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.

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.