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.