My baby has to have heart surgery, any mums been through this?

[mower]

He is 9 months old, just wondering if any other mums have been through this and want to know more about directly after the surgery.

He will be in intensive care for 2 days then on the ward. I want to know when I can pick him up and if it will hurt him and if I can carry on breast feeding him which at the mo he gets so much comfort from.

Thanks guys

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I don't - but didn't want you to think your post hadn't been read. You must be worried sick. I hope someone comes along who can help you with your questions soon. Keep bumping.

Can't answer any of your questions, sorry.

Would have thought being able to continue the bfing could only be a good thing though as wouldn't have thought he'd want to eat too much in the early days after surgery? Might have to find some odd positions to do it in though!

Hope all goes really well for you and your little man. Thoughts and best wishes. xxx

Yes my concern is how I will pick him up and comfort him after surgery as I feel that is all I can do to help him. He is such a mummy's boy and gets so much comfort from cuddles and breast feeding, I just hope it wont hurt him too much and wondered if anyone else has been through this?

Lo has not had heart surgery, but did have major surgery. He was in intensive care for quite a while and I couldn't pick him up while intubated, but once he was extubated I could pick him up. I don't think it hurt him as he was on morphine, but it was uncomfortable for him so I didn't hold him for long. But tbh, he was drowsy for a few days, so I was happy to leave him in his cot and let him sleep/rest.

Due to a long recovery and horrid things being done to him, ds stopped breastfeeding. However I hung on in there and kept expressing to keep my supply up, and eventually he started again. Lots of skin to skin (laying down with him beside me with my boobs out) and him trusting that I wasn't going to do anything mean, meant he started to feed again.

Sometimes the nurses in IC may forget to ask you if you would like to hold him, so suggest to them that you would like to hold him.

Good luck xx

Thanks coleboy hope your ds is ok now. How old was he when he had the surgery. Think I am going to find it so hard as we have so much contact and cuddles all day. He was such an unsettled baby that I carried him around in a sling for most of the time in the early days and even now can feed up to every two hours during the night.

My plan is to express though, the nurse said that he can have the expressed milk in the tube which will feed him when he is in intensive care.

DS was 9 months old and a real mummy's boy. When he's awake he's never more than a few feet from me, and if I dare go to the loo I get screamed at!!!

I hated the idea of leaving him overnight whilst he was in PICU (I had never spent a night away from him), but tbh he was so drugged up that I'm sure he probably didn't realise I wasn't there.

I'm guessing you'll be staying with him on the ward? I used to have my camp-bed thingy out all day so we could lay/sit together, as I hated him being in his cot all of the time.

You'll be amazed how quickly you will both adapt to the situation, and remember to keep on top of the nurses on the ward. They're so busy that things can be overlooked/missed, so don't be afraid to be pushy when it's needed!

Also, if you want to, get really involved in his care. You can feed him the milk down his tube, you can get involved in helping with the dressing changes etc. If the nurses are aware you want to be really involved, they're more than happy for some help!

mower - hi. How old is your little boy and does his heart problem have aname?

My dd has had heart surgery. We didn't know she had a problem until she collapsed so after surgery she was in ICU for a long time.

Planned surgery is much calmer but I expect you're pretty worried. Normally they are in ICU for quite a short time and you can be with him all the time. The staff will help you to keep feeding him although you may have to pump and feed him through a tube for a couple of days. You wil be able to hold him, they will help you do this and he won't be in any pain. And you'll be able to do his nappy and things.

Is your cardiac hospital close to home? If you have more questions ask away.

I post on the message board at Heartline They are a really supportive group. Pop over and see us.

Coleyboy how's your ds?

I would defo recommend getting involved in your lo's care. Maybe it's the control freak in me, but no one can look after ds like I can! It also makes the long days in hospital go quicker if you are busy looking after them.

SMBK - DS is ok in himself. We're off to Kings College Hospital tomorrow (no bed today), with a biopsy on Monday - which is his 1st birthday Am gutted.

Sorry you've been postponed coleyboy. And to his birthday too

Hi mower

My ds2 had open heart surgery at 9 months old too. Unfortunately, his surgery was an urgent case, so we were admitted just 4 days after getting a full diagnosis and surgery was 3 days later. I too was very worried about breastfeeding, but was able to breastfeed him a little closer to the time of op as breastmilk is more easily digestable. I then pumped while ds was in surgery and in intensive care. I found it quiote stressful so made sure I had a photo of him and something that smelled like him to help with let down. I also never got on with the hospital grade breastpump, so if you have one, perhaps take your own? Anything I pumped went to PICU first and got put down his feeding tube very slowly, like 1ml an hour. A few hours before we left PICU, ds went absolutely balistic (morphine comedown maybe?), it took several nurses to keep him on the bed. In the end, they said that I could try breastfeeding him as he took alot of comfort from that. It worked like a charm and 10 minutes later he was in a deep sleep! Ds2 was also very much the mummy's boy, a very unsettled baby and the only thing that worked to some degree was floor walking of breastfeeding, so I KNOW where you are coming from when you talk about how much contact you have with each other al day, everyday.

We also were not given much advice on picking him up after surgery, but some kind of instinct kicks in and I found myself scooping ds, like a newborn, rather than lifting under the arms. It was a few weeks before I felt comfortable to do that again.

The good news is, kids bounce back pretty quick. Although ds was very ill by the time he had surgery, he was in PICU for just over 48 hours, HDU for 12 hours and came home 6 days post op!

Saggar has already suggested Heartline, which is a wonderful board. If I can help you in any way or offer any more advice, you can have my email address if you want it.

Thank you so much for your replies is so reassuring that other had the same worries as me.

Ds has coartation of the aorta which has to be repaired, hopefully find out more about when he will have the op tomorrow as the nurse said she will call.

I go through phases everyday since his diagnosis on last thurs. Sometimes I worry about picking him up and feeding him and sometimes I worry that he wont make it till the op (my logical mind though says that that wouldn't leave him if this was the case) but even so just feel he is so precious to me as all us mums do. I keep checking him in his bed to make sure he is ok.

What heart surgery did your lo's have? Are they fully recovered now?

Ah mower, HM2J 's ds has CoA, and looking at your previous posts has followed a similar path to you. Her ds was diagnosed quite late.

My dd is 13 now - she had surgery for Anomolous Left Coronary Artery following a collapse at 13 weeks. She has other things going on too and isn't 'fixed' but does really well.

I feel for you - this is honestly the most difficult time - waiting for an operation. Afterwards you are so caught up with caring for them and getting them better - but these few days before are absolutely the pits.

We are looked after by Birmingham Children's, how about you?

We are the Royal Brompton, find going into London scary enough let alone everything else. On the whole though am very positive, have brought an expresser for my milk today and have started trying to increase my supply.

Your daughter is now 13 does she have to have any more surgery?

Do you have any other children. I also have another ds who is nearly two. Would you suggest that I may need alot of help in looking after my two year old while his brother is recovering after hospital?

Just can't imagion what it is going to be like ds2 is so full of life and such an early developer crawling around everywhere and standing up against things, can't imagion him being poorly, even though I do know he has this condition you just wouldn't know it to look at him.

Hi mower. My ds1 had open heart surgery as a newborn and I would agree with what everyone has already said. DS1's surgery was not planned (he was rushed to hospital for a diagnosis) but even then I was surprised by how quickly we got used to the hospital routine etc. When he was in PICU the nurses encouraged us to do his eye and lip care and any nappy changing. I was initially bf so was able to express using my own pump and then bring the milk in and put in the hospital's freezer. My ds had Transposition of the Great Arteries and is now perfectly fine nearly 7 years on. When we were on the ward ds shared a room with another baby who had coartation of the aorta - she was very bonny and seemed to bounce back from her surgery very quickly .

Hi Mower

I realise it isn't the same, but my Dp has congenital coarctation of the aorta (and a shed-load more). He was just at the Brompton last week (he still goes there even though we live up north now).

Obviously I can't answer your question and nursing care was so different in the 60's to what it is now so MILs experience isn't relevant (whatever it was!). I do know that when DP last had surgery at the Brompton I was with him into theatre, in intensive care and slept next to him in HD so they will do the utmost for you to be as close as possible as they know that the ones closest will help heal the fastest.

I am thinking of you, and I hope all goes well (it will, he is in brilliant hands at the Bromptom) and I will look out for progress reports

So how do things go after the surgery on the ward? Will ds be waking up alot in the night and do I settle him back down?

Difficult to say as my ds wasn't sleeping through and so we would take it in turns to stay with him and do the night feeds, although we were pretty much the only parents to do this really. In PICU ds was sedated until he was extubated and so the nurse did any night time care if we weren't there.

Hi mower - dd will be having more surgery but it's in a little box in the back of my mind and I try not to think about it.

I'm not sure how things work at the Brompton but most hospitals have parent accomodation where you can stay whilst you child is in PICU (you aren't allowed to sleep at the bedside but can be there as long as you want to be) . Once on the ward you can stay by the bedside if you'd like or if you can keep your room you can sleep there. Often the children are quite settled at night - they keep their pain well under control. Also if they keep the tube in they are often pump fed small amounts during the night so don't become unsettled by hunger. If you sleep on the ward you can settle ds just as you would at home.

I had two other under 5's when dd came home. I did have help - dh and my mum - things just took a little longer to do than usual as she wasn't allowed to cy and also was tube fed for many months. But this won't necessarily be the case for your ds. They really bounce back very quickly.

hi mower, my dd2 had heart surgery when she was 8 weeks old. She had a difficult recovery because she was very small and in heart failure prior to surgery so I can't really say what 'normal' recovery is like.

I can tell you though that she is completely heart-healthy now (and that I know what a horribly scary thing this is ) - I hope everything goes smoothly for you and your little one.

Mower,

Like Saggar said, my ds2 was diagnosed late with coarctation of the aorta. He was diagnosed at 9 months and had his surgery a week later on an urgent basis.

Here's my email address, contact me if you want: connorsmum2001 @ yahoo dot com. I would happy to help you out with any concerns or questions you have, although can't help with the Bromptom specifically as ds2 is treated at Birmingham Children's.

Sending lots of hugs, I remember only too wel how hard this time was.