Open Heart Surgery - 5 years on

Today is the 5th anniversary of Martha Grace's first Open Heart Surgery. Five years seem's like a whole lifetime ago. But I can remember almost every minute of the 27th August 2013 as if it was only yesterday.

I remember waking up in Powis Place and the tightening in my chest as the realization hit me that today was the day we'd been planning since the 3rd of May. That the next time I lay my head down on a pillow my 5-day old daughter may not have survived the surgery.

I remember walking into CICU that morning and how oddly calm everything was, how everyone was going about their business as normal - how could they? Didn't they know what my baby was about to go through? Didn't they know how much of a big deal today was for us? It was 8am and the Surgeons Registrar was coming to meet us at 10am ready to discuss the surgery and for us to fill in the necessary paperwork. We decided we'd quickly go to get breakfast but asked for them to arrange for the Catholic Chaplain to come to see us, we wanted for Martha to have a blessing before she went to theatre.

I remember Mark, myself and my parents all stood around Martha's cot as Sister Catherine prayed for her, prayed for the surgeons and for everyone involved in her recovery. I just sobbed. It all just felt tragically sad, she was so tiny to be going for such a huge operation...I couldn't see how she was going to survive. I looked at the smooth skin on her chest and tummy and knew that it would never look like that again, after today there would always be a scar running down the middle of her chest.

I say this all the time but I can't believe what we endured. I can't believe that my only option as a new mum was to hand over my newborn to a team of surgeon's who couldn't guarantee they could bring her back to me alive at the end of the day. That pain has never left me. I still feel that CHD has robbed me of precious months with my baby girl, newborn days where I should have enjoyed all the last "first" were spent in an Intensive care unit with countless other families all in the same boat.

I hadn't had many opportunities to hold Martha before her operation, she was hooked up to an IV of Prostin, and the last time I'd held her the long line in her umbilicus came out - I'd been too scared to hold her after that. Holding her that morning, looking into her eyes and not knowing if I'd ever hold her alive again was gut-wrenching. When the bedside phone rang and it was theatre letting us know they were ready for her - I didn't want to hand her over. I wasn't ready. I didn't have any other choice though - she wouldn't survive without surgery. I just stood, glued to the spot as the nurse in charge went through all the ID checks and before we knew it, her tiny cot was being wheeled away. We left the ward just as the lift doors were closing on her. I'd taken one of her blankets with me and held it close to my face so I could breathe in her scent, that newborn smell that I would never smell again on a baby of my own, it would soon be replaced by a clinical smell and iodine.

We'd been told by a nurse the night before that the best thing we could do while the operation was taking place was to get out of the hospital. We spent the day walking around Bloomsbury, stopping occasionally for panads. But by 6pm I couldn't walk anymore, my body was still wrecked from giving birth 5 days earlier. We went to the Hospital canteen to wait it out but we got kicked out eventually as they were closing. We went to the main foyer and paced the reception area. It was just after 8pm by this time and we noticed the Nurse in Charge from CICU leaving after her shift, she turned around and asked if they'd phoned us yes. My heart was racing, "No, why - is she back?" my legs almost buckled beneath me when CJ said that she'd been back for about half an hour and they were just settling her in and that we should make our way up there in about half an hour.

She'd made it.

I had no idea what we'd be walking into when we were finally allowed in, but never in my wildest dreams had I imaged in the scene that greeted us. It was like a scene from ER, there was a team of about 10 people surrounding this tiny baby in a little cot. Each of them busy connecting different wires and tubes to various machines. We just stood on the sidelines and watched them all work in silence, fascinated at how they all knew what they had to do and were just working in sync with eachother. I could see her monitor but I had no idea what any of the information meant. I remember grabbing the SHO by the arm and making me explain what everything was, from the drugs on the syringe drivers to the different settings on her ventilator. He told me what her stats were, what they should be and what the plan was to get her there.

Although we knew beforehand and were fully expecting it, seeing her chest open was still quite a shock. Actually seeing her tiny heart beating away was amazing, Mark almost passed out at that point.

We left the hospital just after 11pm and made our way to our accommodation at The Sick Children's Trust on Guilford Street. Still in shock that she'd made it out of theatre alive. It would be a good few days before we started to feel safe that things were going to be ok. We'd have to battle with severe oedema, kidney failure, Peritoneal Dialysis and delayed chest closure before we'd be moved out of CICU just over a week later.

5 years on, I've sort of disassociated that baby from the little girl that we are hosting a tea party in honour of today. To me, they are two different people.

Nothing can prepare you for the day your child has surgery. They are days that you can never forget. Even 5 years on  - every hour of that day is ingrained in my brain in full technicolour.

Completely worth if for 5 years with my amazing girl.

GM
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