Six years on: our journey as a heart family

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?

 

A collage of images from our heart family journey - the 20 week scan picture; me and hubby with a newborn Jessica; Jessica wearing a Santa hat on her first Christmas in hospital; Jessica recovering from her third open-heart surgery; Jessica having her sats checked and Jessica and Sophie having a cuddle. "Six years on: our journey as a heart family"
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.

 

Me and hubby holding a newborn Jessica on the neonatal unit

 

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.

 

Me, hubby and Jessica on the ward for her first Christmas
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.

 

Jessica having her sats checked at home
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.
Jessica and Sophie having a cuddle

 

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.

 

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39 Comments

  1. May 3, 2017 / 9:50 am

    Aww! Just look at Jessica now. She has done so well!
    I hope the surgery goes well when it is needed….She’s such an inspiration x

    • Louise
      Author
      May 3, 2017 / 10:09 am

      Thank you Kim – she has done amazingly well. So proud of her x

  2. May 3, 2017 / 11:34 am

    She is such a beautiful little girl Louise, I cannot begin to imagine how it has been for you as parents. It’s a joy to read your Country Kids posts and see what she achieves with her little sister. She’s a fighter and I wish you all the very best for the future and for lots more smiling faces #SSAA

    • Louise
      Author
      May 3, 2017 / 3:57 pm

      Thank you so much Mary. It has been so hard at times but seeing how well she is doing brings me so much joy x

  3. May 3, 2017 / 12:17 pm

    Jessica and the whole family have done so well. Knowing that these scary, but necessary operations are on the horizon, must be tough to live with.

    • Louise
      Author
      May 3, 2017 / 3:55 pm

      Thank you Erica. The thought of the next surgery is a scary one. I know she has to have it and in some ways seeing the changes which make me realise how necessary it is help a little.

  4. May 5, 2017 / 8:13 am

    Louise, it’s a roller coaster isn’t it? You have summed it up beautifully here.
    My own children have had their own issues, esp. my son, so I know how it feels as a parent, not just as a patient. Believe me it is worse being a parent!
    You are all strong and part of a very loving family which is so important in supporting Jessica. She knows she is loved very much and that is the most important thing xx

    • Louise
      Author
      May 5, 2017 / 8:56 am

      Thank you so much Donna. It is a rollercoaster and I’m always interested to hear your take on it all as both a patient and parent. It helps give me more of an insight into Jessica’s world too. There is so little I can do as a parent at times other than just love and support Jessica x

      • May 5, 2017 / 10:48 am

        Love and support are the most important things you can give her.

  5. May 5, 2017 / 10:38 pm

    So lovely to hear Jessica’s and your story from the start. She’s done so well, and hopefully her next surgery will be timely and will come without any side effects. #sharingthebloglove

    • Louise
      Author
      May 5, 2017 / 11:22 pm

      Thank you Emma. She has done well – fingers crossed for the next surgery.

  6. May 6, 2017 / 5:43 pm

    You have such a lovely family Louise, and Jessica’s story is so inspiring. I think like most people I just can’t even imagine how I would have felt getting news like that, but I’m sure reading about how far Jessica has come must bring hope to lots of people in similar situations. Wishing you all the best with the next surgery. I absolutely love that photo of the three of you post birth – the look of pride and love on your face and the way Michael is looking up at you is just amazing. Thanks for joining us at #SharingtheBlogLove

    • Louise
      Author
      May 8, 2017 / 8:20 am

      Thank you so much Katy. That photo is one of my favourites – it was such a magical moment. Even knowing what was ahead of us didn’t dampen our joy for a moment. So good to see Jessica doing so well now 🙂

  7. May 7, 2017 / 3:35 pm

    Oh bless her, you have all been so much. I do hope that the next surgery goes well and that Jessica continues to thrive, she is an amazing little girl.
    Nat.x

    • Louise
      Author
      May 8, 2017 / 8:35 am

      Thanks Nat, she is amazing and it’s so lovely to see her doing so well. Fingers crossed the next surgery will be a while off yet!

  8. May 7, 2017 / 10:03 pm

    I know people always say how cute another mom’s baby is but usualy it’s just to be nice. I mean it when I say that your baby is absolutely adorable even with tubes and bandages on her. Her face is truly sweet in those pictures. She is growing into a cute little girl too. I can’t imagine living your life or how you manage to cope. You are incredibly strong. I wish you and your family all the best and I hope for the best possible outcome for your little one. #SharingtheBlogLove

    • Louise
      Author
      May 8, 2017 / 8:41 am

      Thank you so much. She is a little sweetheart and it is lovely to see how well she is doing now 🙂

  9. May 9, 2017 / 7:46 pm

    Oh Louise you are an amazing family. There are no words for what you’ve been through and we are incredibly lucky to have such wonderful doctors in our country. I hope that Jessica’s next surgery comes at a time when she needs it and that it gives her everything she needs to continue to thrive. Your girls are beautiful and I love seeing them together. Thank you for joining us at #SharingtheBlogLove

    • Louise
      Author
      May 12, 2017 / 8:15 am

      Thank you so much Laura. We have been so fortunate to have such wonderful medical care. Thank you for featuring my post this week x

  10. May 9, 2017 / 7:56 pm

    Oh my goodness, your journey with your precious girl has brought out emotions you never probably knew you had.
    To know that she needs more surgery must be so daunting but also knowing how it will benefit her, makes that decision slightly easier I guess.
    She always looks so happy in your pictures, hope the surgery goes well, when the time comes x #SSAmazingAchievements

    • Louise
      Author
      May 12, 2017 / 8:15 am

      Thank you Jeannette. The thought of the next surgery is scary but seeing the signs that it is needed does help make that decision a little easier. Hopefully we’re still a little way off though x

    • Louise
      Author
      May 12, 2017 / 8:18 am

      Thank you so much Laura. She is my little miracle x

  11. May 12, 2017 / 2:05 pm

    Your family are truly inspirational. As a non-mum I often worry how I would cope with having a sick child but you guys are proof that we are stronger than we know, and we cope with what life hands us. This was a lovely post to read, thank you for writing it. #sharingthebloglove

    • Louise
      Author
      May 15, 2017 / 8:48 pm

      Thank you. I think you never truly know how strong you are until you have to be strong. If someone had told me back then that I would have coped with what the last six years have thrown at us, I would never have believed them.

  12. May 12, 2017 / 4:53 pm

    Jessica’s story (and yours) made me cry (that photo taken at her birth!) and then smile to see her now. What a lovely post. Thank you for sharing. #Sharingthebloglove

    • Louise
      Author
      May 15, 2017 / 8:49 pm

      I’m sorry to make you cry, but glad I made you smile too. It’s been quite a journey but so lovely to see her doing well at the moment 🙂

  13. May 12, 2017 / 8:11 pm

    Wow how amazing. How terrifying it must have been for you, and how incredible is modern medicine? So glad that God gave you your miracle x

    • Louise
      Author
      May 15, 2017 / 8:55 pm

      Thank you so much Laura. Modern medicine is certainly amazing. We are so thankful that Jessica was given that chance x

  14. May 12, 2017 / 9:02 pm

    What an amazing child and an amazing family! I’m so happy all has gone well! I was just reading your open letter to that doctor and it made me well up. You two had to be so terrified 🙁 Thank God for the miracle of modern medicine! #SharingTheBlogLove

    • Louise
      Author
      May 15, 2017 / 8:56 pm

      Thank you Mary. It was a very scary time. Modern medicine is amazing though. So wonderful to see how well Jessica is doing at the moment.

  15. May 13, 2017 / 1:24 pm

    I wish you many more years together making wonderful memories. We are so blessed to have wonderful, caring staff at the Oxford hospital. My eldest caused me worry too. #SharingtheBlogLove

    • Louise
      Author
      May 15, 2017 / 8:59 pm

      Thank you so much Helena. The staff at Oxford were wonderful. I’m glad that you had such a great care from them too x

  16. May 14, 2017 / 11:06 am

    Wow what a journey! I hope everything goes well with the next surgery, it looks like you have a little fighter!
    #SharingtheBlogLove

    • Louise
      Author
      May 15, 2017 / 9:39 pm

      Thank you so much Kimberley. She certainly is a little fighter.

  17. May 16, 2017 / 1:34 pm

    You all have done so well. I am sure the past six years has been an emotional roller coaster. Like you say your daughter is a little fighter. It always amazes me how strong our kids are. Big hugs lovely. X #SharingtheBlogLove

    • Louise
      Author
      May 16, 2017 / 8:13 pm

      Thank you so much. She certainly is a little fighter. It is lovely to see her doing well at the moment 🙂

  18. May 17, 2017 / 9:13 am

    It’s so incredible to see how far she’s come. She’s amazing. I hope you post many more posts like this one in years to come!

    • Louise
      Author
      May 29, 2017 / 7:12 am

      Thank you Jenni. I hope so too! 🙂

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