Sunday, April 20, 2014

If By Chance We Should Ever Meet Again.....

This is a continuation of "In The Blink Of An Eye" 

As I rode in the front of this sky blue ambulance, I cried. The tears fell continously. How did I go from trying to find the right shoes, the perfect shirt, the best shade of aqua trying to coordinate her Easter outfit about 4 hours prior, to riding in the front of an ambulance praying for the life of my child?

My legs were cramped under her portable suction machine and her diaper bag; both filled with extra supplies that the hospital may have needed.  We pulled up to the hospital and I could see my family waiting for our arrival. They greeted us like a medical team ready for action. I hopped out and moved to the side. I felt the stare, that awkward feeling you get when you feel someone is looking at you. A great big panda bear with a smile gazed at me. We locked eyes, his smile met my frown. Panda One, the ambulance for kids.  This panda is supposed to be soothing I suppose, but I'm aching.  Hurting because on the inside of this ambulance that is adorned with this large smiling Panda is my child and this was not a situation that warranted a smile.

Mylah emerged from the ambulance, strapped to the gurney and she was briskly wheeled into the hospital emergency doors, up the elevator, 4th floor, ICU.

We were welcomed by a team of nurses, who were waiting on her arrival.  They moved quickly about the room. Nurses, Respiratory Therapists, more nurses. They moved rapidly. The transfer was complete. We settled into the room, unsure how long this stay would be. Hopefully short, but I began to mentally prepare for hospital living again.

As I sat there hoping, praying for my child I saw her. A face that looked so familiar. I couldn't be sure it was her.  Memories began to play in my head. I went back, back to where we started. Back to where this journey began.

I stared at her from across the room and tried to convince myself that it wasn't her, but I knew it was. I never forget a face, and I could never forget the face of someone who touched my life in such a profound way. She walked in and out the room a few times, before I gathered up the courage to attempt to confirm what I suspected.

"Excuse me, did you use to work at (insert name of my birthing hospital)?"
"Yes" she replied as her eyes gave me a confused look.
My arm extended towards Mylah, as she lie in the hospital bed. "You gave her a bath when she was born"
Her eyes now wide open, her mouth formed a look of shock. She darted to Mylah's bedside and grabbed her small foot, she looked at the finely printed name on the tag around her ankle.

"Oh my goodness, It's her!" she yelled, almost as if she quickly forgot we were in the ICU.

I blogged in the days after Mylah's birth and about my experience. Specifically regarding the nurse who bathed Mylah, and afterwards who expressed that it was a honor to participate in her life. That encounter though brief, left a mark on my world. I always wondered what happened to all of the nurses who participated in Mylah's birth specifically the one who bathed her. I later found out her name was Lori, but had no way of contacting her about how much her words impacted me that day. After she expressed such thoughtful words to me I never saw her again; until now.

She told me that she wondered about us since Mylah's birth and always wanted to know how Mylah was doing. She remembered that I created the blog, but couldn't find it because she was unsure about the spelling of Mylah's name. She contacted her old coworkers, but none could provide her with the information she needed. Who knew a seizure would bring us back together.

In that moment, at a time when my heart was so sad for Mylah's current condition, it was also happy. I would get the opportunity to tell Lori how much I appreciated what she did and said that day.  I wanted her to know that I never forgot her expression of gratitude. There were many things that happened that day and some of the memories I wanted to file in the archive section of my brain, but every now & then her words would play back in my mind and bring a smile to my face.

As I expressed my gratitude that I held for over 2 years, my tears began to fall from  and I could see her emotions gather in the wells of her eyes.  She remembered everything. The negativity, doubt, the judgement.
"She is the reason I left" she said. "Remember the doctors said she wasn't supposed to live, she wasn't gonna make it" It was a statement she definitely didn't have to remind me about. I had heard it from the beginning. It was just nice to know that not every person in that room on March 24, 2012 felt the same way as those doctors. I was glad that she was able to see that she deserved to be elsewhere.

She was happy to know that Mylah had been doing so well up unto that present moment. We embraced and she walked out and she took with her the happiness that had distracted me for the moment.

Now I was forced back into the present to deal with the issue at hand. Trying to figure out what was wrong with my daughter. Why suddenly had things gone so wrong? I couldn't be too sure, but Mylah was as stable as she could be for the moment. Intermittent seizures ran through her body, just like the ones she had before, not like the one that brought us here. I rested in a chair on the other side of her room and watched as they placed her on a ventilator, just like the ventilator that was scheduled to be picked up from our home on the upcoming Tuesday.

She had made so much progress, we couldn't go back to where we had come from. I hoped that we wouldn't be there for long.

Thursday, April 10, 2014

In The Blink Of An Eye...

things could change. Literally.  Everything was fine on Saturday; we shopped, she played, we shopped some more, she ate, she napped, & she played again.  I noticed she was a little hot, but she's always sweating, it's what she does. I laid her in her crib, covered her bare legs & feet, so she wouldn't be cold and off to sleep she went.

There is nothing like being startled from your sleep by the sound of someone calling your name in a concerning tone.  I jumped up, because that's what I've learned to do and what I saw next changed the course of my days to come.  I felt like my feet were stuck to the floor, I couldn't move fast enough, my mind went blank, I couldn't remember numbers or names, my hands shook. "What's the number to 911" literally I asked the question because I didn't know, couldn't recall.

Her face was blue, grey; eyes fixated towards her eyelids, arms extended straight, and her body rocked... Back and forth. A slow, rhythmic motion. I knew something wasn't right. "Feel her chest" my sister said, I placed my hand on the heart. That strong little heart that was fixed almost 2 years ago and it felt as though it was about to explode out of her chest. The beating rate wasn't normal It was too fast. Heart attack?  I couldn't be sure but I knew she needed help.

Toya began to bag her, I pulled out my cell but I knew that might delay help. I searched for the house phone (for this very reason is why I won't cut it off) it wasn't on the charger. Suddenly, Juwan handed me the phone. He'd already dialed 911, the connection was quick, the operator understood what I needed. I tried to remain calm, so that I wouldn't give out the wrong info. The training I got from the vent team at U of M kicked in. I remembered, "tell them you have a trach baby, it's critical information". Toya continued to bag, giving out directions the whole time. Juwan and I ran back and forth through the house trying to find what was needed. She was the calming voice I needed. I followed her instructions, when my body didn't do what my brain was thinking.

I called my parents, put on some clothes, gathered emergency supplies and waited for help to come. They arrived, Mylah wasn't any better. One held her head, the other her lower half.  They walked in unison, sideways. They guided her frail, seizing body out the front door. Loaded her onto the stretcher,  into the back of the EMS. Under bright lights there she was seizing, biting down, eyes wide open.  In the back of the EMS I began to pray. I asked God to allow her more time.

Mylah has had seizures before but NEVER like this.

She arrived at the hospital, was given some medication, it didn't help. Another dose, still nothing, the 3rd time was a charm.  I stood in the corner of that room and watched them as they worked on my 14lb. child. I tried to give as much information as they needed. Hoping for answers. She had a fever of 106, her heart rate got above 200.

The nurses in the room noticed the little pink painted toenails. I painted them for her 2nd birthday pictures. The pictures I edited but hadn't printed or mailed. I kept telling myself that I'll get to it tomorrow, and I stood in that emergency room as they worked on my baby wondering what if tomorrow doesn't come?  I felt bad for putting it off.

She stopped seizing, I answered lots of questions. Some of them 3 or 4 times. The nurse said they cut her onesie off and asked if I wanted it. "No", I replied. I wanted no memory of this moment. I already had the image of her helpless seizing body in my mind, I didn't need a material reminder.  She needed to be transported to a different hospital.  She was stabilizing, the medicine was helping.

As soon as she was getting ready for transport she started to seize again. More medicine was given. She was loaded into another EMS; one for kids, babies, sick babies that need help and she needed help.

I prayed she would get the help she needed.....

It's been very hard for me to get my thoughts together. It's so much going on and I'm pretty frustrated at times. I just ask that you continue to pray for Mylah. Pray for answers and clarity. Pray for a full recovery. I will continue this tomorrow. Thank you!