Six years on. Six years since the scan that changed our lives completely. The start of our journey as a heart family. One minute we were expecting a normal healthy baby. The next, we were heart parents. Our lives turned upside-down; excitement replaced by fear. Would our baby survive? What would the future hold? And how on earth would we find the strength to bear it?
The first step on the journey. The first of many. We didn’t know where that journey would take us. We hardly dared dream that we’d take our baby home. And now here we are – six years on. Getting to see that our baby grow and thrive, become an outgoing and happy little girl.
This is the time of year when I am acutely aware of just how lucky we are. This is the time of year when all the memories come flooding back again. Memories of all the steps on the journey so far.
The first of many trips to Oxford. Our first encounter with two consultants who we would come to know and trust. In amongst the bewilderment and anguish of the day we became heart parents, their compassion stands out. They took the time to explain and gave us space to process it.
The devastating appointment at another hospital two weeks later. The hospital where we were told that our baby had very little chance of surviving surgery. So little compassion with such devastating words. The pain and anguish as we sobbed together in the hospital chapel and prayed for a miracle. And then, we remembered a throwaway remark about in-utero surgery. A glimmer of hope.
In-utero surgery at 28 weeks’ gestation. A risky procedure, possibly being performed for the first time in the UK. We were scared, but it was our only hope. It took two attempts, but the surgery was a success. We were warned not to get our hopes too high, but baby Jessica now had a chance.
Jessica’s arrival – what a wonderful moment. I will never forget that rush of pure joy and love that filled me when I heard her first cry. Those precious few moments of being able to hold her before she was transferred to the neonatal unit. The hours of waiting while she underwent her first open-heart surgery.
The first week of Jessica’s life on PICU was a rollercoaster ride. We learned how quickly things can change, spent hours sitting and staring at our beautiful girl, surrounded by tubes and wires. What a amazing feeling it was when we were finally able to give her a cuddle. Jessica had another surgery at eight days old and moved to the ward a couple of days later. At four weeks’ old we finally managed to take her home.
The weeks between coming home and Jessica’s next surgery at three months old were precious. We treasured every moment. Two weeks before her first Christmas we were back in hospital for Jessica’s second open-heart surgery. Eleven long hours of waiting while she was in theatre. The joy of seeing her back in PICU followed by sickening fear when she needed emergency surgery later that night. For one awful hour we were convinced we would lose her. But she pulled through. We spent Jessica’s first Christmas in hospital but being together as a family was the best gift we could have asked for.
With Easter came another open-heart surgery. Jessica’s recovery was rocky. She contracted parainfluenza and her wound became infected. Our little fighter kept battling. She spent a month in hospital, two weeks of which were on PICU giving her consultant grey hairs.
Home again. A blissful five years of mostly normal life. There have been worrying moments along the way. Jessica has had several hospital stays in that time. Some have been for planned cardiac catheter procedures, some have been unplanned when illness has hit her hard. Normal life for us includes giving medicine several times a day, regular hospital and community nurse visits. Being constantly aware of Jessica’s colour and any potentially concerning signs. It is our normal. We are used to it; we are thankful for it. Our story could have been so very different.
This morning I watched Jessica playing with her sister. My wonderful happy little girl, just having fun and enjoying life. She’s at school, doing well. Six years ago I wouldn’t have dared dream we’d be here. These ordinary moments are so precious. I don’t always appreciate them – parenthood is challenging and I’m only human – but I do know how lucky I am to have them.
We still have big steps ahead on this journey. Jessica will need another open-heart surgery in the next year or so. I am becoming more aware of the changes in her energy levels. She is starting to look bluer and tires more quickly than she once did. We have started bringing the buggy with us again when we are out and about. I find myself telling her little sister to slow down when she runs ahead because Jessica cannot keep up. Little changes, each reminding me of the journey to come.
The future is never certain. I know this. Today, I can watch my two little girls having fun together and be thankful for it. I will make the most of the moments we have and pray that there are many more of them in our future. This is our life as a heart family. It is scary at times, and frequently challenging, but wonderful and magical too. There is joy in the journey. I am thankful for that, thankful for the everyday moments and very, very thankful to be here six years on.