Missed

 

Eighteen months ago today. I think that's when it all started going really bad. Even before Bridget died, I'd filed a complaint with the hospital about what we believed to be sub-standard care in the NICU. That day her bilirubin started to climb, and phototherapy was started. They put her under three sets of intense lights. They were supposed to have an IV for her, but they didn't-- even when I pointed it out to the nurse. It had been doctor's orders, but I guess they didn't think it was important enough.

That was when Bridget went from being a premature baby who even the doctors and nurses said was acting more like a term baby, to crashing. She lost weight quickly. Her strong suck diminished. She became so weak. They told me she was "just acting her age", but in my heart, I felt there was something more to it.

 

I was so sad watching her. I wanted her to get stronger. I wanted her to get better and come home. I felt awful inside, thinking that maybe if I hadn't been so impatient, if I hadn't gone along with the plan to deliver her early that maybe she wouldn't be there. Where we were hostage to "policy" and "protocol" that seemed only to be making everything worse for her.

 

I felt so powerless then. I felt we were robbed of sacred time together. I tried to reconcile it all once we got her home, and get over those feelings. Tried not to let them get in the way of our lifetime together. I decided it wasn't healthy to focus so much on the negative. It was only ten days, and what is ten days in a lifetime? I talked with the care manager, Debra, about these things. She gave the number for Michele and encouraged me to share my experience, in hopes it would prevent another family from these same feelings. I wondered if it was a worthwhile use of my time. Afterall, we were home and that was in our past. But Bridget just still seemed to never have fully recovered from being under those lights without the IV. She still had sores on her feet from the bands that the nurses neglected to notice were rubbing into her fragile skin. They had disregarded our instructions for keeping Bridget from getting Sweat-ease (a sugary syrup given to supposedly soothe infants in the hospital, which there had been no medical need to give to her). There was just so much that went wrong. I took the time to call with my complaints.

I didn't see Bridget's crisis event coming. Sure, I was panicked about how similarly her lethargy seemed to be to Dominic's. Yes, I was very worried about her shallow breathing, which sometimes I wondered if she was even breathing at all because it was so light. I was very concerned, and yet I didn't see that coming.

All the questions were asked afterward. What happened to cause the crisis event? The tests were all run, the autopsy performed. And in my heart, that day, eighteen months ago today, kept running through my head. When they started all the lights, but no IV. And I was concerned about if she was getting too dehydrated. I just wish they had listened to me! How could they have missed it?

And what little the results of all those tests revealed, it seems very likely that that day there were critical oversights. That perhaps if they'd done what the doctor had ordered in that NICU that day, that mabye Bridget would still be alive. Or maybe have lived longer. Perhaps she still would have someday fallen to the still unknown killer, but perhaps it all wouldn't have been set into action so early.

They think there is an underlying mitochondrial disorder in our family. They think that's what took Dominic, too. And with this, a child can seem to be developing normally overall. But a trigger can change all that. A trigger, such as dehydration from being left under intense phototherapy without enough fluids.

"Bruce H. Cohen, MD, a pediatric neurologist specializing in mitochondrial disorders at the Cleveland Clinic, said the general triggers of deterioration usually include viral infections, dehydration, starvation, and fever."
(emphasis added) http://forum.autisticliving.com/showthread.php?t=1147

 

How could they have missed it? And how so much Bridget is missed now.

Circles

So much circling through my mind. How do I grasp on a thought and begin?



The picture of Dominic was taken that morning before we left. And the one of Bridget, she is wearing the same thing she was wearing on that morning, the exact same day six years later. I don't know why their little outfits are on my mind so much. Why I think about the things they had with them that day, and how their little onesies were cut off of them to try to save their lives.

Love goes around in a circle
Friendship begun doesn't end
There's love to be found
when you're sitting around
in a circle,
circle of friends.

And so we ended every week at the Grief Support group we took our children to after Dominic died. I don't know why it's on my mind so much. Perhaps it circulates through my thoughts as I think about the friends I had before Bridget died. The ones we'd had before Dominic died. How our circle of friends contracted when Dominic died, and then seemed to shrink, coming to a point, then to nothing, after Bridget died.


I seem to have so much to say. So much running through my mind. Never getting to a point. I try to express it. Articulate it. It doesn't ever seem to come out right anymore. Things don't seem to turn out right anymore.

He drew a circle that shut me out-
Heretic , rebel, a thing to flout.
But love and I had the wit to win:
We drew a circle and took him In!
~Edwin Markham ("Outwitted")

Turning out. Shutting out. Shutting down.

So much circling through my mind. How do I grasp on a thought and begin? And if I can't begin, will there be an end? Is that the answer: to end this all it can never begin. And once begun, it can never end. And I wish I could go back full circle, to wherever that beginning was. To bring it to an end.