Long time no diary: a partial explanation. (Warning: contains largely self-indulgent content not related to Free Software.)

My daughter Marianne was born on a highly auspicious date: the 8th August 2008, the most eightish date for 20 years. All went reasonably well; the paediatrician who checked her over at Newham General Hospital detected a heart murmur, but we were given an outpatient appointment a month away and discharged. It took a lot of effort and perseverance to establish breast-feeding, and her weight gain was slow, but she seemed otherwise to be healthy and doing well.

However, at the outpatient appointment at the cardiology clinic at Great Ormond Street Hospital, we were told that Marianne had a heart defect: Tetralogy of Fallot. The cardiologist immediately reassured us that this was an operable condition with extremely good prognosis, but that the operation wouldn't take place for a while, as the bigger the child the better the recovery from the necessary open-heart surgery. In the meantime, the combination of the ventricular septal defect (the ‘hole in the heart’ which caused the audible murmur) and the pulmonary stenosis (a narrowing of the pulmonary artery, the vessel responsible for taking deoxygenated blood to the lungs to be refreshed with oxygen), together with her partially-overriding aorta (the opening to the aorta being over the VSD) meant that Marianne's heart would allow deoxygenated blood to go around the body again without being refreshed with oxygen, and consequently would have to work significantly harder (leading to right-ventricular hypertrophy and also explaining her slow weight gain).

Although we had been reassured by the cardiologist, and also the GOSH cardiac liaison nurse we spoke to, the diagnosis was still a shock to me: I think I spent about three or four days being completely unable to think straight. But the mind is resilient, and after a little bit it settled down, with the reassurance that many medical professionals: health visitors, dieticians, nurses, cardiologists and general practicioners were available to help. Other sources of support were great as well: family, colleagues, friends and neighbours, and even groups on mumsnet were extremely helpful and understanding.

And so life continued. Many of the normal stages of child development happened: first smile, sleeping through the night, not sleeping through the night any more, playing with toys, discovering wrapping paper, sitting up, and beginning to eat food; all this punctuated by visits to the health visitor, cardiology clinic and paediatrics unit. And then, eventually, came the letter giving us a date for her surgery: Thursday 5th March.

First there was the pre-admission hurdle to jump: various measurements to make, various blood samples to take, and the consent form to sign. Except that we couldn't: no surgeon was available, as they were all too busy. Fair enough; we arranged to come in the following week for that. It was at that point, signing the consent form for my daughter's heart surgery, that I experienced shock and panic again, this time for the best part of a week: while the full repair for Tetralogy of Fallot is a relatively well-understood procedure (it's been performed for longer than heart-lung bypass machines have existed) the mortality rates are still of the general order of 1-2%. Because Marianne was outwardly healthy, it was very hard to believe wholeheartedly that this scary procedure was utterly necessary, and so it felt like I was needlessly making her play Russian roulette.

The 4th March rolled around, and we were essentially ready: bags packed, all urgent items at work completed, contingency plans in place. And then the hospital phoned: a more urgent case had come up and so there was no surgical team available for us; we were rescheduled for the following week. To be fair, we had been warned that this might happen – even on the day itself, so having a day's notice was a bonus. Still, there was a lot to unwind: not just the various plans, but also our own emotional preparedness. Back to the normal routine, with an extra week of voluntary quarantine for Marianne (coughs and colds noticeably impede recovery from operations).

There was to be no second stay of execution on the 11th March: we were given ‘starvation times’ for Marianne: no food after 2:30am, no breast milk after 4:30am, and no water after 5:30am. The alarm was duly set for 4am so that she could get a last stomachful. Then we were all set; we set off in plenty of time to get to the cardiac ward at GOSH for 7:30am.

Once there, Marianne was weighed, and then dressed in a hospital gown. She then played with a set of coloured wooden stacking rings, while Jenni and I debated the merits of the various colour combinations that she was inadvertently modelling – well, we had to talk about something. A surgeon came down to assess her: determining whether she was well enough for the operation to take place, and checking that she'd had nothing to eat or drink since the small hours. With a certain amount of humour, she drew a purple arrow on Marianne's chest: it is NHS policy that all surgical patients should be marked up before the operation, because there have been a few too many embarassing errors in theatre (amputating the wrong leg, and similar). As the surgeon put it, though, “there is only one heart”.

Then we waited for the most difficult part: taking Marianne to the anaesthetists and leaving her there. We were allowed to hold her while the nitrous oxide was given; it took hold quickly – without the wriggling which we had been warned might be a possibility. And then we left the room, because it was what had to be done.

Waiting while your child is having surgery is not a pleasant experience. Fortunately, the hospital is aware of this, and enforces a certain amount of activity; they require parents to sort out their hostel accommodation during this period, which involves bureaucracy and therefore takes time. Also, we hadn't had breakfast by this stage, so that was a good thing to do, and we had been given (not by the hospital!) £10 to convert into a grey book. Even extending all of these things as much as possible, it was only about two hours since we'd left Marianne (where the operation was meant to take about four hours in total), so it was an immense relief that, when we returned to the cardiac ward and a nurse was able to telephone the operating theatre, we were told that Marianne had been weaned off the heart-lung bypass machine successfully: in other words, her heart was beating again.

In fact, we were lucky: throughout our stay in hospital, we never really needed to be given any bad news. By the evening of Thursday (the day of her operation), she was taken off the ventilator, able to breathe for herself. The following afternoon, she was removed from intensive care, with her breathing and temperature no longer needing to be continuously monitored. Even the one complication, a buildup of air in her chest cavity, was rapidly dealt with, and her chest drain (a tube attached to suction, drawing fluid away from the chest), pacing wires (to correct any irregularity in the heart rhythm) and intravenous lines (used for delivery of pain relief, mostly morphine) came out at lunchtime on Saturday, leaving her with a single stitch (not the only mark, of course, but the wound on her chest is held together subcutaneously). On Sunday morning she was able to breastfeed, and she did so with enthusiasm and vigour; the nurses then removed her nasogastric tube, and told us that we were likely to be discharged the following day.

And so it proved: after one last echocardiogram, we were given some medicines (paracetamol and diuretics), an outpatient appointment for mid-April, and a discharge letter, and told to go home. And, not without some trepidation, but also with a great deal of optimism, so we did.

All of which is one way to say that, if I have dropped patches on the floor, failed to fulfil administrative duties, or ignored requests for assistance in whatever context: I apologise, but I have had other things on my mind. It seems to be common knowledge amongst parents that worry never goes away, but with luck the worries that I experience will be less acute for a good little while.