Five years ago today, hubby and I went off for the 20-week scan, excited at the thought of seeing our first baby on the screen. We left the hospital that day with our world having changed forever. There was something wrong with our baby’s heart.
Five years ago today, we became heart parents.
I blog a lot about my reflections on being a heart parent but hubby rarely shares his thoughts. My method of coping with things is to write about them, either here or in my personal diary; his is to focus on the immediate situation and to store the memories away until he needs to bring them out again. I’m incredibly touched that he has been willing to share them for my blog – and it’s been interesting for me to hear his perspective on it all again too.
Five years into the journey – this is a heart dad’s perspective:
“Five years. It feels like a long time ago; so much has happened in that time.
I didn’t know what to expect from the scan that day. I thought we were just going to see the baby and whilst I knew that they would be checking to make sure everything was developing normally, I never imagined the day would end up with being told what we were told.
Most of it is a blur now. I remember going to the scan and being sent for a walk to help get the baby into a better position. I remember sitting in the café before going back to the scan room. I know Louise was worried when she saw a second person there, but I didn’t think much of it at that point – I just thought it was someone more senior. We went to the room with the tissues, were told that something didn’t look right with the baby’s heart and that we would be referred for another appointment to look more closely. The midwife gave us some leaflets and told us not to Google anything because it would scare us. I remember having to go for a work meeting after we came home, and being relieved at being called away to go to Oxford; going to the appointment at Oxford and then coming home and having to explain it to everyone.
I was glad that Oxford could see us that day – we didn’t have to go to sleep that night worrying about the unknown because we knew (even if I did wish I could wake up and find it had all been a dream). The doctors were brilliant and the diagram they drew really helped us to understand what was wrong with Jessica’s heart. For me, it helped to know what the parameters were that we were dealing with and the options available. Even if it wasn’t very positive, we at least had some idea of the pathways we could follow. What reassured me most was being told that if Jessica got through the surgeries, there was a good chance of her being able to do the things that most children could do – she might not be able to run very fast, but she could have a reasonably normal quality of life.
There’s so many different conditions out there and it’s a whole field that you never really know anything about until suddenly you’re thrust through a door and you can’t escape it – you just have to try and absorb the information and find your way in this new world. When I woke up that morning I had no idea that this door even existed and then suddenly I was there in this whole new world that I never expected to find myself in.
It brings home the fact that things change. In a day, in an instant. Something just happens and then suddenly everything’s different.
I never thought “why us?” It is what it is, the start of a journey, a journey I never expected to take.
Looking back, it’s amazing how quickly everything happened. Eight weeks after we found out, we were having in-utero surgery and it’s amazing how we managed to pack in all the appointments, and the discussion surrounding it so that surgery could take place. The whole process from diagnosis to Jessica arriving was only eighteen weeks.
I just wanted her to be able to meet her – I didn’t think further ahead at that point. And then once she arrived, it became all about focusing on the next step, the next hurdle. I coped by going with the flow – accepting the rollercoaster of surgeries and being in hospital. I learned that things can change quickly which made it hard with trying to give updates to family on how well Jessica was doing.
I remember seeing families with older children coming back in after not having been in hospital for a couple of years or more, and it seemed strange. We spent so much time in the hospital in that first year and now it will be us coming back in after a longer period of time. And in a lot of ways, it’s harder to go back – we know Jessica and her personality so much more now and she’s much more aware of what’s going on.
Louise focuses more on the day-to-day rather than looking ahead, but I can’t do that. Although the fear of what might happen is still there, I have to plan ahead, to think about work and everything that has to happen in the coming months. Hopefully we’ll get through the next steps and carry on with normal life again.
We’ve been so lucky. I look at Jessica and see how much joy she brings to everyone around her – to watch her laughing, and singing and dancing, and just enjoying life is amazing. I don’t ever want that to end.”
Thank you so much hubby for sharing your thoughts about the last five years and for being such a huge source of strength to me throughout the last five years. We are so lucky to be here now and to have been able to watch Jessica grow and become the wonderful little girl she is.
Next month will see us take the first step towards Jessica’s next surgery as we head back into hospital for a cardiac catheter procedure. When we took our first steps on our journey as a heart family five years ago, our belief that our baby girl was in God’s hands and that somehow we would endure the journey ahead helped us through. Somehow we will make it through the next steps too – I just hope and pray that we all come through it together.
I’m glad your husband got to share his thoughts and feelings too. They do say that men take a completely different perspective on the same thing as a woman does. Generally wanting to solve the issue, and if they can’t, then they focus on the future rather than the present sending you all the biggest loves and hugs in the world Xxx
Thank you Sassy – it was interesting to hear his perspective as he so rarely shares it, he just gets on with things and accepts them for what they are. Thank you for your lovely comment and love and hugs are always appreciated! x
It’s wonderful to hear your husband’s thoughts, I hope he enjoyed (if that’s the right word) writing it. With different approaches and different focuses you two sounds like a perfect team. I feel so much affection for your family and your ongoing story as a family and it was really lovely to read this. I’ve been thinking a lot about how a world can change in a moment…we have our twenty week scan tomorrow and my husband and I had that conversation last night…our whole world could shift tomorrow. I sort of want to just carry on with today! Thank you for sharing Lucy x
Thank you so much for your lovely comment Lucy – I think we do balance each other out well as a team with our different approaches to things. I hope that I haven’t completely terrified you for your twenty week scan – whilst it’s important to be aware of what the scan is for, the chances are that everything will be just fine. Will be thinking of you tomorrow and hope that all goes well with your scan xx
Three years ago we went to GOSH for our first appointment there after Liverpool weren’t very positive the week before. Isn’t it weird that 3rd May is an important date for both our families.
Mark is much the same as Michael, he takes it all in his stride and doesn’t really like to talk about how he feels. I think Mark feel’s that he has to be strong for me, to be honest – I think I’d rather he showed me how he was feeling so that I didn’t feel like I was experiencing it all on my own.
xxx
It is very strange that 3rd May is so significant for both of us. It sounds like Mark is very similar to Michael in how he approaches things, and I know he tries to stay strong for me too but every so often, I do try and encourage him to talk – it’s always very emotional when I do so I don’t do it too often – but it really helps me to hear his side of things and I know it might help other heart dads too to hear his side as well. Hope that all goes well with Martha’s next appointment xx
Ahh Louise, what an emotional post. You guys have been through so much. Good luck, I hope Jessica’s next surgery goes well. You must all be very worried. Sending love, hugs and lots of luck. xxx
Thank you, it is a worrying time – trying not to think about it too much until we need to x
Aw it’s always lovely to hear from blogger’s other halves, the ones behind the scenes, and especially to hear about something that matters so much. Such a strange time for you all waiting for the next step and my thoughts are with you and your gorgeous vivacious girl xx
Thank you Caroline – it does feel a bit like we’re in limbo with the waiting at the moment, but we’re focusing on making lots of memories in the meantime x
What a lovely, and moving, post.
I take my hat off to you all, and what a team you make.
Well done and I’ll be keeping everything crossed for you all over the coming weeks.
xx
Thank you so much Gemma – it does feel like we work well as a team especially at times like this x
Really interesting to get your husband’s perspective on things – I can imagine your different approaches balance each other out and you make a great parenting team. Hoping all goes well with everything that’s coming up.
Thank you Katy – we do balance each other out very well with the way we approach things x
I’m crying a bit – this post really packs a punch! My partner keeps his emotions very much to himself but, on the occasions when he does talk about it, it always stuns me how deeply he was feeling things underneath it all.
I hope everything goes well, and wishing you all lots and lots of luck and happiness. x #thetruthabout
Thank you Jess and sorry to make you cry. My hubby is very similar with keeping a lot of his emotions to himself and it is so helpful sometimes to hear his side x
Ah, so lovely to hear your husbands thoughts and what lovely photos too – especially of your two daughters! They look so happy. #familyfun
Thank you Rach, they are happy little girls 🙂
What a beautiful post. Your husband has a real way with words. It’s interesting to read how you get through things in different ways. We are just like that too – I’m all about there here and now, while my husband is all about solutions and planning.
Good luck to you all for next month.
Thank you Sarah – I think those differences help us to work better as a team when it comes to things like this x
Louise it is really lovely to hear your husbands perspective, I am so pleased he shared this post – too often men find it difficult to discuss their feelings and especially to tell strangers but I know many people will find comfort from reading this. All my love, positive thoughts and support goes with you on the next part of your journey. TY for linking such special post up to #FamilyFun
Thank you so much Catie – it’s always such an honour when my hubby is willing to open up and so helpful for me to hear his side too. So important to get a dad’s perspective now and then. Lovely to link up x
Lovely to read about things from your husband’s perspective. It sounds as though you make a good team – reacting with enough difference to provide balance, but still understanding each other’s perspectives and different ways of coping enough to be emotionally supportive. <3 xx
Thanks Maddy, I think those differences do help us to work well as a team together x
That is very brave of him to share this with us publicly on what is your forum. Hats off to the pair of you, I know it’s easy for me to say “I don’t know how you coped?” But I suppose it’s not something you ever imagined and look at you 5 years on, you’ve coped. Human beings are amazing creatures to be able to deal with life like this. In the same way I would cope, we all cope. It might not always be easy but we do. Thank you for sharing this with #FamilyFun
Thank you Karen – people do say that they don’t know how we cope but we’re really no different to any other parents – we cope because we have to. Thank you for your lovely comment x
This is such an emotional post, I think it was really brave of your husband to write this. I am so glad that Oxford were able to see you on that same day as I can’t even imagine how scared you must have been. I didn’t even know that in-utero surgery existed, so thank you for educating me. You have such a beautiful little girl who is always smiling in your photos and clearly loves life. I hope that the next stage goes well and that you are offered lots of support for all of you as you continue the journey. #FamilyFun
Thank you so much Laura. It was such a huge relief to be seen on the same day. So amazing to be able to look back with Jessica doing so well at the moment though x
very well written dad. Nicely done.
Thank you Jeremy 🙂
Well done to your hubby for writing this. It is a beautiful post and so lovingly written. You have such a beautiful family xx #TheTruthAbout
Thank you so much, it’s always good to be able to hear it from his perspective too x
Wow this is such a powerful post, so interesting to it from the dad’s point of view. I had no idea you went through this and you must be an incredibly strong family to go through this together. So wonderful to see your little one so happy and healthy now, it must be very poignant looking back on the last 5 years. #familyfun
Thank you – it is amazing to see how well she is doing now 🙂
Fantastic post Louise and hubby. I sure there will be other heart daddies earlier in their journey than you that will take a lot from reading this #familyfun
Thank you Claire – it was so good to hear his side of things x