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.

Zach’s first operation – Going to theatre

Emmanuel arrived with lots of snacks and some fresh clothes for me. He had brought me some fizzy drinks and some chocolate as well. He always managed to make me feel better even in moments like this. Emmanuel kissed me and said good morning and then did the same to Zach.

“Have you been looking after mummy?” He asked Zach. I laughed softly. “Yes, he has,” I replied for him.

Then I explained all that the surgeon had told me. I explained the consent form. He held me and asked me if I was alright. I nodded. More tears.

We had no idea how this all worked from here. So, we asked our nurse. She was a very bright person with the confidence to her that we needed today. She had done this millions of times. It was reassuring. So, when she next came over to do Zach’s observations, we asked her what happens. She explained that usually we could carry him or we could take the whole cot and wheel him.

She leaned over and looked at his infusions. “Yes, just prostine will need to come with him. We can take off the fluids. So, I will carry the prostine infusion and you can carry him. Or we can wheel him in his cot. It’s up to you really, but usually, we carry them. So, you can carry him.” She spoke quickly and efficiently which I liked. For some reason she made me smile. My heart rested slightly when she was around. Plus, she had green eyes. I have always thought of green eyes as lucky. She started counting his breathing. I turned to Emmanuel. “Do you want to carry him?” I asked. He took a brief moment to think and then nodded. “yeah. Ok. Yeah.”

It was a waiting game now. The surgeon had seen me in the morning around 9am. Zach didn’t go to theatre until just before 1pm. We sat and waited, quietly. Holding Zach and messaging family. Just before 1pm our lovely nurse came over and said that they were ready for us. She promptly came around the bed area and started moving and changing his wires. “So, are you walking with him?” She asked to confirm. “Yes. Emmanuel will carry him.” I replied.

“Ok great.” She continued to sort out taking off his heart and blood saturation monitors. He was finally left with just one line attached. His prostin infusion. The nurse removed the infusion pump from the grip on the stand and held it up. She turned to us. “Ok, we are ready to go.”

Emmanuel scooped Zach up from his cot and wrapped him in his blankets. He opened his eyes and looked up at us. He was so calm even though he had no milk from 6am onwards. He must have been hungry but he didn’t cry. He just looked at us as if to say ‘it’s all ok.’

A student nurse joined us and walked just in front so that she could open doors and press lift buttons. We walked down the ward towards the lifts. I felt as though everybody was looking. Like we were walking down the aisle. But at the end of this aisle was an anaesthetist, not a priest.

We walked one behind each other, the student nurse, Emmanuel and Zach, the nurse carrying the infusion pump and then me. We fanned out as we reached the lifts. “His second time seeing something other than the ward,” I said. Zach was looking up at the clear blue sky through the glass atrium roof. Emmanuel was looking at his face, holding him tightly. “Look he is just looking around.” 

We watched our son as he took in the sky and I hoped that maybe it was enough wonderment for him to want to see more. Maybe he would be filled with joy and stay. I kept my thoughts to myself. We stepped into the glass lift and travelled down one floor. As we stepped out, we continued to watch Zach. He was just staring at things around us. Looking at everything. Enjoying his closeness with his daddy. The nurses chatted about the corridors down here being colder. But we were in our own little bubble. We walked through glass corridors that were stunning in design but indeed cold. I wrapped Zach’s blankets tightly around him. Zach looked up at Emmanuel and locked eyes with him. For the rest of the walk to the theatre, he didn’t take his eyes of his Daddy. It was as if he was saying ‘it’s going to be ok’ to him. I watched them watching each other. Emmanuel smiled up at me. “He is just looking at me.” He said. I nodded at him through bleary eyes. It was so peaceful and calm. Like we were walking home after a trip to the swimming pool. All water weary and worn out, but feeling snug and dry. We reached the doors to the area where the theatres were. We had to wait a few moments for somebody coming past to let us in as the nurses didn’t have clearance on their key cards.

We stepped inside the theatre area. I didn’t pay much attention to the surrounding but it was a pretty dreary place. No windows, stark white walls and I think green in sections. Small offices lined one corridor wall. A group of doctors all staring at a screen together in each one. We turned a corner. “We are in theatre 4.” The nurse told us. I smiled. “That’s my lucky number,” I whispered to Emmanuel and Zach.

We stepped inside the small room that comes before the actual theatre space. This would be as far as we would go. The anaesthetists were waiting for us. The same ones I had met before of course, plus a new guy. Tayo. They were all so sweet and sensitive. I think anaesthetists are some of the kindest people I have met. It may just be their nature but they are so calming. They explained that there was a heated airbed to put Zach on. I put my hand on it and it was lovely and toasty warm. I smiled at them. That alone was reassuring. Zach was still just staring at Emmanuel. So calm. Emmanuel and I covered Zach in kisses and laid him on the warm air bed cushion. He snuggled in immediately and looked up at us. Fully awake, beautiful. The most awake we had seen him. The anaesthetists explained that they would administer the drugs now that would make him sleepy. We told them we would stay until he was asleep. I held his little hand and kissed his face. I watched as he became sleepy and closed his eyes. His tiny little body, covered by just his nappy, grew soft and limp. His head moved to one side. The anaesthetist gently lifted his head and supported him. I think this was more for our benefit. This was it. The moment we had to leave him. My eyes burst like swollen dams. Emmanuel gripped my waist and walked me outside.

We held onto each other as we retraced our steps back out to the glass corridor. The nurses scooted in front of us and opened doors. They were quietly talking and giving us space. I could hear the nurse explaining to the student nurse that some parents want space and some may want to talk. You have to learn to read the cues and do what’s best. It was very sweet what she was saying. I stopped midway down the corridor the tears overwhelming me. Emmanuel held me as I cried on his shoulder. “My baby boy.” I sobbed.

I was shaking as we left the area and walked around the corner to the lifts. We went back to the ward to collect my bag to take back to Ronald McDonald House with us. The nurses were asking if he was in theatre, as we had waited so long for his surgery when we originally thought it was only going to be a few days after he was born. It was a relief that he was finally having it. I felt relieved that it was finally happening. That struck me as we were back on the ward again. A few other nurses and doctors that we had gotten to know joined us with expectant faces. “He is in there now,” I told them. They all reassured me with smiling faces. I think they were relieved as well. It’s hard to see parents go through this day after day. And with Zach, we were just waiting and waiting as the doctors decided what to do each week and each meeting they just kept waiting. In the grand scheme of things, 10 days is not long at all. But for us, it felt like forever.

We collected the bits that we needed and headed to Ronald McDonald house.

Zach’s first operation – Meeting the surgeon

The ward was quiet that morning. I felt that everybody seemed hushed and subdued. Either that or I was blocking everything out. It was sunny and the big glass windows at the back of the ward were letting in huge amounts of light. I was still in my pj’s. The morning was progressing quickly and I had again only had a few hours sleep. The nurses seemed to be off in other areas. Their desks sat quietly, folders dotted around and cups of tea that looked cold sat untouched. The small room that sat across from the nurses’ station was also empty today. There are usually doctors milling around in that area constantly, but today nothing. I was anticipating Zach’s surgery that day, but the day just seemed to be dragging along. I had no clue as to how the next steps would look. I was lost in that tense before moment. Like Christmas eve, but a lot less fun.

I was breast pumping on one side when the surgeon came to visit me. Zach was asleep in his cot. He pulled up a chair and sat next to me. He introduced himself and got directly to the point. He is a very handsome faced man with a very well-kept appearance. A serious but kind nature to him.

He told me that he would be performing Zach’s operation today. He told me briefly what he would do. He would be taking a piece of donor tissue and using that to reconstruct the ‘arch.’ I asked him to repeat what he had said about a donor. He nodded and replied “yes a piece of tissue from a donor’s heart” I had no idea before that moment that Zach would have somebody else tissue inside of him. What I thought about it later it was pretty amazing to think that one person who donated their organs would be able to save hundreds of babies with just one heart. It was only a small piece of tissue needed and so one organ could help many babies. I was astounded! I didn’t show that. I kept my poker face together and just nodded, still slightly dazed that this was finally happening.

He continued to explain that Zach would go onto a heart bypass machine. This means that the heart doesn’t pump the blood around the body for some time, a machine does the job instead. To use a bypass machine a certain amount of blood has to go through the machine. Babies don’t have enough of their own blood for this process to work. So, Zach would need some blood from a donor for that process to happen. I knew he would be on bypass but I had no idea that he would need blood. So, I offered mine. I knew we were the same blood type. The surgeon kindly explained that that would take a lot of time. I would have had to give blood weeks ago to do that. But being pregnant with Zach of course that wouldn’t have worked either. So, I had to settle for what I was being told. Again, I nodded and kept all the emotions inside. I was concentrating so hard on what he was saying to me. He told me that after the operation he would call me straight away to let me know how it went. I thanked him for offering this. He handed me the consent form and ran through the risks. Bleeding, infection, death and re-narrowing of the arch in the future – needing more surgery. The risks, of course, were not great but Zach simply wouldn’t live without the operation so there wasn’t a question involved here. It was just knowing. I signed the paper with shaking hands. He asked me if I had any questions. I looked away from him and paused. My mind was blank. I turned back “just look after my baby boy for me.” I said and finally, the tears came. “I will” He answered and stood to leave. I said thank you a million more times as he nodded goodbye. I then looked at Zach asleep in his cot and cried.

Still holding onto the breast pump machine in one hand I stood up and leaned over him. I stroked his little face. I looked at every single tiny inch of him just in case I would never see it again. I leaned in further and smelled his hair. I wanted to hold everything in my memory in case my little boy was taken from me. In case he wasn’t meant for this world. He started to stir and wake. I detached myself from the pump and lifted Zach to me. Taking his wires and blankets with him. I held him so tightly as I cried over his tiny body. I kissed him all over his face and rocked him until he fell back to sleep. My perfect little boy. His face was so round and adorable. His perfect little fingers. His chubby arms and round shoulders. His perfect little chest…Inside was a broken heart. How could someone so perfect everywhere else have something so majorly wrong. I held my hand over his chest and felt his heart pumping away. It was only able to do so because of the drugs that he was on. The fast pumping flutters hit against the palm of my hand. Keep beating little one. Stay with me. Just for me. I will always be here for you if you want to stay. It’s up to you baby. I will hold your hand if you want to stay. I said inside my head as if he could hear me. He snuggled in closer to me and rolled his little lips together. That was enough for me. If you want to stay sweet Zach then I will be here. I laid him down softly in his cot and found myself some tissues. The only thought that comforted me was that it was up to him. His little soul or spirit, however you like to think of it, needed to decide if it wanted to stay here with us and in this body. I don’t know why but that was just how I thought of it. It was up to him now. Just the same way he had told me his name when I was in the early months of pregnancy. He would let me know if he was going to stay or not. If I got to take him home or not. Taking in a thought like that is pretty impossible. Especially in such a high-stress environment. So, I just focused on what I needed to do there and then. I called Emmanuel to tell him that the surgeon had just been. He would be gutted to have missed it but he didn’t say anything. He told me he was on his way over.

I sat and waited, just staring at Zach and expressing breast milk. I couldn’t do anything else. Just sit and be with him. He was born on the 18th of February 2020 and his operation was the 27th February 2020. He was just ten days old. Please, please let me have more than just ten days. I spoke in my head to myself, to the universe. Who knows? Please, please just let me have more than ten days with him.