The definition of "experiment"...

According to www.dictionary.com the definition of experiment is as follows...


1.
a test, trial, or tentative procedure; an act or operation for the purpose of discovering something unknown or of testing a principle, supposition, etc.: a chemical experiment; a teaching experiment; an experiment in living.
2.
the conducting of such operations; experimentation: a product that is the result of long experiment.

So, why name my blog "the preemie experiment"?

Let me start at the beginning.

The day my water breaks, with my first pregnancy, I was 23.0 weeks pregnant. The experiment begins as soon as I am admitted. I was told that I would go into labor within 24 hours. When that didn't happen a neonatologist came into my room to tell my husband and I that our daughter will never be normal if she is born before 26 weeks and that she would most definitely have disabilities. He told us that we should just hold her and let her die in our arms. He was even willing to make sure our wishes would be carried out in the delivery room.

How could a doctor be so cruel? How could he stand in front of us and tell us to let our child die? One very simple explanation... he had seen other preemie experiments and the outcomes were not good.

I didn't appreciate his knowledge at the time.

When we refused to give up, I was moved to another hospital with a NICU that was able to care for micropreemies. Before being transferred I was shot up with steroids to help her lungs mature (another part to the experiment). At the new hospital I had daily tests and throughout the next 2 1/2 weeks I had more steroid injections. (ah... the experiment continues... In case you aren't aware... there is no proof that more than one course of steroids is more effective but being that I was now willing participant of the experiment-they can do what they want)

The experiment received their next participant the day our daughter was born-at 25.5 weeks, weighing in at 1 pound 12 ounces and 13 inches long. Post natal steroids for her-not being sure on the dosage-they just guess (based on past participants). So many tests for her lead to many blood transfusions. X-rays, ultrasounds, exams... all part of the experiment. Central lines, TPN, IV's-all without any pain meds. Is this humane? Alarms blare, phones ring, people talk loudly around the babies. All part of the experiment.

78 days later-daughter is discharged and we are told, "she's a fighter, she'll be fine." The experiment continues for the first year. We attend follow up meetings to check her progress. A success in their eyes which means more willing participants for their experiments.

That was 8 years ago. She walks, she talks, she is advanced in some areas of school. She is beautiful. Hardly an outward sign of her prematurity.

A success?

Not if you ask her. She is in physical pain daily thanks to mild cerebral palsy. Headaches. Seizures. Major sensory issues. Can't write long due to fatigue and pain in her hands. Severe OCD. Pain in her eyes from the scar tissue. Has thoughts of killing her parents and her brother, and even herself. Tics. Chronic constipation. Yellow adult teeth. Reflux that has put holes in her teeth. Years of physical therapy. More tests. Lots of blood tests. Etc... blah, blah, blah.

Our heart aches for our daughter. I don't know what life would be like without her. I just can't bear to think what life will be like *for* her.

There are new participants every day. Even younger ones. 22 and 23 weekers are entering the experiment even as we continue with ours.