No Matter What

The wand had just left my belly. I heard, "I'm so sorry."

It had been five hours since Emmerson had been born. Three hours prior to the I'm so sorry,  I had seen her sister move around and I saw that heart beating.

Now, I had heard, "I'm so sorry."

I didn't want to look Dr. D in the eyes. I don't think I could have taken any more of those looks that day.

Dr. D was standing on my left side. Her resident was on my right with the wand in her hand. The screen was placed at my eye level on my right side.

"I'm so sorry."

I ever so slowly turned my head to the left and ever so slowly lifted my right hand and pointed at the screen, "But . . . her heart . . . it's beating . . . I saw it." Those few words, took forever for me to speak.

Dr. D had the resident place the wand back on my belly.

"No, honey. That's your heart beating."

I remember thinking in confusion, "what is my heart doing there?" It's down there, where my babies were, beating for them. Does it not know?

And how could my heart still possibly be beating when it had taken the worst kind of beating?

She squeezed my hand. I tried to squeeze back but that medication had me too weak.

I swear there were tears in her eyes.

Five hours before, she had been in the room when I gave birth to Emmerson. She lifted her up and placed her on my chest. She heard me say, "Hi, there baby girl!"

I performed that very long task of turning my head back in her direction.

With dry eyes, "It's okay. They belong together. It's okay. They are all they have ever known. They belong together."

The screen was black. They left my room. My room was black.

My world was black.

Two days before, after all the testing, while in that conference room when we heard, Twin-Twin Transfusion Syndrome, Stage 3C, I asked a question.

After the interventions we could take, the survival rates, the risk of brain bleeds, strokes, cerebral palsy, mental retardation, risk of death after delivery, after all those were discussed, I asked what I most wanted to know.

"What will the age of viability be for my girls?"

I needed to know. I needed to know so we could discuss when we let a NICU team in the delivery room.

My husband and I had discussed this at length the day we learned the pregnancy was no longer going smoothly.

I had worked many hours next to micro-premies. I knew parents fought no-matter-what. I can't fault them for that and I am not judging them for that either. A parent's love is unique . . . it is a parent's love. I had seen a lot though.

I didn't want to be a no-matter-what parent. I didn't want my no-matter-what to be because I didn't know how to let go. I didn't want to be a no-matter-what because I didn't want my babies to fight unnecessarily.

It's not something most women think about when they are expecting life.

And yet here I was.

I was a mother. I was a nurse.

A week before when I had talked with Dr. C, one of the Neonatologists I used to work with, I had asked him, "If I make it to 24-26 weeks, what would you do? If these were your babies, would you let NICU in the delivery room?"

*I know 24-26 weeks isn't usually a death sentence for a singleton or even twins, but we were dealing with complications and a disease process on top of that.*

He was silent. For a long time. I pleaded with him. I know doctors hate being asked that question and if a patient asks them, they won't answer it.

"Please! I'm not asking you as a medical professional, I'm asking you as a friend. What would you do?"

Dr. C and his wife's first born lived for about 11 days after being born prematurely.

"He lived for eleven days and every day was a struggle. I watched him struggle everyday. I saw painful procedures performed. If I had to do it all over again, I wouldn't have let NICU in the room. I wouldn't have put him through that hell."

I didn't want to unnecessarily push a life that was never meant to be lived this side of heaven.

I didn't want my babies to struggle . . . to be in pain.

So, I asked. That was the one piece of information I needed to know the most.

Dr. L, on that Tuesday after all the testing, said, "I wouldn't consider age of viability for your girls until 26 weeks and even then, Twin B (Vivienne) will look like a 23 weeker. Neither one of them have had any strokes or brain bleeds yet but that is still a risk. If you deliver at 26 weeks, Twin B will be at an increased risk. Even if you make it to 26 weeks, the odds would be stacked against Twin B. She might not even survive the delivery. We really want you to make it to 32 weeks. If you can make it that far, and I think you can with the medication and the surgery, you will give your girls the best fighting chance."

After Emmerson was born, they increased the Magnesium Sulfate yet again, hoping that I could hold on to Vivienne for a few more weeks.

"Please God, don't give me a few more weeks just to put me in a position where I have to face an even more difficult decision. Please God, don't put that on me."

I am their mother. I am not their God.

I didn't want to get those lines tangled up. I was not the one that breathed them into existence. I didn't want to be the one that decided how much to do to make them live.

Such fuzzy lines.

But I did do everything I could have done to treat that disease. I took the medication, I had the surgery, I was going to eat lying down because that is what would have been best for them. I was going to do what was going to be best for them while they were still alive. While they were still kicking and moving below my heart. I was making decisions to treat the illness that threatened them. The illness that was treatable and side effects reversible.

But I didn't want the decision, once they were born, of how far and how long we let medicine give the false illusion of life. I don't think I could have beared the weight of those decisions. Just like I couldn't and wouldn't have chosen which one to terminate to give the other the best fighting chance, I couldn't and I wouldn't have been able to know where to start and where to stop. That's why, when it is all said and done, I didn't want the no-matter-what placed in my lap. Because I know me and I know I would have never known when to stop. When to let go.

In the darkness that overwhelms me at times, I have a profound peace in knowing that my girls never knew pain. They never knew struggle. All they knew were each other and love. They knew love. And they felt love.

They knew nothing but love and to me . . . that means everything.





Stephanie