My 8 month old is having heart surgery next week, what do I need to take to the hospital?

[RNW]

Hello,
My 8 month old is having some investigations, and open heart surgery next week on a large VSD. He will be in for about a week it looks like. The whole thing has come as a bit of a shock, and we are reeling quite frankly.
Any ideas of a list of things to take to the hospital would be great, as I can't think straight. I will be allowed to stay with him. I also need to find a way of expressing milk whilst I'm there. It will be at the Evelina Children's Hospital. Thank you.

No experience but kid I were you I'd take

His favourite snugly / blanket
Dumny if he has one
Beaker for water
Any little toys he likes at home
Books
Any music he likes

For you:
Some clean clothes you can layer up
Maybe a blanket
A thermal cup if you're allowed one
Food for you - not just junk but healthy stuff
If you can use your phone then download any apps that might keep your mind occupied and load up your favourite tunes
A good book or some magazines
Canera?
Toiletries
Bedrocks

Omg excuse all typos

Also some paracetamol for you for headaches and change for vending machines and phone charger

Oh what a stress for you OP.

My baby was hospitalised (only for 2 nights) when he was 3 weeks old (4 months now). He had an operation and we stayed in.

I only found out that day that I had to go to hospital so had no time to prepare but thinking back I would say:

Things that comfort him - snuggly blanket etc.

I was glad I had my flip flops as to be honest the toilet and shower room was minging - hair and quite dirty :(

I was glad I had my kindle for when he was having the op. I kind of pretended to myself it wasn't happening and lay on my wee fold up bed reading my kindle. I also couldn't sleep at night (noisy) so was glad I had it. Ear plugs! They drowned out some of the noise but I was sleeping right next to DS so heard him fine.

Snacks is a must, I would say.

On our ward they had a fridge and a microwave.

Mobile phone charger.

When I saw the big cot bed with its metal bars I just couldn't put my 3 week old to sleep in it. He only had a little portable breathing monitor and no other tubes or such like so I took my pram in and he slept in that. Nurses and doctor said it was fine for my DS. If I think of anything else I will be back!

I hope your little one recovers well and is right as rain in no time xx

Hi RNW good ideas from everyone the hospital will be able to provide you with a place to express and store your BM they will also provide all the equipment. I know the hospital well o if you need any more info pm me

I have no idea but I have an 8 month old and can only imagine how you feel.

Sending lots of hugs and best wishes for a speedy recovery xx

I don't have any advice, comfort blanket/toys and his own beaker having been covered already, but I just wanted to wish you and your little boy the best of luck x

My essentials were those tins of cold coffees as you're not allowed hot drinks on most kids wards, DD's favourite blankets and pillow cases, enough cuddly toys that you can wash them regularly, good hand cream as all the hand washing in hospital soap and alcohol gel really wrecks your skin. I also brought a memory foam mattress topper as sometimes the parents' beds are pretty awful. I have not been in that hospital though.

All the very best for your DS's operation. It is awful when your LO has to go for major surgery I know, and I have yet to see a surgery that do take longer than they say it will, so bring plenty to keep you occupied, walking a lot is good, and have someone with you too.

and for you.

My DS2 had heart surgery at 10 days old, so i can't really help with stuff for your 8 month old. For you, phone charger, change for machines, notebook and pen, flip flops, face spray (its bloody hot in hospital!), ipod, good book.
Thinking of you and your DS.

Thank you so much for all your help and good wishes,much appreciated. I feel so utterly drained and next week isn't even here yet. I will get a notepad in the morning and make a list of all of your suggestions.

DD#3 was at the Evelina (not cardiac related but did have 10d in PICU) last year. When they are in PICU you may have a bed for you in the parent accommodation or off site at Guys Hospital. When he moves to the ward you will get a pull down bed next to his you can use and these are not too bad. The ward is noisy so consider some ear plugs. They provide pillows, towels and bedding fine - you might want some flipflops for the shower though. There are kitchens on the wards and PICU has their own parents room with a TV, fridge and microwave too - all the parents rooms have free tea and coffee with cups etc. We used to eat at Shepherd Hall in St Thomas' for a decent lunch and use the Marks and Spencer also in St Thomas' to get other food in the evening (when hospital catering has closed). Also be aware that at the weekends Shepherd Hall etc is closed. If you have an ipad do take that with you and don't forget phone/ipad chargers too. You can plug these in in the parent rooms and even in PICU they let us use plugs next to DD's bed. A wash bag with the usual toiletries and a book or something to keep you busy too. I wouldn't take much in the way of toys for your son - the play team has plenty for them to use and less risk of losing a treasured toy if you only have one or two to keep an eye on. If he has a favourite cup to drink from then worth taking that with you.

I am sure you are stressed about him going through the whole thing but I can honestly say the teams we dealt with were utterly amazing. PICU especially was first class. I hope it all goes well for him.

RNW, my little dd had open heart surgery at Evelina Children's Hospital 9 years ago when she was 4 months' old, also for a large VSD.

I can hth say your ds will be in the best of hands.

I cannot remember what I brought in terms of things.

I brought someone to soothe my dd because she will not be allowed to eat for many hours ahead of surgery. I knew she would cry but I would go to pieces. She was bf-ed and smelling the milk on me would set her off so MIL rocked her off to sleep instead of me. Funnily, dd did not cry as much as I thought she would. Maybe she knew.

The worst part is carrying your ds down the corridor and then giving him over to the anesthetists and for the doors to close. That is the absolute worst bit, so be prepared for it and make sure your dh gives you extra support then. After that, it is out of your hands.

The next 4-5 hours during the surgery, just leave the hospital and go to a cafe nearby or anywhere that will distract. I believe the hospital will page you once the surgery is over. So bring anything/go anyway that will get you and dh through that.

When you first see ds, he will be full of tubes and wires and slightly bloated. But the tubes and wires will come out very quickly one after another within 24-48 hours, I believe. As for bf-ing, I think it was only the initial day or so I had to express. Once dd was awake enough, I could just put her to the breast direclty. It will be a huge comfort for you and ds to bf. I was never so glad of it.

I was amazed that I was allowed to lift dd so soon after her surgery. I thought it would hurt her but that was not an issue. Be aware that the pain relief is very good and they keep the little ones very comfortable.

The great thing is that VSDs, even big ones like your ds and my dd's, are eminently fixable. Dd has been completely repaired since the surgery and apart from the scar on her chest lives like any other child. It is a non-issue.

Evelina is fantastic. Hang in there and all the best! It is worse for his parents than it is for your ds.

Thank you so much everyone for your kind replies.It has been really reassuring to read of the great experiences at the Evelina.Thank you Beautifulgirls and Blueshoes for sharing; I feel slightly more prepared now somehow. Right, now to attempt some sleep!

Good luck this week RNW, thinking of you and hoping it all goes absolutely perfectly.

Hi

My dd has a lot of hospital trips and I always take (although if having an op perjaps get someone to bring after when can eat) any favourite drinks/nibbles your child likes as my dd want always eat/drink what hospital provide!

I also take things like wordsearches (dont use much brain power but keep brain occupied!) Tacky magazines are another good time filler!

Lots of changes of clothes/layers for both of you - amazing how much you get through (I always leave some at home as you dont always get much space but already packed for dh to grab and swop with the dirty ones I have with me.

Flip flops/crocs - so you can keep them on when having a shower are an essential! Even is clean you dont know who else has been before you!

Just remember anything you have forgotten some one can probably drop off for you or hospital will have emergency supplies (once a nurse even gave my asprin from her own back as I looked so rough with a headache!)

Just remeber to take care of yourself and eat even if you dont really feel like it!

Thank you once again for the suggestions. We are now back home until tomorrow when he needs an MRI scan before the major op,which will probably now be next week. The doctors found a couple of problems yesterday which make the operation much more serious, but when fixed should mean that he will be much healthier overall. So,the waiting games continue! At least going in yesterday gave us all a better idea of what to expect..

Sorry you can't put this behind you today after all, but sounds like the longer term may be better for him anyway. Let us know how you are getting on.

Can't add much to what others have said but my ds had a cardiac operation at the evelina three years ago, when he was five months. They are very good. There is also an excellent patient/ parent support group, called echo. There is a website and an email forum so you can find others going through the same experiences. X

Thank you.Very handy to know about the support group forum. I'll have a look and find their website. Hopefully the op will take place next week now.They have pinpointed further complications involving the aorta,but they seemingly have a plan to sort that and the VSD out in one go.We'll just keep our fingers crossed that the surgeons have steady hands!

My ds's issue was a double aortic arch, he is a healthy three year old now. The one thing I would add is to be prepared for the possibility that the op might be postponed at short notice, due to another emergency, either needing the operating theatre or the picu bed. It happened to us twice and I found it very stressful as I was all psyched up for him to go and then we had to wait longer, so best to be aware it is a possibility. The staff on the ward are all lovely and you will probably meet and talk to other parents which will get you through. Be prepared for little sleep and line up as much practical help as possible if you have things that need doing at home and/ or other dcs, because you will want to pretty much live at the hospital. X

Hi RNW - my dd has a complex heart defect so just wanted to wish you all the best for the surgery. tholeon is right about the cancellation issue, it happens quite a lot and is very difficult especially when you've psyched yourself up so fingers crossed it goes ahead first time. x

Just wanted to wish you luck too. DS has a VSD & is u set the Evelina. Hope it all goes smoothly.

Hi, my DD 9m is due to have OHS at Southampton, we're just waiting on results of some blood tests. She has already had a catheter procedure and I found having a sling and/or pushchair useful for time spent pacing with her when she was nil by mouth before the op. Also check if the ward has a facebook page, I find ours really helpful, you might catch up with those staying at the moment.

Also just noticed your bfing, there will be expressing facilities in PICU and on the ward. If you haven't done it before, be sure to ask for help asap. Also my DD feeds frequently (probably due to the heart prob) and we normally co-sleep and I was knackered after I handed her over for surgery, so I'd recommend just chilling out e.g don't go for a long walk just sit quiet somewhere.

also would say don't overload yourself with visitors right at the beginning, we've decided not to have anyone in PICU but wait until she's back on the ward for people to come.