Chapter 5 ~ A New Normal...

Over the course if the next several weeks, I will be publishing my story, as wife, mother, sister and daughter. This is the evolution of how a little girl can change the course of her mother's story, can change the course of her heart. If your new to this blog, please begin here. 

Happy Girl - Nov. 1992

Chapter 5 ~ A “New” Normal

Sleep came in 10 to 20 minute naps through the remainder of the night, interrupted by nurses and doctors, poking and prodding, alarms going off as Courtney would seize again and again. They began administering Phenobarbital to control them. Courtney looks dazed and confused, her eyes are glassy. They are giving her extra fluids through her IV. It was hard to hold her being connected to all the machines.

I am pumping every three hours. She was not very interested in the bottle at all. The pediatricians reassured me that she was getting plenty of nutrition through the IV, so I was not to worry.

Yea, right. Who were they kidding? Not worry. 

I had had a headache for the last several hours and felt nauseous. I didn’t know how much longer I could keep it together. I couldn’t think, I couldn’t pray. God didn't want to hear from me anyway. He had already made His feelings clear. I was having a hard time concentrating on what the doctors were saying.

After morning rounds, they moved us to the regular peadiatric floor. I was told we would be there for a few days, while they tried to figure out why my five week old daughter is having grand-mal seizures. So far all the tests are coming back normal.

No meningitis.

No brain tumor.

No Infantile Spasms

No intestinal issues.

No flu.

It would be another 24 hours to get back the blood and enzyme results.

We settled into our new room. Jerry called to let me know he is on his way back to Maine. He would be handling the move on his own. My stress level rose by the second. Courtney was sleeping peacefully after another dose of Phenbarbital.

My mother arrived with Jonathan. He ran to me with a huge smile on his face.

“Mama! Mama! I misted you!”

“I missed you to buddy.’ I said as I squeezed him tight to me. I didn’t want to let him go. He smelled like Johnson and Johnson baby shampoo.

He wriggled out of my arms and ran to Courtney’s bed, firing off a million questions.

"What's that? What's this? Why Mama?"

My mother put down a change of clothes she had brought me on the side table and drew me into her arms. I resisted at first because I was afraid that if I started to cry, I would not be able to stop. My mother wouldn’t let me go.

The dam broke. I wept, my body rocking with sobs.

She kept telling me that everything was going to be OK. Jonathan came over and wrapped himself around my legs, patting me trying to comfort as only a three year old can. I had no idea what was going to happen.

All I knew was that I didn’t want my daughter to die.

The next three days crawled by. Jonathan stayed with me in the hospital during the day. With Jerry in Maine and both my parents had to work.  They didn’t have a lot of time avaliable to take off with Dad trying to work in between chemo treatments.

Jonathan would run his trucks and trains up and down any flat surface he could find. He napped in the crib next to Courtney after "reading" her his favorite books.

I would rock Court for hours while Jonathan watched cartoons or one Disney movie after another in the afternoons in between tests.  I don’t remember much else other than the sound of the alarms that went off everytime Courtney would have a seizure which was quite often.

I remember a young med student who came to my room around midnight one night after night rounds. He wanted to take a history and was so determined to figure out what was wrong with my daughter. I sat with him for two hours that night answering any question he asked. It would be the first of many such conferences. I just appreciated that someone cared enough to dig deeper.

After four days the doctors were baffled.

I was beyond frustrated and exhausted to the bone. Courtney was having difficulty adjusting to the anti-seizure meds. Not only that but she refused the breast. The enzyme test had come back negative and I was allowed to nurse again. But Court would have nothing to do with it. I guess it was for the best. My milk supply was dwindling rapidly due to the extreme stress.

One more loss.  The last time my daughter nursed, turned into an absolute nightmare for both of us.

They had no answers for me. Every sentence ended with "We just don't know why this is happening."

Your freaking doctors for God's sake. Figure it out dammit. It's your job.

She still had seizures breaking through.

Jonathan wouldn’t leave my side and my husband was five states away dealing with a move on his own for the first time in his life. I prayed that he remembered to empty the fridge and trash cans before they sealed them or we would have a nasty gift on our hands in another week. There were so many details he would not even begin to think about. That was my job and I was 320 miles away. We still had to find a rental in Maryland before the moving truck arrived. It was all too much.

I was lost. God and I were not speaking. I could physically feel his disappointment in me. I was so pissed He would take it out on my daughter. My guilt and pride were like a wall of iron around my heart. I couldn't hear Him at all.

On day five I reached my breaking point. I felt nothing. I was numb. NO tears were left. My heart felt like the Sahara...empty and desolate.

They discharged us that Friday with follow-up appointments in neurology the next week. We had no answers. ALL the tests came back normal.

Normal?? No one understood that. We had the senior staff working with us. The best the Navy had to offer.

I went home with my Mom and Dad terrified that I would not be able to take care of Courtney. You had to watch her 24/7 so she didn't aspirate (where she would swallow her own saliva while she couldn't protect her airway sending it straight to her lungs) during a seizure. That could lead to pneumonia which could take her life. One more thing to worry about.

Jerry arrived the next day and we lucked out and found an apartment in Gaithersburg. We had four days before the moving truck arrived.  The next several weeks flew by as we unpacked, went to doctor’s appointment after doctor’s appointment where they ran more and more tests.

Courtney began growing like a weed. She had gotten her appetite back with a regular routine. She ate well and seemed to be adjusting fairly well to the new meds, becoming more alert as time went by. However the seizures didn’t stop and they were terrifying to watch. She would sleep for hours afterward.

This was our “new normal” and there was nothing normal about it.

Friends called and sent cards and flowers. My family stepped in and helped with basic chores around the apartment. The more people that helped the more alone I felt. I couldn't take care of my own family anymore.

This was not what I signed up for, not at all. I was getting angrier by the day.

What had I done to deserve this? 

 I shook my head. All the guilt rising up...I knew the answer.

Be mad at me God...Court didn't do anything. Leave her the hell alone. 

**if you would like to continue here...thank you**

Copyright 2011 - Mary E. Lenaburg

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