Zach’s first operation – Meeting the surgeon

The ward was quiet that morning. I felt that everybody seemed hushed and subdued. Either that or I was blocking everything out. It was sunny and the big glass windows at the back of the ward were letting in huge amounts of light. I was still in my pj’s. The morning was progressing quickly and I had again only had a few hours sleep. The nurses seemed to be off in other areas. Their desks sat quietly, folders dotted around and cups of tea that looked cold sat untouched. The small room that sat across from the nurses’ station was also empty today. There are usually doctors milling around in that area constantly, but today nothing. I was anticipating Zach’s surgery that day, but the day just seemed to be dragging along. I had no clue as to how the next steps would look. I was lost in that tense before moment. Like Christmas eve, but a lot less fun.

I was breast pumping on one side when the surgeon came to visit me. Zach was asleep in his cot. He pulled up a chair and sat next to me. He introduced himself and got directly to the point. He is a very handsome faced man with a very well-kept appearance. A serious but kind nature to him.

He told me that he would be performing Zach’s operation today. He told me briefly what he would do. He would be taking a piece of donor tissue and using that to reconstruct the ‘arch.’ I asked him to repeat what he had said about a donor. He nodded and replied “yes a piece of tissue from a donor’s heart” I had no idea before that moment that Zach would have somebody else tissue inside of him. What I thought about it later it was pretty amazing to think that one person who donated their organs would be able to save hundreds of babies with just one heart. It was only a small piece of tissue needed and so one organ could help many babies. I was astounded! I didn’t show that. I kept my poker face together and just nodded, still slightly dazed that this was finally happening.

He continued to explain that Zach would go onto a heart bypass machine. This means that the heart doesn’t pump the blood around the body for some time, a machine does the job instead. To use a bypass machine a certain amount of blood has to go through the machine. Babies don’t have enough of their own blood for this process to work. So, Zach would need some blood from a donor for that process to happen. I knew he would be on bypass but I had no idea that he would need blood. So, I offered mine. I knew we were the same blood type. The surgeon kindly explained that that would take a lot of time. I would have had to give blood weeks ago to do that. But being pregnant with Zach of course that wouldn’t have worked either. So, I had to settle for what I was being told. Again, I nodded and kept all the emotions inside. I was concentrating so hard on what he was saying to me. He told me that after the operation he would call me straight away to let me know how it went. I thanked him for offering this. He handed me the consent form and ran through the risks. Bleeding, infection, death and re-narrowing of the arch in the future – needing more surgery. The risks, of course, were not great but Zach simply wouldn’t live without the operation so there wasn’t a question involved here. It was just knowing. I signed the paper with shaking hands. He asked me if I had any questions. I looked away from him and paused. My mind was blank. I turned back “just look after my baby boy for me.” I said and finally, the tears came. “I will” He answered and stood to leave. I said thank you a million more times as he nodded goodbye. I then looked at Zach asleep in his cot and cried.

Still holding onto the breast pump machine in one hand I stood up and leaned over him. I stroked his little face. I looked at every single tiny inch of him just in case I would never see it again. I leaned in further and smelled his hair. I wanted to hold everything in my memory in case my little boy was taken from me. In case he wasn’t meant for this world. He started to stir and wake. I detached myself from the pump and lifted Zach to me. Taking his wires and blankets with him. I held him so tightly as I cried over his tiny body. I kissed him all over his face and rocked him until he fell back to sleep. My perfect little boy. His face was so round and adorable. His perfect little fingers. His chubby arms and round shoulders. His perfect little chest…Inside was a broken heart. How could someone so perfect everywhere else have something so majorly wrong. I held my hand over his chest and felt his heart pumping away. It was only able to do so because of the drugs that he was on. The fast pumping flutters hit against the palm of my hand. Keep beating little one. Stay with me. Just for me. I will always be here for you if you want to stay. It’s up to you baby. I will hold your hand if you want to stay. I said inside my head as if he could hear me. He snuggled in closer to me and rolled his little lips together. That was enough for me. If you want to stay sweet Zach then I will be here. I laid him down softly in his cot and found myself some tissues. The only thought that comforted me was that it was up to him. His little soul or spirit, however you like to think of it, needed to decide if it wanted to stay here with us and in this body. I don’t know why but that was just how I thought of it. It was up to him now. Just the same way he had told me his name when I was in the early months of pregnancy. He would let me know if he was going to stay or not. If I got to take him home or not. Taking in a thought like that is pretty impossible. Especially in such a high-stress environment. So, I just focused on what I needed to do there and then. I called Emmanuel to tell him that the surgeon had just been. He would be gutted to have missed it but he didn’t say anything. He told me he was on his way over.

I sat and waited, just staring at Zach and expressing breast milk. I couldn’t do anything else. Just sit and be with him. He was born on the 18th of February 2020 and his operation was the 27th February 2020. He was just ten days old. Please, please let me have more than just ten days. I spoke in my head to myself, to the universe. Who knows? Please, please just let me have more than ten days with him.

HDU and Breastfeeding

This was it, the moment I was waiting for. Zach was three days old and my milk was starting to appear. A small screen was placed around a chair area next to Zach’s cot. With the help of nurse Emma, Zach was lifted out of his cot and placed on me and a giant pillow. I put him to my breast and he started to latch and suck quite easily. This is it! I thought we are doing it! Then He pulled away and started to scream. I mean really scream like there was poison coming out or something. I rocked him and soothed him and tried again. The same thing happened. He started ok and then he pulled away and screamed. The nurse came back over to see how it was going. She could clearly hear him screaming. I showed her what he was doing and she sat down beside me to help.

“Let’s calm him down and get him nice and relaxed. An angry baby won’t latch.” She informed me.

So I rocked him and patted him until he was calm again. We tried again, but he just yelled at me. He got so upset that red patches appeared across his whole body.

“Maybe he can’t get any out. Let’s express a little first and see if that helps.” Emma suggested. She disappeared off and came back with the hospital breast pump machine and the attachments. The machine was on wheels and reached around a meter tall. She opened two packets of sterile equipment and handed them to me.

She explained how the plastic tube section can’t get wet. If it does the suction would stop working, but the rest can be sterilised. She showed me the suction part of the equipment and gave me a sterilising bag that goes into the microwave with some water in it to be able to steam sterilise it. I had no idea how any of this worked! It was staring at some very strange objects. She sat with me and explained how to connect it all and how to use the machine. I didn’t get much out at first but it was a start. The start of a very long expressing relationship.

I tried Zach on my breast again and he latched for a short period but still wasn’t happy. Emma said she would arrange for a lactation consultant to come over and help me later. I was so thankful that I had all of these professionals around me to help me. I let Zach rest. We would try again later that day.

In the early evening, myself and my mum went over to see Zach and to try breastfeeding again. This was the experience I will never forget. I had the small screen offered to me again, but I wasn’t fussed and it took a while to set it up. We didn’t bother in the end. My mum sat with me, the lactation consultant appeared, Emma was there and so was another nurse. I had an army and we were ready to do this.

Zach was placed on me and our giant cushion. I unhooked my bra and placed him on me just as I had done before. His suck reflex kicked in and he started to suck, but not for long. He started to cry just as he had before. The lactation consultant stepped in to assess his suck. She put a glove on her hand and her finger in his mouth. Zach sucked on her finger reflexively.

“He has a slight tongue tie but he should be ok.” She informed me. I took her word on it and didn’t think much of it.

“Let’s try this” and she gave me lots of things to try. A sandwich hold for my breast. A ‘rugby hold’ for Zach. Expressing a bit of milk first. Many, many things, but Zach just screamed. We had to stop after a while as he was so worked up. I felt deflated. I so badly wanted him to be able to feed that I felt I was failing him already.

We tried one last time before the lactation consultant left. We got everything in position and then she very quickly grabbed me and Zach and pushed his head onto me so fast Zach had no option but to latch and suck and he did. He was finally feeding. I was so happy. What I didn’t know at the time was that forceful action that she had just performed would only have very short-lived success. Zach was feeding, for now. Every time I fed him, I now copied what she had done, as soon as his mouth was open, I quickly shoved his head on my breast. I would later learn that this just isn’t best practise.