Friday Focus 30/11/18 – Closing another chapter of Jessica’s journey

Jessica is never far from our thoughts, but we’ve been thinking and talking about her a lot over the past week. Last Friday, we had a meeting with Jessica’s cardiac consultant on Ocean Ward to discuss the findings from the post-mortem. We have now been given a more detailed report from this which is useful, although as we already knew, it provides no definite answers as to why Jessica died so suddenly.

 

The word "Jessica" with a picture of our heart angel

 

We know from the report that she had three viruses which basically amounted to a severe cold. The consultant’s view is that her Fontan circulation wasn’t working as well as it could have done, probably due to the fact that her anatomy was more complex anyway, and that the viruses were just simply too much for her heart to cope with, causing her to go into sudden cardiac arrest. He reassured us once again that had we been in hospital at the time, the chances are that it wouldn’t have changed the outcome and that we did our best based on what we knew at the time. Although we didn’t really get any more information, hubby and I both found it helpful to be able to talk things through once again with Jessica’s consultant.

 

We saw the chaplain who used to visit us on the ward and some of the nurses who had looked after Jessica. They all expressed their sorrow at Jessica’s death and gave us hugs. It is clear that Jessica is very much remembered by the staff who looked after her and that she touched a lot of hearts. We were also given a card from Jessica’s original cardiac consultant who retired a couple of years ago. He had been told of her death and had written to us to express his condolences. It was nice of him to remember us.

 

The hardest thing was saying goodbye to Ocean Ward, knowing that we have no reason to return now. Ocean Ward has been such a huge part of Jessica’s journey. She always received such wonderful care on the ward. It may seem odd, but we always felt safe there – we always knew that Jessica was in the safest hands and there was such a wonderful community spirit amongst the parents on the ward. Everywhere I looked, the memories of Jessica were so clear. I could see her sitting in the bed in high care; see her pushing a trolley down the ward on her first walk after the surgery. I saw her in the playroom, happily playing with the toys. Her last thank you card was still pinned to the board on the playroom.

 

Jessica pushing her trolley with her drains in the playroom on Ocean Ward

 

Walking away from Ocean Ward and all it represented felt like we were saying goodbye to Jessica all over again. Another chapter of our journey closed; another reminder that we just have the memories and not our beautiful girl.

 

We’ve also been focusing on Jessica in other ways this week. We had a couple of meetings with the woodcarving studio to discuss the design for her memorial and to provide photos to help them with creating it. We’ve also had a couple of visits to Jessica’s forever bed. It looks beautiful at the moment with all the fallen leaves covering it.

 

Flowers at Jessica's forever bed

 

Things that have made me smile this week

 

Sophie with Father Christmas

 

  • Going for a lovely family meal at Brasserie Blanc.

 

 

  • Sophie’s delight at having Auntie Maxine come to stay for a few days.

 

  • Introducing Maxine to geocaching.

 

  • Thomas signing ‘milk’.

 

 

  • Doing Christmas crafts with Sophie.

 

WordoftheWeek

16 thoughts on “Friday Focus 30/11/18 – Closing another chapter of Jessica’s journey

  1. Oh this was so hard to read and I’m sure much harder for you to write but I’m grateful that you’re sharing this experience. Getting final information is always so bittersweet. I cannot imagine how difficult these steps have been for you. I look forward to seeing Jessica’s memorial/carving one day when it is designed!

    1. Writing it out is always quite cathartic for me. It was hard to say goodbye but good to get some reassurance too. I’ll be sharing Jessica’s memorial on the blog when it is finished x

  2. Wow, little Thomas is so clever! What a week you’ve had. It must be so difficult not being able to get answers as to why Jessica died, although you are being reassured that you couldn’t have done anything differently. Jessica’s forever bed is beautiful and I’m sure her wood carving will make it an even more lovely place to be.
    Nat.x

    1. Thanks Nat. Not getting answers is hard but I think we’ve mostly made peace with it now. Having reassurance that doing things differently would have been unlikely to have changed the outcome does help in some ways x

  3. It’s always the way, you think you are getting somewhere with your grief and then something brings it all back in an instant. It will happen over and over but it will get easier. The memories will always be there and although they hurt with loss, you will eventually embrace them and look for them. I can fully understand how you feel about the ward, somewhere that kept Jessica safe, and now it’s not needed anymore. It’s natural to feel another loss in this way. My heart goes out to you all and I think and pray for you all often.
    I love the photo of Sophie with Santa, how cute, and Thomas is just so adorable, I so wish I could give him a snuggle xx

    1. Thank you Anne. Those moments certainly do hit very hard. In spite of the rollercoaster that hospital life was, our memories of it are positive because of the wonderful care that Jessica received x

  4. What a hard week for you. It is good that you got some answers but hard to read that you have no definite answer to why Jessica died. Jessica will always be remembered. She was such a special girl.
    Sophie looks so happy to have seen Santa!
    Ahh! I saw Thomas signing milk. What a clever boy x

    1. Thank you Kim. Having the discussion helped even if there will always be unanswered questions. I was so impressed with Thomas signing milk! x

  5. The what-ifs are the worst. I hope you have settled some of them this week. Just lovely to spend time in a place that held Jessica dear in their hearts. Tough, but I hope you take comfort in their memories too. Jessica’s forever bed is beautiful. Lovely to see it change in the seasons. I hadn’t realised that she would have a wooden carving. What a lovely touch. Thomas signing is amazing. Such a beautiful smile when you guessed right! Lovely photo of Sophie with Father Christmas. Hope you have lots of festive fun this week. #wotw

    1. Thanks Cheryl. The discussions certainly helped ease some of those what-ifs – they don’t shout quite as loudly in my head as they once did. We’re only allowed wooden carved memorials at Jessica’s forever bed to try and keep in with the natural surroundings. We were told that it would look very different as the seasons change – it is a beautiful spot anyway but especially so with the blanket of fallen leaves. Sophie loved her trip to see Father Christmas and I was so impressed with Thomas signing 🙂

  6. Ah Louise I bet this week has been so tough for you all, Jessica was a social little lady who touched so many lives and has left a huge hole in the world, it shows by the amount of people who miss her. I am glad you got some answers are are measured that there really was nothing you could have done to change things. Sending love to you all x

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