Facing Fears.

David and I were scared to death in thinking of what it would be like the first time Adalyn got sick.

This week we experienced it. 

On Monday night....Adalyn started having tons of seizures. Normally, she does have at least 10 a day.....we have been trying to get them under control. However, that night....she kept going through these cycles...she would have a few seizures and then up to 10 spasms in a row. She would scream, then out of exhaustion...fall asleep....only to be awoke a half hour later to go through the same cycle.

It was awful. I simply just wanted to sob with her.

During the day on Tuesday...things were a little better. But by the evening, it got bad again.

We called the on call neurologist up at Primary's....feeling frantic and at a loss of what to do. How do you stop your child from suffering, when there isn't a simple solution?

The doctor told us she felt like there was an underlying trigger that was causing these cycles. Something like a virus...  Our options were to wait it out until the morning and have her checked the next day or go into the ER.

WHAM!

Here it was. Our fear. Staring us right in the face. She had been extra mucusy and irritable. There was no doubt the neurologist was right....she was sick. We were worried it had gone to her lungs...

We decided to wait it out. Our home health nurse came the next day and recommended we go to her Pediatrician. Our doctor listened to her lungs and checked her. The whole time I felt like biting my nails off. 

A respiratory virus.....he had said. He had Adalyn get a chest X-ray, just to make sure that it wasn't bacterial. As a tender mercy, it wasn't. He wanted to see us each day for the rest of the week to make sure she got over the peak of it.

However, there was nothing we could do about the seizures and spasms...except wait out the virus. Unfortunately, when the body is sick, it lowers the threshold for seizures. Making it even easier for her to go into them.

By Friday, Adalyn was still about the same. Her oxygen needs had gone up. Normally, she is on 1/16th of a liter, which isn't very much. Her breathing had become very labored, she sounded terrible.  When we went into the doctor's office that day, he decided she should be admitted into the hospital. 

As he said those words.....my heart sank. I immediately flashed back to our time in the NICU and felt over loaded with panic. "We can't watch her go through those things again..." was all that raced through my mind.

We came home before taking her to be admitted. We knelt with our family in prayer....and as part of his prayer...David prayed that this "Wouldn't be the worst experience ever." We all chuckled at the wording of that...but secretly I felt the same.

At the hospital, once again she was hooked up to extra monitors. She was suctioned, and then put on 2 liters of oxygen. The respiratory therapist told us to expect to be there 2-3 days. Then it was the waiting game. Adalyn slept the entire afternoon....very deeply. It was obvious how exhausted she was. By that night, her doctor came to check up on her.

As another tender mercy, he felt she could go home....on the 2 liters of oxygen, and continuing to follow up with them each day.

We were so grateful that night.....knowing our prayers had been answered. Being home is yet again a wave of emotions. Sometimes....it is so hard to know if we are doing the right thing. Especially during the moments when Adalyn's breathing sounds so terrible....and looks so labored.

These days....she hardly has any good awake time. She is either sleeping.....or awake and feeling fussy. It is during that awake time when she again has seizures. Our hearts can't help but wonder if this is how things will be for her..

Again and again we feel we are backed up against the wall....staring down our deepest fears. There are no words to describe how much it can hurt.

I was thinking about my fears today. At times, it feels like this crushing weight...that I don't always feel able to bear. I think it is easy to let our fears consume us. To give into it's heavy weight. In those moments that we give in, our fears lead us to doubting our confidence in God.

I have realized that we can't always run away from our fears. Sometimes we have to face them directly, as much as it may hurt. I have resigned to knowing I cannot see the end of this tunnel. I have to continually put my trust in Him. It is something I have to daily. I have to keep turning my fears over to Him.

It is then we somehow find the courage to face our fears.

Our neurologist called us on Saturday to see how Adalyn was doing with her seizures and spasms. She increased again one of her medicines. On Monday, if they are still uncontrolled, we will significantly increase the medicine once more. If that doesn't work......we will have to give Adalyn a round of steroids. 

We are praying with all the energy of our hearts we can avoid the steroids. For an infant, the side effects can be heavy. Already....the medicine we are increasing makes her incredibly sleepy...Giving us only 1-2 hours of awake time a day with her.

We again ask for your prayers for our sweet little girl. She is a fighter and has over come so much. She reminds us each day that there is a God. That He does perform miracles in our lives.

I have listened to this song at least a dozen times the past hour. It is beautiful!