PICU – Drains out

Saturdays in the Paediatric Intensive Care Unit felt different from weekdays. The doctors and nurses seemed more relaxed. The place felt quieter. Like going shopping on a Sunday, it’s still busy but not as much as the rest of the week. I liked the more relaxed vibe. I chatted to our nurse for the day and found out a little about her. Every day is a new nurse and it was always nice to get to know them a little bit. They would be with me for their whole 12 hour shift pretty much, which can be an intense time span to be close to each other and not talking. It also helped pass the time. I found out that on the weekends, unless an emergency, no surgery took place. Also, no meetings happened. The weekends were for maintenance, observing and recovery. The real business happened during the week and that’s why it all felt smoother. I was surprised to learn that Zach would be having his drain out and later would probably be coming off his ventilator.

First the doctors’ rounds had to happen. Then the individual doctors would come back to check what would be needed. So it was lunch time before it was confirmed. Doctor Jeff came to remove his drain. Dr Jeff is the Shoreditch of the PICU doctors. A very cool cucumber indeed. He came over to explain to me that they would give Zach ketamine to give him a nice sedation in order to take the drain out from his chest. I made some silly jokes about ketamine and to my surprise was greeted by laughs! Yes, Dr Jeff found me funny. Some of the doctors were all very serious which sometimes made more nervous, like being back at school as a student. I hovered by Zach’s bed as they started the procedure, but I couldn’t hang around and watch. It is a thick tube that was being pulled out and I really didn’t fancy seeing the hole it left behind. So I went and sat in the parents room for a few minutes whilst they finished.

When I came back it was all done. Dr Jeff was sat back at the middle station that was central to all of the beds. I went over and said thank you to him directly. Myself and Emmanuel always found it surprising how few people say thank you to the doctors and nurses. I know it’s their job but I was thankful to him, so why not say it!

I went over to Zach who was now very, very out of it thanks to the ketamine. I joked with the nurse about him hopefully having a nice little high. I really should stop making drug jokes to the nurse and doctors or they were going to start thinking I was going to try and sneak some home with me or something. Zach was high as a kite and I was glad. He deserved to not feel pain right now. They told me that it would be a few hours before he came round enough to take the ventilator out, but five hours later he was still very high. He was twitching and wiggling around every now and again, but he wasn’t aware enough to be able to take his own breaths and so it stayed in for now.

It wasn’t until 6pm that night that the ventilator finally came out. He hated having all the hands on him, but he was happy when it was gone. He loved sucking on his dummy again afterwards. It was nice to see him without the tube in. He was super sleepy afterwards and so I just sat holding his hand again. I didn’t stroke his head too much as it made him wiggle around, which I think must have hurt him. So, I just sat and stayed there. I am sure he knew I was there. It was a big day for him. Emmanuel was gutted that he had missed this. He had been sorting things out at home for us. I messaged him all the updates but it’s not the same as being there. All that mattered was that Zach was ok, but we like to do things together when we can. He was so happy to see him when he arrived later that day. It was really sweet to watch him. “Hello Son,” he sang over our sleepy baby. He warmed my heart.

That evening we headed back to Ronald McDonald House feeling positive. He’d had the surgery. He was through the worst part of the recovery process, right? Well that’s what we thought.

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.

PICU – Frog legs

We walked towards the bed. I hardly recognised Zach as he lay there with tubes coming out from everywhere. His whole body was puffed up and his legs lay wide and bent at an angle like little frogs’ legs. I pulled on Emmanuel’s arm. “Is that the right bed? Is that him?”

“Yes, that’s him.” Emmanuel responded. I knew it was him, I just wished it wasn’t. I wanted to see my lively, awake baby without a big wound down his chest. I wanted to be at home cuddling him and taking pictures. Not stood here. ‘Is this really happening?’ I think was the question I was really asking. Or ‘Can I handle this? Please help me.’ was closer to the truth than what I had really said. We both knew it was Zach laying there in bed four.

We stepped right next to his bedside. I took in what I was seeing all at once. There was a clear plastic strip across his wound. It ran from just under his neck and stopped where his rib cage ended. Below this was a tube around 4mm wide coming out from stomach. The tube was filled with pinkish red liquid that flowed down very slowly to a drainage bucket on the floor. He had a ‘line’ in his neck called a central line. This was connected to tubes that had small plastic stoppers on the ends. They were called ‘smart sites.’ This is where his drug infusions were going in. He had another one of this in his inner thigh. This one was an ‘art line.’ As in it was in an artery and not a vein. He had a catheter inserted and we could just see the tube coming out the side of his nappy. He also had a thermometer up him bottom. We both winced at these two when we learnt what they were. He had two electrodes on his head that were measuring the oxygen levels in his brain. He had three sticky dots and coloured wires attached to his chest that measured his heart just as before surgery. Lastly, he had a blood saturation probe and a blood pressure cuff on his foot and leg to complete the kit. His nurse Cortney came over to explain to us what everything was. She joked about the catheter and our reaction to it. She explained everything so well, with respect and empathy, I could have hugged her. She was never Zach’s nurse again but I sometimes saw her in the PICU (paediatric intensive care unit) afterwards. She always had a lovely warm smile and nature about her. She explained to us that the surgeons were very happy with how everything went and now it was just time for recovery. She then explained all of the machines.

There was a monitor that had several different wavy lines. The first green one was his heart rate and rhythm. The one we are most familiar with from watching hospital scenes on TV. The next, a blue line that measures his Oxygen levels in his brain. A line for his blood pressure that was being measured from the ‘art line’ in his groin. A number at the bottom for his blood pressure from the cuff on his leg. A temperature number to the right of the screen and lastly one pale blue line that showed his breaths. On a screen below this was another set of lines. This screen shows the ventilation machine and how many breaths he is taking. There are different settings for these machines. At this point the machine was breathing for him.

He was heavily sedated on morphine and clonidine. The combination of the two create a pain free dreamy sedation. Not fully unaware but not sure where you are either. When we first arrived, he was still completely asleep. He was going to slowly come round from the drugs that in had in theatre. I have no idea at all what these would have been. The plan was to slowly lift the sedation over the next 48 hours and see how he is. They watch for urine output, the blood from the drain next to the ‘wound’ inside the chest and if he starts to take some breaths on his own. Along with all of the other wiggly lines on the screens.

We took some chair and sat by his bedside. We slowly built up the courage to get closer and talk to him. He would twitch slightly every now and again at the sound of our voices. I hated the thought of him being in pain. He looked pretty out of it at this point, but when he was more awake surely he would be upset? I knew we couldn’t stay all night but I desperately wanted to stay with him so he knew we were there. At 8pm the nurses changed shifts. The night time nurse was amazing as well. Esther. I immediately got a good vibe from her. After chatting to Esther for a while me and Emmanuel decided we needed to sleep ourselves. You can’t sleep on the PICU like you can on the wards. there are just chairs next to the bedside. I kissed Zach and said goodnight to him. We left feeling strange that we were both leaving the hospital together. Leaving him there again. Everyone tells you that they don’t remember, they don’t know you are there, but I really felt like he did. We couldn’t sleep on the floor next to his bed so we had to leave at some point, but it just felt awful having to say goodbye to him. What if he woke up upset? What if he knew I wasn’t there and hated me for it. What if he was just lonely? I had to push the thoughts to one side as we left and walked out into the cold night air. We chatted about the nurses today and how well Zach seemed to be doing so far. We spoke about both needing some rest tonight and that at least we didn’t have to sleep on the Savannah ward!

When we got back to Ronald McDonald House, we made some food and went to bed early. There was nothing else to do but sleep so that I could get back to him again. I set my alarm for 3am to express and went back to sleep until six. I just needed to be by his side and hold his hand. I needed to see him, to smell him. Even though his baby smell was now mixed in with that hospital disinfectant smell. For a long time, Zach would smell of that hospital smell, mixed with something unique to him that perhaps only me and his dad could smell. I ached to be near him.

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.

Savannah part 3 – The night before the operation

Each day blurred into the next. The doctors came and left with the same words. “We will just wait a bit longer.”

Zach’s heart showed a bit of a conundrum. The doctors could see that his heart on the left side was smaller than the right. They were concerned that once the narrow part of the aorta was repaired, the left side of the heart might not cope. It might be too ‘stiff’ to pump blood around the body well enough. He was a borderline case from the start. The left side was ‘adequate’ they hoped, but it was hard to be completely sure. So, they waited. We waited. Instead of having surgery within a few days of birth as we had thought we had to wait and see. The doctors needed to see what his heart would do as he grew slightly in the first few days of life. They just needed more time to decide what was the best course of action for him. They were considering closing the ASD, the hole in the heart, at the same time as correcting the narrow section of the aorta. Doing that would put even more pressure on the left side. So, for a week they didn’t know what was the best thing to do. It was frustrating at the time, but I can see why they wanted to be sure. All I could see was my baby who needed surgery wasn’t getting it. Every day was a struggle for him. He was attached to all these tubes and wires. He wasn’t feeding properly and was generally just uncomfortable. In my mind, the surgery would fix all of this. The quicker the surgery the quicker we were fixed and going home. Of course, things do not work like that, do they?

So, each day the scan of his heart would happen. Each day the doctors would tell me the same things. “We are not sure about the left side, let’s wait.” When the day finally came that they said those all-important words I was relieved.

I didn’t want Zach to have any surgery at all. But I also did not want to see my baby as he was for much longer. So, when they told me on the Wednesday that his surgery would be the next day on the Thursday, I was happy.

How it works is, each child is reviewed every day. The cardiac doctors came around as a big team and discuss the child with the parents and nurses each morning. They then make any treatment decisions for the day. If the child needs another X-Ray, a cardiogram or just to be monitored for example. This is noted by the nurses and reported to the relevant teams who would need to come and do these extra things for the child. Away from the bedside and in a small office the doctors then discuss the child. If there is anything urgent, they will make decisions then. Then there is the famous Wednesday meeting. On a Wednesday the entire team of cardiac doctors that are on rotation that week will meet with the surgeons, anaesthetists and other professionals required. They discuss each child and make a choice of what to do.

After the first Wednesday meeting of Zach’s stay, they decided they needed to watch and see how he responded outside of the womb and how his heart worked. In this week they gave him the drug that kept open the duct in the heart to allow oxygenated blood to go to his body. During this time, he showed good oxygen saturation levels and blood pressure across the upper and lower parts of the body. His blood pressure on his arm read the pressure before the blood went via ‘the duct.’. The blood pressure of his leg read the pressure after it went via the ‘duct’. A change in his leg blood pressure could indicate that the ‘duct’ was closing. This was shortened to pre and post blood pressure. So, we had two machines that read his saturation levels and his blood pressure ‘pre’ and ‘post.’ All of these remained stable. So, we waited.

The following week at the Wednesday meeting they finally decided that they would perform the repair of the arch. The aorta that comes out of the left side of the heart would be reconstructed at the section that it was narrow. Meaning that could then take him off the Prostin drug, allow the duct to close and blood would then flow through the new wider aorta as it should be.

On Wednesday the 26th February at just 9 days old, we knew that Zach would be heading to surgery the next day. That evening I went to our accommodation and slept for a few hours. Knowing that I probably wouldn’t sleep very well after the operation had taken place.  When the doctors came around to give us the details of the surgery the next day I wasn’t there. Emmanuel explained to me on the phone that they would need to take bloods before the operation. They need three vials. Which is about 8ml. This doesn’t sound a lot, but to get that out of the heel of a small baby; it’s a lot. He knew I hated to watch Zach as he screamed at the doctors forcing blood from his heel. What was worse is that it often never came willingly so they had to start all over again as the blood would clot. He asked the doctors to do the bloods as soon as possible before I came back so that he could be with Zach and save me the trauma of holding Zach’s hand as he wailed. They managed to get the bloods before I got back. Emmanuel said it was actually pretty ok this time. By this point, Zach’s poor feet were covered in pinpricks in various states of healing from blood collecting and blood sugar tests. The poor thing hated his feet being touched and would cry the second his sock was taken off. He was just days old and already had learnt that this meant something bad was coming his way. We often had to help hold him still whilst they took bloods as he would wiggle around making it harder for them to get anything. It creates a battle within yourself to take your baby and protect him from this pain but also knowing that it’s for his own good. I often cried next to him as I calmed him afterwards. I held his little head in my hand and soothed his cries. He would sometimes open his eyes and look at me as if to say ‘mum how could you let them do that.’ I joked with the nurses that when he was home, I would give him little baby massages and never make him wear socks so that we could undo the damage done. To the nurses and doctors, they did this every day. To us this was new. The pain was fresh and the screaming baby our first.

Once they had what they needed they left Emmanuel to calm Zach down. When I arrived later to switch with Emmanuel, Zach was peacefully asleep. Hopefully, this would be the last blood from the heel they would need for a while. We thought. We were wrong.

I was woken up at 5am by the doctor on the ward for that night. She told me very softly that the bloods they had taken had clotted and that they needed more. My heart sank. I couldn’t take much more. I had hardly slept again. Still being ill myself and waking up to express and Feed Zach every few hours. But I pulled myself up, rubbed my hand across my face to wake myself up and nodded at the doctor. “Ok,” I whispered.

She came over with the tray and equipment she needed. With just me and her, we got the bloods that they needed ready for him to have his operation in the morning. I held his body still as he woke up the ward with his cries. She squeezed and squeezed his little heel, letting each drop of blood collect into one of the small vials. After three vials were full, she was finished. She gave me the cotton to hold on his foot to stop it bleeding. I held his tiny body against me and calmed him down again. It was done. The last piece of the puzzle before he could have his operation and we could start the road to recovery and the road to, home, right? Wrong again.

He also needed his vitamin K injection. I didn’t know if he had it when he was born and it wasn’t in his notes. Nor was his blood spot from when he was born. So, at around 7am they came and took more bloods and gave him his vitamin K injection. I was in pieces on the floor by this point. I could not handle any more. Inside I was falling into myself. I could only think about the next moment ahead of me. I organised the bay area and sorted out putting rubbish in the bin, tidying his nappies and wipes. I packed my suitcase and moved bags around. I wiped down the table and folded blankets. It gave me something to do whilst I waited for the breakfast trolly to roll around. Then Zach awoke and I started to feed him. The merry go round of constant feeds and expressing, feeds and expressing. Then he wet his entire cot as he urinated whilst I was changing his nappy. Not once, but twice. I was defeated. The nurses helped change his sheets whilst I held him and his wires clear of the cot mattress. Another pile of dirty sheets, disappearing to be washed. It was like Zach knew and was rebelling against the situation.

I cried that morning more tears as I waited to know if his bloods were ok and if he would finally have his surgery. It felt like we had been here forever, that each day was a year in length. They went by so slowly but somehow so fast as well. I wanted to blink and be home. I wanted to walk away and never come back. But more than anything I wanted to hold my son and for him to be ok. Not just ok but happy. There was no point in any of this if he wasn’t going to be happy.

Savannah Part two – Tea and Toast angels

Savannah ward became my home for the next six days until Zach would have his first surgery. We had no idea it would take that long before his operation but he was a tricky little critter and so posed a conundrum for the doctors. For six days I stayed on the Savannah ward with Zach day and night.

The first two nights I had the hospital bed that sat upright in the bay next to Zach’s. The nurses pulled the curtains around to make us one giant bay together. The first two nights I managed at least two hours of comfortable sleep. The third night the ward was full so I had to sleep on the pull-down bed next to Zach’s cot. That night I remember so distinctly. I was laying on the bed shivering and shaking from the urinary tract infection I had. I was wrapped up in two hospital blankets, but I was still icy cold. I had an upset stomach and kept getting up to have to go to the toilet as everything was simply passing through me. (TMI.) And Zach was not feeding very well. He was feeding constantly or just sleeping for too long and his blood sugar would then drop. By the time the morning arrived I was a wreck. Then an angel nurse came in and saw me crying over Zach’s cot at the start of her shift. He was sound asleep and I was drowning him in my tears. She promptly pulled the curtains around us and stated ‘I am getting you some tea and toast.’ I nodded unable to speak. I leant back over his cot again and continued to cry. She reappeared later with the tea and toast.

“I’m sorry” I mumbled. Wiping snot from my nose.

“I haven’t slept and I am ill and I have a bad stomach and I can’t help myself I just keep crying.” I blurted out all at once. Angel nurse stood calmly and listened to me as I droned on about my poor self and how much I felt like I couldn’t look after Zach. I thought He was upset all the time. That I didn’t know if we were doing the right things for him. She listened and listened as I cried my way through an onslaught of emotions. I finally managed to pause and drink some tea.

“It’s a really good tea. Thank you” I told her.

“The trick is to use two tea bags.” She smiled at me and somehow, I felt better. Her kindness and the tea had brought back some sense of logic.

“Can you watch him whilst I have a shower?” I asked her. And of course, she did.

The angel nurse that day took care of me just as much as she did Zach. We started talking about many things and somehow my day lifted. It took me away from what was happening in front of me. I will be forever grateful to her.

Some of the nurses on Savannah were the kindest people I have ever met. I honestly don’t know how they did it. How they keep their patience. How they deal with seeing sick babies’ day after day. The Savannah ward is a unique place. A sort of microcosm. An ecosystem all of its own. It became my whole world and the nurses, my friends. Myself and Emmanuel had nick-names for some of them as we couldn’t remember all of their names. One was ‘Team leader.’ As she seemed to be the one that everybody was friends with. She was the Queen bee of the group when she was in. There was ‘Social Media’ who was often on her phone. We overheard her once asking a colleague what emoji she should send to a guy she was talking to. Each nurse had their own way of doing things as well. It was a game during shift changeovers to see which nurse we would get. I loved messaging Emmanuel and saying, ‘Today is going to be a good day, we have one of our favourites again’. At night If I had a nurse that I trusted (which was most of them) I would ask them to do one of Zach’s feeds for me if I was asleep so that I could get at least four hours sleep. They would often sneak into the bay and do just that. Letting me get some much-needed rest. They would say ‘well we have to be awake so we might as well do it. But you need some sleep.’ 

As the days on Savannah wore on, my time there started to get to me. I was going back to Ronald MacDonald House (our accommodation) in the afternoon and getting a two-hour nap. Then about four hours at night if I was lucky. Which sounds great for a new mum, but I wasn’t at home. I couldn’t lounge on the sofa all day, or call my mum or mother in law to come and help me. I had to sit and wait for the doctor’s rounds. I had to try and take in the information they gave. I watched Zach’s machines as they beeped away all day. I kept track in my head the of all the numbers. I was constantly on high alert. I think my cortisol stress hormone levels were probably through the roof! Plus, I was recovering from my own surgery. Every time I lifted Zach out of his cot, I could feel my wound pull. I would wince with pain as I pulled myself up from the low-down beds to stand up. My feet were swollen and puffy. My body ached for a proper bed and I cried constantly. I was a mess. But I looked around and every other parent there was in the same position as me.

All the parents dealt with things differently. Some would keep to themselves and watch their phones all day long. Others would chat to everybody they could. Some started to take it out on each other. I heard one distinctive argument from a couple that I will never forget. I wish I hadn’t have overheard it, but we all deal with things differently and I guess that was their way. One night on a ward together and you know the sound of every body’s snores, their babies cry and each person’s toilet habits during the night. You get very comfortable very quickly. Let’s face it they all saw me wandering around with a bra and maternity pjs on all day. I was constantly breastfeeding and had no care for covering up. So, they probably thought of me as the crazy, breastfeeding, crying woman.

There is a parent’s room at the end of the ward on Savannah. A haven for parents to step away from the bay when needed. To make a cup of tea or to store food. To be honest It wasn’t the nicest room in the world. It did have a lovely big open window that looked across to St Thomas’ Hospital building which is quite beautiful. I stood by that window and cried when Zach had his blood tests done. I stood by that window when I just needed to breathe after another day with no news. I stood by that window listening to hear if Zach had woken up. It was a good window.

The parent’s room also became the place of small talk. ‘How was your night?’ ‘Are the stitches out yet?’ and ‘ah fantastic she had her feeding tube out.’ Were common conversational topics. At first, it was really scary to talk to other parents. I felt as though I wasn’t qualified to be there. But I soon realised nobody was. We were all new to this. Or most of us were. Most babies on this ward were cardiac babies, all under a month old. Some were older. But I only saw one child who was older than five and she was only in for the day. That’s the nature of the ward and the specialism in the hospital. It all happens when babies are firstborn. So, unless someone had an older child then we were all very new to this. The nurses knew more than us. Heck, even the kids knew what was going on more than we did. It is scary being a first-time parent, then being a first-time parent to a cardiac baby.

Soon those small conversations became mood lifters. A little chat about progress during the time the kettle boiled could lift a whole morning. Often, I would feel as though Zach wasn’t like the others and as he hadn’t come in and then gone for surgery. But as I got talking, I realised it was common for babies to take longer, or to come back later. It made me feel better to know it wasn’t just us. The same for when I was feeling as though Zach was doing really well. Another parent would need me to reassure them. I Would tell them that we had been here a week and that it does get easier. We were all in the same boat, floating down the Savanah River.

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.