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.