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.

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.

NICU – Meeting my Son

Holding my baby boy for the first time felt surreal and the most natural thing in the world all at once. He was in an open cot on the Neonatal Intensive Care Unit (NICU) ward. It is a clear sided rectangle with a soft gel mattress that was covered with a soft cotton sheet.  On top of the sheet is a rolled-up blanket that looped round him in a ‘u’ shape to form a ‘nest.’ It makes them feel snug and supported in this strange world they have found themselves in. He was wearing his hat and a nappy and nothing else. He was covered in blankets but the room itself was warm as well. He had the three stickers on his chest and stomach that measure his heart. ECG (electrocardiogram) dots that track the beats and rhythm. He also had a cannular in his arm. This was connected to a line that connected to a pump. Inside the pump was a giant syringe that slowly presses and pushes through the drugs. In this case the Prostaglandin E1, Prostin. (Prostin is a hormone that was keeping open the ‘duct’ in his heart to allow oxygenated blood to flow through and avoid the narrowing in the Aorta.) He had another cannula in his foot that was giving him fluids and glucose. He had a red light glowing through a band on his hand and another on his foot. This was to measure his oxygen saturation levels pre and post. Pre – meaning before the blood went via the ‘duct’ into the heart and post meaning after. A significant difference between these two would mean that the duct may have started to close and more Prostin would be needed to keep it open until his operation.

All of this information is new and overwhelming when all you want to do is cuddle your new baby. I had to take in what I was being told and what I was seeing whilst desperately wanting to just stroke his cheeks and rock him in my arms. The machines above his head were all keeping track of everything. We could see the green line creating the rhythmical heartbeat pattern. Another blue one beneath it that showed his oxygen saturation levels. It was like being inside a space ship. We had landed on an alien planet and had no idea what this new language was. Despite having looked around beforehand we still were not prepared for the depth of machinery and wires that would be involved. These were here to keep him alive. That thought does not sit easily on a new mother and father’s minds. What if they stop. What if someone doesn’t notice a change on one of these lines. “What if?” became a huge part of everything. Nothing was certain anymore. All we had was each moment. For me that was difficult. I like to plan things and organize them. Not knowing was horrible.

But back to the room and the cot and looking past all the machines and wires, laying calmly was my baby boy. His dad stood over him, looking proudly into his face. We asked a nurse to help us with the wires so that I could hold him. I had a pillow on my lap to cover my stitches and to help me support him. He was lifted from his cot and placed gently in my arms. I cradled his head in my elbow crease. His tiny body curved against mine. He was warm. He was soft. He nuzzled his head backwards and relaxed into me. He was home. He recognized me. We were one again. I would have stayed there for eternity if they would have let me. But I only had half an hour with him before I started feeling dizzy and needed to go back to my own recovery bed for my blood pressure checks. In those thirty or so minutes we became a family. He relied on us and we fell in love with him. Emmanuel stood next to me, hand on my back. We were all connected. My baby had that soft puffy newborn look to his face. His eyebrows were defiantly Emmanuel’s. His chin was from me. The lips could be either of us and the nose was one thousand per cent my Emmanuel’s side of the gene pool. I loved every tiny section. I stared at him and drank it all in. I cried over his body for the first of many times. The lines and wires attached to him were heavy. We had to hold them to keep them from pulling on his skin. Or worse coming off. It was always a two-person operation. I wouldn’t for a long time be able to hold my son by myself. I would always need someone or something helping me. That stung. I wasn’t going home with my baby to snuggle him in bed and lay him on my chest. I had to look at him lying in his plastic cot being kept here by things that I had no control over. It was going to be the start of a long journey and battle between my instinct to want to take him and hide him and to let the doctors and nurses care for him.

I looked at my Emmanuel and he looked back at me. We were a unit. Our son wrapped in his white dumbo the elephant blanket. His tiny mouth sucking on his dummy. We had a long road ahead of us. The fight harder than we thought and we were only just starting it.

Emmanuel lifted him from my arms and lay him back in his cot. The nurse came and helped him to place the lines and wires back correctly. He settled back down and quickly fell asleep. I left a square of fabric that I had kept with me and had worn in my bra. The fabric was placed next to our son’s head so he knew I was there even when I wasn’t. I cried so hard when I placed that little square next to his head. I felt like all the other mothers in the world have their babies next to them in a bassinet. I had to leave my baby with strangers in a sci-fi world of beeping machines. I could not take in what was happening. All I could see was his beautiful face. By now the Morphine had fully kicked in and I was floating on a drug high. I am glad that during the first week I had the painkillers to numb out reality. I don’t think I would have managed quite so well without them. Mentally and physically.

Alone To Recover

The nurses checked on me every half an hour after my C-section surgery. I was in a private room with a view across London. Emmanuel was with our baby. I was so alone at that moment. Yet I still felt full and happy, not sad. I felt like I had accomplished something. Something with a nine-month build up.

Emmanuel came to my room and gave me my phone. He had kept hold of it for me after Bethany (the Anaesthetist) had taken our wonderful birth photos for us. I had been alone with no phone for almost thirty minutes. I think that feeling was more bizarre than the numb legs were. He bowled into the room with the biggest grin on his face. He was a father. No matter what, from this point onwards he was a Daddy. I had had nine months to get used to the idea of having a baby every time I felt him kick. Emmanuel had this moment. It was written all over his face and his navy-blue scrubs. I am a Daddy. He looked like he might burst.

“How is he?” I asked.

“He’s good. The doctors are just sorting him out now.” He beamed at me with such joy, I couldn’t help but feel the same way.

“Go. Go be with him.” I would have pushed him out of the door if I could have.

“Are you ok?” he asked.

“I’m fine. Just go.” I was again left alone.

I looked through the pictures on my phone. Seeing it all captured made me so happy. I zoomed in on Zach’s face, his wide-open screaming mouth. That beautiful squashy nose. In one picture his face was next to mine and his hand was reaching for me. I couldn’t stop staring at it. Then my phone pinged and Emmanuel sent through pictures of him now. His bottom half was tightly wrapped up in a hospital blanket. He was wearing a hat with a white and grey star print on it that I had picked out as his first outfit, He didn’t need the baby-grow that matched as he was on a heated bed. His chest had three little wires attached to it with different coloured sticky pads, a red, a green and a yellow. These were to measure his heart. But I didn’t know that at the time. I barely saw them. I just saw his face. His beautiful fluffy new-born face. My son.

My parents had booked a hotel room in London near to the hospital. As soon as we gave the go-ahead for them to visit, they appeared in my room in a nanosecond. Armed with a gorgeous teddy and a card. It was so surreal to see them there. I had just briefly met my son and now my parents were about to as well. They came to me at my bedside, because of course I couldn’t move, and gave me hugs. I told them right away to go and meet their grandson. It didn’t take much convincing before they left to go and find him.

Again, I was alone. A nurse came in and took my blood pressure and observed my bleeding. Which involves lifting the sheet to peek at you and see if you are bleeding on to the giant pad sheets.  At the time I did not care a dot. Looking back, it was really humiliating. I asked when I could go and see my baby. As soon as you can get into a wheelchair was the answer. Over the next hour and a half, I sat there trying to wiggle my toes and get my legs to move enough to be able to get into a wheelchair. They offered me morphine and I accepted. Anything to make it easier to get off this bed and into that chair. By 3.30pm just over two hours after I had been stitched up, I was calling the nurse.

“I can do it. I can get in the chair.” I was so determined that I didn’t care if I actually felt ready or not. She wheeled in a chair with a humiliation pad on it. And a big sheet to wrap around me so that I wasn’t flashing my butt to everybody through the back of the chair.

I used every piece of strength I had to heave myself into that seat. I could move my legs but not properly. I was using my arms to get off the bed and closer to the wheel chair, closer to him. I stood one foot on the ground and lifted, exposing my naked back to the nurses. I did not care. I swung around and placed my butt down into the seat.  Leaving my remaining leg to drag behind me, with some effort I managed to pull it across and into the footrest. The nurses wrapped the sheet around the chair. I was so happy with myself that I ignored the pain in my abdominal region. I pushed it away like a leaf down a sticky stream of mud. It was not going to stop me seeing my son.

My dad came to wheel me over to the Neo-Natal Intensive Care Unit (NICU). I gleefully joked with him about Mario Kart driving as we whizzed past the rooms and receptions of each ward. We passed the lifts that separated the mothers from their babies. A wall between us. Soon, so soon, I was outside the room where he was. Emmanuel came out to meet me and to wheel me in. My wound was throbbing now. The morphine hardly touching the edges of the pain, but it was certainly making me high. I didn’t realise at the time but the morphine and the dihydrocodeine were making me feel giddy. I was a little bit ‘away with the fairies.’

I was ready. A nurse held the door open for us and I was pushed inside a softly lit room filled with four baby beds. I was about to meet my son, properly. To hold him in my arms for the first time. To look into his face, to hold his hand and whisper his name.