And then there were 2

"Are you going to have any more children?"

That question, no matter who asked it, would incite a rage inside of me, like nothing else I ever felt. How could we possibly bring another child into this world knowing that the chance of it being born premature was extremely high? The simple answer... we couldn't do it.

We sure did want more children. I love being a mother and hubby is a great father. As a little girl I always pictured myself as a mother of 2 children. Ok so I also pictured myself living in the middle of a huge field that had tall grass that would blow in the wind. I would sit and watch my children run through that tall grass and I would soak up the beauty of the sun and how it reflected off of their golden hair. Then I grew up and realized that life was not like the Little House on the Prairie.

As the years passed I dealt with all of the anger, sadness, depression, that came along with the decision to not have any more children. By the summer of 2005 I was pretty much healed. So, I sold all of the baby items that I thought I needed to keep. It was that last step in wrapping my head around the knowledge that we would only have one child.

At the end of that summer I started feeling sick. Missed periods, major cramping, constant urination, nausea, constant crying (all speaking engagement were now out of the question-no one could understand me through the uncontrollable sobbing). Just for ha-ha's I took a pregnancy test, 2 of them actually and they were both negative. Off to the doctor I went convinced that I had some sort of cancer or tumor.

"Congratulations you're pregnant" said this cheerful voice. "I'm WHAT?"

After nearly passing out of the floor, the next leg of my journey began, nearly 7 years after the birth of my daughter. After finding the right doctor and hospital (we moved to a new state just 10 months before getting this big news) I was determined to not allow my 2nd child to be a part of the preemie experiment. I chose a hospital that did *not* have a level 3 NICU. I knew that, if needed, my little one could be transported across the street. I chose a high risk doctor that understood our wishes-no resuscitation before 25 weeks. She also understood that I was not to have mag sulfate, under any circumstances. She also agreed to tie my tubes during my c-section. (other docs refused to do this because they felt I was too young... I'm in my late 30's!)

My daughter was a nervous wreck my entire pregnancy. One day, while rubbing my belly she said, "baby brother please stay in there as long as you can because it's so hard to be a preemie."

It was a very hard pregnancy with many complications (list too long to mention) but I made it to 35.4 weeks. As of now, his only preemie complication is severe reflux. He is 8 months old and the light of our lives. I am so very thankful that he was a surprise.

The baby factory is officially closed!

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.