Elijah continues to recover as well as we could hope from his surgery. Many of his drugs have stopped, his morphine is coming down gradually and the amount of support he is getting from the ventilator has reduced. Tomorrow he starts very small enteral feeds (via an NG tube) of just 0.4ml of expressed milk an hour to see how his stomach and remaining small intestine cope. He had an eye test yesterday which we were advised not to watch. If you’re wondering how to ensure a tiny baby keeps its eyes open in order to test its eyes, think A Clockwork Orange. Breathing in too much concentrated oxygen can lead to myopia and even blindness. When Elijah was extremely ill prior to his operation, he was on 100% oxygen for a about 2 days just keep him alive. As far as they can tell, this does not appear to have damaged his sight. He will have another test in a couple of weeks time.
Despite Elijah’s good progress over the week since surgery, Jenny and I remain distinctly edgy – not without good reason. We don’t quite trust him since seeing how quickly things can change. As Jenny alluded in her post yesterday, I’ve been browsing a few papers about nec and surgical short bowel syndrome. Survival rates for babies with conditions similar to Elijah’s vary from study to study, but seem to be mostly in the range of 60 to 95 per cent, although in almost all cases the sample size is very small (c. 20). However, the worry for us is the ongoing risk of being on parenteral nutrition (intravenous feeds) which is associated with infection and also liver disease. We have to be prepared for some set backs along the way, but hope that he gets through them with the help of the team looking after him.
When Elijah was born he was recruited for something called the Dove Study. Researchers plan to analyse the faeces of 1200 babies to see whether there is a chemical change in the poo of those who go on to be diagnosed with nec. The hope is that it will be possible to identify babies with the disease at a much earlier stage and treat accordingly to prevent death or serious complications. We were very happy for Elijah to be in the study – although of course hoped he would not get nec and that his poo would for used for the comparison group. Each time he soiled his nappy (‘diaper’ to our North American readers) we would scrape a bit out using what looked very much like a coffee stirrer from the canteen, and stick it in a pot. Now that he has gone on to develop nec, it might be that something good will come out of this shit.
Jenny: I met the “poo lady” as she referred to herself, recruiting babies to the Dove Study. She later described herself as just floating around the ward. Careless use of words. The implement was a coffee stirrer, from Starbucks.
His reduction in Morphine means he is more alert again, bright eyed, if not bushy tailed. He’s beautiful. He has no cannulas in his arms at the moment, so this means he can put his hands to his face again, and put his fingers in his mouth. It’s great to be able to see him looking more like a baby, than a beached turtle. He’s filthy. They don’t bathe babies until they are 1.5kg, because they can’t regulate their own temperature until that size. They weighed him today and he is 950 grams. Consequently he’s grubby as anything, but I can’t really smell him through perspex.