Fine line between hope and despair

Towards the end of July, I felt we had started to turn a corner. Esme was doing great and was tolerating her maximum milk allowance and Charlotte wasn’t too far behind. Connor had returned to work and I was delighted to see my friends when they visited the hospital. I enjoyed these days chatting to the nurses, showing off my girls, doing their cares and holding them.

Thursday 28th July

On Thursday 28th July I arrived at the hospital in a positive frame of mind. Both girls were stable and the results from Charlotte’s brain scan were fine. I said “Good morning” to Charlotte and then went over to see Esme. Something wasn’t right. She didn’t have the spark in her eye, she was still, very pale and her tummy looked swollen. My gut instinct started screaming at me. I called her nurse over and asked if Esme had been ok and I was concerned about the way she looked. The nurse looked at her and explained she had been fine all morning and it was only five minutes since she had finished her last feed. She took into account that I wasn’t happy, acknowledged that Esme had changed colour and did some further observations. I had been told to always trust my maternal instinct and alert the nurses if I was unsure about anything. Five more minutes passed, I could feel panic rising and told the nurse, “I really don’t think she’s ok.” By the time I had phoned Connor, who was working, to say something wasn’t right with Esme, the nurse had returned with the consultant.

Later that afternoon, the consultant explained Esme had caught an infection. She was going to have a blood transfusion and start on a two week course of antibiotics as it was thought she had developed suspected NEC. The nurse had taken her blood and it had been sent off to the lab to be tested.

Friday 29th July

The consultant explained that they had tested Esme for meningitis. I felt sick upon hearing this. The results had come back positive for E. coli but not indicative of meningitis. We were greatly relieved.

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Late Friday night, Charlotte’s nurse phoned to say she had noticed Charlotte was having abnormal seizure-like movements. The consultant explained that it could just be normal premature baby movements but it was something that needed to be looked at. They were going to attach wires to Charlotte’s head to monitor her brain activity. Connor and I were grateful that they were being proactive and taking every precaution. We had to once again remind ourselves of Connor’s brothers advice, “Don’t try and fight anything, just accept it and go with it” and my Yesmum card “I take control of what I can and let go what I can’t”. To this day, this card remains stuck on my fridge.

Saturday 30th July

I didn’t sleep well that night. On Saturday morning, Connor worked on the loft and due to road closures my Dad dropped me off at a different entrance to the hospital. I told him I knew where I was going (or at least I thought I did) and hopped out when the traffic lights were on red. As I walked through the old part of the hospital I realised I had no idea (as usual) where I was going. I followed signs to Clarendon Wing and came across the hospital’s chapel. I continued past it, in a hurry to see my girls, but something stopped me. I turned around and went inside. There was one lady there, sitting on the right, at the back. I decided to go in and quietly sat down on the left, near the front. Despite the scorching day, the chapel felt cool. It was peaceful. I could feel my mind and body beginning to relax. Everything was still except the flicker of the candles. Tears began rolling down my cheeks, I felt lost, unable to keep the strength up of this Mummy I had become. Hope felt like it was deserting me and I was being drawn towards despair. I squeezed my eyes tightly and prayed. I prayed so hard that my girls would be ok. I prayed for God to help me continue being strong for Charlotte, Esme and Connor. “Please, help me.” I cried.

Before writing about visiting the chapel, I had forgotten about the emotions I experienced whilst sitting on the pew. As the memories returned, I became extremely upset at remembering how vulnerable, lonely and helpless I felt. I had reached despair. I had no one else to turn to. The feeling of hope escaping me is so painful. My chest felt like it was being crushed and my legs too weak to walk. I mentioned this to my counsellor and she asked “Do you think your prayers were answered?” I struggled to answer this but what I do know is that I felt heard and that I was listened to. That was all I needed.

As I left the chapel, I felt pleased that I had gone inside. It felt like it was the right thing to do.

I was initially quite shocked to see Charlotte with the wires attached to her head but underneath them was just my little girl. I tried to make light of it and said “I like your new spaghetti hair Charlotte.” Her brain activity was traced on a screen next to her incubator. I tried not to look at the machine yet it was hard to not feel the cold chill of fear run through me when I noticed certain spikes on the trace, as this was an indicator of seizure-like activity. I desperately hoped this wasn’t another step back.

I went to see Esme and she didn’t look well. It was difficult holding myself together. This was the first time she had taken a step back. By mid-morning there was a crowd of doctors and the consultant around the incubator and her alarms were sounding. Esme’s nurse advised me to go into the parents’ waiting room and she would come and get me when Esme had stabilised. I sat down in the waiting room in a confused dark cloud of numbness. What on earth was going on? I phoned Connor and told him what was happening and that I was coping. We didn’t have much time and it was important that work got finished on the loft. He was happy to do this but made me promise I was ok and to let him know as soon as I heard any updates.

Looking back, I was living in denial. I refused to think there was anything to worry about. I wanted life to continue as normal. I couldn’t face any more bad news.

I needed to stay busy so reached into my rucksack for my notebook and pen. Since the name Campbellinas was coined and experiencing life in the neonatal ward I had been thinking about setting up a premature baby clothing and accessories range. I spent my time planning all my ideas for this. My heart skipped a beat every time I heard footsteps walking towards to the room. I smiled anxiously at everyone that went past, thinking they would be the nurse. I couldn’t leave the room, I was terrified of what I might see if I went past the intensive care room and didn’t want to move in case the nurse couldn’t find me. Time stood still again and I forced all my attention onto my ideas. I wrote pages. Eventually, Esme’s nurse came to visit me. She took hold of my hand, smiled and told me Esme was doing ok and the consultant was currently working on her. I felt so numb. All I could say was “Is she going to be ok?” The nurse couldn’t answer this but said the consultant would come and talk to me when Esme was stable. She left and I shakily returned to my notebook, not knowing what to think or do.

I recognised the consultant’s footsteps coming down the hall and put my notebook and pen away. I couldn’t tell you what the consultant said. My ears were refusing to listen and my mind wouldn’t focus. I just nodded at what he was telling me. He was so patient with me and tried explaining what had happened in different ways. All I could hear was “lungs” and “collapsed”. Over an hour had passed and I was pretty much hopeless by the time I got round to ringing Connor. He got the gist that things were seriously wrong and drove in.

I was doing Charlotte’s cares when Connor arrived. The consultant came over and sat down next to him. They were less than a metre from me yet I couldn’t hear a word. I didn’t want to hear. I didn’t care what they were talking about as I knew Esme was going to be just fine. Deep down, my gut instinct knew she would pull through. I was too numb for tears. The consultant told Connor he was worried and was not sure how she was going to be over the next 24 hours. Connor later explained that Esme had needed a significant increase to her ventilation because of the infection (E.coli sepsis) she had caught. Esme was stable, however she wasn’t improving either.  Esme was on the maximum ventilation so if she did take a dip then there was nothing else they could do. In order to try and boost her recovery we approved the use of a very strong steroid to help her lungs.

By early evening I was exhausted and mentally drained. There was nothing more I could do. I could barely stand up. We were asked if we wanted to stay but I needed to go home. My mind refused to believe what was going on. My girl was going to pull through. She was going to be fine. I saw only hope.

Sunday 31st July

On Sunday morning we arrived in hospital relieved that Esme had stayed stable through the night and the consultant had started Charlotte on antibiotics in light of her sister’s E.coli sepsis.

By Sunday evening we were informed that Charlotte was requiring additional support with her breathing. Due to Charlotte’s blood gases worsening (the level of oxygen etc. in the blood stream), the nurse had had to increase her pressures (forcing more oxygen from the lungs into the bloodstream) and her level of oxygen requirement. Both girls were now needing oscillation.

I felt like we had gone full circle and all the steps forward they had taken had been undone.

At times, Charlotte and Esme wanted to take their own breaths but they were too weak to do this so had to be heavily sedated. It broke my heart to see my girls so poorly and so still. Due to the limited movement their hands and feet became swollen. Everything happened so quickly. We had returned to living by the hour.

Monday 1st August

On Monday, the consultant for that week called Connor and me into the Family Room. I’d met this consultant a few times and felt safe when she was looking after my girls. I wasn’t sure what to expect. I knew both girls were poorly but on previous occasions they had picked themselves back up again.

The consultant asked us if we understood what was happening with Charlotte and Esme. Connor and I looked at each other and he nodded at me to speak first. I mentioned both girls’ lungs collapsing, that they were both back on the highest ventilation and that they were on midazolam and morphine, so they didn’t try and breathe for themselves, use extra energy and allowed the machines to do the breathing for them.

The consultant looked serious and replied “That’s what I feared. That you don’t realise how serious it is, how poorly both girls have become, especially Esme.” Esme was on the strongest steroids the hospital had. Charlotte also was on milder steroids. The consultant went on to explain that they had done all they could to help Esme and it was now up to her.

How could that be? What did she mean they couldn’t do any more to help her? I pulled my knees close to my chest, put my head in my hands and cried. After I felt I could not cry anymore, I looked up. The consultant said there was a bedroom on the neonatal ward which we could use. We agreed to this. Connor told me to stay with the girls whilst he went back to get a change of clothes.

As I walked out of the Family Room, the corridor, the ward felt like a different place. It had changed. Just like the antenatal ward had changed when I returned after the girls were born. The photographs of success stories no longer looked like pictures of hope. It hurt to look at them, knowing those mummies had got to take their babies home. All those times I had walked past them, imagining me, Charlotte and Esme posing for a photo one day, that one day had disappeared. What if we never got that opportunity?

As I walked into Intensive Care, I said “Hello” to Charlotte and then went to see my darling Esme. My heart began to bleed. I was unable to control my tears. I leaned with my arms resting against the incubator and stared through the glass at my girl. My tears stained the glass. I had no words or energy to wipe my eyes, my nose, my face. My little girl. I stayed uncontrollably crying for a long time. The nurse came and put the tissue box on top of the incubator. I am unable to type this without reliving this and crying the same distraught tears.

Her machine started alarming. I couldn’t cope and went into the corridor.

I didn’t know where I was going. I stopped in the corridor, put my back against the lockers, wrapped my face in my hands and cried. I couldn’t handle it any longer, my mind and my heart were being pulled in so many directions. How much longer would I have to remain this strong? Esme’s nurse came and found me. She listened to me, comforted me and gave me a tight cuddle. I hugged her back, needing the support.

By evening, other than to go and express, I hadn’t moved far from Esme’s incubator, Connor had returned with clothes and food and had made me a very sugary strong cup of tea. It was strange wandering around the hospital in my pyjamas, just like before. By 10pm the majority of parents had gone home and the ward felt very calm and relaxed in comparison to the daytime. Esme and Charlotte had a blood gas test done hourly and we were waiting for their blood gases to improve. The nurses suggested we tried to get some rest and the importance of remembering to look after ourselves. If anything happened they would come and get us.

As much as I tried to close my eyes and sleep, I couldn’t. My adrenaline was running so high and I struggled to ignore the pounding of my heart. My body stiffened every time I heard footsteps walking towards the bedroom and cold fear washed over me. I drifted in and out of sleep but woke in the early hours of the morning. The night hours were ticking by so slowly. I needed to go and see how they were doing.

The room was dark and the nurses were talking quietly amongst themselves. Esme’s nurse wasn’t there and I was told she had just gone to get the results from Esme’s latest gases and would be back shortly. She returned with a smile on her face. I felt my hopes lift and my heart beat faster. She explained that the latest gases had shown improvement and were heading in the right direction. I didn’t understand the figures that she told me very well but what I did know was that it was fantastic news. I burst into tears of happiness and relief and hugged the nurse, I was just so proud of Esme. “That’s my girl, I knew you could do it”. I practically skipped back to Connor who wasn’t aware that I had sneaked out.

Tuesday 2nd August

By morning, both girls’ gases had improved. It was the most joyous news I have ever heard and I can still feel the relief today.

We were also delighted to be informed that the consultants were happy with Charlotte’s trace from her brain monitoring and that the reading suggested her abnormal movements were most likely to be premature baby movements.

Left: Charlotte, Right: Esme

By this point, I didn’t know where my head was at. So many things had happened to both girls in such a short space of time. I was running on adrenaline, terrified of what might hit us next.

Over the next couple of days, both girls received physiotherapy for their chests, were recovering well and were started back on their feeds. I was so proud of Charlotte and Esme. They were back on track and had both taken two steps forward.

Beginning of August

Unfortunately, Charlotte went on to have difficulty establishing feeds (my expressed milk) following the NEC episode. She was taking two steps forward with her recovery but one step back with her feeding. Every time she was restarted on feeds, she would get a distended tummy. It was hard to acknowledge that her body was rejecting my milk. I found it quite hurtful. I spent hours expressing to help my girls; it was one of the things that only I could do. It was difficult to not feel completely hopeless when I felt deprived of protecting my baby in any shape or form.

The consultants wanted Charlotte to have a contrast study, to investigate why there was difficulty establishing feeds. In order for this to happen, she had to progress from the high frequency oscillation ventilation to the conventional ventilator. This took time. Once she had achieved this, she was able to go in the travel incubator to another ward where the contrast study took place. The nurse said it would take about twenty minutes. This was the first time I experienced not having my girls together. I sat in the armchair and watched as the team of medical staff wheeled Charlotte out of intensive care. I felt like I had lost a limb. The room felt so empty without Charlotte in it. I held Esme that bit closer and told her to use her special twin powers to look after her sister. Over forty minutes had passed and there was still no sign of Charlotte returning. I’d read Esme three storybooks and was beginning to feel quite sick. Where was Charlotte? Was she ok? Had something happened? I decided it was silly for me to get in a mess so politely asked the nurse if she knew how much longer Charlotte would be? The nurse was very apologetic and explained it took a while to get to the room, then there might also be a queue. I relaxed a little and reminded myself that Charlotte was in safe hands. When they returned I was so happy and relieved to see her, I started crying.

Left: Charlotte, Right: Esme

We waited for the results and were delighted to hear the contrast study was normal and feeding was re-established. During her feeds, Charlotte had occasional desaturations (machine alarmed when she had low blood oxygen levels) but these were thought potentially to be due to reflux. The nurses avoided thickening her milk because of the history of NEC. Our little girl was getting there and showing she was a born fighter.

Moving closer to both girls being in High Dependency

On the 12th August, Charlotte’s ventilation had improved and she was moved back onto the CPAP ventilator. By 14th August, Esme had made a full recovery from the E Coli, was back onto high-flow oxygen therapy and close to breathing by herself. Both girls were tolerating full feeds. They were both taking steps in the right direction and things began to feel good.

Charlotte

Esme

We had our paint party on the 13th August. The entire house except the kitchen and lounge were painted and the carpets went down the following week. For a few nights that week, after saying goodnight to Charlotte and Esme, Connor and I would drive home via Tesco to buy our dinner and finish painting the lounge. I enjoyed these evenings, just the two of us listening to the radio and painting away. I had finally found the perfect striped fabric for the nursery curtains in Laura Ashley and it just so happened it was in the sale. I bought the matching lampshade, lamp and rug as well. I was looking forward to making their curtains and had been recommended using blackout lining. In a week, our house had been transformed and turned into our beautiful home.

On the 18th August, Esme was moved from intensive care to high dependency.

Technically she should have moved rooms to the high dependency room but the neonatal team were brilliant and kept both girls together as Charlotte still needed intensive care.

Esme

It had been such a rollercoaster. After hearing about Esme’s lungs collapsing and all the good and bad news over the past five weeks I could no longer listen to the consultant sharing the girls’ updates with the hospital team on ward round. It had become too much. I could no longer bear hearing any more bad news. When I saw them entering the ward, I used to go and express.

During that week the girls were moved rooms. I’m not sure why they were moved as it was another intensive care room but we were told it was one step closer to high dependency. Despite this room having windows, I wasn’t as keen on it. It was bigger and there were another three incubators in the room. It didn’t feel as homely or private.
I continued to avoid ward round but overheard the consultant asking the family opposite to come the Family Room. My heart went out to them, especially when they returned with tear stricken faces. Life in the neonatal ward is hard. You see things each day that you should never have to witness. There is nowhere to hide.

As both girls were doing really well and our house was almost ready, we went to the Mothercare Expectant Parent Event. I was really looking forward to going and buying things in preparation for my girls coming home. I didn’t expect to feel overwhelmed with sadness and jealousy. It was really difficult to see all the mummies in Mothercare with their big bumps and their babies safely inside them or seeing them carrying or pushing their newborn around. I had neither. My bump had disappeared and my babies were in hospital. I did my best to keep upbeat as Connor was in his element. We ordered two cots, a matching chest of drawers with a changing table and two mattresses. These were to be delivered later that week. We also bought a set of pink sheets and two nappy bins. Connor had researched we were going to go through a lot of nappies so needed one upstairs and one in the lounge.

On Saturday 20th August, after almost three months at my parents, we moved back home.

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