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.

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.

Four ECV’S and a Breech Baby

The weeks progressed and the news sank in a little. Some days I would feel hopeful and happy. Others I would be full of fear for what was to come. I soon found that working nights in the private members’ club that I managed was getting too much. The loud music, the drunk people and the 4 am finishes left me exhausted. I spoke to HR and started maternity leave early. I was going to miss my job and my friends there but my body couldn’t do the late nights and my mind was elsewhere. So, in late November 2019 I finished work.

I started nesting at home and getting things ready for Zach’s arrival. I wanted to be prepared as well in case Zach was going to come early. So, by Christmas time I had our hospital suitcase packed, the nursery ready and the car seat installed. I had pretty much everything we would need all sorted. I loved standing in his nursery and looking around. I would sit in his nursing chair and imagine what it would be like to be sat there feeding him. I started to find that I needed something to do. To take my mind off things a little bit. So, I got my sewing machine out and made gift bags for my family’s Christmas presents! After Christmas I got into the routine of seeing the midwifes on a bi-weekly basis for regular measuring check-ups.

The local midwifes would measure my bump each week and check Zach’s position. He was in the ‘Breech’ position for the entire pregnancy. Which isn’t a problem, until you get towards the end. At this stage its ideal to have a baby positioned facing down, with their head in the pelvis.

Zach decided that he wanted to stay where he was, with his head sitting under my right rib-cage and his bum sat above my left hip. He was laying diagonally across in utero. This is fine for the pregnancy bit, but not so great for the birth bit. So, I was given the option to have an ECV to try and turn him around. I desperately wanted an all-natural birth. I had been practising my hypnobirthing techniques daily and wanted to use them. With Zach in breech this pushed my ideal labour and birth further away from us. 

What the heck is an ECV? Is short terms two people push your baby around to try and get the head to face down and into the pelvis. It is exactly as it sounds. Brutal. ECV stands for External Cephalic Version. External being from the outside, cephalic being the head and version being turning. So turning the head from the outside as a rough explanation. Here is why they do it and the risks involved.

As Zach is a Cardiac baby, we had to have the go-ahead from his doctors at the Evelina hospital. This also meant having the procedure done at the Evelina/St Thomas’. So, Myself and Emmanuel did the drive into central London the day of the ECV. It had to be done at the Evelina as there is a risk of inducing labour. We needed Zach to be born where his doctors and surgeons were and not need to be shipped across London in an ambulance from our local hospital.

What they actually do in an ECV

They put heart monitors on my belly to listens to Zach’s heart. They monitored Zach’s heart for 30 minutes. He always started moving around when the monitors were on me. I imagined him trying to kick them away from him. The doctor explained that they are really loud for the babies inside. It must be quite a shock, like having your house suddenly start playing loud, bass-filled music. After some time watching the heart monitors they gave me an injection of salbutamol, which works to dilate the blood vessels. This helps to reduce contractions and relax the muscles that are supporting the baby. Salbutamol makes your heart race and your hands shake. It is very unpleasant but thankfully its effects do not last for long. The midwife described it as being flustered. I would say it’s like being high (on life of course) but without the fun bit, just the shaking.

Next my blood pressure and oxygen levels were measured periodically whilst Zach’s heart rate was still being monitored. The midwife and doctor left us alone for a while to let the drugs kick in and the monitoring to continue.

When they came back they checked in with me to see if the salbutamol had taken effect yet. It most certainly had. I felt like I was running whilst laying on a bed. My breath was short and fast and my body was shaking as if I had just squatted 90kg fifty times over. I knew I needed to stay as calm as possible during the procedure so that they had the best chance at moving him. Emmanuel held my elbow (my hand was behind my head) and I started to take long deep breaths. I found a spot on the ceiling to focus on and tried not to think too hard about anything at all. Which is much easier said than done when you have salbutamol and adrenaline rushing through your body. 

The first thing they did was to disengage Zach’s buttocks from sitting in my pelvis, which means they press really hard to try and lift him upwards. They then pushed Zach’s bum up towards my ribs. They paused and the other person moved his head down towards my hips. They did this step by step movement a few times.  This was all fairly bearable. The worst was the hand that was holding Zach’s bum. It was also pressing into me so hard that I felt like my intestines were being squashed down. It was like having a hard-blunt object held in place on a bruise. This was certainly not fun.

They managed to move the Zach some of the way round. Then he must have stuck out his little hands and pushed away or something because that was as far as he would go. He refused to tuck his head in. He refused to let his bum travel any further up. I was in agony from the pressure and they had to stop. The second they moved their hands away he swivelled right back to where he started.

I imagined Zach’s little face in there scrunching up in annoyance at all the disturbance. Kicking his legs out and doing everything he could to stay put. Then when he was back to his favourite position, I imagined him snuggling his head back into where he liked it best. His peace restored. I wanted to explain to him that he needed to help out and move around. But he was comfortable where he was.

It took me a few moments to recover from the first attempt. I soon wanted to try again. It was agony, but I was determined.

ECV take two

They looked on the ultrasound to confirm Zach’s position. He was back with his head under my right rib. This time the midwife and the doctor swapped roles. The midwife took Zach’s bum and the doctor his head. This time round was just as painful but I managed to breathe through it. Again, he got half way around and wouldn’t tuck his head in. They had to move him back to the original position. They can’t leave him half way. So back he went. That was it. The second attempt failed.  

The doctor and midwife advised me that now I needed to speak to my care team and we can go from there to make a decision on what to do for the birth. I knew there and then that it was either going to be a higher risk breech vaginal birth or a C-section that I was facing. I was devastated. We had just been through all of that for what felt like nothing.

Because Zach has a heart condition a breech birth adds more risk. I knew I would be advised against it. These are the statistics. 1 in 1000 babies come into problems in a normal straight forward vaginal birth. Its 2 in 1000 for breech. So the odds just doubled right there. Then with a cardiac baby they go way higher. A caesarean section is 0.5 in 1000. Clearly the odds are in favour of the caesarean section, but I really didn’t want to have major abdominal surgery and need to recovery myself just as my baby will be having his heart surgery himself. There is of course a small chance the baby will then turn by itself. The odds are 3 in 300. I was not happy leaving that hospital. I felt like I had failed somehow. I wanted so badly to be travelling across London back home thinking about my beautiful birth. But no such luck. Not today.

Back at home, laying on my sofa the day after I felt like I had run a marathon. My stomach felt bruised all over and it was painful to move. I was so determined to get him to turn that I spent the rest of that day upside down trying to encourage him to turn. He didn’t.  All I could do was continue to hang upside down and hope. I watched a lot of movies hanging off the edge of the sofa that week.

Risk of an ECV

Just in case you are being offered one here is what they told me about the risks.

Less than 3% of women have an ECV and it causes their waters to break or for the baby to go into distress. If this happens it means you would need to have the baby pretty soon. Possibly via a C-section there and then, or at least within 24 hours.  There is a slight chance that it causes the placenta to come away and cause bleeding. Or it can cause labour to start. The midwife and the doctor where I had mine done at St Thomas hospital in London explained that for them, one woman last year and one five years before that had to have a C-section due to waters breaking at the ECV. That’s it. It is very low odds, but just in case be ready and have you hospital bag with you. That’s what we did. Take some paracetamol for the soreness afterwards and you will be ready for anything. I personally didn’t take any painkillers, preferring to just soldier it out.

It has a 50/50 success rate, some hospitals are slightly lower at a 40% success rate which is the national average. It’s worth trying it if you want to have a natural birth. It’s worth practising those deep breathing and relaxation techniques as well. Be prepared for it to hurt because it does. But so do a lot of things in life. Like labour.