Eight months and twenty days

It's been three weeks since Alice's palate repair operation, which overall was a less traumatic experience than the previous surgery. Although she had an eight hour wait with nothing to eat before going into theatre, she's at a much more distractable age than she was last time. Similarly, although she was screaming her head off when she came out of the anaesthetic, we did induce her to smile within a few minutes (whereas before she was inconsolably miserable until the next day).

However, we still had a difficult time once we took her home. For a week she wouldn't drink any liquid, either from a bottle or from a cup, so any milk she had was mixed up with baby rice etc and taken off a spoon. She also stopped sleeping straight through for 11 hours at night (yes, I know how lucky we were) and instead refused to settle in her cot at all. We could only get her to sleep by taking her out in the buggy first, and she regularly woke in the night and wouldn't go back to sleep.

When you consider what she went through, two unsettled weeks isn't much to put up with... but my god it felt like a lifetime at the time. It can be quite difficult to see the wood for the trees at the best of times when you're looking after a small baby, but when even the tenuous routine you've established is disrupted you feel like you're never going to feel in control again.

However, here I am. And gradually I am remembering what it's like not to be exhausted.

Alice's lip repair: the aftermath

Alice remained on staggered doses of liquid paracetomol (2.5ml) and ibuprofen (1.5ml) for a week after the op. It was quite difficult to know when to stop with them, as she did seem to be crying a lot, but whether it was from pain or just general discomfort and unhappiness after her experience was impossible to tell. With hindsight (again!) I think it was partly the painkillers themselves that were upsetting her with their effect on her tiny tummy :(

She continued to do well back on her bottle although didn't take as much in one feed as before. It's only now, nearly four weeks later, that her digestion seems to have settled and she's taking what I'd consider to be a full feed again. In the meantime she developed a serious crying habit and started fussing over every feed. The GP diagnosed colic, but the cleft nurse and I both felt that it was more due to reflux which in turn was causing her to eat less so that she was constantly slightly hungry and grumpy. However, we tried a 'staydown' formula to help combat reflux (Infacol having had no discernible effect) and she hated it, so who knows? Suddenly since this weekend she's been much happier and eating loads and I don't think it's due to anything we've done differently in the end. So frustrating that babies can't just tell you what's wrong!

Appearance wise, it took less than a week for the black eye and all the swelling to go down, although the inside of her nose on the cleft side was still very narrow and completely bunged up with snot and dried blood - but the cleft nurse assured us this was normal. The nose itself returned to a more normal, relaxed shape after a few days although it will never be totally symmetrical. The stitches fell out on their own over the course of about a fortnight and the redness around the scar disappeared too. We were told to wash it once a day with cooled boiled water and apply vaseline four times a day to keep it moist, and after six weeks we need to start massaging with Vitamin E oil/BioOil to help the skin stay supple. Her upper lip has puckered slightly as the scar has pulled together but apparently this will relax again in time; however, it's become slightly raised which is a sign that it's healing TOO well and overdoing the efforts to repair itself, so we have to get some cream from the doctor to halt this process.

This is probably all very boring in its detail but you never know, someone might find it helpful! I know I wanted to know what to expect beforehand, anyway.

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 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:

Eight weeks and three days

Just got back from five days holiday with my family. Alice's first experience of many things including snow, squirrels, deer, ten pin bowling and snooker. (Embarrassingly, I am only marginally more skilled at the latter than she would have been.)

We ditched the dental plate halfway through the week after phoning the cleft nurse for advice - although Alice had more or less got the hang of feeding, the plate had given her a huge ulcer on her tongue and when it started bleeding I couldn't bear to make her keep it in. We may try again once we see the orthodontist in Brighton, but the surgeon has said that if it's really distressing her (and us) we don't have to continue.

It's funny, until now I don't think I really believed that a seven week old baby had a defined personality. They might vary in their sleeping and crying habits, but basically they were still blank slates. But since observing the change in Alice brought about by the dreaded plate, I've realised what a strong character she already had beforehand.

Seven weeks

Alice is still far from convinced by her plate. She's managing just about enough of her feeds now, although still fitting in one or two extra bottles a day, but her sleep is very disturbed - she keeps waking herself up at intervals with pitiful little cries, then dropping off again. And of course this plus the more frequent feeds means OUR sleep is still disturbed.

The cleft nurse came to see us today and was able to tell us that it's normal to react badly to the plate, especially if feeding has been well established for a while. We just have to persevere, and the more she wears it the sooner she'll get used to it. But although it's reassuring to know it's normal, it doesn't really help us.

It's funny, although to some extent I do want the health professionals to be reassuring and tell us that Alice is normal and the tiredness is normal etc etc, part of me would like them, just once, to say 'oh my god you poor thing that's TERRIBLE, nobody should have to cope with that, it's just much too hard isn't it?'

It's a fine line between 'normal' and 'yeah yeah tell us something we don't know'.

Six weeks and six days

Wow. I thought that pregnancy tiredness was bad, but this is something else. Almost impossible to describe. In fact, I probably have been as tired as this before, but never before have I had to function through the tiredness for so long without giving in to it. Let alone been completely responsible for the survival of another human being. However, the thing that nobody can really explain to you before you've had your baby is that you CAN function through the tiredness, you can find reserves of energy you never knew you had, just from looking at the helpless little person who's forcing you to get up at ridiculous hours and intervals around the clock. Although I sometimes get angry and desperate and tearful, the main emotion I feel when Alice is crying and I look at her red scrunched up screaming face is pity for her. I just want to stop her pain, at any cost.

She had her orthodontic plate fitted on Monday, and although she seemed ok with it at first, it began to bother her a bit more once we got home, especially once we tried to feed her with it in. I could understand her distress, having worn the dreaded retainer myself in my teens which is basically the same thing. With the crucial difference that we couldn't explain to her what was going on in her mouth and how best she could adapt to it. So she was having trouble negotiating the reduced space for the teat and her tongue, and would get frustrated and tired before finishing her feed. Monday night was thus utterly miserable for all of us, as I had to give her a bottle almost every hour, she was taking so little - and crying pitifully in between as she realised that the alien thing in her mouth wasn't going away. (Sadly she is too young to be consoled by the fact that Mr Cash the orthodontist had made the plate using fetching pink sparkly plastic.) To make things worse, Matt has had flu so I've been on solo baby duty since Sunday.

Fortunately, Alice now seems to have decided that getting her full quota of milk overrides all other concerns and she's damned if she's going to let a bit of plastic and wire get in the way. I'm constantly amazed how adaptable she is. Far more so than me, anyway.

(Weight as of yesterday: 8lb 4oz, nearly 4lb heavier than at birth. Rocketing up towards the 9th percentile!)

Five weeks and five days

Alice took her trip to the clinic at Guys totally in her stride, which is more than can be said for me I fear. She was as good as gold all the way there and while being poked and prodded by the cleft surgeon and the orthodontist, although she did squirm a bit when the latter took a mould of her mouth and who can blame her? She now has 'strapping' on her lip - a ridiculously low-tech but fiddly contraption made from sticky tape and a rubber band which will help get her muscles ready for the first operation (scheduled for April 5th). She'll also have a plate inside her mouth which will be fitted next week (so *another* trip to London.)

It all makes her 'problem' seem much more real, somehow, now the medical and surgical teams are so visibly involved. And signing the consent form for the surgery was horrible - even though it's a minor procedure I still looked at the list of possible risks and thought: how can I do this to my baby? I know it's all for the best, but part of me wishes I could keep her safe at home just the way she is, instead of having to interact with the medical establishment and the big bad world in general.

Alice in her new facial attire: