OK, this page is for NICU parents.  Our hope here is that the ideas here benefit you in some way in your mission to care for your baby from the NICU.

Parents of disabled kids have a very high divorce rate, even by modern American standards.  If keeping the marriage intact is a concern, bear that in mind and take action as you see fit.

"Trust but Verify".  Obviously the NICU doctors have a job making critical decisions in urgent situations.  Obviously the bulk of their efforts are wonderful.  But, it will empower you to know what has transpired with your child, and get the full set of medical records from your hospital.  Ask the clerks for a summary sheet of medications, a summary sheet of medical test results, and a summary sheet of cancelled tests.  Ask for the "nurses notes" also.

You can find copies of the "Physicians Desk Reference" on the computer auction website for under $15.  This isn't going to make you a physician, but it might give you some ideas for questions and issues to raise with your Primary Care Physician as time goes on.

You might want to learn or ask if any of the drugs and vitamins have interactions or might cause blood serum tests to provide misleading results.

If you live in the US, don't forget that the "Family Medical Leave Act" will allow you to take some extra time off from work to deal with the critical medical needs of your child. 

Now if you think that gentamicin was a problem for your child, these observations of my son might bear some attention.  When we brought Erik out of the hospital for his first car ride home, when the car was in motion, he was screaming horribly.  In hindsight we wonder if Erik was having trouble dealing with the sense of vertigo and oscillopia, and processing the moving images was too much for him. 

When he was older, the lack of a functioning vestibular system might explain the fun that Erik would have on kiddie roller coasters.  Other kids would be troubled, but Erik would be happy. 

Erik and some other kids who've gotten gentamicin (not all of them of course) have an issue called "motor restlessness".  Maybe that is due to the deafness, maybe that is due to other neurological factors associated with the use of the drug.  Maybe it is unrelated.  Maybe someone knows, but they are not telling.

If your child was given gentamicin, to deal with a problem of sepsis or Necrotizing Enterocolitis, that seems to be the standard and effective medical response to protecting the life of the child.  If your child developed these conditions after being given formula, you should be very carefully evaluting the statements you are told about this.  Formula is associated with NEC, and formula also is associated with an impurity, a bacteria called Enterobacter Sakazakii.  That bacteria will cause severe problems for babies.  The World Health Organization issues warnings about the use of formula because of it.  Anyway, in our case, in the hospital, when Erik got the NEC, we were told that it was not associated with the use of formula.  At a minimum, there is a statistical correlation.  In some countries, the best practice of medicine seems to be to avoid formula in preemies, and use a breast milk bank or wet nurse.

Call your hospital pharmacist.  Get the brands and date codes of all drugs used and formula.  Then if you see that there is an FDA warning about that that batch, you can bear this in mind for the care of your child.  If you are very motivated, get the names of the machines used to test the blood serum levels of drug levels.  The FDA has issued recall notices for some brands of gentamicin test equipment.

Another symtom of a toxic reaction to gentamicin is seizures.  Erik had seizures, and when I convert the videotape to electronic format, I'll put it on youtube or something so that you can see.  At the time, the seizures were attributed to the delivery, and it was said there would be no lingering effects.  Muscle twitching is noted as being a reaction: http://www.consumerreports.org/mg/drug-reports/gentamicin-sulfate-injection.htm