Overnight Max had several braddys, some which seemed to be from the water-in-the-tube cause, but the others didn’t seem to have any real reason. So, hopefully just some minor hiccups in his growth, rather than any ‘getting tired’ kind of reasons.
He’s staying on 2ml EBM per hour. Feedings will increase very slowly at first, to give his bowel and stomach time to get used to the process, but hopefully once he gets better at it, the amounts will increase much more. Then, they can think about taking out his central line and ceasing the use of the PN (Parenteral Nutrition). It’s the long-term use of this which causes his liver problems, and problems with the processing of bilirubin (basically, the same problems which cause jaundice, just a different cause). Max is a little yellow at times, but we hope that once the central line is out, and the PN is stopped, his liver will be able to get back to normal by itself.
I changed my first poo nappy (well it wasn’t poo-y when I started, but Max joined in halfway through and it soon became a very messy operation). We then had some bloods taken, got him all cleaned up and in clean clothes, and had a cuddle for about 45min. He didn’t sleep, but was awake and very baby-like – looking around, little wriggles, putting his hand in his mouth etc. Didn’t get upset and barely desated at all. Well done, Max.
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