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.

Ronald McDonald House

We walked hand in hand across the road. Walking away from the building where our son was. Leaving him in the hands of surgeons. I could feel the shadow of the building behind me as I walked. It was as though the building was getting taller and leaning over my shoulder. Guilt. How could I just walk away and leave him there? But as everybody kept telling me I needed to look after myself as well. I zombie walked the ten-minute journey to Ronald McDonald House.

Ronald McDonald House is the McDonald’s charity. You know those little boxes full of pennies on the McDonald’s counter? Well they all go towards funding the building and maintenance of specially made apartment blocks across the country. The apartments are near hospitals and are for parents and families to be able to stay near their children during their stay in hospital. I had never heard of them before having Zach. I had no idea where those pennies went. That apartment was a safe haven for us. It became a rock in some very unsteady waters. Just knowing I could walk ten minutes down the road from the Evelina and have warm shower, clean comfortable bed and fresh clothes was amazing. When I left the wards in the afternoons to catch a nap it was at our room in the Ronald McDonald House. Emmanuel organised all of our clothes and belongings into the draws and wardrobe so that when I got back there It felt a little bit like home.  

We arrived at Ronald McDonald House and walked through the reception area. Emmanuel nodded to the receptionist and said hello. He had made friends already. Typical Emmanuel, he made friends everywhere we went. I love that about him. We went to the lifts and down to the end of the second-floor corridor. All the rooms were named after famous London land marks. Our room was the Tower of London. It sat opposite the laundry room and a shared kitchen and dining area. The room reminded me of a Premier Inn hotel. It was clean and comfortable and a little bit like home, but definitely not home. We don’t have an en suite bathroom for starters.

When I got back to the room I burst into tears. Emmanuel held me as I sobbed into his shoulder. He is going to be fine, he told me. “I know”, I mumbled back with my voice muffled. We sat on the bed and talked. We discussed how strong he was and how we know he will fight through this. I told Emmanuel that I a good vibe from his surgeon and had a good feeling about him. He said that it was reassuring to hear that from me. I often have a ‘gut feeling’ about things that tend to be fairly accurate. But it doesn’t stop your mind wondering. I kept thinking that the electricity would cut out and his bypass and breathing machine would stop mid-surgery. I thought his anaesthetist would lose attention and Zach would wake up half way through. Or that the surgeon would get shaky hands and cut something wrong. I couldn’t stop the onslaught of terrible thoughts. The worst was the image of his tiny body looking limp as he fell asleep right before we left him. His tiny body being cut open. His tiny little hands laying open without me holding them. I would have sat with him in the operating theatre if they had have let me. Just in case he had a sense of where he was, he would have known I was there with him. I would have held his hand as they took the blood away from his heart. I would have watched as they let a machine take it and become his heart for a period of time. I would have watched as they put a ‘line’ in his neck. I would have watched as they placed electrodes on his head. I would have watched as the numbers appeared on the monitors. I would have stayed through all of it and sat by him if they would have let me.

I took a shower and got into some fresh pjs. Emmanuel put on some lounge clothes as well. We had some snacks in bed and decided to play a game. Emmanuel had bought an Emoji card game from the supermarket. You had to guess the movie from the Emojis. We laid in bed and laughed as we tried to guess the movies. The first one was a crown and a Lion so I shouted “King Lion!” The actual title of the movie is of course ‘Lion King.’ We laughed together. It was such a small thing but we found the game funny. I needed to release the tension and keep my mind off what was happening. I also needed to just be with Emmanuel. I felt like I had not been close to him for a while. Not sharing a bed made me feel far away from him. He was my anchor and I was drifting. We finished the game. My stitches sore from laughing so hard. We curled up together and slept. Our phones on loud sat next to us ready for the phone call from the surgeon.

At 5.31pm the surgeon called my phone. I answered within one ring.

“Hello” I said with a high-pitched urgency to my voice.

“Hello, everything went well with the surgery.” Said the surgeon

“Thank you.”

“He is being sorted out now and will be ready to move to PICU soon. You should be able to see him in half an hour or so.”

“Thank you so much. Thank you.”

“You are welcome.”

“Thank you.”

We hung up. I turned to Emmanuel who was waiting. “Everything went well, He said. We can go now.”

I showered again and got myself dressed. So did Emmanuel. We both grabbed another snack and a drink on the way out of the door. A proper meal was something we would not have for a while.

On the walk back to the hospital I felt so relieved that the surgery had gone well. The surgery was over. It was done. We just had to get through the recovery and we could soon be home. I wanted to run to the Evelina. We both called and messaged family on our way. Letting them know things were ok.

We arrived at the Evelina and out of habit nearly went to the Savannah ward, but remembered ourselves and found our way to the ‘Big Lift’ at the back of the hospital entrance area. The lift was empty as we went up. As we left the lift, we turned right into the small cupboard area to hang up our thick winter coats and wash our hands before entering the Paediatric Intensive Care Unit (PICU). We stood together holding hands and waited as the doors opened to the unit. Zach was in bed four. We walked through, looking around to locate bed four. We found it and walked forward.

If you would like to know more about the Ronald Macdonald houses charity follow this link. Donate.