How did you recover after going through seeing your child seriously ill?

[Nightwriter2017]

Hi - we've just been discharged from hospital after 3.5 weeks as my baby had major heart surgery. It's been the most traumatic time and I still feel so anxious and worried and like I will never be calm or myself again after the rollercoaster. Would be good to hear from others who have gone through this - how did you return to normal life and calm down and stop worrying and obsessing over every symptom? Worried I will drive myself mad. Thanks.

It's not easy, allow yourself time to feel down about it, have a good cry - that's normal and it does actually help. We had a lot of coming and going to the hospital especially for the first 3 months after her admission as an emergency and I found that very tough. Once I got back to work it helped a bit to try and get a normality in life again, though I did find it hard to go back at the start. Not quite a year on from it all I decided I needed something for me to do that was just about my choices and I joined a choir as I have a long love of singing. I still sing with the same choir now 5 years on and love every minute of it. One night a week DH stays home with the kids and my time is mine.

I also wrote a blog, it just helped me to put it all down into words. It may not be everyones idea of helpful or easy but I found it quite therapeutic. We had been thrown into a situation very unexpectedly and were lucky to come home with DD alive at the end of it all. I think I had the biggest breakdown about 2 weeks after her first discharge from hospital when it all suddenly hit me. Before that I somehow just kept going through it all.

She's 7 now, I still worry about her more than her sisters but it does get easier and you feel less over protective because of what you went through as time goes by and return mostly to normal parenting mode.

I hope your little one is making a good recovery now - the worst is behind you and though I know it was tough going through it you did it all for the right reasons - and being young it will all be forgotten by your child as they grow up, it's just you will remember the tough days.

You won't - just try and ride it and deal with the emotions as it comes.

Try and talk to a counselor if you can - one attached to the hospital or specialising in trauma.

On a practical note you'll have the ward number and should have been given people to contact if you worries - just call them if you need to. We used to often call the ward in the couple of weeks after we'd been discharged, particularly at night as heart isn't something anyone can see and with babies they can't tell you what's wrong. BUT you have to remember it's mostly for you. If she's had an operation then she'll have been checked out top to bottom and already be under the best care - you'll know more what ISNT wrong with her than any 'normal' parent of a 'normal' baby.

I found the hardest bit was when she got any but with something completely different - I was fine - trusted my mummy instinct and took her to hospital but the hospital staff were a bit dismissive assuming I was just being a super anxious mum. So if this happens be confident (I wasn't!) and push them to take you seriously

Oh and give yourself time - it's been a year now for us and we are only just starting to process what happened. Our counsellor said that was very normal.

Ill not any sorry!

It's nearly a year since my LO had major surgery six months after original admission as an emergency. Not quite heart surgery but she had most of her kidney removed. I found the part from original admission to her surgery the hardest as we were waiting for her to get poorly again and I spent a lot of time symptom spotting. Now we're nearly a year on, I'm far less anxious. It takes time and don't be hard on yourself. I started on a low dose of Fluoxetine as I was finding the anxiety was getting the better of me, and it made the biggest difference.

I also think you should embrace the anxiety a little bit - look at it positively - it's your body's natural way of keeping an eye out for your child. You're in a heightened state of alert rightly so because she's been sick and you've needed to make sure she got through it. It's a natural reaction - a bit like fear. Acknowledging that it's helping you do a great job parentimg and keeping her safe may also help a little.

Oh thank you so much everyone. It is so nice to hear that I will come out the other side and feel 'normal' again and to hear you all call it a trauma that needs to be taken seriously. I was in no way prepared for how traumatic it would all be, especially intensive care and it helps so much to hear your experiences.
Love the idea of joining a choir!

Day 1 of being at home and already going to take her to gp today. So anxious

DH still worries about 35 year old DSS1, even though they are NC due to DSS making questionable choices and upsetting DSS2 and DS. DSS1 had major heart surgery as a baby and had a pacemaker fitted at around 9 months, so every time DSS1 is due for a for a check up, DH gets stressed. It never leaves you completely, but you learn to cope and over time stop panicking at every symptom.

Go straight back to specialist rather than GP - in the nicest possible way gp won't be able to help much

You don't ever recover from seeing your child seriously ill - my DD spent 5 weeks in hospital earlier this year with a massive brain haemorrhage and a stroke and was given very slim chance of survival You learn to live with it, you replay everything you've seen/heard/felt. Life goes on in a completely new way but you will get there. Take care of yourself.

I don't think you do, to an extent. I am just at the start of counselling to help me deal with the period my son was very ill (partially also heart, operated at 6 weeks old) and I've just been diagnosed with trauma-related anxiety.

I found I was in survival mode whilst everything was going on and when it was done, I was desperate for everything to be 'normal'. I now realise normal isn't always that realistic. My son has some developmental delays, nothing major, but enough for 'slumbering insecurity', as my therapist called it. It was an appointment with the GP for a referral to a paediatrician that broke me a few months ago, combined with some work issues I was having at the time.

You will find your normal, and the worry does get less and you'll find yourself at the GP's office less and less, but this is part of you and your family. Keep an eye on yourself. You may not need help now, but you might do later. Ask for it.

Also, the check ups will help. When you get good news, that the heart is fine (in our case if was a fixable thing with just one op) and it will lessen the worry.

But my main advice is to talk about it. Keep an eye on yourself and make sure you get the help you need whenever you feel you need it.

I still fret about 33 year old DD who had a very bad accident when she was 26. She lost her spleen so I constantly worry about infection, and nag her about flu jabs, and avoiding sick people. I speak to her daily, if I didn't I'd be beside myself worrying something had happened.

As others have said, all you can do is keep talking about it. You eventually learn to live with it, but in my experience never really get over it.

I had another dc!!
Didn't want the memory of a new baby to be hospital /fear of death /fear of everything surrounded with staying in hospital for weeks at a time. . Not having chance to enjoy ds, guilt, all the negative shit having a poorly dc brings.

Had another ds and felt like a normal dm again!!
Poorly ds is 16 next month and is proud () he nearly died and that I was there for him the whole time!!

My DS2 had life saving heart surgery when he was ten days old. It was an awful, awful time and we were so close to losing him. He is now nearly 7 and is "treat as normal".
I don't think it's something you ever get over. I still feel lucky to have him.

Oh, and yes, if you have concerns, go to the hospital. GP will look at history and send you there anyway!

Haircut - that's funny that's what I want too! A nice newborn to correct all the bad memories. I'm sure it doesn't work like that but definitely I'm so broody!

Dd has anorexia, I wake every day praying that she does....seek help where you can x

Honestly, it takes time. My DS had open heart surgery including a cardiac arrest which we observed in ICU. It's not easy to get over that. I have been very anxious about health matters ever since- I really was suffering with catastrophising and convincing myself both he and I had serious issues (I have had major health issues in the the same time period). You need loads of support, and a great gp. Go to the gp whenever you are worried- now is not the time to worry about going unnecessarily. You will find the threshold for referral to hospital is lower than most- we have been sent to a and e for things like tonsillitis and ear infections- as my gp has said he is too complex for them to be comfortable with. This is fine, as it's reassurance, but it's time consuming. DS is 20months now and I feel we are leaving all that behind. I am more confident now about my gut instinct, and when you have seen them really sick you know when to worry and when not to. I hope you have a support network in place,I have joined some heart condition specific groups on Facebook which have been great!

What help should you seek? CBT? I don't know where to go for something similar. I don't feel ready to talk to my GP

Hi all, thank you so much for your messages and kind words. It's been 4 weeks since we left hospital now and I am feeling a little better but the anxiety is still hard to take and I have to stop myself from running to A&E quite frequently and learn to trust my instincts about what is serious and what is not.
Your words about getting support and talking are really good advice.
Did anyone in London (north ideally) see someone they recommend? I do think I am suffering from ptsd.

Hi sorry to hear about your baby and your worries. My ds was diagnosed with cancer at 16 months old in jan 2016 and we spent 6 months in hospital. Slowly life feels more normal and I don't worry so much. I don't think our life will ever be back to how it was before he became poorly.
If I do have any concerns with ds I go straight to a&e and we are supposed to get priority at the GP (but this doesn't always happen). I find that the families group for the ward we stayed on is a life saver. It's been really useful to chat through worries and concerns on there with families who have been through similar.

Oh nightwriter have a hug. I have no recommendations, but I am about to start some EMDR therapy to help deal with the trauma, which I hope will help.

A big hug from me too OP and an unmumsnetty hug to everyone else here too. There is some great advice here.

I've NC-ed to post on here as I'm struggling with this currently too. I find the anxiety incapacitating sometimes and other days I feel ridiculously elated that my son is still here that nothing else seems important. Personally, ive found exercise helpful for burning off the adrenaline and trying to keep our family life simple as we've all noticed that when we have lots on or get too busy we crash a bit a few days later.

Sending a big unmumsnetty hug to everyone on this thread. I've been there with my 4 year old and 3 year old. My 3 year old nearly died at birth but was relatively fine after a week in nicu. My 4 year old has had a lot of "quite scary" moments in his life. Nothing as bad as what happened with my 3 year old but it's just never ending. He was in nicu for 4 weeks and has had about 4 general anaesthetics a year since then. Mostly minor things but 2 major operations too, one of which involved him being in hdu for a few hours.