Alice's lip repair: part three

With hindsight, Alice improved immeasurably once the morphine drip was removed the morning after the op. Of course it's difficult to be sure about cause and effect, and babies can't tell you whether they're feeling better because the pain has gone anyway or because they're not being pumped with analgesic any more... but either way she perked up around midmorning and took a bottle of milk quite calmly, although it was still slow going. She also gave us her first post-repair smile which was indescribably wonderful!

One lovely thing about the ward which I think really helped Alice (and us) was the sensory room, all the way at the end of the floor and feeling a world away from the noise and bustle of the ward. It was a dark room, filled with soft mats, beanbags and shaped cushions, with a board of switches on the wall which controlled different light installations and effects. So there were bubble tubes, fibreoptic curtains, a mirrorball, wall projections etc. Alice has always loved looking at lights and colours and our visits to the sensory room seemed to distract her completely from her discomfort - and gave us a chance to sit and cuddle with her privately in a less medicalised environment. (Obviously this was only once the morphine drip was out and we could actually walk around with her.)

By early on Friday afternoon we were making plans to take Alice home, and having been given our supply of paracetamol and ibuprofen, vaseline and saline for wound care, and syringes in case bottle feeding regressed again, we walked back to Victoria - feeling I have to say like it had been far longer than 48 hours since we walked the same route in the other direction...

Alice's lip repair: part two

We arrived in recovery at about 11.30 to find Alice absolutely beside herself screaming, which was pretty horrible. At first nothing seemed to calm her - she wouldn't touch the bottle we'd brought and wasn't impressed with being fed by syringe either, although she must have been starving. Lots of cuddling and a booster shot of morphine later and her heart rate had finally slowed down enough to move her back to the ward, but she was still upset. And we were so busy trying to calm her down that we hardly registered her new appearance at first, although it vaguely sunk in that she looked completely different. The rest of the day was spent alternating between trying to get her to feed and trying to get her to sleep, but it was a vicious circle really - she seemed too exhausted to eat but too hungry to properly sleep. She was getting automatic doses of morphine from a machine attached to a drip in her foot, which was keeping her dopey - and in retrospect may have been affecting her appetite - but not dopey enough to sleep for very long.

By the end of the day we'd managed to get a total of 250ml of milk into her through a syringe, with her fighting almost every tiny swallow. It was a painfully slow and difficult method of feeding and I really started to panic that she wasn't going to take the bottle ever again. But in the early hours of Friday morning she started to at least tolerate the teat in her mouth, and in the early afternoon she deigned to suck it again, thank god. It was an awful night though, me sleeping in snatches on a pull-down bed and Matt miles across town staying with a friend. It was just so counter-intuitive and cruel that we couldn't all be together as a family just when we needed each other most. I think the couple opposite us both managed to stay with their son somehow (even if one of them was sleeping in a chair) and I think we might do this next time if we possibly can.

Alice's new face was initially a bit swollen and the whole upper lip was bloodstained and covered with tape, so we couldn't really see the results at first. But it soon became apparent that the surgeon had done an incredibly neat job - I couldn't believe the smallness and straightness of the scar considering how wide the cleft had been. Her nose looked most different in a way - quite squashed and sort of pulled down in the centre where her 'new' nostril has been formed. But although I was a bit shocked by it all at first (I almost didn't recognise her), it's amazing how quickly I got used to the new look Alice. Especially once she had calmed down a bit and her same old personality began shining through again.

To be continued...

Alice's lip repair: part one

We arrived at the Evelina Children's Hospital the afternoon before the op having walked from Victoria via St James' Park and Parliament Square, which was very pleasant and made us feel more like tourists than the parents of a baby about to undergo surgery. The Evelina is part of St Thomas's and is brand new - it looks great when you go in, lots of bright colours and art and entertainments, including a working helter skelter. The levels are all named and coloured after different bits of the natural world - Ocean, Mountain, Sky etc - and you ascend to each one through an atrium in lifts named Sun and Moon. So far, so unlike a hospital. But once we were on the ward and waiting in a very small and hot play area for Alice to have her pre-admission check, it did feel suddenly more institutional. Alice eventually had her weight, heart rate and blood pressure checked and we hung around for a while longer while the theatre schedule was confirmed so we knew what time to give her the last feed, before going over to the hospital accommodation on the main St Thomas's site.

We had a tiny room in a flat of about six rooms with a shared kitchen, toilet and bathroom. And although it was probably no more basic than some hostels I've stayed in (and had to pay for) there were a few things that really grated on our already frayed nerves. The kitchen had a kettle, a microwave and a steriliser but nothing else - no crockery or cutlery or utensils of any kind. Which made even having the kitchen rather pointless, I thought. With hindsight we should have gone over to the hospital restaurant to eat, but we were so knackered and anxious about the next day that we just wanted to hibernate. But the bathroom sink was blocked, the lift was covered in grafitti, there was nowhere to plug in a phone charger or anything else and the whole flat smelt of dirty nappies, so all in all it was hardly conducive to a comforting night.

We woke Alice for the last milk feed she was allowed at 1am, after which she slept better than we did I think. She didn't even seem too bothered not to be fed when she woke up at 5.30, sucking happily on her dummy and staying fairly quiet even when we got back to the ward to be admitted at 7am. After a while the anaesthetist came to have a chat about what was going to happen next, and we took Alice downstairs to theatre at about 8.30. I thought it was going to be completely traumatic watching her be put under with the gas, but in fact the anticipation had been far worse. She went to sleep very peacefully and it was almost a relief to know that it was all happening at last, we'd handed responsibility for her over to the surgeons and there was nothing more we could do for the time being.

We'd been told it would be two or three hours before Alice would be awake and ready for us to see her in the recovery ward, so we walked along the South Bank and had a coffee in the National Theatre cafe before returning to the ward to sterilise some bottles (there was a steam steriliser in the 'parents kitchen' on the ward but it didn't seem to be working and the nursing student on duty didn't know what to do with it either, so in the end we used our own cold water sterilising unit which we'd brought with us - I'm very glad we had it because it made me feel more in control, using something I was familiar with and not having to bother the staff all the time). Then we went for breakfast in Starbucks across the road and were on our way back when the nurses phoned to say Alice was awake.

To be continued...

Four months and three days

Alice ten days after op:

Four months minus one day

Can't believe Alice is four months old tomorrow! So much has happened but I've been unable to blog due to no internet access in our new house yet.

The main event has been her lip repair which was last Thursday. I will type up my notes about that later, but for now here's a few pictures:

Blissfully ignorant just before surgery:


Still a bit of a mess:


Cheering up:


Tape removed from stitches:


On the way home: