Sleep, my angel

Well that six months went by fast! All of a sudden we were back at Boston Children’s Hospital and getting our second sleep study done… where did the time go? We were supposed to be in on Friday night and out Saturday morning, but there were 6 phone calls and multiple times and dates that moved us to Saturday at 7:30pm to Sunday at 6:30am.

I was a bit more prepared for what would happen than I was last time. Read THIS if you’re wondering how it went the first time around! Well, more prepared for Addie and less so for me. I had not had dinner when we pulled out of the driveway, and I could already tell I wouldn’t last the night without food. When we got to our room at the hospital (after a seamless drive to Boston: weekend sleep study perk!), our AMAZING nurse, Kate, asked us what she could get for us. As I waved my hand and said, “Oh nothing,” she continued, “I can make you some soup if you didn’t eat yet…” My eyes lit up. She made me soup! And English muffins with butter and jam. And ginger ale.

After I gorged myself on low sodium (NOT recommended) soup and bread, it was onto wrapping up my little girl into a hooked-up mummy. The nurse we had was wonderful and told me I could hold Addie and feed her while she was getting hooked up to the sensors. If you’ve never had a sleep study before, the head is measured numerous times and marked with red. Then sensors are placed on those spots with a type of glue. Then the head is wrapped so the sensors stay in place and all the wires stemming from them are plugged into one machine that reads them all night. Then, there is a mic “glued” onto the chest, right under the chin (to record snores) and tapped there for security. There are sensors placed on the legs, ribs, chest and toe- and all the leads are pulled though the top and plugged into the same sensor box as the head leads. Over-top the pajamas goes two belts that also get plugged in and up to the box. There is a nasal cannula put in place, as well. We were SUPER lucky that our nurse was so awesome- she waited until Addie was asleep and she had gotten good information before placing it in. Addie barely woke while she did, and easily fell back to sleep without comforting. Previously, two nurses got Addie into all this gear and she was hysterical. This time around it was much more laid back and pleasant.

After she was in her gear, we did our usual routine then off to sleep! We began with tooth brushing (she doesn’t spit yet) and then we read our usual night night book. We said our prayers and curled up with snuggle puppy. It took a bit of loving and about two minutes of cuddles and she was off to sleep. She woke up a few times during the night, but she didn’t need much help to get back to sleep- just a back pat or hand to hold or replacement of a lost bink. She was able to sleep on her belly for a while (which is how she prefers to be), and then the nurse gently rolled her to her back, where she stayed until the next morning!

I was SO happy that I had my tablet with me- I was able to link up to the WiFi and watch (really bad) movies on Netflix. With my headphones on, I snuggled into a really restless sleep. I know I will never get any sleep myself during a study, but it’s always hard to actually go through- constant door openings, trying to not wake the baby while getting ready for bed, having to pee and not wanting to flush because of the noise, that midnight snack you can’t have because you didn’t bring, pumping without showing anything just in case you’re too close to the camera or someone comes in… it’s a hard night for the parent, too!

In truth, the sleep study is hard enough, but add to the mess the hair the next day, and you’ve got a real mess on your hands. My tips HERE are from last study, but this time, our nurse (AWESOME NURSE!) took her time and helped me wash Addie’s hair until it was almost perfectly clean- at least all the glue and red pen were out!

As a bonus, the nurse gave us some goodies to go home with… including a spray that would help take the residual stickiness out, wipes for the tape and glue left on Addie’s skin, and 2 packets of Aveeno Oatmeal Bath to soothe after the wipes. I could not have asked for a better experience than this one if you have to have a sleep study done.

Because Addie’s hair was wet and the hat she came to the hospital wearing was a hand-knit owl, our (once again AMAZING) nurse gave us a really cute princess one- and it was big enough to fit Addie’s head 🙂

Silly, but true, dirty hair is ALWAYS easier to put up than clean hair- this is true even for babies. After she got home, we took a nap and got into clean clothes- then it was time to experiment! Because her hair had been washed so much, I figured I would wait a day to try and clean it again and made Addie’s first pigtails instead!

If I could give you ONE piece of information and that’s all you take away from this: bring as much of your routine with you as possible. Addie was uncomfortable and annoyed, but with everything as similar to at home as possible, she acclimated very well to what had to be different due to our circumstances. For us that meant mamas milk, tooth brushing, reading Goodnight Moon, saying our prayers and getting Snuggle Puppy.

And that’s how you do a sleep study!

We are hoping for less sleep apnea occurrences, both central and obstructive, but when she had her tubes put in (ears), she showed signs when she was under. Not a good sign. While apnea is common among children and adults with achondroplasia, I am hoping that she will grow out of it before it gets worse. We head out to Waltham to see the doc in a few weeks for the results. I’ll keep you posted! Thanks for taking this journey with us!