My top tips on preparing for the pull-through surgery.
1. Mentally prepare in advance for a long surgery and when I say long I don’t mean 3hours I mean on average 6 hours (Bees took 8). Know it’s going to be unbearable but take something to do or keep your mind distracted during this time, sudoku/a film/all your boring admin (I sat and rung sky and negotiated a cheaper tv package). Or just find somewhere quiet and go and sleep because you won’t get much sleep on the ward.
2. Depending on the season, pack clothes that are right for the temperature and easy to put your child in. Bee was four months old and it was July so we went for some cute button up short sleeved/short legged onesies from Next & H&M which were easy to put on him as they didn’t have to go over his head with all the tubes and wires he had attached etc.
3. Take baby blankets – the hospital ones are super crispy and starchy. And it’s just nicer when they are cuddled up in their own blankets. Also if you previously swaddled or used sleeping bags – these wont be suitable because of all the wires they have attached. Bee was terrible for kicking his blanket off so I found it worked best if I just put it over his chest and torso and not over the bottom of his legs.
4. Pack lightly the rooms/cubicles aren’t big in hospitals and there is normally one bedside table for stuff and that’s it.
5. Tablets/chargers are essential. Hospital TV is basic and on childrens wards if turns off at 9pm (pre-watershed). We found that the iPad (Poldark’s Cornish tones to be exact) helped amuse bee and get him to sleep. And you can pre-load the iPad with programmes if you download them while on your wifi at home (hosp wifi is slow and unreliable) on apps such as BBC, ITV, Netflix etc. I even downloaded a few episodes of love island to catch up on!
6. Take all the nappy creams with you. Buy loads in advance of the operation. Speak to other HD parents beforehand and see what worked for them and just buy one tube of everything, that way you already have them all and can do a few days trial and error with each till you find a mixture that works.
7. Don’t underestimate how many nappies you will need. Think we went through about 15 a day straight after his operation.
8. Pack your vitamins. Hospital food is shit. Not sure why the hospital catering contractors (fuck you Sodexo) want to kick you while your already down, but the food is appalling whether it’s in the ward of the canteen. Prepare to live on chips and pre-packed sandwiches that will cost you the earth.
9. Get to know the ward, not just the nurses and their names, which will make you feel more comfortable anyway, but the policies. They often have policies for reduced parking fees if your child is on the children’s ward, canteen discounts, free food for breastfeeding mothers – after all every little helps. Also if you speak to the nurses they might let you heat up your own food in their staff microwave, meaning you can eat your own home cooked food or supermarket food – this will save you some money.
10. Pack some toys for your child to play with and make them feel at home.
11. Take slippers for yourself.
12. Prepare for no sleep, between the anxiety of watching and checking on your own child, the noises of the nurses coming and doing obs, the machines beeping (occulizing downstream – which means an IV tube is bent) and the other patients on the ward also doing all of those things – you might get an hour, two if your really lucky. Me and my hubby took it in turns to do nights in the hospital and sleeping in the day at my sisters which was nearby.
13. Don’t be afraid to ask or say no. Someone comes in to do a test on your child – ask what it’s for and why it’s being done, and if they seem to be struggling to do it ask for someone else. We had a senior nurse struggle to take Barney’s blood one day, and it just made it more drawn out and uncomfortable than it needed to be and I wish I had asked for someone else to do it. Also chase them for test results as sometimes things can get lost in the paperwork and you never get informed of the outcomes.
14. You will be in at least a week. Possibly two. Our surgeon prepped us for this beforehand. So we just told ourselves to plan for the worst case scenario of a two week stay, and feel blessed if we were discharged earlier.
15. Your child will be nil by mouth, for how long depends on your surgeon. Ours wanted him to be nil by mouth for a good few days to give the stitches time to heal and to give that area time to rest. This however doesn’t mean your child is getting nothing – they will be on an IV drip with fluids and sugars in to keep them nourished, or a TPN. But as it doesn’t go in their tummies it goes directly into their blood stream they will still get that empty tummy rumbling sensation – unfortunately there’s not a lot you can do about this. If bee got really cranky we gave him sucrose – sugary solution, squirted on to his tongue which distracted him and normally knocked him out. It’s also very handy to distract them when they have uncomfortable things like blood tests.
16. We were finally allowed to feed barney 72hours after the operation. So day four in hospital. They did this by giving him tiny amounts of my expressed breastmilk every few hours, and building up the amounts. Then the next day I was allowed to feed him directly – but only small amounts. And then by day three he was allowed to feed normally. But with the increase in food comes the increase in poo!
17. When will they poo? There is no straight forward answer for this one. Bee had a bowel movement while he was in recovery although I’d imagine it was more caused by some sort of muscle spasm than an actual poo. He started going properly about 48hours after the op! But it varies from child to child and case to case. As they are on the IV fluids their body still produces waste, just not as much as if they were eating properly. Prepare for these poos to smell worse than anything you have ever smelt, and be full of all sorts of blood and gunk from the operation. Nappy changes will also be bloody hard to do, with all the wires and stuff attached to them, and the inability to take them out of the bed. But don’t struggle alone, remember you have loads of nurses and people around to help! With helpful things like inca pads (basically disposable changing mats) which are really helpful as barney used to love to poo when his nappy was off. And get your nappy cream ready. At this point I really was a novice when it came to changing shitty nappies but when you baby starts pooing 15 times a day you catchup fast! I used to get all my kit out first, and squeeze the nappy cream onto cotton wool pads, so it was ready to be applied quickly.
18. Gas! Farts! Trumps! Wind! Another amazing thing your baby may now be able to do! Immediately after the op barney used to do these amazing old man/dad farts that were super duper loud, I just used to grin and laugh and feel amazingly proud.
19. Sleep patterns. Before barney had his operation he used to sleep through the night, for us unfortunately I think his operation and the trauma/unfamiliarity and messed up routine of being in the hospital clashed with the four month sleep regression and from then on he has only slept through a handful of times. But being in an unfamiliar noisy environment with observations being done through the night really does mess up their sleep patterns and routines.