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.

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.

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.