January 20, 1993

It’s Wednesday morning.  I am not sure what time since time has lost meaning inside the dimly-lit, drab walls of the hospital room.

Heather, my wife, had been hurriedly admitted to an intensive care unit within the labor and delivery ward yesterday morning and had been under constant care all that day and well into the morning.  It took that long for the medications to take their course and stop the labor from progressing.  That struggle had come at the cost of my wife suffering the worst case of nausea that she had ever experienced – not to mention the back pains that were actually signs of the contractions that her body was initiating as it tried to force our 24-week fetus into a world that it was not prepared for.

This morning we were reminded just how unprepared our unborn child is for this world by a visit from a doctor who specializes in premature births.  The baby that is impatiently trying to escape my wife’s womb is somewhere between 1 and 2 lbs.  She is about half the length of a full term baby and she has yet to build the fatty layer below the derma that will give her the warm pink tone that she would have if she were to be the full 40 weeks of gestation.  The biggest concern though is that her lungs are not fully developed.  She will not be able to breathe on her own if she comes today.  We are given an option to be part of a clinical study in which they would inject my wife with surfactant made from calve lungs and other steroids that would increase the odds of our daughter surviving if she were to come today.  We had agreed to the study and my wife had been given the additional medicines.

But these were measures to deal with the possibility of a premature birth not the birth of a child with myelomeningocele dysplasia (severe form of spina bifida).  Our daughter’s spinal column was open to the amniotic fluid that she was surrounded by within the sterile environment of the amniotic sac.  My wife had lost the mucus plug that keeps the cervix sealed during pregnancy and the bag that was the only defense against an infection that could kill our daughter was already beginning to ‘fall’ outside the uterus through the open cervix.  The doctors had made it clear that natural birth would be a death sentence for a fetus that was facing such a premature birth with these medical considerations.  If my wife progressed any further with her labor, she would have to be rushed to the OR for an emergency C-section.

We are still waiting on a visit from a neurosurgeon who is a specialist at the Childrens Hospital that is about 30 minutes down the road.  We are anxious for this visit because he will have to perform surgery on our daughter the day that she is born to close the opening on her back and to treat the hydrocephalus if she is to survive beyond her first day of life.

We haven’t slept or ate.  My wife has spent the night vomiting and I spent the night catching it in a pan.  I am still in the work clothes that I had meant to wear to work the day before. All of this information is coming at us so fast and we are making decisions that we don’t fully understand.

Can I share something with you?

I am scared. I don’t know what is going to happen or how things are going to turn out.  I don’t know if our baby is going to make it.  I don’t know how all of this is going to impact our young marriage.  I don’t know how we will financially make it.

Everything is outside of my control.  Everything just seems to be happening to us.

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As I am trying to recall the events from 18 years ago, I am trying keep a balance of detail and length of post so that I can bring some understanding of what my wife and I faced without completely boring the reader.  January 20th was a day of discovering how big the hill was that we faced in trying to give our daughter the best chance at living.  Every time we turned around it seemed we would get more bad news.  My wife would have contractions from time-to-time during that day and each time we would brace for ‘is-this-it?’  Her nausea would continue but would stabilize so that she wasn’t so sick by the end of the day.

I will continue with this series tomorrow.