12 January

Well, there will be no hernia operation today – Dr Kirby came in and decided Max is too small, and as there are potential complications which could occur (particularly in relation to his testicles) in such a small baby, he’s decided to wait. Kirby will do both the left and the right sides at the same time when he does the surgery, even though only the left is a problem right now. He thinks the stoma is looking good, and is thinking of holding off on re-sectioning the bowel until Max is term age. The hernias will probably not be able to be done at the same time, and may even be done after the bowel surgery, as the open bowel is an infection risk.

So, they tried to put Max on CPAP (extubate) today instead. He tried really hard, and did better in many ways than last time, but still not good. His breathing was mostly quite shallow and occasional apnoeas made it more difficult to keep him saturating properly. Then, he began having bradycardias (when the heart rate drops below 100 bpm), which is new for him. Sometimes, he was having them both at the same time (apparently apnoeas can trigger braddys). Once he’d done 2-3 of these in under half an hour, Julie (nurse practitioner) said it was time to re-intubate. I agreed.

Max tried so hard. In the end he didn’t last as long this time as last – from 2pm to 5pm(ish) only. So, back on the ventilator, and we re-assess. Max needed blood today – and I gave it! No problems at all this time (last time I tried, the doctor really struggled to find an appropriate vein), and Julie was brilliant.

From a good to a bad to an OK.

However, today was a hugely horrible day for everyone in the unit. A lovely little boy who was born 20 days before Max (at 31 weeks) had his care removed after a very long battle. It was absolutely horrible, sad, and very scary. It was devastating for his parents, Amanda and Jodie, and their parents. Lewis looked so good, it was very strange. Simply (as I don’t know the whole story, of course), his lungs weren’t good enough, nor were never going to get good enough for him to survive.

Of course I’m horrified and devastated for Jodie and Amanda, but I can’t help being extremely scared for Max, and Mark & I. What if Max goes down the same path? What if he, like little Lewis, has everything working – except his lungs? And what if they can’t get better? The CPAP failure only goes to fuel this fear.

The staff were very professional, but I could see they were shaken as well – with Lewis, with Ronan’s hernia surgery(another very small guy), with Max’s CPAP attempt, and with several other babies needing various procedures done. Such a long, long, horrible day all around.