Monday, April 13, 2009

A Steep Learning Curve - Part Three.

Hari was slow to gain weight from the start. She had some problems with feeding but should still have been gaining more weight than she did. She found feeding difficult but it seemed that no real attention was paid to this fact, rather there was some concentration on the ridiculous idea of me not feeding her enough.

In truth Hari would take whatever amount she could manage - some days more than others. This was obviously effected by the difficulties she found with feeding.

Early on she developed some kind of infection and was what they referred to as 'jittery'. Blood tests were done whilst she was on SCBU but this revealed nothing. Once she was on the ward further blood tests were done as some of the doctors had an 'idea' but again this revealed nothing. There was also vague mention of a heart murmur but the doctors didn't seem to be able to make their minds up about whether or not this murmur existed! In general they didn't seem to give me much information about anything and when we went home after five weeks I was armed with a lot of instructions and very little information.

The instructions were related to things like Hari being fed three hourly - little and often - and she was not to be taken outside at all until her weight increased significantly. Apparently a home help was to be arranged for two hours twice a week to stay with Hari so that I could collect my eldest daughter from playschool and buy food. I was told that I had to rely on friends to take her to playschool and to shop for anything else we might need in the way of food on the other five days of the week - if I ran out of anything then I had to hope that a friend would be able to go and get it.

Maybe it was because they were so busy organising our lives and turning our home into a prison that they omitted to tell me something else. Something else that was vitally important.

They were already aware that Hari had some degree of disability - probably related to a brain injury - probably as a result of the birth complications.

They just didn't bother to tell me about it.

Obviously the learning process needed to be rapid!

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