Newborn needs operation due to abdominal mass. Advice needed!

[MsBump]

Just wondering if anyone has any experience of their newborn baby having an operation and what the recovery was like etc? My baby will be 3 weeks old when she has to have her operation to remove a complex mass in her abdomen and I’m very worried about the procedure but also the aftercare and recovery. If anyone has any experience in this it would be great to hear from you. Also what it’s like to be on a children’s ward with a baby and how to cope with BF etc

I can't help with your specific situation but DS2 had a complex heart op when he was ten days old. He was in intensive care for 5 days - we didn't stay but could have in a Ronald McDonald house. We were encouraged to do most of his self care and there was lots of opportunity to use hospital grade breast pumps and store milk. He was moved to high dependency and we got a room because I was breastfeeding so I was able to stay with him.
It's hard to eat anything except crap - they may be a fridge for parents food though.
Maybe remember footless babygros- they might need to attach wires to feet.
Good luck to you and your wee one!

Thank you weebarra that’s very helpful. Will look out some footless babygros now! We couldn’t get into the Ronald mcD so my hubby will have to stay in a hotel. Am worried as will be on a children’s ward about breast feeding her and how I’ll pump etc for the surgery day as they said I won’t be able to feed until next day if lucky. So good to know they should cater for all this in terms of pumps etc! Hope your DS2 recovered ok x

Yes, he's nearly 8 and you would never know!

No advice, but for you, and I hope the operation goes well. It must be such a worry for you.

Sorry you're going through this. Re pumping - the hospital should give you a pump whilst you're there. My friend got one when her daughter was in hospital for several weeks. The baby was kept in an induced coma so couldn't breastfeed.
I'd also call the ward - they should be able to give you some better answers regarding your questions. Is it a specialist children's hospital? Friends baby was in Alder Hey, and they felt very supported during their stay.

Im sorry to hear this, it must be very worrying for you.

General hospital advice: think about yourselves (the hospital will arrange care for your dd) - where will you sleep, how will you shower, when will you eat? After the initial op you'd be well advised to do some tag teaming - one of you stays with her whilst the other rests.

Get your supply lines sorted. Do you have friends/family who can bring you clean clothes/food when you need it?

Also think.about how/when you want to update friends and family about how your dd is doing. You can do this yourself of course, but if you dont want to be constantly contacted you could also arrange to update 1 family member and have other people contact them.

You can draw the curtains round the bed to bf. The nurses will discourage this but you have a right to privacy.
It’s actuslly very difficult to bf a sick child in hospital - it’s not encouraged or helped by staff which is s massive shame. Most mums give up and bottle feed.
I bf exclusively and did muitple hospital stays. Just be strong and stick to your guns.
The main problem you’ll face is that you’ll not be able to get a break for yourself as you’ll be tied to the hospital. Plan how you can make things easiest for you as the pressures will be on you - your newborn won’t notice or care where she is as long as you are there.
Lots of loose clothes for you, flip flops/slippers for walking about ward. Ear plugs if you end up on a bed on the ward with her.
Breastfeeding mums get fed on the children’s wards - make sure you ask for food.
Hope it goes well.

I'm so sorry you are going through this

My newborn had surgery on day 2 of his life - open chest surgery on his oesophagus and trachea. It's honestly amazing how quickly they recover, so much faster than we as adults would.

He has subsequently had another surgery since then and although I don't breastfeed, both NICU and the children's ward would have been very supportive.

My best advice would be to prepare yourself for a marathon, not a sprint. Check with the doctors about long term possible complications and be kind to yourself. This is a tough tough thing to go through.

It's different in the fact that we were on scbu rather than a children's ward but I second the person that mentioned supply lines. Someone brought us lots of posh ready meals that we could just microwave that was really helpful and also my Mum had a key to our house so could pick things up etc. Also you might be able to get a reduced parking pass...worth checking as hospital parking is a pain.

Breastfeeding mums get fed on children’s wards. You can get a decent enough hot dinner twice a day and breakfast.
Dads don’t get fed though.

Nor do formula feeding mums

Not a newborn but DD had major surgery and have spent quite a lot of time on children’s wards. Top tips are something warm to wear at night - it gets v cold and you only have a single light blanket and a screw top insulated coffee cup and a supply of decent tea and coffee - NHS supplied stuff is disgusting and you can end up spending a fortune going to the canteen for coffee etc all the time.

There is usually a parents kitchen and you can use the fridge - we stocked up on M&S microwave meals which made a lot of things better.

We also took it in turns to have a bit of time out of the ward - even half an hour to pop to a shop or grab a coffee somewhere that wasn’t the hospital was amazing.

See if your phone company will give you an extra couple of gb of data as hospital WiFi is notoriously bad and the days will be very long.

Hope all goes as well as it possibly can.

One of the things that makes bf hard in hospital is that they will be constantly asking you ‘how much milk have they had’ and obviously if it’s come from the boob you’ll have no idea.
Maybe time your feeds before you go in so you know what’s normal for you so you can say - yes taken a full feed, or half of a feed taken
She’ll probably be tube fed for a bit after - your breastmikk can be used for this. Try to avoid gravity feeding (they just tip a load of milk down) and instead pace feed where you drip down 5–10 ml at a time. Gravity feeding not good at all for a baby and esp a bf baby that is used to taking longer to feed.
It’s perfectly possible to keep bf your baby after they’ve had a break due to illness - they’ll remember how to latch and will enjoy doing so if they’ve done it before. Please don’t be pressurized into switching to bottles unless you want to. Do note it will be hard on you though that you’ll always have to be the one in hospital and not able to go home and rest properly

Oh and keep her nappies once you’ve changed her - they might want to weigh them as a way of checking she’s drinking enough