It's been a while and a busy 3 weeks or so. Adam had his first Christmas, and was a very lucky boy, receiving lots of lovely things from many people, including a teddy bear knitted by the Neonatal Unit pharmacist's mum! On 5th January, he reached term, weighing just under 2 kg (4lb 4oz). He's now in the strange situation of being 1 week old (corrected age) and 13 weeks old (chronological age). He's becoming progressively more alert, gazing around and looking at his new mobile, when we put it above his cot. Being in a cot, it's much easier to get him out for a cuddle, or just to soothe him in situ, which has been lovely, and made us feel much more able to help him, probably also as he responds better to touch than he did when we was very premature. We've done some good breastfeeding practice - encouraging him to suck and explore an "expressed" breast, because as he's not so hot at breathing yet, it would likely be a bit much for him to have to deal with too much swallowing. He's always been quite keen on sucking, and breasts are no exception, though he can look rather wide-eyed and overwhelmed, being somewhat dwarfed by them. Entertainingly, he's often seen by speech and language therapists, who deal with breastfeeding, guidance for minimising reflux and providing the right level of developmental stimulation, rather than precocious conversation skills! He has also been assessed by an occupational therapist who seemed to think he did ok at waving his arms, legs and head around in a mildly co-ordinated manner and marked him as "moderate" at lots of things newborns are supposed to do, like looking at faces, orienting to a rattle and knowing when he's had enough. This last skill she marked as his special strength, which I feel is slightly damning with faint praise, but nevertheless she seemed satisfied with him. He had his first bath at night to try and settle him, followed a week later by his first bath by us, which he seemed to enjoy, though he had the same expression on his face as he often gets after trying breastfeeding (see pic).
So all in all, developmentally he seems to be coming along ok, and is certainly becoming an ever more lovely little man. Health-wise, however, he still has some big challenges to overcome. Since coming off the ventilator and steroids, his oxygen requirements continued to drift upwards, hitting 60% last week. They therefore took him off Optiflow (high flow oxygen through a nasal cannula) and put him back onto CPAP (squishy face mask machine giving higher pressure support) for a few days. Maybe thanks to this little rest and maybe due to being given diuretics to get rid of excess fluid on his lungs, he moved back onto high flow oxygen and the oxygen requirements have decreased to around 50%. This is still high, however, and it will still take him a long time to get better. We had a long chat with one of the consultants this week, where they told us the various things they will do now that he is term and still sick, including a special contrast x-ray to check whether he is refluxing into his lungs, making them worse and it hard to recover, something that might need treating surgically. They also mentioned for the first time that, if he continues to make slow progress, eventually he might need a tracheostomy (making a hole in the windpipe to securely fix him to his breathing support). He could come home with a "trachy" and, indeed, the reason for doing it would be to give him a more normal life, but we'd need to be trained on suctioning his tubes and he'd need to always be with someone trained to do this. Along with being a very scary prospect, this also has several implications in the longer term, for the viability of childcare and might also mean we'd need to get (employ?) night support so we could ever get some sleep. Needless to say we hope he doen't need one and gets better on his own, with growing and/or by medical treatment of his reflux.
The more urgent health complication Adam has developed involves his eyes. Since about 32 weeks, he's had scans every week to test for retinopathy of prematurity, a disruption of blood vessel growth in the retina that is caused by the changing oxygen concentrations experienced by the eye following premature birth and which is exacerbated by the administration of high oxygen concentrations such as Adam has needed for his chronic lung disease. He'd been bobbling along at stage 1 of the disease, which most babies get and which most spontaneously recover from, but has since progressed to the extent that they need to treat him to stop him from going blind. They do this using laser surgery to destroy the peripheral retina, so it stops producing factors that produce abnormal blood vessel growth. Apparently it works in about 85% of eyes and he needs both eyes doing, giving him a 72% chance of it working in both eyes. While it's good that it will probably work, it will increase the chance he will need glasses (not such a a biggie, but there's needing glasses and needing glasses, and it's hard to find out how myopic the treatment and/or the disease might leave him), and the chances of it not working, leaving him visually impaired or blind seem horribly high. It seems so tragic that we know his vision is in danger, while he can see now, and is just starting to be really interested in looking at stuff. Still, it's happened and now it has it needs sorting, so hopefully the surgery will work, it'll be sorted, and Adam can get on with being him. He's having it done today. He'll be ventilated, sedated and paralysed, sent to Homerton Hospital for the procedure and then come back to the ICU at UCLH to be taken off the ventilator and recover. We'll know whether it's worked after a week or two. All fingers crossed!
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| Adam on Christmas Day, aged 38 weeks |
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| with his new mobile, aged 39 weeks and on CPAP |
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| Our lovely boy, now 40 weeks/ 0 weeks/ term! |
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| First bath with Daddy, almost 41 weeks/ 1 week old |
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| "That blew me away!" |
