Help, my baby needs open heart surgery!


After writing about our baby boy and his open heart surgery at 14 weeks old in a previous blog post, it has led me on to a question that we get asked rather frequently in response to our story.  I found since Louis was ill that people ask me, "How do you do it? I don't know what I'd do if that happened to me, I couldn't do it." or "I wouldn't cope.", or something of the like.The truth is, I don't think you can ever plan for these sorts of things or for how you're going to react when shit flies your way. I don't ever recall a time prior to having Louis where myself and Jon sat and discussed what we would do if we had a child that suddenly became critically ill. It's just not the sort of thing you talk about really. You excitedly discuss the colour of the nursery, the pram you're going to buy or what sort of car seat will fit nicely in your car. You don't discuss the one in one hundred possibility that your baby may be born with a heart defect, you probably don't even know that one in one hundred babies have a congenital heart defect requiring open heart surgery.. I know I didn't.  In your mind, your baby is going to be absolutely perfect.

So, how did we do it? How did we cope? How do we still cope? There are a few reasons actually.


The first is that I had carried this baby for 9 months and I'd loved that little human inside from the day I knew 'it' existed. My baby may have only been the size of a poppy seed or whatever bizarre object it is the books compare it to, but it was my poppy seed and I loved and wanted it so much I would have given anything for it to grow. After a grueling and not very pleasant 9 months, I bought a beautiful, perfect little boy into the world and cared for him until he was 8 weeks old before we knew 'officially' that anything was wrong and I was NEVER going to give up on him because he had a huge hole in his heart. I too felt like I had a hole in my heart where I longed to help him, to take it all away. There was nothing that could fix that hole. The emotional hole gapes open even now, full of guilt, sadness and regret that I didn't do more for him sooner. Ongoing questions that I will never have answered. Was it something I did wrong whilst pregnant? Was I to blame? I coped because I had to because I was his Mum and he needed me. He needed me more than I even knew. Quitting on him just wasn't an option, it didn't even cross my mind that I had a choice in the matter, it was just a given to me that we would fight this whatever way we could. We coped because we just did because there wasn't even a thought in my mind of doing otherwise.

Another big factor in how and why we still cope with whatever crap get's thrown at us is I have the most amazing, supportive husband and family.

I'll start with my husband.
A piece of advice that my Mum gave to me back when I met my husband was, "If he makes you laugh, marry him". That's exactly what I did. From the day I met him this man made me laugh. He makes the kids laugh, he makes everyone we know laugh albeit without even realising it sometimes! Even when your tiny baby requires open heart surgery my husband has the ability to find something to raise a smile or failing that he can come up with the innermost subconscious nob head of a comment where you can laugh 'at' him rather than 'with' him. I remember being admitted to hospital when I was pregnant with our first daughter. Quite late on at night I was sent for an emergency scan, my Mum and Jon accompanied me down to the scanning suite. I recall the on-call sonographer specifically asking "Who are you then, Mum and ......?", to which my baffoon of a partner exclaimed in all seriousness as he barged into the room, "I'm her beloved!". As though 'beloved' was going to be an option on his tick box, I hope that isn't written in my medical records, "Amy attended today with Mum and her beloved!!". Shame!! We weren't married at the time, not that that matters to anyone nowadays, but obviously, boyfriend or partner didn't suffice for him that night. I don't think I've been his "Beloved" since. Thank God. They must have thought we were a right pair of doofuses. We didn't half laugh and my parents still refer to him as my beloved almost 11 years later.


I may not reciprocate his 'beloved' description of our partnership but one thing I do do is rest easily in the comforting knowledge that he is always there by my side. Sometimes whether I want him to be or not he just won't take the hint. I know that if he isn't there he's usually working to support us or running an errand for us (or fetching dairy milk for his chocolate addicted wife from the co-op at 9 o clock at night). We've coped with so much because we work as a team, especially where our children are concerned. We sing from the same hymn sheet as they say in Yorkshire. I'm proud to say that together we are a force to be reckoned with and I know he's got my back. I also know I'm lucky to have the support of my husband and I'm thankful I don't have to battle the downfalls of life alone like others I've met. If your reading this and your doing it on your own, pat yourself on the back, your doing a bloody great job!

In addition to my husband, I'm blessed with the utmost support from both my parents, my siblings and their significant other halves (or beloved's should they prefer). We have been described in the past as 'The Mafia', I presume they refer to us as that by the fact we're a tight-knit supportive community and have each other's backs rather than the fact we all parade around in black suits and shades doing 'dodgy' dealings and carrying guns. May I add here the only gun I own is a nerf gun and that is purely to protect myself from my children during battle and has no connection what so ever with the Mafia, honest!

In all seriousness though, my family have been my rocks. There is always one of them there, and if not one, then two or three, or more. I've never really been alone in any of my struggles and when Louis was sick my Mum couldn't be kept away even if we tried. I remember her calling me when Louis was in theatre to ask if she could come up and wait to see him, but she was already on her way, in fact, she appeared five minutes later from what should have been at least an hour long journey. My sister and brother-in-law who had just returned from their holiday when Louis had his first open heart surgery came straight from the airport to see him in another city, parking her car at one train station and getting the train back to another accidentally forgetting her car! They're all there every step of the way and boy does that help you to cope.

Finally, we are surrounded by Love. So much love. Everywhere we turned we had open arms, offerings of help, support, well wishes and genuine concern. It seemed like the whole of Sheffield and beyond were rooting for our little man to do well. Each friend, each family member all sent their love and kindness our way. Almost all of them anyway. Just like any other shit time in your life you always find out who really cares about you and this was no different. What we did learn though was that a hell of lot more people cared for us than we could have ever imagined and we were totally humbled by the support we received. Their messages carried us through some pretty tough times, like a rainbow on a rainy day.


Whatever you're going through, make sure you laugh. Be sure to find that bit of sunshine on those rainy days. Remember to look for your rainbow. 🌈


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42 comments:

  1. & we really love to celebrate the best of times too...we know we are so lucky to have support from each other & also try hard to surround others with love too. Lovely to read Amy & made me smile today 😘xx

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  2. I think we cope because we have too because there isn't an alternative. A lovely, heartwarming read. All the best to you all

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    1. Back again from #theloveoftheblog

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    2. Thank you for taking the time to visit and read my blog. :-)

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  3. It sounds like you have a wonderful support network behind you. Also giving yourself credit you sound like a wonderful mum who wants the best for your children. All the love in the world x #AnythingGoes

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  4. Ahhh such a gorgeous post! I love it. I love that you have shared who has supported you. Your partner sounds fab! I love that your boys little face is all smiley even though he is sick. I wish you and your lovely family all the best for the future. Xx#dreamteam

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    1. Thank you, that smile carried us through and still does. x

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  5. Oh my goodness I literally have tears in my eyes. I can't imagine how emotional and difficult your journey must have been at times but I'm humbled by the way you have chosen to celebrate the incredible people and the love around you that has supported you every step of the way. Just beautiful. Thank you for linking to #DreamTeam. xx

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    1. Thank you for taking the time to read my post. I'm very lucky indeed to have such lovely people around me. x

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  6. What a lovely positive post! I'm glad you have such a wonderful support unit around you. Stay strong. xx #DreamTeam

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  7. Your outlook is truly inspirational. I think you have great advice for your readers to laugh and surround yourself with love. I'm so glad you have a supportive family. Thanks for sharing with us at #BloggerClubUK x

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    1. Thank you, I'm so lucky to have the family that I do xx

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  8. Your coping skills are phenomenal. I still cannot get over how children deal with such challenges they inspire me. My youngest went though a lot. It changes your whole outlook. #bigpinklink

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    1. Aaaw thank you and thanks for taking the time to read x

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  9. I can't imagine what you are going through, I suppose when your in these situations you have to deal with it because there is no other way. So inspiring, sending much love X #coolmumclub

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  10. A) You must be an amazing woman B) You have an amazing husband and family C) you are an inspiration to us all! Thanks so much for linking up to #coolmumclub and sharing this with us all x

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  11. I can't even imagine to relate how difficult this journey must be for you mentally, physically and emotionally. Knowing that you have a wonderful support structure bring some relief. Through it all, you remain positive which is amazing. All the best to you and your family#dreamteam

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    1. Thanks so much for your lovely comment. x

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  12. Ah such a touching post. I cannot even begin to imagine my state if I had to go through that with my child - you all were so brave. Glad all is well now and you are so right - a loving supportive family can make a world of difference. And of course, a 'beloved';) God Bless!
    #coolmumclub

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    1. Thank you for reading and for your lovely comment x

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    2. Popping back again from #blogstravaganza. Thanks for linking up with us.

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  13. Lovely post, and I really enjoyed the 'beloved' episode lol!
    I don't quite understand the 'I couldn't do it' comment, when it comes to things we have to go through for our kids. When there is no choice in the matter, you just somehow get through, don't you? As you say, you wouldn't give up on your child, that's just not an option.
    Great also to see that you have such a loving support network around you!
    #TriumphantTales

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    1. You can always rely on a man to come out with a cracker of a comment :-)

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  14. oh my gosh. You are so brave. It is great that you have such a great support network. It wasn't until I became a parent that I really appreciated how important a family support network (for me especially my parents) is. If there is anything that I would say, it would be that you need to remember to be kind to yourself too. You are amazing, and occasionally we all need to remind ourselves of that. Buy yourself a bunch of flowers. Pen x #coolmumclub

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  15. This is a lovely post, i hope your son is doing ok now. Your family sounds as close as I'd like my kids to be when they're grown up. Please try not to feel guilty about your son's condition - I have identical twin daughters, one of them has a congenital heart defect, the other doesn't. It really is just the luck of the draw (I had no idea it was that common though!) Jess had to have a balloon dilatation of one of her heart valves at 7 months old. We were told at the time she'd need open heart surgery (I can safely say the night we were told was the worst night of my life) but she's now 5 and seems to be doing ok. Thanks for linking up to #Thesatsesh

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  16. This sounds like such a tough time, what a lot you have been through. But how lovely to know you have such a support network. Thanks for joining in at #TriumphantTales

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  17. It sounds like you have lots of support around you wish is what's needed at a time like this. Thanks for joining in with #ThatFridayLinky

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  18. You are one amazing mama! What a thing to go through, and to still be standing and be able to write about it. I think there's something inside us all which leaps out and just 'copes' in the face of our little ones needing us. It must be an instinct that really powers though. Your family sound so supportive and exactly what you needed around you. Thanks so much for sharing this with the #Dreamteam *as Dawn has said... completely humbled. xxx

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  19. Gosh that must have been so hard but it must have helped to have such support. Thank you for joining us at #bigpinklink

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  20. It sounds like you really had to dig deep to get each other through. You sound so close to your family and humour makes for great medicine sometimes. #Blogstravaganza

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  21. Wow you all sound like such troopers and amazing people, especially your husband. You are entirely right, that when something like this happens, you just keep going, there really is no other way. Louis is one little brave man, and you are one brave mama. Thanks for linking up at #fortheloveofBLOG. Claire x

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  22. That beloved story has literally made me cry with laughter! He sounds like my husband! It's such a relief to have a supportive team around you <3 #BlogCrush

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  23. I definitely agree that you cope with these things because you have to, because they're your child and you would do anything for them. Having good support from your partner (I'm still chuckling over the 'beloved' story!), family and friends and knowing that you're surrounded by love makes a huge difference though. I honestly couldn't have done our heart family journey without that love and support. Hope your son is doing well now x

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  24. #thesatsesh with your tribe by your side i think most things are survivable - you don't get to pick, you just roll with it and thrive because thats likes journey for you all. I think counting your blessings and reflecting on your awesome tribe made for a lovely post. Fridgesays x

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  25. I have tears rolling down my face right now. I admire you and your family so much. My son had a heart defect and he only lived for 70 minutes and the comments I got from outsiders was unbelievable like ‘you wouldn’t have coped anyway,’ ‘it was for the best’ or ‘imagine you’d have to live in a hospital everyday literally,’ these people thought they were making me feel better when they were just being insensitive and making the loss of my son much worse. I’m so glad it worked out for you and I agree when you’re hit with something you just deal with it. Especially with a supportive network around you #blogcrush

    Soffy // themumaffairs.blogspot.com

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  26. It's lovely that you have such a strong relationship and support system, it must have really helped. x
    #BlogCrush

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  27. Oh I relate to so much of this - we also found out that something was very different about our baby when she was 8 weeks old and, after several weeks in hospital, she had a major operation at 17 weeks old. You're right - nobody ever imagines this to be part of their story, but when you're dealt those cards, you cope because you have to and you want to and those little ones mean the world to you. I love the "beloved" story too - so funny! #blogcrush

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