(Continuing from Part 1 )

In July 2013, we were returning from a family holiday. We were in the car, trying to decipher the Google Maps instructions, and the phone rang. It was the hospital with a date for the operation to correct Jenny’s heart defect. It was going to be in five weeks, at the beginning of August. The holiday was truly over.

jenny0202The upcoming op permeated every thought. It was a factor in every decision. The doctors were clear about the risk of death. For Jenny’s operation, they said it was as low as 1%. They delivered this figure with a bucket-load of disclaimers, simultaneously trying to reassure us and brace us for the worst.

We learned about a charity called the Zak Scott Braveheart Foundation. Their purpose was to buy presents for children who had endured heart surgery. Zak was a brave young lad who had had a number of heart operations, but sadly died two weeks before his 15th birthday . The Foundation ran as per Zak’s wishes and survives on donations. It always makes me tear up when I think about them. At such a horrendous time in both a child and parent’s life, they are there to get the kid a present. So much love and caring.

Jenny took it in her stride. She was excited that she was going back to the hospital because of the toys in the waiting room. I tried several times to view things through her eyes. A sterile waiting room, bright lights, doctors prodding, needles, tests. Despite all this, she didn’t fear the place. It was easy to be inspired by her.

Friday August 9th. That was the date. The operation would take five hours, give or take.

She was admitted, and placed in her own room. The night before the operation was surreal. The anxiety, the tension, the fear were all there. The walls of the overheated room were closing in.

The surgeon had earlier taken us away for a chat. He’d described the operation to us, forming a heart with his hands. They were the largest hands I’d ever seen. I wondered how such huge hands would be able to do anything with such a tiny heart. He’d asked us to call him Chuck, and we did. He’s since become a legend in our eyes.

jennyfeature02The morning of the operation was a blur. We crammed in a lifetime of stress and tension into those hours. There was an issue with Jenny’s blood test that they wanted to check before going ahead. This caused an hour or two delay, to increase the already horrendous wait. Then they came for Jenny.

We’d been told beforehand that only one of us would be able to go down to the next stage with Jenny, to accompany her while anaesthetic was administered. Emma stepped in. I couldn’t have done it. How she managed I’ll never know. She was hurting too, but somehow she had something, something that I didn’t, that gave her the strength to go in. I waited outside the hospital, nauseous. Powerless.

Shortly afterwards, Emma came out. We hugged. She told me that Jenny had started giggling after receiving the anaesthetic. She had been hallucinating, seeing balloons in the ceiling. This splash of colour in an otherwise grey day came from Jenny herself. Typical of her to make us laugh at the worst of time.

Five hours. We had already decided that we would wander around the nearby Kelvingrove Art Gallery but that didn’t waste anywhere near enough time. Nothing could waste time. Every second was dragging its heavy boots through thick mud.

The thought that Jenny could die kept coming back. 99%, I kept telling myself. I didn’t want the phone to ring until five hours had passed. An early call couldn’t possibly bring good news.

I thought of Chuck’s huge hands. He’d told us that, because Jenny was a girl, he would endeavour to make the scar as low as possible, so as not to be so visible when she was older. Chuck could do that.

The phone rang. It was far too early and a number I didn’t recognise. Panic.

yorkhillNext to the hospital there is some limited accommodation for parents of patients, known as Ronald McDonald house. The call was from them, letting us know that we could stay in a room in one of their flats and come and collect the keys. This was another layer of support that the various organisations offered. Amazing, welcome support.

The flat had a room for us and a shared kitchen. We had a bathroom en suite. We accepted it gratefully but in a zombie state. We understandably weren’t ourselves.

Our daughters, Eve and Rachel, were with Emma’s parents. Eve was born two days before Jenny’s first birthday. Over the following couple of weeks, there were times when we didn’t get to see Eve & Rachel anywhere near as much as we would have liked. Another source of heartache and guilt. Emma’s parents went above and beyond the call of duty. They always have done – whether it was turning up during the night to look after children while I took Emma to hospital when she was in labour or in any other way imaginable. It was just what they did. What they do.

Five hours eventually crept up, and we’d headed back up to the hospital. In the room outside the ward, we sat, waiting restlessly. You sit there, waiting for someone to tell you something, not cause a fuss. It’s almost like something in your brain is telling you that things will be more likely to be successful if you’re respectful and quiet. You have to defer to their knowledge and hand over all your trust. What’s the alternative? So you wait and don’t complain. And wait….

jenny0203

Part 3 to follow.