I only have your email address out of the dieticians and don’t have the Speech and Language Therapist’s or the Gastroenterologist’s email address. I wanted to describe something to you and wondered if you would kindly pass this on to them?
Last night Toby pulled his tube out so instead of reinserting it first thing this morning as I usually would, I left it out and skipped Toby’s first feed at 7am, waiting until his next feed was due at 10am to offer him milk from a bottle.
He was definitely hungry by 10am and was getting a bit restless and fussy – clearly angling for something.
I sat him on my lap and offered him milk from the bottle and he took to it without hesitation – he was clearly hungry enough to suck away and seemed to be doing well. I suppose he was sucking for about 2-3 minutes, though I can’t be exactly sure!
However, he hit a point where he stopped feeding and started screeching – he was unhappy, stretching his body out and back and crying. He would not take anymore milk from the bottle and cried if I tried to offer more. However, he was instantly settled with his pacifier. There was no coughing. He had only taken about 15/20ml.
The feeding pattern above is just like he used to be before the NG tube went in – i.e. for the most part he would take no interest in the bottle but if he was really hungry I suppose, he would take the odd 10/20ml here and there – and occasionally one larger amount every 24-48 hours. The nurse termed it ‘survival feeding’.
We presumed that this behaviour was down to a cow’s milk protein allergy, as once he was being fed by NG tube on Nutramigen AA, he seemed to be happy. However, if we bear in mind that the time at which Toby’s cow’s milk protein allergy was diagnosed coincided with when the tube went in – and, therefore, when he was getting the correct amount of milk for the first time in a very long time – could it still be possible that it was simply that his hunger was being satisfied that is what settled him and made him content? – That and the fact that his throat and oesophagus were now being bypassed as the milk was going down only by NG.
Now that I have tried an oral feed on the ‘correct’ milk and seen exactly the same discomfort/unhappiness creep in after a very short time of feeding (coupled with the fact that he seems to hit a point with solids at which things have deteriorated to the point that we can’t carry on – and, in fact, he doesn’t readily open his mouth in the first place) can we presume that there must be/is likely to be something that causes him a problem either in his throat or oesophagus – something that puts him off feeding orally?
I hope the way I have phrased this makes sense!
In summary, when really hungry Toby was able and willing to drink from the bottle. However, even on the ‘right’ milk he soon became unhappy (after about 15/20ml) and would not continue to feed orally. What could be the matter?!
Needless to say I put the NG tube back in and he has been feeding via the pump since.
I am of course expecting your new feeding regime through tomorrow – with a view to getting Toby more interested in food through careful ‘starvation’ techniques! However, with this recent information in mind, does it suggest that a gastroscopy would be helpful sooner rather than later at this point?
florencejoy 