Mr. Sandman

Last weekend was Will's sleep study to determine if he has sleep apnea, a common occurrence in cleft palate babies, especially those with a Pierre Robin Sequence.

From the moment we found out we had to have this done, I was a nervous wreck. I have been hospitalized many times, but I have never had to watch my children endure any procedures more than the occasion vaccination. The thought of his tiny 5 week old body being probed and measured scared the you-know-what out of me.

Luckily, we were able to schedule it over a weekend and Labor Day was even better because Matt was off and could stay at home with the kids. We wouldn't have to worry about him taking off to take them to school the next morning.

Sunday evening came and we headed to Medical City in Dallas and got admitted. We were taken upstairs to the sleep lab. The room was a very normal looking room with a full size bed (not a hospital bed) and several chairs. The lab tech brought in the crib for Will. We were asked several questions in preparation for the procedure and we had several questions as well, such as:

• Would he be able to sleep on his tummy as he normally does at home? (cleft babies need to sleep on the tummies for gravity to pull their tongue out of the roof of their mouths as not to choke)
• Could we feed him normally with all the nodes and wires on him?
• How long would the test last?

Yes, he could sleep on his tummy/side/back, whichever position he normally sleeps.
Yes, we could feed him normally.
The study had to go on for a minimum of 6 hours once we were hooked up and sleep began.

Matt came with me to get him registered and stayed until he was all hooked up. Then, he went back to stay at home with the kids (my brother came over for the evening while Matt was with me). We got some snuggles in while the tech prepared the wires and monitors.

getting snuggles before his sleep study began

Will was very calm as he began to place the nodes on his face and scalp. There were approximately 8 nodes on his face, 10-15 on his scalp, 1 on his chest and back, and 2 straps around his chest to measure how much his diaphragm expanded. He didn't actually get upset until he put the gauze band around his head to hold everything in place. I was able to quickly settle him with his pacifier. The tech said that the last monitor was a tube placed under his nose to measure his air output and was often the most bothersome to kids. So, we decided to hold off on putting that on until after he finished his bottle and would hopefully be asleep. The study wouldn't actually begin until after he fell asleep and the pulse/oxygen monitor on his foot was hooked up, too.

all the equipment, wires, glue, and tape needed for the study

Daddy keeping Will calm while the tech applies all the nodes/wires

Over 20 wires were used

remaining calm before his bottle

Matt prepared the bottle and said his good-byes. Will fell asleep while eating, so when he was done, I quietly stepped out to get the tech to come in and finish up with the last few monitors. This was when he got really upset. The moment he put the tube under his nose and in his nostrils, he screamed and continued to scream for 20 minutes. I felt so bad for him. At this point, I was wishing that I had fed him AFTER doing this to soothe him, but it was too late for that. I was also wishing Matt was still there. It purely heartbreaking. I was really trying to hold it together for him. Finally, he calmed down and I got him down into the crib. The tech came in to hook all the wires into the wall to begin the study. He then went to check the monitors to make sure they were all registering. He came in and said that one of the straps around his chest was not tight enough, but after seeing that we couldn't get to the velcro to adjust it without waking him, he said that we could hold off on adjusting that one until he was deeper asleep. Thank goodness...I don't think I could have endured seeing him agitated any more.

finally asleep after adding the tube and sensor under his nose

pulse/oxygen monitor on his toe measuring his oxygen saturation

He then slept pretty soundly for about 3 hours. I laid down for a bit, but didn't get much sleep. Every time he moved his head from one side to the next, I would have to move the wires to the other side and off of his face. About 1:15 he woke up and I made his bottle and fed him, he went right back to sleep, but after that, he didn't sleep as soundly and moved around a lot more and I had to calm him much more. At one point, one of the nodes behind his ear stopped monitoring, so we had to move his head to fix it. Luckily, this did not wake him.

all hooked up and sleeping

Around 3:45, he was beginning to stir again and the tech said we had done 6 hours of sleep time, so we could leave if we wanted. He came in to remove the monitors/nodes/tubes. As you can imagine, Will did not like the peeling off of the sticky nodes. I had waited to feed him this time until after we were all done, so that I could soothe him with his bottle. I then filled out the end of study questionnaire and were allowed to leave.

headed home

We got home around 5:20am. I got him in his bassinet, took a Tylenol PM to soothe my achy neck and let me sleep, and Matt took over from there.

Today, we got the results. He DOES have a mild obstructive sleep apnea. However, it is not bad enough to warrant any further tests or monitoring. His oxygen levels did dip down lower than usual, but according to the sleep doctor and our craniofacial surgeon, his results were much better than most cleft babies with Pierre Robin Sequence. We are SO relieved with this outcome and now I can rest easier. We still have to watch for signs of sleep apnea like lips turning blue or his snoring and snorting noises getting louder or more frequent than what they are now.

But, all in all, it was worth that night of discomfort for us both in order to have the piece of mind that all is ok!