The Deceptive Rainbow

Saturday 20th August

After visiting our girls, we were looking forward to taking my parents to a steakhouse in Leeds to say thank you for looking after us over the past three months. The last time we had been was for Connor’s 30th and we’d shared half a lobster and enjoyed the best steak. That morning, the most beautiful rainbow appeared across the fields at Mum and Dad’s house. It was so striking I had to take a photograph. Today was going to be a good day. I believed rainbows were regarded as a sign of hope. Esme was doing amazingly well and showing everyone that she was certainly ready for the high dependency unit. She was on two hourly feeds (through her nasal tube), wriggling all around her incubator and not needing much oxygen on her high flow. Charlotte, although still in the intensive care unit was progressing well and each day becoming stronger. I arrived at the hospital in high spirits and with a new-found energy.

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When trying to piece the above dates together, it occurred to me that that one rainbow, the most striking rainbow I have ever seen, appeared on that Saturday. It was ironic that something usually regarded as so positive should appear just when things were about to go badly wrong.

By the afternoon, things had taken a turn. Esme’s nurse informed me that her tummy had become distended, they were pausing her feeds and had taken a blood sample to check for infection. A cold fear swept over me. I saw the look in Esme’s eyes, her change in skin colour, her lack of movement. Sights that were all too familiar; sights which I had never wished to see again, but this time seemed different. Deep down I knew something wasn’t right. I felt it in my heart.

We still went out for the meal. I tried to tell myself Esme would be ok and her tummy might not be anything I needed to worry about. However, my gut feeling was so cold, uncomfortable and unbearable, it was hard to ignore. I’d lost my appetite and felt numb. I hadn’t been out on a Saturday night for a very long time and I felt lost and out of my depth. As I glanced around the fancy restaurant, I became aware of how dressed up everyone was; the smiles on their faces as they enjoyed catching up with their friends or loved ones; the deafening sound of laughter and glasses clinking together and the distant sound of live music. I felt I was watching a film. I didn’t feel I belonged in these surroundings. I felt hollow, vacant and passive. I was supposed to be enjoying a celebratory meal. A group of six people came to sit at the table next to us. I couldn’t believe it. One of the ladies was my midwife, the same lady I had bumped into while having coffee in All Bar One and the same lady who ran the aquanatal classes. We greeted one another with surprise and she asked how Charlotte and Esme were. I just about held it together but as I explained about Esme I nearly broke down. Tears fiercely stung the back of my eyes.

Sunday 21st August

We spent Sunday morning unpacking all our bags. As much as I wanted to drive to the hospital first thing, I was grateful to be kept busy nesting. I felt terrified of hearing any more devastating news.

When we arrived at the hospital we were informed that Charlotte was doing well. She was tolerating three hourly feeds and her oxygen requirement was coming down. Esme’s oxygen requirement had stayed the same however, her tummy had remained distended. Her blood results had come back. It was suspected she had a further episode of NEC and had been started on antibiotics. I wanted so much to believe that she was going to pull through but I couldn’t. I didn’t know what to think. I was so proud of Charlotte, she was doing incredibly well yet my worry for Esme was insufferable.

Monday 22nd August

We arrived at the hospital and were overjoyed to see Charlotte had progressed to high flow. It was amazing to see all her face. She was doing so well and just going from strength to strength.

 

Left: Charlotte, Right: Esme

On the Monday night, I slept with nothing but fear in my heart. After expressing during the middle of the night, the thought of sleeping seemed impossible without knowing how Esme was. With a heavy, pounding heart, I phoned the hospital. Esme’s nurse informed me she’d been fine until the early hours of the morning. She had observed Esme doing abnormal movements and had alerted the consultant. What did this mean? Why had this started? What was happening to her little body? I crawled back into bed and told Connor. We didn’t say much to one another, we didn’t need to. Tears rolled down my face. Why were things happening so fast? I couldn’t cope with my heart being slowly twisted. Every day brought with it a further painful twist. I wanted to fight it but I couldn’t. I couldn’t do anything to protect her, I was helpless. The fine line of hope was disappearing too quickly. I prayed for Esme to not be suffering or in any pain.

Tuesday 23rd August

When I phoned the neonatal ward that morning I was told they had begun monitoring Esme’s brain activity. We drove to the hospital in a tense silence, both too worried to talk. I felt sick at the thought of seeing my little girl with wires attached to her head. It felt different to when Charlotte had been monitored. Anxious thoughts wouldn’t leave me alone. What if I couldn’t cope? What was happening to her? What would her abnormal movements look like? What would I do if I saw her having a seizure? Would I be able to stay strong for her or would I be too weak?

The machine which monitored Esme’s brain activity was different to Charlotte’s. It was more advanced. There beneath all the wires, was my beautiful girl. Unable to hold her head, I held her hand and her tiny feet. It pained me so much to see her like this. Her body moved awkwardly and I asked the nurse if that’s what she meant by abnormal movements? What was happening in her little body? Why was it doing this to her? I felt sick but couldn’t move. She was my girl, I was her mother. The trace confirmed Esme had developed seizures and an abnormal cerebral function.

The consultant arrived and informed us her infection markers were extremely high and she had developed a second episode of presumed NEC and E.coli sepsis. The next agonising step was to wait and see if the infection markers would come down.

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Charlotte

Each day, Charlotte continued to grow stronger. She never failed to put a smile on my face. As I looked at Esme with a shattering heart, Charlotte delicately picked up the falling pieces. I was able to hold Charlotte close, feel her heartbeat against mine and allow her to fill me with hope that everything was going to be ok.

Wednesday 24th August

Due to the E.coli sepsis, seizures and apnoeas (briefly stopping breathing) Esme went back onto the oscillator ventilator. She was no longer able to do most of the breathing by herself and needed support from the ventilators.

Similarly to the first time she caught E.coli sepsis, the consultant had to repeat the lumbar injection. Any other time over the summer I would have left the room but this time I stayed. I couldn’t leave Esme and I couldn’t bear the thought of not having Charlotte safe in my arms. I watched with pained eyes as the consultant and junior doctor entered the room in their operating gowns and pulled the screens around Esme’s incubator. I held Charlotte so tightly, hoping to find some strength from her. I softly whispered in Charlotte’s ear, asking if she could use her special twin powers to talk to Esme and tell her that her Mummy loves her very much. I looked over at Esme’s incubator, saw the consultant and doctor working on her and prayed that she would be ok. I stared vacantly and felt nothing but helplessness. When they had finished and the screens were wheeled away, I watched Esme’s body lying there so still. Even though she was heavily sedated I would sometimes see her little feet or hands twitch and her back arch slightly. My feelings as a mother and not being able to protect my baby tore me apart. I prayed to make whatever was happening to her to stop and pleaded for her not to be in any pain.

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As Esme was nil by mouth, she required a long line to be fitted as the cannula she had for her fluid and medication would only last for a short period. So far Charlotte and Esme had not needed a long line through their heads. An image that made me feel extremely uncomfortable and queasy. That Wednesday, the senior sister tried three times to fit Esme’s long line but had no joy. So many of Esme’s veins had been damaged due to previous long lines or cannulas. The senior sister was very apologetic and wanted so badly to succeed. I trusted this sister with all my heart. Despite being a little nervous of her when we first met (she was very honest but in the kindest of ways) I had grown to love her. She often tied her blonde hair up with a bow and always wore the brightest pink lipstick. I often had lipstick envy.

Before Connor and I left to go home, we had to sign consent for Esme to go in for surgery the following day to have her longline fitted. It would either go in her head or just above her heart. It was difficult signing the consent, knowing how weak she already was, yet we understood it was something that she needed to have done. What if something did go wrong then it would be my heart on the line as I gave the permission to take her into theatre?

Thursday 25th August

Before Esme went into theatre I got the chance to see her with no wires attached to her head. She was beautiful. Whilst she was in theatre I did Charlotte’s cares and cuddled her. I needed her. I needed to feel her warmth, her comfort, her resilience and her strength.

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As I watched Esme’s incubator being wheeled into the room post theatre I felt my knees go weak and I couldn’t breathe. What had they done to my little girl? To my baby. My eyes welled up. Her tiny body was motionless, her eyes were closed and they had taped up half her face with plasters to secure the breathing tube. I was choked. I walked over to her incubator and cried. The tears felt as if they were coming from the back of my throat, preventing me from breathing. I could barely see her. I reached inside the incubator and held her hands and feet. They were warm yet there was no muscle tone or response, no life. I so desperately wanted her to squeeze my finger or press her feet against my hands but there was nothing. I whispered to her “Everything is going to be ok. Mummy is here.” I put my hands over her little feet and held her hands and told her how brave she was and how pretty she looked and that I was so proud of her.
Esme’s nurse explained the medication she had been on for the past few days hadn’t worked and her seizures had persisted. Esme was subsequently treated with a midazolam infusion and Keppra. This in effect paralysed her body causing her limbs to become floppy.

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Before Connor and I went home, the consultant was delighted to tell us that Esme’s infection markers had dropped considerably. I couldn’t believe it. My amazing, brave, determined girl was doing it. Despite everything her body was under, she was fighting it. She was still having seizure activity so was booked to have a cranial ultrasound scan. There was hope. A tiny flicker of light began to dance at the end of the tunnel.

Friday 26th August

That Friday, Connor and I drove to the hospital early in the morning. We spent the morning doing Charlotte’s and Esme’s cares, talking to their nurses and comfort holding them. I felt such a tear of emotions as I looked at Charlotte becoming stronger by the day yet Esme looking weaker and weaker. Due to Esme’s limited movement and all the medication she was on, her hands and feet had begun to go puffy. I held her hands but found it so heart wrenching to see her like this.

 

Charlotte

Esme

Later in the day the consultant came to find us. He asked if we wanted to go into the Family Room. I felt my colour drain and refused to go in. I told the consultant I didn’t want to go in and was fine to sit in the corner of the intensive care room to hear what he had to say. Was I living in denial? I knew we’d signed up to partake in the ‘Parents and Neonatal Decisions’ research project but I couldn’t do it. I was terrified of what the consultant had to say. Yesterday, her infection markers had dropped significantly, she was recovering, so why did he want to bring us into the Family Room.

We pulled up three chairs in the corner of the intensive care room. It was not ideal as it was public, noisy and other families were there but I didn’t care. I wanted to hear the news in a place where I couldn’t have a break down. A place where I felt under pressure to maintain my composure.

Over the summer, we had got to know, like and trust all of the consultants. This particular one had looked after Charlotte and Esme in the first week after they were born. He spoke gently and we understood it was nothing but the truth. He took his time and explained, “The brain activity monitoring shows abnormal multifocal frequency spikes and given the clinical picture these represent a central nervous system infection, known as meningitis.” He explained this to us further and then continued, “Unfortunately, Esme’s cranial ultrasound scan findings have changed with her second episode of E.coli sepsis. These findings show Esme has caught ventriculitis, an inflammation of the ventricles in the brain.” Judging by our blank faces he drew a diagram to show how meningitis had affected the ventricles leading to swelling and inflammation. One of Esme’s ventricles was much larger than normal and had a few cysts around it.

Despite feeling hot, dizzy and faint, I forced myself to hold it together. I didn’t really understand all the scientific terminology or the diagram. Science was never one of my strong points and I heavily relied on Connor explaining it to me later. I asked, “If it remains the same and the antibiotics she has been on have worked in time, what is the worst case scenario?” The consultant replied, “I can’t answer that but by looking at the scan, it is likely she will have hearing loss.” I was ok with this. In fact extremely relieved. There were so many things that could be done to help her, she could still have an amazing life and I had started to learn and enjoy using sign language in my old job.

The consultant explained the next 24 hours were critical. They would be monitoring her closely. This included measuring her head circumference to check for further swelling of the ventricle. If her head circumference increased dramatically, it was certain the infection had not been caught in time and the damage might be significantly worse.

I prayed for the next day to bring good news. That the antibiotics had worked just in time and there would be no change in her head circumference. We were left with nothing but hope.

 

4 thoughts on “The Deceptive Rainbow

  1. I cannot help but cry when I read this, hearing about all the ups and downs that your family had to go through. You tell your story so beautifully.

    Like

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