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.

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.

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.

20 Week Scan

We sat in the waiting room for over forty minutes awaiting our 20 week scan appointment, with all the other mums and dads at various points into pregnancy. The room was packed full of hot bodies with the heating cranked up to full blast like it seems to be in every hospital. I was melting! Finally my name was called and we were shown into a small dark room. My partner, Emmanuel, sat in the guest chair next to the bed and a screen was pulled around us. One woman sat by the computer ready to take down the measurements that would be read out by the sonographer.  They both introduced themselves and we set to work. You know the drill: the cold jelly, the uncomfortable bed and the pressing down until they find the right spot. Then we could see him, a leg, and a rib. So clear in grey and black on the screen in front of us. I was twisting my head to see it all but I didn’t care about the pain in my neck, I just wanted to see my little baby, who I had felt fluttering away in there for the last few weeks.

“Oh we would like to know the sex as well please” I said to the sonographer.

“Let’s see if we have a healthy baby first. We will look at that late”, was her sharp reply.

I was shocked at her bluntness but didn’t think much of it. Of course this is the anomaly scan. They are literately looking for anything that may indicate an unhealthy baby. Down’s syndrome is the one we probably all know about. Along with the other genetic conditions that can be possible to find early. But what we don’t often realise is that they are checking everything! And down to the measurement of a thigh bone can be an indication of an illness, disease or under development. For example, they check the face not to see how adorable they look but to see if a cleft pallet is present.

So the measurements began: the thigh bone, abdominal circumference, the skull and various others. All looked normal. Then we came to the heart and the sonographer couldn’t get a clear view of our little one’s chambers. I was asked to jump up and down, wiggle my hips and generally make a fool of myself to try and get the baby to move. All of which are massively difficult whilst squeezing you bladder closed as it is of course full. We try again. Still nothing.

“Please empty your bladder” was the short sharp instruction I was given. I trundled off to the toilets and did as she asked. I returned to the room and resumed my position on the thing pretending to be a bed. She started pressing the tool across my belly once more. The baby had not moved. This was a trend we had seen at our first scan and would continue to see right up until the end. Our little person in there – always hid from the scans and later the heart monitors. He did not like any of the intrusion, much to the annoyance of the medical professionals. The sonographer was getting irritated. She could clearly see a heart, because I could. We could all hear it beating away. That amazing moment when you hear their heart beat. But ours was dampened by the huffs and puffs from this woman. She presses harder, moves the end of the instrument more aggressively. She still cannot see what she is looking for. She calls in her colleague. I turn to look at Emmanuel who was holding my hand. He makes a face that I know to mean. ‘I know what you are thinking. I am thinking it too.’

The colleague comes in and takes over for a few minutes. They start chatting over us. Not saying anything to us at all at first. Then the second women speaks.

“Yes I agree with you.” She turns to us and finally acknowledges that we are even there and I am attached to the stomach that she is scanning. “We think we can see a problem with the heart. We have to confirm it with each other; which we have. We will send you to fetal medicine.” She finished and left the room. The original sonographer continues her scan and actually starts to explain what the heck is going on. My heart was racing by this point. What a way to drop that on new first time parents, with no explanation. We were stunned. The woman showed us the screen and pointed to the heart. “This side looks smaller than the other and there is possibly a hole, but we can’t see clearly because the baby is in a bad position.” She bluntly stated then began to move the wand away.

“Wait, have you seen the gender?” I asked.

She says nothing and places the wand back on my belly. “Here’s the spine and the bum and that there is the genitals. He’s a boy.” Just as plainly as if she was telling me the day of the week.

I was reeling with information. I wiped down my stomach, said my thanks to the women and left the room. We were in stunned silence at first. Taking our seats again to wait to have my notes folder given back to me. I felt an excitement and shock that I knew I was carrying a son. I had been thinking I was having a girl from the start so this blew my mind. So much happiness! I was having a boy and now we knew! But this sat within a whirlwind of everything else we had just been told. My mind cleared and the information began to settle. That our baby, who was so tiny in there – had a heart problem. Or a possible one. It felt like nothing and everything all at once. Like being sick and hungry at the same time. I couldn’t think about it enough, it was as though the thought had legs and was running away from me.

For some reason the rude manor & tone of the woman who scanned me, sat in front of anything else. I was SO annoyed with her! How dare she be so rude? I spoke with Emmanuel and we discussed that maybe she couldn’t see what she thought she could because our baby boy was sat in the wrong position. Maybe she was rushed and stressed and this was just a blip of information. But something in my own heart told me otherwise. This was the start of a long journey of happiness and anger mixed together at every turn. The not knowing is the hardest thing at all. Nothing is confirmed.