Baby having operation, talking to people doesn't help...

[slugsonmypeasgrr]

Hi I just need to get it off my chest I think. My lovely, happy baby boy has to have a kidney operation in January, he will be 7 months. I am 100% behind the healthcare professionals, we've had lots of tests so I know it needs to be done and am outwardly very calm about it but inside I feel as though my heart was falling through my boots. I am quietly terrified. I know he will more than likely be fine, but there is a small chance he could die - he has to have GA, they will cut him open, take some of his body away, reattach other bits, get a tube fitted which will come out of his body to drain urine via the cut in his back and we will have at least 2 nights in hospital, with all the bugs and things that go around in there. We will be in St Georges in Tooting which is absolutely huge and looks like a Soviet era gas plant and I am worried it will all be absolutely overwhelming, not to mind being like sleeping in a bus station. I talk to my DH and family and friends about it very rationally and calmly because that is what is needed, everyone is looking to my reaction and I feel as though I am holding everything together, they all jump on my positive outlook and say things like 'you're handling it so well', 'you're amazingly positive' etc and I feel as though they are all hugely relieved. It's weird because that is what I want but a small part of me wants to go and hide in a box with my beautiful boy and not let anyone touch him. Can anyone identify with this? Any practical advice on a hospital stay with such a small baby? Just hoping I'm not the only one...

Hi op.
firstly I did my training in st George's and also had my double mastectomy there and I only have positive stories of the hospital. It's a big teaching hospital so very up to date.
Secondly my dd had a cleft palate repair at 9 months and was sat in a toy car a few hours after!
They are so resilient at that age, partly due to their lack of insight so they are more relaxed.
I went with my feelings, I was very protective and made sure she was as comfortable and stress free as possible but when she went to theatre I cried like a baby, it's all over now and we don't even think about it.

Most children's wards are surprisingly cosy and well equipped for parents staying. Why not ring or visit the ward to have a look so you can pack what you might need and prepare yourself mentally.

Oh yes, I know exactly what you are feeling.
My DS had 4 GAs before he was 15m, and at 12 has now had 11 or 12 and some prolonged and brutal surgery.

You have one whole set of rationales in your head and another set of feelings that scream 'no', from your Mummy Tiger.

All I can tell you is that once it is actually happening it will all be much easier than you expect. That the pain is all ours - kids and babies seem to sail through, while we endure agony. There is nothing like seeing your baby unconscious in the trolley and every parent cries. I still had a lump in my throat this last time. But it's just a part of it.

You can't know this until it is over but it will be much easier and more practical than you fear. The staff will be fantastic and have well practised routines.

And to be tough: you really do have to keep up your calm act inside because it is really important that you are strong and calm for your baby and do not let anxiety spread. Young children are calm and accepting if they trust the adult they know and love. If that adult seems calm they know it will be OK. You can collapse once the lead you out of the anaesthetic room but up until that point you need to be calm and matter of fact.

I would say to all these people who keep talking to you about it: "well of course I am 'handling it well', what choice do I have? I need to get on with it for his sake, and everyone expecting me to fall apart isn't helping". They are projecting their own stuff on to you and giving you more to deal with.

It won't happen until it happens. So forget try and about it until then.

The hard bits are the starvation period, and leaving them on the trolley. Small babies can have liquids / breast milk if he is bf until v late, and they always do the youngest children first on the list so you don't have to wait long.

More later - rushing.

Thanks ledkr that is reassuring. I haven't ever spent much time in a hospital myself, was born at home as were my 2 and I guess I've always wanted to shield them from that experience. To say I am uncomfortable in hospital environments is an understatement and have felt like I was hit by a bus after the half day tests we have had to do. Just being on total alert the whole time, even though staff were lovely - and that was just at our little local hospital. How did you get through it?

Wow blu that sounds very tough, I can't imagine you ever get used to it - I truly hope we only have to do this once. I think it is harder for family and friends to get their heads round it because he seems so well, he's a big happy baby who doesn't give me a moment's trouble. I almost feel as though people think it's unnecessary, my mum has said 'oh well I wouldn't have known about it because we didn't have antenatal scans in my day' despite the fact the doctors have told me the kidney could die if they don't operate. And I do worry, stupidly, that it will change his sunny nature because he has been such a dream til now. Almost feel like it has been too good to be true -stupid superstition. Waffling now but it does help to get it all out... Thanks so much for reading and taking time to reply.

I know what you mean about worrying that it will affect them. But it won't, it really won't! DS was a demon crawler when he started bone surgery and my huge worry was that he would be thwarted in his crawling and lose all his sunniness and vim. What actually happened was that he loved being in hospital - so much new to see, and so much fuss made of him, and he observed the huge cast on his leg as just another of those new exciting daily experiences that a baby encounters. I sat him on the floor in the playroom and put a toy to his side on the not-casted leg, and he immediately moved towards it and within minutes had learned to crawl with a foot-to-thigh cast on.

Babies encounter difficulty and new things every day. This is just a new experience.

Unfortunately having a child with health needs elicits general nonsense from people who don't know as much about it as you do. I was told everything from 'Jesus would heal him' if I engaged in prayer, to 'babies shouldn't wear shoes, you will damage his feet' in response to his Consultant-prescribed Piedro boots. And you get the 'oh, poor you, I know I wouldn't be able to cope if my child needed an operation'. And it doesn't feel like sympathy, actually, because the real answer is 'yes you would because you love your child' and 'yes you would because you have no other choice'. If you love your child yu KNOW that the best thing is that you go through this, even though it is exquisitely painful to think about it.

St G's have a GREAT rep.

Thanks blu, I did think they were good, but it's good to hear from someone else. I was sad not to have the op at our local hospital because the children's ward is so homey and small and they practically know you by name (emotional reaction) but I know rationally it's much better to be in a centre of excellence. I did have a minor panic attack at st G's when pg with no1 a few years ago but I won't do that this time - it's too important for him, as you say. I just feel uneasy. About the whole thing really. I'm not too happy with the thought of my own internal organs, never want to see them, can't watch operations on TV or when giving blood etc and having to confront all of that with my baby son is just -- difficult. I'm not expecting any other response than tough, deal with it. But these are things I can't say to anyone really, but I need to put them out there so I can deal with them. I'm not the kind of person who can do this sort of thing euphemistically, I need to really confront what is going to happen so that I can file it properly in my brain. anyway, thanks for the free therapy

DS2 had neurosurgery at 5 months. I was beside myself but nobody knew. We all have a game face for the outside world and this is one of those times when it feels most false. Do you have someone you can talk to about your fears - someone who'll listen, nod and not try to fix things or minimise them? I found people could be amazingly cheery about DS2's surgery, but I doubt they'd have felt the same if it was their own child.

Most importantly for me was to believe that everything I felt and did was a pretty normal reaction to the enormous stress we were under. If I felt numb or detached, that was normal. If I was teary or panicky, that was also normal. When DS2 went under, I actually couldn't hold him, DH did, because it felt so enormous. Again, I felt whatever I did was a completely normal reaction. I didn't beat myself up about any of it.

The medical staff are amazingly skilled with children and the first smile DS2 gave when he came round was the sweetest ever. You will get through this - it will be the hardest thing you do, keeping it all together, but you will do it.

Eyeofthestorm yes yes to people jumping on the positive. They seem to be very relieved, I feel like I'm mothering everyone!! My DH is my only companion through it but we are very careful about what we say to each other too. It is weird. I think I mainly feel weird actually and as if I am not quite there. It is all so surreal, hospitals are strange places, I sort of feel like time and real life have stopped when we are in one with him, and things only resume when I get home to DS1 playing normally.

DH and I had different approaches - both equally valid. He wanted all the nuts and bolts of what was going to happen while I just wanted an overall - it will be fine and DS2 will be fine. As long as we understood we were different, it was fine.

Absolutely - it is the twilight zone. Sometimes I felt like a puppet, copying all the normal small talk, smiles and politeness. But once it was all over and we could see how well DS2 was doing, it did all melt away.

I know how you feel. It is so hard, I always feel the waiting is much worse than than the event. Once it happens and you are there your instinct to NBC strong for your son will take over as will adrenalin.

My 5 year old has had 17 GA' s , it is hard.

Be strong for you son , it will be fine

its horrible but it HAS to be done.dd had 8 gas in her first year.so worrying but it had to be done.good luck op.you will feel so good once its all done.

Hi OP, my ds1 had an operation recently, he's 4.5 so it's not quite the same but like you I was terrified (I posted a thread about it at the time). I found the time beforehand the worst as my mind wouldn't stop going to the worst case scenarios, wasn't sleeping etc.

What I found was that actually once we were at the hospital and in the process it was easier than worrying about the unknown before. Once I'd spoken to the surgeon who would do the procedure and the anaesthetist etc then I felt I knew more about what was happening and who I was having to put my trust in.

I won't lie - the bit when they gave him the GA was awful, he had it in a mask and I had to hold him while he went under. I was in floods of tears leaving the room and felt completely dazed and disorientated. The nurses were sympathetic and helpful though.

What did help is that my BFF came to meet me as soon as he went in and she was great, sympathetic and understanding whereas dh would have just told me to pull myself together. It really helped having someone else there with me, she stayed until they told me ds1 was in recovery and I could go to him.

He made a really quick recovery. There were a couple of babies on the ward, similar age to yours and although they were a bit upset after the operations they seemed to be making a good recovery as well.

I found the nurses etc v sympathetic and willing to take the time to explain things and help you, totally unlike the attitude of HCPs I've dealt with in respect of adult problems.

Good luck to both of you for the op.

DD was 5 months old when she required emergency surgery. I am a vet so understand all the mechanics of what was happening.
DD was allowed her last food/ bottle two hours prior to surgery so starving wasn't really an option as she was FF they asked me to take a bottle to recovery which she took immediately.
I was asked to sit on a chair and hold DD whilst she was anaesthetised and then left immediately. It is difficult from them to get I/vs into babies at the 4 to 9 month old babies and due to certain drugs DD's I/vs got blocked quickly so she needed a new one every 18 hours this is not fun, but I choose to hold her every time.
Nice PJs (I would have bought new ones if I had know in advance), lots of magazines (you will sit around a lot), cash for getting proper coffees, snacks and a rota of friends to visit you.

Thanks everyone, I feel really humbled that you're all sharing such personal experiences with me and so useful to hear your stories as it does help to fill the void.

It was weird because my mum came up to see us pre-Christmas yesterday and we did some fun things with the kids, put the tree up etc nothing too exciting and then in the evening had some good news WRT DH's job and training that took some long-term stress off both of us but I just felt completely, bone achingly shattered! It's as if anything even vaguely out of our daily routine just sends me spinning at the moment. I slept like a log though (have had lots of insomnia recently which is a killer with bf baby!) so feeling better today. Just feel like my resilience is really really low.

Lonecat thanks for pjs advice, I was thinking of just wearing really comfy trackie bums the whole time so I can cat nap whenever and not have to worry too much about day/night wear. DS is really chubby and so has terrible veins, has already had an IV put in during tests and I was ok with that but it did kind of break my heart to see the little splint they put their hands in... All the kids on the ward had it and for some reason it was really poignant to me.

I know we are really lucky as we know others with much bigger long term health issues and anyway, in another country we might have to fight for this kind of treatment or not get it at all, let alone on the NHS. I do sometimes feel like a princess about it all.

Also, am staggering on with Breastfeeding because I thought this might happen and feel it will be easier in hospital to bf rather than ff. however it is bloody hard work as he only really likes to feed on one side and is quite fussy at the breast due to slow let down then very fast milk flow. He has never fed for comfort or to sleep as he likes to suck his thumb (although last time the out the IV in his favourite thumb sucking hand so he couldn't)... So my question is - is it worth this effort? Any experiences of ff/bf in children's wards appreciated!

It's amazing what you forget. I'd forgotten I was breastfeeding DS2 (5 months) - have no recollection of doing so at the hospital.

'Staggering on' sounds like it might add to the stress of the hospital stay and if there was one thing I would say to myself with hind sight is why didn't you make life easy for yourself. It was so hard to get BF started (prem baby) that I went a bit mad about it. I would have had more reserves of energy if I'd even mix fed.

The hospital will support whatever you need to do and have kitchen facilities parents can use.

The main thing is to be kind to yourself and go with what you feel is right for your family.

I've just spent 2 weeks at St George's, in the intensive care unit with my 6 week old. the staff were amazing!

I wanted to keep my milk going, but as she was on a ventilator couldn't feed. They provided a pump, and were incredibly encouraging when I was struggling with it. I felt really well looked after, and the care for DD was beyond belief!

As for the hospital, the ingredients restaurant has ok food at lunch, mainly chips in evening! As I was breastfeeding I got food vouchers, so 3 free cooked meals a day. Parents had access to a little kitchen too on picu.

good luck x

Li41lh I hope your little girl is doing well now and that I don't see you when we're there! food vouchers you say? Hmm!! Only joking, am a bit torn, will have to see how next few weeks go. We might only get our date in the new year, everything is still so up in the air I can't seem to make any decisions about anything.

I have taken such comfort from hearing these stories. My only previous contact with hospitals has been maternity services, you hear such scary things about hospitals I was half scared we'd get shouted at! But hearing such positive things about children's care is really helping. Have even started trotting out reassuring stories to friends and family.

She's fine now thanks. To be honest, ate better in hospital than at home! Cannot sing their praises highly enough.

Also, traffic is a nightmare in the area, be warned! Can get a weeks parking for £10. But the entrance to the car park isn't in the hospital itself...it was these practical pieces of info I wish someone had told us!

When ds1 was in hospital for a week at 15mths I was very pleased I was still bfing him because it was an easy way to calm him and it seemed to act like pain relief as well as if I bf him while the nurses were taking blood/putting in a cannula etc then he barely noticed them doing it whereas if I didn't feed him then he screamed and struggled .

However if it's difficult/stressful for you then it may be that mixed feeding would work best.

If he has a favourite thumb to suck, tell them this before they put a canula in and they will take care to use the other hand or arm.

As he is so tiny they will almost certainly use gas to anaesthetise him and then put the IV line in once he is asleep. It can be traumatic if they struggle against the mask, and babies struggle against everything, but the struggling actually makes them breathe more and go out quicker. It actually takes less than 5 seconds but feels like about 10 mins.

Sleeping on a children's ward is terrible, it has to be said. They will give you a camp bed to put next to DS's cot, but the noise, the lights, the constant monitoring - it is not relaxing. At King's they try and put parents with babies under the age of one in a private room, so you might be lucky, but it's still noisy etc. Do arrange for visitors to bring you fresh nutritious food if possible. There may be a parents' kitchen where you cna make tea and coffee, with a microwave.

You will need to take your own nappies, formula etc.

I do know what you mean about the horror of the visceral mechanics of the operation, and I think that is completely normal - after all every bit of his little body was so recently your own, and he is your baby and your whole instinct is to protect. I was near hysterical inside, at times, when we had to decide what to do wrt bone surgery.

You just have to keep forcing yourself to focus out and take the longer view of the bigger picture.

And remember that on paediatric wards up and down the country, up and down the developed world, tiny babies are having successful, event-free, operations that improve thier lives, and which they sail through. Right now thousands of small children are in surgery, and it's all part of the normal working lives of the skilled professionals in charge. They take huge care over our little ones, they really do.

Yes, it's huge for us but just an everyday job for them... Goodness! Really strange to think about it.

I didn't even think to mention the thumb last time but will put it on my list this time. I think I will have to write things down as my brain isn't really functioning right now.

I was pretty much expecting not to get any sleep, hence why I described it as like sleeping in a bus station, and it is good to be prepared for that. Will they let me cuddle him to sleep/sleep in my arms if needed? I have earplugs already as they help with the insomnia and think I will take them, as they never stop me hearing the kids even at home.

Also another question, his big brother is just 3 and very able to understand things... How has anyone dealt with telling older siblings and also to visit or not to visit? We are planning for me to be with baby and DH off work and with older child, even though this means me not seeing DS1 for 3+ days (have only ever left him once overnight and am main carer generally) is this the right thing to do? I have had to take him once to a test for the little one and it did not go well... He just couldn't understand that it was not about him and while staff were great with baby the older one seemed to annoy them a bit.

Hi my ds1 had 3 major heart operations before he was 18 months old. I understand totally when you say everyone takes their cues from you, I was shut down I was so totally terrified and everyone commented on how well I was doing, I wasn't I was just paralysed by fear, trying to sound rational and keep everyone positive was all I knew how to do.
My son was put out each time using the mask, I was asked to hold him while they did this to keep him calm then had to leave while they put in the line etc. feeling his body go limp was the worst part and I was totally unprepared for that.
I agree someone with you to bring food and drink and just make small talk is a definite help. I also bought a book and read to him once he was back but still unconscious I don't know if he heard me but it made me feel like I was doing something for him.
I also took a notepad and wrote everything down so I was sure I hadn't/couldn't mistake what the drs were saying and could revisit it and ask questions later on.
My ds bounced back from it all incredibly quickly, far faster than I did. He was trying to get up and about a few hours after surgery, especially the last time.

Hi slugs, you're getting some amazing advice here, I wish I could have read this thread almost exactly 2 years ago when DS was critically ill.

As far as older siblings, my 5 y/o wanted to visit, while my 3 y/o DD wasn't interested. We took our cues from them.

I have just asked older DD about it and she said "it's nice to look after sick people and take them balloons", which is what she did! DS's nurse was wonderful and showed her the IV pump, which fascinated DD. Children's nurses are amazing with siblings too.

What we found helpful was taking photos, even in PICU. It gave us something to show his sisters to explain why he wasn't at home and now it reminds us how far he's come and how lucky we are.

Best of luck!