Sleep Study. Take I.

First, HAPPY 19 WEEKS MISS ADELAIDE!!!!
a picture from our sleep study intake visit:

5am in August always feels like summer camp to me. It’s humid and sticky, but the air is cold on my skin. Something in the wind smells like a vague cleaning product. My stomach growls with hunger, but I’m too tired to get food. Getting up irrationally early during the summer seems to defeat the purpose of summer break; however, I’m 27, not 17. My summer break days are over.

Dave and I set out clothes out the night before. We crept out of the bedroom at 4am, like high school kids trying to not wake our parents. Only we are the parents, trying to not wake the baby! We delicately danced around the house, Dave making coffee, and me sitting in the dining room to pump. We bumped into each other in the most ungracious ways while navigating the bathroom without contacts. We gathered up every toy Addie likes, a change of clothes, and some milk for our sleeping girl and loaded everything into the car. Then I gently lifted Addie from the Rock n’ Play, next to our bed, and carried her to my Escape. What a non-fitting name.

Addie’s sleep study intake appointment was an hour and a half drive, each way. We had to take 2 cars so Dave could go right to work after the appointment, in the complete opposite direction from home. Tucking Addie into her seat with Snugglepuppy, I climbed into my car to follow Dave, gently reminding him that we are not driving on a racetrack.

Enjoying the silence of the morning, I rolled into the closest gas station (newly converted from a BP to a Getty), and handed over the last of my life savings into my tank. We then began our journey to Waltham.

I looked at her in my rear view mirror as we neared the hospital. With a half hour drive still ahead, I realized she was awake, and looking around- not unhappy, just checking everything out! I remembered childhood memories of waking up in the car, early in the morning and late at night, coming from and going on vacations. Such beautiful memories of pretending to be asleep as my Dad carried me into a strange house that smelled of clean sheets and the ocean- so excited to wake up to the beach and boardwalk of Ocean City, New Jersey. As I stared into my mirror, I wished this was a memory for Addie. I want her to wake up in her pajamas on the way to the beach, not to an early appointment, but I realize, she may just have to have memories of both.

Oddly, Hasboro Children’s Hospital does not do sleep studies for children under the age of one, so we were heading to the Waltham branch of Boston’s Children’s Hospital. I was nervous to be traveling so far with her, to an unknown doctor, but when we arrived, I was at ease. The directions were great, and the signage was perfect! As we entered the Neurology Department, Dave sat down to give Addie her breakfast (mmmm, milk!) and I headed to the desk to fill out all the paper work. We were promptly called into the exam room and asked a lot of questions. Addie was stripped down to her diaper and the doctor did the usual poke, prod, listen, squeeze, stretch, measure, check with a light and recheck with a light and a stick, squeeze again, roll over, get in the face, play with a light, listen again routine.

“She looks great!” the doctor declared. He stepped out to wait for Dr. Kothare to come into the room. Addie waited patiently with Daddy!

We learned that there are three things that will be checked during Addie’s sleep study, which are more common in children with achondroplasia, and I must admit, sometimes not knowing is much more comforting than knowing.  First, the doctors will check for sleep apnea, where she stops breathing for 10-20 seconds at a time from the weight of her head and other differences in organ sizes (et cetera) from AH children. Second, the doctors will be looking for central sleep apnea, where your brain actually sends the message to your body to stop breathing. Third, tests will be done to determine if Addie is getting good air. This means that the levels of carbon dioxide will be measured to make sure she is holding enough to sustain her.

I did not know the body would ever tell itself to stop breathing. There have been a few nights since our intake appointment that I have picked her up out of her bassinet and held her to me, skin-to-skin, like the first days after she came home. I’ve asked her to promise me to wake up. I’ve shed tears that I couldn’t have stopped for all the money in the world and stars in the sky.

Her actual sleep study is September 3, in downtown Boston, and because they’re only done during the week, I will be there with her alone. It is a lot for a parent who is not doing it alone, to be left alone to do most of the parenting and I am so thankful that Dave was with me when we got her examined… However, I am terrified to go to Boston alone, sleep alone, and watch Addie get hooked up alone. I lean on my husband for support that I don’t even know he gives until he can’t be there. I can’t imagine being a single parent for so many reasons; someone to dry my tears is one of them.

On days where Addie gets shots, when the insurance company calls to deny me again, when I can’t find my keys or forget the safe place I put something but now can’t find- that’s when I miss Dave the most. I know that someday he won’t have to work so much, and he won’t have the two hour commute everyday, but I wish that day was now.

I’m hoping for good results, so I can rest easy (literally)… at least until her next sleep study in a year!

1 Comment

Filed under Achondroplasia

One Response to Sleep Study. Take I.

  1. If I could go with you, I absolutely would!! I “understand” with the exception of her first check-up, Ive had to take Avery to all of her appointments by myself. (Though none were in Boston, and all were just the standard “Hold your baby will we jab her with this needle and make her cry” type things.) You’re such a rock star momma, and Addie is a superstar baby, you guys will BOTH get through this, and then…..slllleeeeeeeppppp! ;)

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