My Warrior

I have written all my blog from memory and surprised myself that I could remember every day, sometimes every hour, every minute.  As I wrote I relived every painful second and experienced the heart palpitations, the dizziness, the sickness and the fear.

The truth is, since Esme’s funeral, I have struggled to remember St. James’s in detail. I asked Connor and he replied “I can remember very little about St. James’s. There was never much change. Which was always good news.”

I know, most of the time, I felt happy. Overall, I have many fond memories.Most of our time there was spent waiting for Charlotte to grow, until she was big enough to come home. Maybe part of the reason I can’t remember is because I didn’t live each day in fear. I wasn’t afraid of hearing devastating news every day and I had hope and faith that Charlotte would eventually be coming home.

What I do know for certain is that Charlotte got me through every single day. She made me smile, she made me love and she encouraged me to live my life to the full.

Charlotte was at St. James’s for five weeks and two days. I no longer minded the drive to and from the hospital each day. It had become my routine. The heart palpitations I had before visiting the hospital were replaced by cross mutterings under my breath when I struggled to get a car parking space.

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Compared to the LGI, the roles of parents and nurses had switched. Connor and I did everything with Charlotte when we were there. I loved it. It gave me ownership, responsibility and a taste of motherhood. It gave me my daughter back.

Seeing twins

One of my main worries at St. James’s was seeing other twins and their parents holding both of them. I couldn’t escape it. I couldn’t just not go in that day because I couldn’t bear to see twins. That is not how life works. Today, seeing twins is still a struggle. I have a mixture of emotions. I want to stand still and stare. I find them easier to look at if they are playing or away from their parents. It hurts the most when I see a mum holding both her twins. That is something I should have experienced and it leaves me feeling pretty shitty. I want so desperately to have that, to feel and hold both of my babies safely in my arms. I have to remind myself that that is not my story. That choice was taken away from me.

After Esme died, a friend told me about the purple butterfly logo. This was started by another surviving twin mum who set up the Skye High Foundation.  If you see a purple butterfly sticker on the side of a cot, it indicates an original multiple birth and the loss of a sibling. It meant a lot to me when I arrived one morning and found the nurses were researching pictures of butterflies to go above Charlotte’s cot. I asked if we could have a little cabbage white butterfly as one seemed to be following me everywhere I went. Initially I didn’t think this would make much difference to me but it did. I loved having a picture of a butterfly above Charlotte’s cot, it was a gentle reminder that Esme wasn’t forgotten. It was this high level of care that meant so much to me.

My warrior

For the first couple of weeks at St. James’s, Charlotte was very pale and it was touch and go whether she would need another blood transfusion. We expected she would, we were so used to them, we almost wanted Charlotte to have one to give her that extra boost. But we were informed by the consultant’s it was important that her bone marrow learnt to produce red blood cells. Despite being told by the nurses it was looking highly likely that she would need one, Charlotte proved them wrong. A few weeks later her colour returned and she didn’t need one. What a very clever girl!

On the morning of the 14th September, the day after Esme’s funeral, I was really struggling. I wasn’t sure where my head was at. I had cried a lot of tears. My heart hurt, I wanted my daughter back. I wanted to stay in bed but I couldn’t. I had a job to do, Charlotte needed her Mummy. I arrived at the hospital with a tear stained, blotchy face. I took one look at Charlotte and immediately thought there was something different. I could see more of her face, it was quieter and there wasn’t the sound of the high flow ventilator blasting warm air up her nose. The high flow ventilator machine had disappeared. A nurse, looking after another baby in the room, noticed me staring. As I was about to ask, “Has something changed?” she explained that that morning the consultant had changed her ventilation to low flow oxygen. The tube wasn’t as big and only a tiny puff of air was going up her nose.

My emotions escalated so fast from feeling like I had hit rock bottom to being the proudest person on the planet. I burst into tears. Tears of happiness, tears of joy, tears of confusion, tears of grief and tears of pride. I couldn’t cope with this roller coaster of my heart being pulled in opposite directions any longer. I sat down, put my head in my hands and cried. The nurse came over and was so fantastic. She knelt down and rubbed my back. She told me I was doing amazingly and comforted me. I am forever grateful for her being there and knowing just what to say to a grieving mother but also a mother who couldn’t be more proud of her surviving twin. I hadn’t met the other mum who was in the room before. Her baby must have arrived overnight. I felt I needed to explain my sudden outburst of tears and told her about Charlotte being a twin but that her twin sister didn’t make it.

I couldn’t help but think of how much Esme was helping her older twin sister and ensuring that she continued to go from strength to strength. It was very comforting.

Charlotte had amazed me every day since we first found out about Esme’s battle with illness. She had become my warrior.

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High Dependency Unit

On the 15th September Charlotte went into her own cot. This was such a big milestone. She looked so proud of herself lying there in her big girl’s cot. It was such a triumph. Every day she amazed me. It was the best feeling picking her up and putting her back down. I was overwhelmed by a sense of normality. Being able to lift Charlotte out of her cot all by myself was the best feeling. I had only two wires or tubes to contend with, her breathing tube and her oxygen saturation (sats) monitor which was wrapped around her foot. Life was beginning to get easier. I was also beginning to feel more like a mother.

As Charlotte was still so small and it was important to keep her warm, I continued to make a nest for her to lie in. Back in August, we had gone to a Mothercare baby event and attended a talk about what a baby should sleep in and the danger of letting them overheat. Charlotte went against everything that we learned. She used to wear a vest, a sleepsuit, lie on a heated mattress, in a nest with a fleece blanket on top and then have two blankets, both folded in half, on top of her. We frequently checked her temperature and felt her chest to see if we needed to remove a blanket or put a hat on her. It was important that she didn’t get cold as she would then put her crucial energy into keeping warm, thus affecting her growth.

Connor and I continued to do Charlotte’s cares just as we did in the LGI except now I could go and get everything I needed from the cupboard myself – nappies, cotton wool or sterilised water, bed sheets or towels. This simple thing meant a lot to me and I don’t think I would have thought anything of it if I hadn’t been denied it in the first place. I didn’t have to rely on or feel like I was pestering the nurses in order to do every little thing for my daughter. It made so much difference to feel like a real Mum, confident that I knew what I was doing and above all, with a sense of freedom.

On the 18th September, the nurse suggested giving Charlotte a bath.  I was so excited and couldn’t wait for Connor to arrive in the afternoon to do it together.

Giving Charlotte a bath felt very different to the time I bathed Esme and luckily I didn’t experience any painful flashbacks. I did however, experience a different kind of heartache. A realisation that our lives as a family were still confined within the hospital walls, that this special moment would be in the public eye and watched over by the hospital staff and other parents. I know the nurses were just doing their job and, of course, I valued all of their helpful advice, but I imagined I would have had to teach myself the little things like how to hold her, how to wash her head and body separately and having two towels ready.  Instead I felt as if I was on a course being taught.

I was delighted to see that Charlotte absolutely loved her bath and didn’t cry once. The nurse, who was holding all of Charlotte’s wires, was pleasantly surprised that she didn’t cry once and her hands weren’t clenched. I had a feeling that she was going to be a water baby.

I spent most of my days in the high dependency unit relaxing in an armchair and holding Charlotte. I loved the freedom of being able to lift her out and cuddle her whenever I wished. Each day was about Charlotte becoming stronger and bigger, ready for her journey home.

I did find it hard seeing other babies come and then go home within a matter of days. We were, once again, long-standing residents. The high dependency and special care rooms were all next to each other along a corridor and there were some other mums who were long-term residents, too.  I smiled at them and got to know them.

As I was wrestling with the large wheelie screens which I put around Charlotte’s cot and my chair to give some privacy during breastfeeding, I heard a mum in the next room start laughing. As it was possible to see from one room into another I turned around to see she was sitting, holding her daughter, reading a book but was in fact laughing at me. It was the same lady who had shown me where to go to get my meals. I laughed back and said “These bloody screens are worse than pushing a supermarket trolley.” We have kept in touch ever since and speak daily about how our girls are doing. She is now a friend for life.

With everything I had been through and then continuing to travel to the hospital every day there was no surprise that I soon came down with a cold. A sign that my body needed rest, I needed to give in. I phoned the ward to ask their advice and they said if it was green snot then they advised not coming in until it had cleared. I was distraught. I couldn’t bear the thought of not seeing Charlotte. I needed her. I spent my days dosed up on Lemsip, paracetamol and ibuprofen, steaming my face and watching Gossip Girl. I willed the cold to go away. On the third day, I was tearing my hair out. I thought I was well enough. I drove to the hospital pretending my nose wasn’t streaming as much as it was. My body pined to see my little girl. When I was five minutes away from the hospital, I came to my senses. I was being ridiculous. My nose was still running. Why risk making Charlotte poorly? I phoned the ward to tell them I still wasn’t well enough, had an exasperated cry and drove home.

Special Care Baby Unit

I had got to know just about all of the nurses by this point. They were all amazing. I loved the way they admired Charlotte and loved how her little personality shone through. They always made me feel like a very proud Mummy.

On the 22nd September Charlotte moved from the high dependency unit to the special care baby unit. We advanced to room 3, then twins arrived so the nurses kindly moved us to room 2. This was where we spent the next two weeks before going home (we never made it to room 1 as there were two sets of twins in there). Dammit!! I settled for room 2.

Each day I grew closer and closer to Charlotte. I would spend hours sitting in the armchair, watching her sleeping and admiring all her dainty features, her chubby cheeks, her button nose, her little hands. It felt like a long time before she grew eyelashes and eyebrows. I repositioned her head so many times on the special gel cushion as she had preference for lying on the same side. I should have learned then, that there really was no telling this girl, she would do things only her way.

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We had by now managed to establish breastfeeding. It was the most incredible feeling in the world to be able to physically feed my daughter. All those days, nights and months of expressing all felt worth it.

It was a little bit of a faff as I was advised to use nipple shields. I didn’t really want to as I had sterilise them every time and it felt like something else I had to do rather than just plug Charlotte in. There were many occasions where it turned into an absolute disaster. Connor wasn’t as keen to help for fear of being sprayed with breast milk. I had to learn to juggle with her breathing tube and sats monitor, prevent the nipple shield from falling on the floor and cope with my ridiculous amount of milk. It got messy. One of my boobs was practically the size of Charlotte. When I had the let down (the release of milk from the breast), I practically drowned Charlotte, set the alarms off and many nurses ran towards me in great urgency. “Just drowning Charlotte with my milk”, I would call over the screens, “We’re fine”, as I sat there with milk spraying everywhere, boob hanging out, nipple shields flapping and Charlotte choking.

I remember beaming so widely when a nurse said “I think she’s going to be a proper little breast feeder” and that she was. In order for Charlotte to get the most nutritious bit of my milk, I had to express first and then feed her. It was all quite an effort and a lot more work went into the business of breastfeeding than I had thought. I knew it was the best thing that she could ever have so just got on with it. I was told it would get easier.

Unfortunately, Charlotte often wanted to be fed when it was time to go for my cooked lunch. I had to preorder it the day before. At St. James’s I was back on hospital food. By this time I had got so used to it that I didn’t actually mind. It was also a bonus that I didn’t have to worry about making a packed lunch, something which I can never really be bothered to do. Luckily, they either saved my meal or put a sandwich in the fridge for me which was very much appreciated. I got to know the lunch ladies well and from the beginning I understood the importance of being nice to them. I loved my chats with them and that they asked how my little one was getting on, saying it wouldn’t be too much longer before Charlotte got to go home. They laughed, saying she must be my first if I was willing to sacrifice lunch for breastfeeding.

Charlotte needed her oxygen tubes changing once a week. I loved this part as I got the chance to see Charlotte’s beautiful face tube free. Even though the oxygen tube wasn’t very invasive, it made so much difference to her little pretty face when they were removed. I took one photograph and she looked the spit of Esme when we removed hers. It was a lovely reminder Esme was close by and I would always be able to see her through Charlotte.

Left: Esme, Right: Charlotte

What I did love about life at St. James’s was when family and friends visited. The nurses were around if I needed them but I was pretty much able to do what I wanted. I loved picking Charlotte up and gently placing her into the arms of my family and friends. They were really lovely moments and there was a big sense of normality. I would sit back and relax, while they held her and just talked about “stuff”. It was great.

Adjusting to the new me

Whilst Charlotte was at St. James’s I rarely went anywhere but the hospital and home. On the way to the hospital I needed to stop off and buy some birthday cards for my in-laws. I didn’t really think anything of it. I was at the till buying the cards when I looked to the right and was transfixed by a cushion with “Love you to the moon and back again” on it. My eyes welled up. The last time I had written that was in my letter to Esme. I ended up explaining to the sales assistant that I had had twins three months early, had just lost one of them and was on my way to see the other one still in hospital. It dawned on me how shit and cruel my life felt right then. The sales assistant, who was an elderly lady, gave me a very warm, comforting hug. It felt nice to be held. I thanked her and told her I would bring Charlotte in when she was home. I walked out of the door and prayed that Charlotte would come home one day.

Driving to the hospital I played the radio very loud and tried to distract myself from overthinking what had just happened, but questions kept creeping back. “Would my life always be like this?”  “Would I always feel this sad?” “Would my heart always feel broken?” I tried to comfort myself that it was a little sign from Esme and imagined that she was still here, holding my hand.

On another occasion, the weekend after Esme’s funeral, it was one of my oldest friend’s thirtieth birthday parties. I wanted to go, she had been behind me every step of the way. I wanted to celebrate with her. Connor and I decided we would go. It would be good to see everyone. It was a strange feeling doing my hair and makeup, ready to go out. I couldn’t remember the last time I had done this. I was nervous about seeing everyone, anxious that I would collapse in an uncontrollable mess. I was driving as I couldn’t face the idea of alcohol. It took all my energy to keep my self-control and manage my emotions sober, let alone alcohol infused. I was scared of what might happen if I was to drink. Where would my mind go? Would I be able to stop crying? I felt frightened of confronting a lot of things outside the comfort of my own home.

I feel very proud that I went. I did have a cry and it was fine, I was fine. It felt good to just have normal conversations that weren’t to do with hospital, babies or death. I loved seeing my friend celebrate her birthday and open all her presents. However, it was strange that the old me would have been downing glasses of prosecco and talking absolute nonsense, and I was sad that I no longer felt like the same person.

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