nursery, I also felt the need to show them Esme’s memory box. They couldn’t believe how small everything was, the tag from around her ankle, her CPAP ventilation head bandage, her first nappy and her vest top and sleepsuit. As I picked the sleepsuit up, I automatically smelt it. The wind was knocked out of me as I experienced Esme’s scent. A smell that only a few days ago I was surrounded by but now it was linked to a memory and not to the living.
Just before I said my goodbyes to my friends, we very briefly discussed how we were going to decorate the village hall. It was decided that everyone would bring any bunting and pretty decorations they had and would meet there on the Monday evening; the day before the funeral. We couldn’t get in during the day as it is used for a Playgroup.
The 5th September was our first wedding anniversary. We wanted to enjoy the day and make something of it so we decided to visit Charlotte early and then go on into Leeds for a meal and to buy outfits for Esme’s funeral. I had decided the dress code was ‘wear what makes you feel beautiful’ as that’s how Esme made me feel.
From the day that my waters broke , to delivering our girls three months early, to losing Esme, my marriage to Connor grew only stronger. We were there for each other no matter what. And on the days which we feared the most, together we turned them around to create happy memories that we will treasure forever. Our first wedding anniversary was one of them. It was one of the rare occasions that Connor agreed to go shopping and didn’t seem to count every penny that was spent. We went to the same restaurant that we took my Mum and Dad to to say thank you for letting us stay at theirs over the summer. We treated ourselves to lobster, steak, cocktails and wine. Then we hit the shops. ‘Food first’ is our only rule when out. Connor managed to buy his entire outfit in Next, which took him less than half an hour. I on the other hand, trekked around nearly every shop in Leeds, panicking a little more with each one that I couldn’t find my ‘perfect’ outfit. Luckily, near to closing time, my eyes fell on a beautiful coat in Coast. All this time, I had been looking for a dress. The coat was nude and went perfectly with the white jeans and pink top I was wearing that day. This was to be my outfit.
That night, a friend called round with a present. It was a beautiful rose gold star necklace from all my girlfriends. My eyes welled up. I was in love with it. She explained the nightmare she’d had that it would not arrive in time for them all coming round the previous night and how their hearts had sunk when I had excitedly told them I was looking forward to buying some jewellery in Leeds to remind me of Esme. I was relieved I didn’t find any as the star necklace was beyond perfect.
Connor went to collect Esme’s death certificate from the same place where we had registered the girls’ births about two months earlier. That was something I couldn’t do. Maybe because it would have made it more real. I felt my eyes were too afraid to see the words ‘Esme’ and ‘death’ together in black and white. At home, he said I might not want to read it, but I did read it. More than anything, I hate not facing something which I know will upset me or that I am afraid of. I see it as only lying to myself, hiding from the facts, not living up to the truth and being a coward. Looking back, maybe I wasn’t kind enough to myself and the feeling that I was being cowardly was too harsh on myself. But at the time, it felt the right thing to do and if a similar situation arose, I have no doubt I would tackle it in exactly the same way. I opened the folder and with my heart in my throat, I painfully read the words ‘Death’ at the top of the certificate, followed by Esme Ann Campbell. Causes of death: “Ventriculitis, E. Coli Septicaemia, Extreme Prematurity“. My heart felt like it was bleeding.
I was nervous about going to the hairdressers to get my hair and nails done. Since Esme had died, it was the first time I had been in a public place on my own. I knew my hairdresser well and over the years we had become good friends. While I was getting my highlights done and my nails gelled I broke down in tears. What was I doing? I felt embarrassed. I was going to my daughter’s funeral, not a party. Had everything I had planned been all wrong? What if Charlotte didn’t make it? What if I was going to have to plan another funeral? I still had none of my babies home. These thoughts terrified me.
My hairdresser was so comforting and reassuring and made me feel I was being brave and doing great. Something I will never forget. I wanted to look my very best for my little girl. I wanted her to think she had a beautiful Mummy, on the inside and out. If I looked ok then maybe it would help me feel more beautiful on the inside, because right then, I felt very ugly and as if my heart had been ripped in two.