Wednesday, November 9, 2011

I Chose Love: Part 1

The doctor pocked and prodded Nichole. His forehead scrunched, and through the stethoscope, he listened intently at Nichole’s belly. He examined the color of her skin and double-checked the daily blood results in a stack of papers. Nichole was only 2 weeks old, and her file was already thicker than anyone else’s in our family.

“I want to do a blood check. “ He finally said.

“She has had her blood checked every day for 2 weeks!” I complained.

“I know, but those blood tests are only checking for 2 billirubin levels, and although the regular is going down, the other one is not. I want to do a full liver scan and a CBC test”


“And I want you to get them done now. I will put a rush on them so we can have the results as soon as possible.”

He noticed the mist in my eyes.

“I don’t want to alarm you, but I can tell there is something wrong with your baby and we are not going to wait and see what happens.”

I liked Dr. Schrodt. I liked him enough to skip the pediatrician and see him instead, our family doctor. When he had walked into the office minutes before, he had looked at me with a smile on his face. “She has Down syndrome, just like your good friend’s daughter. Well lucky darn!” Somehow, that comment had made me laugh. Now, however, he was making me cry.

Nichole slept through the needle piercing her skin, sucking blood from her body. I couldn’t watch. I held her tight and looked away, fighting back more tears. Before we left the lab, I made sure that both, Dr. Schrodt and Dr. Chandra, the pediatric cardiologist, would get these new blood counts.

Once we were home, I paced around our dining room table. The shaggy green carpet reflecting my worry. I was making myself sick. I finally picked up the phone and called the pediatric cardiologist, who acted as a regular pediatrician for all of his cardiac patients as well. I was transferred to his head nurse.

“Ummm, hello” I wasn’t sure what to say. “I just got back from my baby’s 2 week appointment with our general doctor. He seems concerned about my daughter’s billirubin levels.”

“What is your daughter’s name?” She asked impatiently.

“Nichole Stumbo”

There was a pause, then nurse Lynette spoke.

“I have her file right here and she is fine.”

“Could you please double check, our doctor seems concerned about one of the levels.”

“Look honey” she said with what felt like annoyance, “Your baby is fine, I can see that her billirubin levels are coming down. Some moms don’t understand this is normal.”

“Our doctor is concerned. He said that there are 2 levels, and that one of them is not going down as it should. Could you please have doctor Chandra look at those blood tests? And you should also be getting some other blood results soon.” I realized I was not angry at her tone, at the fact that she was patronizing me, or not listening. I was pleading with her. I was begging.

“Sure, I will have him check those.” She said, almost like an afterthought.

“I will call back in a couple of hours.” I said.

I hung up the phone, feeling so small. I had given power to the woman over the phone to make me feel insignificant, to make me feel foolish. I hated those feelings. I didn’t know how to be an advocate for my own child, a child, that for the last 2 weeks, I had wished was not mine…or die.

Later that afternoon, while Ellie and Nichole took a nap, the phone rang.

“Hi Ellen, this is Dr, Schrodt”

He never calls. His nurses call.

“Oh, hi” I mumbled.

“I just got the results back from Nichole’s blood tests. It does appear that my suspicions were right and she has a condition called “biliary atresia.” This is very serious. I have already contacted Mayo clinic.”

“Ummm, what does she have?” I was mumbling, my head spinning, not sure I was processing things.

“Biliary atresia”

“What is that? I asked

“It is a very serious liver condition that needs to be treated. If it is not treated soon, this can be fatal.”

“Ummm, give me a second. “ My thought process was scattered, I could not think straight. “Let me write this down” There was a stack of mail on the dining room table, and I used it to jot things down.

“Listen, call me if you need anything, I will have word to get you on hold and I will talk to you right away.”

“Thanks, I appreciate that.”

We hung up the phone, and I called Andy right away. I was not making much sense. Rather than share with him, I kept telling him all the reasons Dr. Schrodt was wrong. Without letting him talk to me, I told him I needed to call the pediatrician back.

Lynette answered the phone again.

“Has doctor Chandra seen the new results yet?” I asked impatiently.

“Yes he has.” Lynette said, obviously still annoyed with me.

“ The new results, the ones from today, from this morning. You should have gotten them after I talked to you before.” I pleaded.

“Yes, Dr. Chandra has looked at those results and everything is normal!” she insisted.

“Are you sure?” 

“Yes, there is nothing to worry about. Keep feeding your baby and she will be fine” And with that, she hung up the phone.

I did not have the mind to bring up the fact that based on those blood results Nichole seemed to have biliary atresia. I was not thinking straight enough to question if she had even showed those results to Dr. Chandra. Although she belittled me, I wanted her words to be true. But deep down I knew she had not listened to me, and she had lied.

I called Dr. Schrodt back and declared that the pediatrician thought things were fine.

“What is his number?” Dr. Schrodt asked.

“You mean Dr. Chandra’s number” I asked confused.

“Yes, let me call him and talk to him directly. I promise I will call you right back.”

When the phone rang once more, I was standing by the black receiver.

“Hello” I said quickly

“I talked to Dr. Chandra Ellen” Dr. Schrodt said, “And he does agree with me that this looks like biliary atresia. Now you need to get up to Mayo clinic, they are waiting for you.”

Breathe Ellen.

“How long do you think we will be there?” I asked

“I don’t know” he said, “But I would plan on at least a week.”

I struggled to hang up the phone. My hand shaking.

Oh dear Lord. I asked you to take my baby away, and now you are letting me have my way. My baby is going to die.

Guilt and Fear punched me on the face. Knocking me down into the green plush carpet. In a heap, on the floor, I wailed.

Next: I Choose Love: Part 2

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