The mystery of sleep has fascinated the human race for centuries. We are now only tapping the surface of what goes on during our precious slumber. Spending a night with Ella during her sleep study proved to be a "wakening" experience.
We arrived at the sleep center at Central DuPage Hospital shortly before 7:00 pm. We were escorted to our room and immediately Ella took to her surroundings. The technician who was to conduct the sleep study provided us with everything we would need to help Ella be as comfortable as possible. Through every step of the process she explained what she was doing and why she was doing it in a calm, clear, reassuring manner.
I held Ella close to me on my lap on the large bed while her favorite video, "Sesame Street Sing Along" (dubbed "La La La" by Ella) was playing on the room tv. Our technician began the process of "hooking" her up.
Wires were placed in various places on her body; legs, torso, arms, face, head. Each time a wire was placed an explanation for its placement ensued. I was amazed at what science had learned thus far about sleep as well as how to monitor what is happening within the body during our most restful and vulnerable state.
Ella did not fight the wires. She did not cry. She did not complain. She sat contently in my lap, helped when she could, and talked when she felt she had something to add to our conversation. Her delightful and infectious personality shone through the circumstances that surrounded her.
Upon completion of "wiring" her I placed her gently into the provided crib. She looked up with her soft, gorgeous eyes and extended her petite hand to me~~not saying a word. I took her hand in my fingers. She held a grip on me that was impressive for her. She wasn't going to let the weakness of SMA stop her from holding fast to her daddy.
We said the "Lord's Prayer" as we always do before bed and I began to sing to her. Her favorite bedtime song right now is "Hush Little Baby"...I obliged...several times.
Her eyes fluttered shut after the third round of the lullaby yet she continued to pinch the skin between my thumb and index finger, something she does as a soothing mechanism for herself. I watched her slip into slumber; slowly, methodically.
There was one more sensor that needed to be connected to her abdomen. The CO2 monitor. This allows the technician to see the output of CO2 during sleep. If there is too little CO2 being expelled during sleep the body's cells get excited and wakefulness occurs. The machine wasn't working. A second machine was brought in. Same deal--not working. The technician reverted to her only option and had the CO2 being measured through a tube placed in her nose. The tube in her nose extends down toward her mouth to gather the expelled CO2 as she exhales. The tube gathers the CO2 and sends it to a monitor. Ella, however, sleeps with a pacifier. It blocked the tube from gathering all the CO2...therefore her readings were very low. The technician, however, needed to have a good amount of recorded sleep-time with the CO2 readings. Ours then became the task of removing her pacifier while she was in a deep sleep to get those required readings...timing was of the essence. All night long we worked to catch times when we could remove the pacifier for a long enough period. She was not at all thrilled with that.
Each time she woke, whether she did so on her own or because we were trying to extract the pacifier from her mouth, I would have to soothe her back to sleep. Of course, this meant that she would perform her soothing act of pinching the skin on my hand (between the thumb and index finger). Needless to say, since we had several wake-ups throughout the night, my skin in that area became sore...a small price to pay for our baby girl.
We traveled through the night hours, catching glimpses of sleep in between our wakefulness. Much of the time I found myself reviewing my life; replaying the major events of it, and how they intertwined leading me to this moment...the moment when I would peer into the crib that held our Squishy. And whether she was awake or fast asleep, I took in the beauty of her presence in our lives.
We will find out the results of the sleep study in a week or so. Whatever they may be is what they will be. We will take them for what they are and move forward accordingly.
Her grip was strong that night~~as is her personality, her bravery, and her character.
