Living by the hour: Part 2

By Tuesday morning (12th July), I had still not moved around much by myself. I was petrified of moving and hurting myself. I still had the catheter in. It was a horrible feeling having it in when moving about and the thought of catching it on something made my toes curl. I was still incredibly thirsty and Connor couldn’t believe how quickly it filled up. I actually got used to the laziness of not having to go to the toilet. It was the most unpleasant, uncomfortable feeling when the student nurse came to remove it. I certainly found it very difficult to relax. Once the catheter had been removed, the midwife instructed me to get out of bed and go to the toilet. I probably would have refused except she said it with such an authoritative tone I thought I’d better do as I was told. I struggled but managed the toilet and a shower. Thank goodness there was a sink opposite the toilet to hoist myself up. I had no idea how many times you use your stomach muscles in a day.

The nurse’s had said not to set my alarm for expressing during the night but if I woke up then to give it a go. I woke around 3am and successfully managed it. In the morning the nurse came in to see how I was getting along with the single pump. She started laughing as I was slumped on the bed, with this pump awkwardly attached me. She said I looked like I was relaxing on a sunbed. She got me sitting up and moved me into a ‘more ideal’ position for expressing. I laughed at the sight she had walked in on, compared to how I was supposed to do it. The nurse informed me I was ready for ‘the Big Daddy’, a double breast pump. She wheeled it in and I had a go. I felt like a cow in a milking parlour. Connor was creasing himself and struggled to look at me and have a serious conversation, or any conversation at all for that matter. I felt very proud of myself each time I went to the reception desk to ask for the milk fridge key, to store my milk in before taking it to the neonatal ward. The nurses and midwives were impressed with how much milk I was producing.

I decided to walk to the neonatal ward. It took a long time but it was important for my recovery. Connor really struggled walking so slowly. I had to keep stopping and telling him to slow down. Instead of syringes, we had bottles of expressed milk to take to the girls. The neonatal nurses were absolutely delighted. They showed us where the milk freezer was and how to label the bottles. The milk team would then collect the bottles and store them in the hospital’s industrial freezers.

There wasn’t much change with the girls and they had stayed stable. This time both girls were having phototherapy to help with their jaundice. Charlotte wore sunglasses and Esme’s face was covered in a special bandage. This was to protect their eyes and faces from the fluorescent light. It was difficult not seeing their faces, not knowing if their eyes were open or closed. I desperately wanted to peek but understood I couldn’t. We enjoyed doing some comfort holding and feeling their soft, delicate skin on our hands. I hoped they knew it was their Mummy and Daddy and weren’t frightened by this touch. I hoped they were soothed and relaxed knowing their Mummy and Daddy were there for them. I hoped they knew how much we loved them and that we would love more than anything to hold and protect them.

 

We were informed that the consultants were planning on changing Esme’s intravenous cannula (a little valve which goes into the vein to allow doctors and nurses to administer drugs regularly) for a long line. Cannulas can only last a couple of days before they need to be replaced and another vein used.  The nurse explained that a long line goes much further up the vein, compared to a cannula. It delivers drugs closer to the heart and they can stay in for several weeks, meaning less discomfort for the baby. She told us about a medical research programme (PREVAIL Trial) the hospital was currently doing regarding a new type of antimicrobial long line, and that the consultant would be along shortly to see if we wanted to take part in it.  There were no increased risks with using this new type of line but the potential benefit was a lower risk of contracting a blood infection due to the new material the line was made from.  We decided to take part in the programme. This was the first time we had had to make a decision as parents. It was daunting as it held such a heavy weight of responsibility and trust.  Over our time in neonatal we took part in the ELFIN trial in which Charlotte was selected. ELFIN is a randomised controlled trial evaluating whether giving very preterm infants supplemental lactoferrin (a natural antibiotic protein from cow’s milk) reduces the number of serious infections. We also agreed to be videoed for the benefit of helping junior doctors for delivering upsetting news to parents.

The nurses suggested going for a coffee whilst they tried to fit the long line. Seeing the doctors in their scrubs and the screens ready to go up around Esme’s incubator, made me feel sick with fear. There was nothing I could do. If I stayed with Charlotte I would spend the entire time staring at Esme’s screens, with my heart stopping every time an alarm sounded. We decided to take the nurse’s advice and got a taxi into Leeds.

I’m not sure the taxi driver thought I should be allowed out of hospital, with the way I moved and held my tummy. I was very grateful that he drove so carefully and took the corners easy. We decided to go to The White Company to buy our girls a present. It took a very long time to walk from the taxi to the Victoria Arcade. I was conscious of people watching me move so slowly but as I studied people’s faces as they walked past me, they all had more important things to do than bother about me. I had a strong sense of freedom as I slowly walked along, squeezing Connor’s hand for balance. I was finally out of hospital, with no fear or dread of going into labour. We tried not to let guilt set in, that we weren’t with our girls and reminded ourselves that we were advised to do this by the nurses. We were very proud parents, walking through Leeds that day.

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After resting a few times (whilst window shopping) I finally made it to the final stretch of the Victoria Arcade. Connor joked that an  old man, who was currently at the top of the arcade, was going to beat me. I looked behind me and this old man was quite a way off and also walking so slowly, I thought surely I’m not that slow. I continued shuffling along and Connor started laughing, “Amy, he is literally going to beat you, I don’t think I can suffer the embarrassment, hurry up and move your arse!” I turned around and he was almost level with me. The two of us were shuffling along, trying to go as quick as we could, except he was gaining ground. I couldn’t believe it. I tried to shuffle faster but I couldn’t. Giggles took over. It tickled me so much, racing this old man down the Arcade. I hadn’t laughed for a very long time, except I couldn’t laugh as it hurt so much. I just stood crouched over, gripping my tummy and telling Connor to stop making me laugh.

As I walked into The White Company, the shop assistant looked at me with great concern. I explained I had had a caesarean two days ago and I’m pretty sure she didn’t think I should be allowed out either. We enjoyed looking at all the stunning baby clothes and imagining our girls wearing them. We opted for two little white elephants for their incubators and Connor chose a mobile for their nursery. I couldn’t wait to return to the hospital and give Charlotte and Esme their presents.

We enjoyed a scrumptious brunch in the Victoria Arcade. I got so excited that there was a drink called an ‘oxygenator’ and decided it was a sign and I must have it. Connor thought it was a bit strange but went along with it. (It was only when I returned to the hospital I realised I had got the words ‘oxygenator’ and ‘oscillator’ muddled up. Oops!) The food tasted incredible and I was aware I no longer had any nauseous feelings towards food or hot milk. We discussed how beautiful and incredible our girls were, their similarities and differences and how well they were doing. I loved saying their names together and that we were parents of two gorgeous twin girls. It felt so special.

 

I shuffled to Bravissimo to find a nursing bra. Connor walked me there and then went to find some flip flops as it was so hot in the hospital and his trainers were stinking our bedroom out. The assistant also gave me a very worried look with the way I was moving and asked if she could help at all. She was very helpful and found me a stool for the changing room.  As she fitted my new bra, she politely asked about my baby. This was the first time I had told anyone about my two girls. I broke down in tears yet I continued to tell her how amazing they were and showed her pictures. I was so proud of them. As I came out of the changing room, Connor had returned and was telling the manager all about Charlotte and Esme. They loved their names and told us a story about a family they knew who had a premature baby. They filled us with hope and wished us lots of luck.

The whole time I lived in fear of getting a phone call with a Leeds number on it. When my phone did ring with the neonatal ward flashing, my heart skipped a beat. I hurriedly answered the phone, desperate for them to get to the point as soon as possible. They informed me they had managed to fit Esme’s long line. It was such a relief to hear.

When I returned to the antenatal ward the nurses and midwives were so pleased we had made it into Leeds and excitedly asked if we had managed to enjoy ourselves. I started off upbeat but then suddenly felt like I’d been punched in the stomach and smacked so harshly in the face by reality. I broke down in tears and cradled my head in my hands. The midwife came over and gave me a rub on my back. I’d hit rock bottom and all my strength to stay positive had abruptly vanished. I felt stupid and ashamed that I had gone into Leeds and had been so cheerful when my girls were so critically ill. I felt foolish for wasting my money and buying a nursing bra. “What’s the point? I am living by the hour with my girls, I am facing the fact they might die any second. That I will return to the neonatal unit or my phone will ring and I would find out one or both had died.” The midwife gave me a tight squeeze and said “You’re doing what you need to do now for you and your babies and that’s the right thing.” I breathed, looked up at Connor for reassurance and picked myself up. I had a firm word with myself “I can do this. Come on, Amy!”

We set off to see the girls, excited to give them their presents. After my walk around Leeds, I decided not to overdo it so opted to be wheeled. When we arrived back in the ward, everything was back to normal, there were no screens up and the doctors were no longer dressed in their scrubs. I greeted each of the girls and repeated my funny story about racing the old man twice. Connor gave Esme her elephant and I gave Charlotte hers. The little white elephants looked so big next to our girls and their trunks were perfect for resting all their tubes on. There wasn’t much change and they had both remained stable. The nurses had good news that their brain scan results had come back and they both looked fine. We experienced such a huge wave of relief. All the suffering I had experienced during the magnesium sulfate infusion was worth every second.

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Esme

Later that afternoon, the nurse looking after Esme asked if Connor or I would like to do some skin to skin and hold her. I couldn’t believe what I was hearing. I didn’t imagine this moment would happen for a long time. Connor said I could hold her (the nurse also mentioned it would be good for encouraging my milk supply to come in). I was so excited. I had to wait until the ward was quiet enough and there was enough staff around. I sat down in a reclining armchair which had been carefully positioned next to her incubator. The two nurses were working out the logistics of the best way to transfer her from the incubator onto my chest. My heart started to beat faster as I felt the adrenaline and excitement building; I was soon going to be holding one of my little girls in my arms. I was completely calm and ready to hold her until the nurses picked her up. She looked even tinier being held in their arms. Her body looked so fragile. She was attached to so many tubes to keep her alive. However, I couldn’t hold onto these thoughts for long as the nurses were ready to position her down the top of my t-shirt.

From the moment I felt her skin touch mine, my world began to make sense. It was the most comforting, perfect feeling I have ever experienced. The love I felt for her poured out of my heart. I cupped her little bottom in one hand and placed the other around her back. Her body fitted perfectly into my hands. I nestled her head under my chin, closed my eyes and wished I could hang onto this feeling forever. I savoured the sensation of her melting into me, the feeling of her warm skin against mine and the closeness we felt towards each other. When the machines sounded, my heart almost stopped, I nearly blurted out “I think she’s ready to go back.” But the nurses just silenced the machines, checked all the breathing tubes were in the correct place and informed me she was absolutely fine and loving being held by her Mummy. I started to relax again.

 

It was such a lovely surprise when my Mum, my sister, Kirsty, and her fiancé, Bill, arrived. I was so happy that they got to see me holding Esme. It was strange but I felt like I was more of a Mummy. I excitedly showed my family the elephants we had bought and told them about our trip to Leeds. I was in such high spirits to be holding Esme, to be keeping a watchful eye on Charlotte and to have my family here.

 

Esme’s machines started bleeping again and the nurses kindly informed me it was time for her to go back in her incubator. I was so grateful for the opportunity to hold her. Before she went back in, I whispered, “I love you.” It felt so good and such a relief to be able to get those three words out of my mouth. A small weight lifted from my shoulders. Although I knew she needed to go back, it was difficult handing her over to the nurses. I held onto those moments of holding her. The cuddle gave me so much strength and the ability to believe that everything was going to be ok.

Later that evening, Connor was in the shower whilst I expressed. I began to feel like I was heading towards rock bottom again. Tears began uncontrollably spilling down my face. I began to feel pathetic. There I was, a new mother, yet I was attached to breast pumps and was going to spend the night cuddling ‘fleece buddy blankets’ instead of my babies. Was this how it was supposed to be? I missed my girls being with me all the time. My heart and arms ached to hold them close. The feeling of being lost returned. I had a scar, I could barely move, I was producing milk and had two girls in intensive care. It all felt so disjointed. Above all, the feeling that upset me the most was I didn’t feel like a real Mummy. I didn’t feel like the Mummy I so desperately wanted to be.

 

2 thoughts on “Living by the hour: Part 2

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