The day has begun in the same spirit as last night. One of the many doctors whose care she is in has informed us that the general consensus is that she has Trisomy 18 (a genetic disorder in which there are 3 instead of the usual 2 chromosones at number 18). This has yet to be confirmed, it is just that the various defects altogether seem to point to that being the culprit. At this point it is not a definite diagnosis, but they have requested that the lab fast track her genetic screening.
If she does indeed have Trisomy 18, then she has already beaten the odds, as more than 90% of babies with it do not survive until birth. Beyond that the odds are that she will be dead by a year old, but there have been cases reported of children living past ten with the disorder.From some further readin I have just done, apparently there are cases of adults being diagnosed with it (most likely because there was no such diagnosis when they were children) but they seem to be ones who had the mosaic variety (ie, the triple 18th chromosome is not present throughout all cells; some have 3, others have 2).
Another aspect of that being her diagnosis is that once they feel we have learned how to care for her (tube feeding, etc) we will be able to take her home, which would be better for all concerned, as we can get down to a 24/7 love fest.
At this point I am beyond hope and hopelessness and will try to stay in the present and give her all I can while she is there to receive it.
For more info on Trisomy 18, visit here.