PICU – Day two -Holding Hands.

Myself and Emmanuel Arrived at the PICU early. We were told that everything with Zach looked good overnight. Nothing unexpected had happened. It was so reassuring to hear that. I really felt like we were through the hardest parts. It was just a case of time now.

I remember feeling that I didn’t know how to be. The PICU was new to us. I was used to my own space with my bags and snacks around me. In the intensive care unit the level of cleanliness was high. They was nothing there except the patient and all the machines. It was empty so that it could easily be kept clean. Of course, for good reason. Most children there had a lot of tubes going in and out of the body. Zach had drains and his ventilator as well as the central and ‘art lines’. All infection risks. It made perfect sense. I didn’t know where his nappies were. Or what I was allowed to touch. So, I sat still on my chair with a few bits next to me. My breast pump, a bottle of water and my phone. I wasn’t sure how close I could get, if I was in the way or not. I was like an awkward odd button that had been sewn on when the original had fallen off. Myself and Emmanuel sat quietly together by Zach’s bedside, both feeling like odd buttons. We messaged our families to let them know Zach had done well over night. Then we just sat some more. There really wasn’t much to do but sit and wait around.

Emmanuel had a DJ job that night, so he left in the afternoon to go back home in order to get his equipment ready. So I stayed by Zach’s bedside and held his little hand. I couldn’t think of much else to do but that. I stroked his head and whispered to him that I was there for him. He twitched a little bit as if to say ‘I know mummy.’ He hadn’t changed much from the day before. His drain had stopped producing so much liquid. His urine pot was filling up nicely so his kidneys were clearly fine. He was just doing well. That was it. I longed to hold him again. To let him know that he was safe. To feel his warm little body snuggled into mine. It was possible to hold him with the ventilator in, but moving him with the drains and everything else would probably have been painful for him. So, I sat and stayed nearby. 

The nurse who was with us that day started to chatting with me about lots of different things. What job I do. What job Emmanuel does. Where did we live. All of the normal small talk type questions. I found myself in a conversation that was getting me through the minutes. The walls of the ward that had already started to close in were now backing off. The beeping of the monitors that starts to scratch at your brain had eased. Another nurse who was with another little baby in the opposite bay started talking with us as well. Soon we were in a full-blown chat about hen parties, wedding dresses and the TV program ‘Say Yes To The Dress.’ Before I knew it two hours had passed.

I am sure that nurses are trained to do this. Every nurse I met had a way to take my mind off things or supported me when I most needed it. I am sure that they were looking after me just as much as Zach. Those conversations about normal things kept my mind from drifting away into dark places. When I was sat watching Zach take each breath after another and silently praying for him to just take the next one, just keep going. A chat about a hen party takes you away for a few moments. It lifts you into something that resembles your old self again. Making you whole again. Giving you strength. That day I sat by Zach’s side for fourteen hours. The Nurse that switched over on shift change, kindly suggested that I might need to get some sleep. The senior nurse came over and had a chat with me that evening as well. I am sure she was told ‘you better check on that mum, she hasn’t moved in hours.’ Like a little whisper. We have a code purple. The mum wont leave!! I just didn’t want Zach to feel alone. Maybe I felt alone without him. We had just spent nine months together, for us to be apart was unnatural.

I read him the first few pages of the ‘Velveteen Rabbit’ before I left for the evening. I also gave him a fabric square that smelt of me. When I was pregnant, we had attended a class for parents who were going to have a baby that would be staying in hospital. In that class they gave us all a knitted square to take home so that when we were in hospital we could leave it with each of our children, post-surgery, and they would have our smell when we weren’t there. It was brilliant. I had knitted squares, cloths and blankets that I would rotate. This little square smelt of me. I had been wearing it in my bra all day. I placed it by Zach’s head, so he could easily catch a familiar scent. I tucked a freshly washed one underneath him so that when I needed to express milk away from him I had something that smelt of him. I started to do the same with blankets, I would sleep with one in my bed and bring it to him the next day. I have no idea if it worked but it made me feel like I was doing something at least. I kissed his head gently without disturbing him too much and left.

I cried the whole walk back to Ronald McDonald House. I was lonely by myself. I hate not having Emmanuel around me, I always miss him. This was just awful. I was alone. He was alone. Zach was alone. I made it past reception with my head down, hiding my red face and scurried to our room. I sat on the end of the bed and howled. Big screams, along with streams of tears, and got it all out. I needed to release it all and I did. I had some food and a shower and managed to express breast milk again before laying down to sleep. I had my alarm set for 3am (to express) and 6am ready to go back again in the morning. Tomorrow was a big day; he would be having his drains and ventilator out hopefully, I had to be there with him. It was hard closing my eyes that night, but soon exhaustion took over and I finally allowed sleep to take me.

The Savannah

When Zach was born, we were in the neonatal intensive care unit and then the HDU neonatal unit at St Thomas’ Hospital. We then moved over to the HDU on the Savannah ward at the Evelina Children’s Hospital. Its very confusing, but the first HDU is next to the labour wards so parents are next to their babies. Savannah is a part of the Evelina hospital – in a whole other building!

We were moved to the Savannah ward late one evening in the first week of being at the hospital. Myself and Emmanuel call the Savannah ward, The Jungle. It is pretty wild. Imagine a large room with six cots all containing tiny babies. Next to the cots are the worried parents and walking back and forth between them are the nurses and doctors. Each bay has a blue curtain that pulls around your allotted little space. Inside that space, that is perhaps the size of a small shed, are two chairs a storage cabinet, a table and a mountain of medical infusions and monitors. Plus, two suitcases, three bags, breast pump equipment, shoes and a coat. Then imagine living in that space whilst trying to breastfeed your brand-new baby. The nurses have their desk area right next to the first cubicles. There is also the doctor’s office, scanning room, toilets and shower. It was as Emmanuel called it ‘The wild, wild west.’

When it was time to move across, we were walked from St Thomas’ to the Evelina with our two nurses and a student nurse. It was the first time Zach had seen the outside world. He looked around from his cot as we passed through glass corridors, taking in the blue sky, before falling asleep. He then slept for the rest of the walk. We were taken through the old part of the hospital where they have the teaching areas. There is a display case of old medical equipment. ‘The iron lung’ and other old ventilators. They looked like torture devices and sent a shiver down my spine. It made me think that medicine had a pretty brutal history. Street doctors that hacked off limbs and dentists that pulled out teeth with big metal plyers. What about the people that had been hooked up to those old machines, had they lived? Had any of this horror movie looking stuff worked? A movie scene popped into my head; the man had been strung out by his organs but he was being kept alive by machines. His intestines hanging on hooks. His heart beating out in front of him. I physically shook my head and tried to concentrate on Zach. He looked peaceful in his cot. Like an emperor on a travelling throne being brought across his land. All these people here for him and he was blissfully sleeping.

We arrived at the Savannah. As Emma and Emily dropped us off, I hugged them both. I had grown very attached to them in my days in the HDU. Our Savannah nurse came over to introduce herself. The HDU nurses were explaining to her about Zach’s medication and infusions. My heart quickened. Why didn’t she know this stuff? Were we safe here? Was Zach’s careful care going to be messed up? I started asking questions. My anxiety started to rise. In HDU you have two babies per one nurse. Here the nurses can have three babies at a time and there are six bays. I was so scared that something was going to go wrong. I was becoming prickly; I didn’t know how things worked here. A heath care assistant came over to help us ‘move in’ and when she started to move the breast pump machine out of the way to get to the plugs behind it I started almost yelling at her.

“I NEED THAT, you can’t take it!” So, I wasn’t quite yelling, but I certainly wasn’t nice to her. She explained that she was just moving it. I thought she meant moving it away from my area so I continued to tell her that she can’t. Emmanuel stepped in to explain what the lady meant. I stood back and let her finish. I felt awful. She was only trying to help me. The next day when I saw her again I apologised for how I had spoken to her. I explained that I was really unsettled being moved across and I was just feeling really anxious. She was lovely and thanked me for apologising. We actually got on quite well and started joking with each other about miscommunications. I didn’t see her much after this, but I would smile at her when she was around and she to me. “Well done.” My mum said to me after I apologised to the woman. It doesn’t matter how old you are but hearing well done from your parents always means something. “Thanks mum, she really didn’t deserve how I spoke to her. It was only fair.” Yes mum, I am a grown up after all!

Each bay has a pull-down bed next to the patient’s bed for a parent to sleep on. It is tucked into the wall. It is a few wooden slats with a thin foam mattress on top. It reminded me of the mats that you get in sports halls for PE. Where you line them up and do forward rolls and cartwheels across them. They are great, but not for sleeping on.

When the nurses switched over and our night time nurse came over she offered me a proper hospital bed in the bay next to Zach’s. There was nobody in there and she knew I was just a few days post-surgery myself. I could have kissed her. She pulled the curtains around us to make one big giant bay. For the first time I got to sleep next to my baby boy. The hospital beds elevate at the head end so that I could sleep sitting up. After a C-section it is extremely difficult to sleep laying down. It’s difficult to do anything to be honest, but laying fully flat is agony. So, there I was a new mum sleeping next to my baby for the first time surrounded by four other mums and babies all cocooned in blue curtains. The thing about the blue curtains is that they don’t block out any noise. So, all night long you can hear the nurses, the other babies and parents shuffling around. Of course, when one baby cries in the night so do all the other babies. It’s like they play tag with each other. ‘You start crying first this time and I will for the next round. Then we can take it turns like a dawn chorus so that nobody gets any sleep.’ I imagine this is what the babies were up to. So that first night I managed about an hour. 

The best thing about Savannah ward is the breakfast. When hand over is just finishing and all the curtains are being opened, the breakfast lady comes around and she says these magical words “Toast or cereal?” I always had toast and a cup of tea. The toast was cold and the little pots of butter and jam were those plastic kinds that taste more like sugar, but it was delicious! After hardly any sleep and facing a day of uncertainty on the ward, tea and toast just made the world better for a brief moment. In fact, tea and toast become something that I relied on. When Zach was awake at 3am and not settling. Or they came at midnight or 5am to take yet more bloods from his poor feet. I knew in a few hours that I was going to have five minutes where I could eat some jammy toast and drink some very strong milky tea. I often ate it one handed whilst holding Zach. Or Emmanuel would feed it to me if I had no hands free and he had arrived early. It’s the small things that become crutches. It’s the small details that make the long days and weeks bearable. They also fed the breastfeeding mum’s lunch and dinner. I didn’t always eat it but it was a small comfort to know that I would have hot food there at 8am, 12 noon and 5pm.

The only other thing that’s better than the tea and toast in the morning is when you have had a particularly bad night or early morning and one of the nurses brings you tea and toast accompanied by a listening ear.

The first day on the ward my mum was still in London so she stayed with me all day. She was there as I fed Zach constantly. She helped me as I cried because he just wasn’t getting enough. She listened to me moan all day long. There really wasn’t much she could do but at least she was there. Emmanuel had to go and sort out a big food shop for us and take It back to our accommodation. He also had to unpack all of our suitcases and organise our room where we were staying. I am so glad I had my mums’ company that day. But at the same time, I felt so bad for just being this big mess. This definitely wasn’t the happy day with their grandchild that most grandparents dream off. It was so handy having her there though. When I needed to go to my own appointment the day after. Mum and dad sat with Zach whilst Emmanuel took me across to St Thomas’ hospital so that I could see the midwifes. They sent a picture in the family WhatsApp group of Zach in his cot. ‘First babysitting duties’ was the caption. Mum and Dad stayed for a week in total. It was perfect, they were there when we couldn’t be. They sat with Zach we had to do other things. My mum was a friendly face in the sea of nurses when I was trying to feed and change him. Sometimes you do just need your parents. Myself and Emmanuel soon felt ready to do this with just the three of us, as a family. When Mum and Dad went back home we were ready to try to handle this all ourselves. I will always be grateful that my parents got to see Zach when he was so little. Soon his other grandparents would meet him as well. It really meant so much to me for them all to come to the hospital to be with us.