Three years on: reflecting on our heart family journey

The two photos below were taken three years ago today. They capture some precious moments with Jessica as we prepared for her to go to theatre for the second time since she was born. I remember it like it was yesterday. The anxious waiting, not wanting to leave her cot for a moment. Wanting to spend as much time as we could with her, praying that all would be well. She was so awake and alert that morning, looking up at us so intently. I can still see that beautiful little face looking back at me. A precious moment together before the porters arrived to take her off to theatre.

 

A photo of baby Jessica looking at me (top) and gazing at Daddy (bottom) - "Three years on: reflecting on our heart family journey"

 

We cried together for a moment after Jessica had disappeared from sight and then headed off to the hospital chapel to light a candle and pray. We lingered in the canteen afterwards, trying to eat something, trying to fill the time somehow. I remember the heart-stopping moment when my phone rang with a hospital phone number. It had been just over an hour after Jessica had gone to theatre. It was too soon to be telling us the surgery had finished. Too soon to tell us she was back on PICU. I can still feel that chill and fear in my heart as I answered the phone. The overwhelming relief when it turned out to be one of the midwives. Just a routine call to check if I needed a postnatal visit.

 

The call we were waiting for came a couple of hours later. The surgery had gone well and Jessica was back on PICU.

 

I’ve been revisiting a lot of memories over the last week as Jessica has recently turned three. My timehop has been full of photos and blog updates from those early days in PICU. We’ve celebrated two of Jessica’s ‘heart days’ in the last week or so. The first was on her birthday as her first open heart surgery was carried out on the day she was born. The second is today – the date that the second part of her hybrid procedure was carried out.

 

Baby Jessica looking up at me while I stroke her cheek

 

Reading back through my blog updates back then reminds me of what a rollercoaster those early weeks were. We clung to every precious moment we could get with our baby girl and every shred of hope we could hold on to. That first day especially stands out in my mind. The overwhelming joy when I heard her first cry as she was born. The fear of whether she would get through her surgery. An endless wait for news, trying to fill the hours, praying desperately that all would go well. Our joy at being able to see her on PICU late that night after her surgery and the relief that she had got through her first open-heart surgery.

 

The emptiness I felt leaving her there and returning to the maternity hospital across the road. Thankfully we had a single room where my husband could stay overnight with me. I missed my bump, missed those little movements, missed my baby desperately. Being separated from your newborn baby is the most unnatural thing in the world. I remember phoning PICU very early the next morning to see how Jessica was, eager to go back and be with her.

 

Jessica on her 3rd birthday holding a Little Hearts Matter newsletter open to an article written by her daddy

 

In many ways those scary days feel like a dream when I look at Jessica now. She is doing so well and appears to be so healthy. We are truly thankful to have come this far. Yet with the joy and celebration of marking another birthday, another milestone, comes that tinge of anxiety beneath the surface. The thoughts that I push away on a day-to-day basis are harder to ignore.

 

I know that we will have to relive that rollercoaster ride again as Jessica will need her next stage operation in the not-too-distant future. However, she will need another cardiac catheter procedure beforehand to check how her pulmonary arteries are growing. At present there are no plans for this to take place until next year. We hope that the next major surgery is still at least a year away but those moments are starting to feel extra-precious once again.

 

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25 Comments

  1. September 15, 2014 / 8:49 am

    My goodness, what an incredibly hard time that must have been for you. What a beautiful title girl x

    • September 15, 2014 / 7:48 pm

      It was quite a rollercoaster ride – it is such a blessing to see how well she is doing now x

  2. September 15, 2014 / 1:36 pm

    That must have been a truly difficult time for you, it must’ve been incredibly nerve wracking waiting for the news that she was okay and you could visit her again. Popping in from What’s the Story.

    • September 15, 2014 / 7:50 pm

      It was quite a rollercoaster ride – such a huge relief when we got that call to say that all went well x

  3. September 15, 2014 / 3:36 pm

    When I first started reading this, at the back of my head, I kept thinking – please let this be a happy ending and I’m glad it was! But it must have been such a painful and scary journey, one that’s in the past now. She looks so adorable in the last photo 🙂 #whatsthestory.

    • September 15, 2014 / 7:51 pm

      Thank you – it has been quite a journey at times and I’m so thankful that she’s doing so well now 🙂

  4. September 15, 2014 / 3:41 pm

    I can’t begin to imagine how hard it must have been, and how hard it still is knowing that there is more to come. Those photos are just wonderful; of the alert and focused new born and the happy three year old. #WhatstheStory

    • September 15, 2014 / 7:52 pm

      It has been quite a rollercoaster – I try not to think too much about the next stage if I can help it but there are definitely moments when I get quite anxious about it. The first photo is one of my favourites from the early days and it is lovely to see how well she is doing now x

  5. September 15, 2014 / 6:45 pm

    You, your family and your daughter’s strength throughout these events is astounding and certainly admirable. She is precious and I wish you all well.

    • September 15, 2014 / 7:53 pm

      Thank you – we have had a lot of support from friends and family which really helped get us through those early days x

  6. Le Coin de Mel
    September 15, 2014 / 7:03 pm

    I know she is fine, but as I read about the op, I can imagine you there, not wanting to leave her side for even a second. You must have been terrified. Our little ones are so precious. I send you all lots of love. Xxx Mel

    • September 15, 2014 / 7:54 pm

      It was a very scary and anxious time – thankfully she is doing well at the moment and we feel very blessed that she has come this far and done so well, we have been very lucky x

      • Le Coin de Mel
        September 17, 2014 / 10:01 pm

        Xx

  7. Louisa
    September 16, 2014 / 7:00 pm

    I cannot begin to imagine how terrifying this must have been for you. I am glad your little bundle is now a happy and healthy little lady x

    • September 16, 2014 / 9:25 pm

      Thank you – it was a very scary time and we have been very lucky – it is so lovely to see how well she is doing now x

  8. September 17, 2014 / 8:21 am

    Such a roller coaster Louise, but it’s amazing how well Jessica is now doing! A true miracle 🙂 #sharewithme

    • September 17, 2014 / 8:28 pm

      Thank you – it was a rollercoaster but I would do it all over again if I had to – my little girl is such a huge blessing 🙂

  9. September 17, 2014 / 7:27 pm

    Wow. What a journey. Beautiful post and gorgeous pics ! xx

    • September 17, 2014 / 8:30 pm

      Thank you – it has been quite a journey but seeing how well my little girl is doing makes it all worth it 🙂

  10. September 18, 2014 / 1:52 pm

    What a beautiful post. Happy birthday to your precious girl. I cannot imagine what you must have been through already, and what you face too. Sending lots of love x x

    • September 18, 2014 / 8:56 pm

      Thank you – it has been a rollercoaster but all worth it to see how well she is doing now, we have been very lucky x

  11. Jenny
    September 18, 2014 / 6:47 pm

    WOW what a journey. That must have been such a hard time but you have raised a gorgeous little girl she is adorable!!!! Love the photos! Thank you os much for linking up to Share With Me #sharewithme

    • September 18, 2014 / 8:57 pm

      Thank you – it has been very hard at times but seeing how well she is doing now is a huge blessing and I know how very lucky we are to have her. Lovely to link up again.

  12. Kim Carberry
    September 24, 2014 / 8:47 pm

    The last few weeks I’ve been getting heart realated stuff on my Timehop…. It’s actually 5 years tomorrow since we went for their post op check! Such a roller coaster of emotions….
    So glad things are going well! x

    • September 24, 2014 / 9:01 pm

      Thank you – yes timehop does make you relive those memories. I’ve been looking back a lot over Jessica’s blog these past few weeks x

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