Tuesday, March 13, 2007

Part VI -- Surgery

Children with Down syndrome are at a significantly higher risk of cardiac related birth defects. There were no obvious signs that there was anything wrong with her heart, but a pediatric cardiologist would have to evaluate her.

We were told that she would have an echocardiogram that evening and be scheduled for surgery to repair her esophagus the following day.

Things changed. The doctor informed us that they needed to do the surgery today, before consulting with the cardiologist and without knowing if there were any structural defects with her heart. With each breath, her abdomen was distending. She likely wouldn't survive if they waited to do the surgery the next day.

I understood there was no choice. Stranded in the desert and dying of dehydration, one cannot be concerned with the quality of the only water you find. There are priorities and there are immediate needs. But I needed to know what the risks were by doing the surgery before knowing anything conclusive about her heart. The only assurance I got from the neonatologist was that she was not cyanotic.

We met with the surgeon and he explained the procedure to us. He reassured us that no one in the area has performed more of these types of surgeries than he. He told us what he would do and that as a result of the surgery there would be a 100% chance that she'd have reflux. Reflux I could manage. But a cardiac defect? I was not at all worried about the surgery. I prayed her heart was strong. Abby had taken mine the minute she came into this world and now I was frightened for hers.

Slowly, family started to arrive. We hugged. We cried. We had questions. We wanted answers. There were none. We relived each moment over and over again and tortured ourselves with searching for reasons where none existed. We promised support for each other. None of us were alone, but each of us felt as though we were.

A nurse came into the room and told us that the surgery was over and the doctor would meet with us. We hurried into the lounge and waited for the surgeon. Finally, he came in. He told us that the surgery could not have gone any better. At that moment, I realized that I was in fact concerned about the surgery. Of course I was. How could I not be?

The repair would be evaluated in a day or two and if it was sound, we could start feeding her. We made plans for her to be at the hospital a few more days. Maybe a week. But no more than that.

And so we waited. We waited for the cardiologist. Family left and still we waited. We stayed with her in the NICU. I looked at the other children. The other families. What were their stories?

Each of them had one.

No one wanted one.

To be continued.


Tricia said...

I am a Mom from Megan's October '02 board. She posted a link to your blog and I have to tell you that I am finding it undescribably touching. Although we have gotten to share a lot of Abby's story, through Megan, it is so special to see your point of view. You have a wonderful way of writing..it is so honest and so raw. I hope you are finding that it helps you as much as it helps all of us that are lucky enough to read it. You and Megan are both so inspirational to me personally. Your courage and strength and commitment are awesome...You guys rock! :)

amy flege said...

Greg, your writing is so awesome. Megan was the first person i met on line when we came home with mayson. your little abby is such and inspiration to us!!

sprice said...

Hi Greg,

Just popping by to say hi. Found you while I was surfing tonight. We have twin 2-year-old sons, one of whom came to us enhanced with an extra chromosome.
Enjoyed reading about your Abby.


Tammy and Parker said...

I can relate so much to your story. There have been times when Parker has been in the NICU/PICU that I have wondered what the other families' stories were.

I also noticed that a lot of times the parents of sick children don't make eye contact a lot. Those who have children that are doing better feel badly for those who have children who aren't.

Then those who have children who aren't doing well wonder when it will be their child's turn to get moved 'to the floor'.

I tend to be one to reach out regardless. The PICU has to be one of the worst places on earth. Period. Everyone one could use a friend when their child is in the PICU.

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