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.

The Savannah

When Zach was born, we were in the neonatal intensive care unit and then the HDU neonatal unit at St Thomas’ Hospital. We then moved over to the HDU on the Savannah ward at the Evelina Children’s Hospital. Its very confusing, but the first HDU is next to the labour wards so parents are next to their babies. Savannah is a part of the Evelina hospital – in a whole other building!

We were moved to the Savannah ward late one evening in the first week of being at the hospital. Myself and Emmanuel call the Savannah ward, The Jungle. It is pretty wild. Imagine a large room with six cots all containing tiny babies. Next to the cots are the worried parents and walking back and forth between them are the nurses and doctors. Each bay has a blue curtain that pulls around your allotted little space. Inside that space, that is perhaps the size of a small shed, are two chairs a storage cabinet, a table and a mountain of medical infusions and monitors. Plus, two suitcases, three bags, breast pump equipment, shoes and a coat. Then imagine living in that space whilst trying to breastfeed your brand-new baby. The nurses have their desk area right next to the first cubicles. There is also the doctor’s office, scanning room, toilets and shower. It was as Emmanuel called it ‘The wild, wild west.’

When it was time to move across, we were walked from St Thomas’ to the Evelina with our two nurses and a student nurse. It was the first time Zach had seen the outside world. He looked around from his cot as we passed through glass corridors, taking in the blue sky, before falling asleep. He then slept for the rest of the walk. We were taken through the old part of the hospital where they have the teaching areas. There is a display case of old medical equipment. ‘The iron lung’ and other old ventilators. They looked like torture devices and sent a shiver down my spine. It made me think that medicine had a pretty brutal history. Street doctors that hacked off limbs and dentists that pulled out teeth with big metal plyers. What about the people that had been hooked up to those old machines, had they lived? Had any of this horror movie looking stuff worked? A movie scene popped into my head; the man had been strung out by his organs but he was being kept alive by machines. His intestines hanging on hooks. His heart beating out in front of him. I physically shook my head and tried to concentrate on Zach. He looked peaceful in his cot. Like an emperor on a travelling throne being brought across his land. All these people here for him and he was blissfully sleeping.

We arrived at the Savannah. As Emma and Emily dropped us off, I hugged them both. I had grown very attached to them in my days in the HDU. Our Savannah nurse came over to introduce herself. The HDU nurses were explaining to her about Zach’s medication and infusions. My heart quickened. Why didn’t she know this stuff? Were we safe here? Was Zach’s careful care going to be messed up? I started asking questions. My anxiety started to rise. In HDU you have two babies per one nurse. Here the nurses can have three babies at a time and there are six bays. I was so scared that something was going to go wrong. I was becoming prickly; I didn’t know how things worked here. A heath care assistant came over to help us ‘move in’ and when she started to move the breast pump machine out of the way to get to the plugs behind it I started almost yelling at her.

“I NEED THAT, you can’t take it!” So, I wasn’t quite yelling, but I certainly wasn’t nice to her. She explained that she was just moving it. I thought she meant moving it away from my area so I continued to tell her that she can’t. Emmanuel stepped in to explain what the lady meant. I stood back and let her finish. I felt awful. She was only trying to help me. The next day when I saw her again I apologised for how I had spoken to her. I explained that I was really unsettled being moved across and I was just feeling really anxious. She was lovely and thanked me for apologising. We actually got on quite well and started joking with each other about miscommunications. I didn’t see her much after this, but I would smile at her when she was around and she to me. “Well done.” My mum said to me after I apologised to the woman. It doesn’t matter how old you are but hearing well done from your parents always means something. “Thanks mum, she really didn’t deserve how I spoke to her. It was only fair.” Yes mum, I am a grown up after all!

Each bay has a pull-down bed next to the patient’s bed for a parent to sleep on. It is tucked into the wall. It is a few wooden slats with a thin foam mattress on top. It reminded me of the mats that you get in sports halls for PE. Where you line them up and do forward rolls and cartwheels across them. They are great, but not for sleeping on.

When the nurses switched over and our night time nurse came over she offered me a proper hospital bed in the bay next to Zach’s. There was nobody in there and she knew I was just a few days post-surgery myself. I could have kissed her. She pulled the curtains around us to make one big giant bay. For the first time I got to sleep next to my baby boy. The hospital beds elevate at the head end so that I could sleep sitting up. After a C-section it is extremely difficult to sleep laying down. It’s difficult to do anything to be honest, but laying fully flat is agony. So, there I was a new mum sleeping next to my baby for the first time surrounded by four other mums and babies all cocooned in blue curtains. The thing about the blue curtains is that they don’t block out any noise. So, all night long you can hear the nurses, the other babies and parents shuffling around. Of course, when one baby cries in the night so do all the other babies. It’s like they play tag with each other. ‘You start crying first this time and I will for the next round. Then we can take it turns like a dawn chorus so that nobody gets any sleep.’ I imagine this is what the babies were up to. So that first night I managed about an hour. 

The best thing about Savannah ward is the breakfast. When hand over is just finishing and all the curtains are being opened, the breakfast lady comes around and she says these magical words “Toast or cereal?” I always had toast and a cup of tea. The toast was cold and the little pots of butter and jam were those plastic kinds that taste more like sugar, but it was delicious! After hardly any sleep and facing a day of uncertainty on the ward, tea and toast just made the world better for a brief moment. In fact, tea and toast become something that I relied on. When Zach was awake at 3am and not settling. Or they came at midnight or 5am to take yet more bloods from his poor feet. I knew in a few hours that I was going to have five minutes where I could eat some jammy toast and drink some very strong milky tea. I often ate it one handed whilst holding Zach. Or Emmanuel would feed it to me if I had no hands free and he had arrived early. It’s the small things that become crutches. It’s the small details that make the long days and weeks bearable. They also fed the breastfeeding mum’s lunch and dinner. I didn’t always eat it but it was a small comfort to know that I would have hot food there at 8am, 12 noon and 5pm.

The only other thing that’s better than the tea and toast in the morning is when you have had a particularly bad night or early morning and one of the nurses brings you tea and toast accompanied by a listening ear.

The first day on the ward my mum was still in London so she stayed with me all day. She was there as I fed Zach constantly. She helped me as I cried because he just wasn’t getting enough. She listened to me moan all day long. There really wasn’t much she could do but at least she was there. Emmanuel had to go and sort out a big food shop for us and take It back to our accommodation. He also had to unpack all of our suitcases and organise our room where we were staying. I am so glad I had my mums’ company that day. But at the same time, I felt so bad for just being this big mess. This definitely wasn’t the happy day with their grandchild that most grandparents dream off. It was so handy having her there though. When I needed to go to my own appointment the day after. Mum and dad sat with Zach whilst Emmanuel took me across to St Thomas’ hospital so that I could see the midwifes. They sent a picture in the family WhatsApp group of Zach in his cot. ‘First babysitting duties’ was the caption. Mum and Dad stayed for a week in total. It was perfect, they were there when we couldn’t be. They sat with Zach we had to do other things. My mum was a friendly face in the sea of nurses when I was trying to feed and change him. Sometimes you do just need your parents. Myself and Emmanuel soon felt ready to do this with just the three of us, as a family. When Mum and Dad went back home we were ready to try to handle this all ourselves. I will always be grateful that my parents got to see Zach when he was so little. Soon his other grandparents would meet him as well. It really meant so much to me for them all to come to the hospital to be with us.