Big Words, New Diagnosis

McDreamy works for a local Children’s Hospital (which is faboo, by the way). I liked him immediately: He’s thoughtful, thorough, and careful. He would stop mid-sentence while we were talking to listen to the Monkey breathe. You could always hear him breathe — it was a constant almost whistling sound. He examined the monkey’s nose, throat, and chest areas and told us that in addition to having very small nasal passages, he has laryngomalacia. He even wrote it down on his business card for me.

Now, according to our good friend Wikipedia, laryngomalacia is a soft or floppy larynx (http://en.wikipedia.org/wiki/Laryngomalacia). What happens is that this floppy cartilage will literally block the airway when the Monkey is lying down and — most often — sleeping. This results in sleep apnea (stopping breathing while sleeping), which wakes him up. This was one of the main reason why the Monkey didn’t sleep well: He keeps waking up because he can’t breathe. Now most babies outgrow this around the 18-month mark, when the cartilage in the throat hardens, so its mostly a wait-and-see game.

But McDreamy is also thorough, as I mentioned. He wanted to see just how much the laryngomalacia affects the Monkey’s sleep. So he ordered a sleep study. Since the Children’s Hospital that he works at closed its sleep center due to budget issues, he sent us do another specialty hospital for a session. This sleep study would monitor the Monkey while he sleeps, document how many times he stops breathing, for how long, etc. At this hospital, we had a 2 p.m. consultation with a specialist, and then the Monkey and I would spend the night. From 8 p.m. until 5 a.m. they would record the monkey’s sleep.
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The Sleep Study

I didn’t care for one of the doctors right off the bat. While the one assigned to us was fine, her supervisor was cold. I felt he was rough with the Monkey while examining him. He told me that the Monkey would DEFINITELY need surgery to remove his tonsils to make room for him to breathe, and that he would be shocked if the Monkey didn’t have severe sleep apnea. The surgery would be done when he was 12 months old, at the hospital, and further ones may be needed.

The Monkey, barely 3 months old, wailed the entire time. He screamed any time this supervisor came near him. I took notes, and asked follow-up questions so I could relay the information to the Hubbs later on. Journalist training saved me. Without taking notes, I probably would have been crying as much as the Monkey.

After the appointment, they showed us the room we would be sleeping in, and asked us to be back by 6 p.m. to get the monkey “hooked up.”
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Getting “hooked up” meant attaching a ton of wires to the Monkey’s body and head. You see all the wires and doo-dads laid out on the table? Aside from the phone, everything was put on my baby. The wires were attached to his skin using a conductive gel and were covered with tape. For his hair, they used some kind of paste that although they claimed was water soluble, took 4 hair washings to remove. The Monkey was not pleased.

To attach all these electrodes, I had to hold the Monkey on my lap in a chair while two young-ish technicians fluttered around us like planets orbiting the sun. At first the Monkey, who is a notorious flirt, was smiling and cooing at them. After about five minutes, he was done. They weren’t. For the next fifteen minutes, he screamed and cried while they continued to attach the electrodes. I had to pin his arms to his sides. Soothing words, kisses, and assurances did nothing for him.

When they were done attaching the electrodes, they wrapped his head in adhesive tape (the kind that only sticks to itself) to keep everything in place. All the wires were taped together, all these colors twining together into a tube the size of a vacuum hose. The cherry on the cake was a sensor that goes up the nose and in front of the mouth to monitor the breathing (it looks like a modified breathing tube). The tubes were attached to his little cheeks.

At this point, the Monkey was near hysterical. He was overstimulated. He was completely freaked out. He was clawing at my clothes, trying to pull himself closer, as though if he could just get close enough, he could crawl inside my skin (or shirt) and hide from the evil people.

One of the technicians came back at this point, causing the Monkey to shriek, smiled at me and said “OK, he needs to go to sleep now, we’re ready to monitor him.”

Um …. RIGHT. I’ll just push the button on the back of his neck and he’ll go right to sleep. I mean, seriously. The kid was crawling the walls at that point. There was NO WAY he was going to sleep anytime soon. He was too freaked.

Instead of saying all that, I just nodded and asked her to turn off the light on her way out. I pulled my nursing pillow onto my lap and held the monkey, humming a song for a minute or two until he started to calm down. Then I nursed him. (Instant comfort) When he was done, I gave him his binkie and held him. He kept clawing at the bandages on his head and crying. He was miserable. I was miserable. I cried a little bit with him, apologizing to him for what he was going through, but assuring him that it was for the best and to please, PLEASE go to sleep.

He had been crying for an hour and a half.

I continued to hold him, and at the two-hour mark, he finally fell into an exhausted sleep. I had never been so relieved. That’s when I snuck a picture with my cell phone to send to the Hubbs with the caption “2 hours later, he’s finally out.”

It was a miserable night. The Monkey would wake up every hour or so, whimpering and confused, and often angry. I’d soothe him as best as I could — but he mostly fell back asleep when he exhausted himself from crying.

Halfway through the night, they decided he had severe sleep apnea. He was finally sleeping for more than one hour and was deep asleep. The technician decided to put the sleep apnea mask on him then and pulled the tape off his cheeks and strapped the mask on.

He was instantly furious. Instantly awake, arching his back, eyes slammed shut, and crying. When they turned the air on, his eyes popped open and his screams reached a higher octave. He clawed at me. He clawed at his face. At the mask. He fought for an hour before falling asleep for 45 minutes. When he woke up, he cried until he puked. The technician was in the room at that point. I was in tears, trying to mop up the mess and calm him.

She told me that I could call it quits if I didn’t think he could take anymore, but that they didn’t have enough information and that we’d have to come back if that was my choice. I looked at the Monkey, red-eyed and clawing at me and thought of having to put him through this again. He wailed and gagged again.

“Turn it off. He’s done.”

She nodded — she may have been a little misty too — and took the sleep apnea mask off him. I mopped him up with a wet towel, kissed his head, and cuddled him. His eyes were closing as she left the room, and he was deep asleep and drooling on my chest a minute later. He slept for four hours straight after that, not waking up until the technicians came in the room to torture him some more by removing all the electrodes, which were hopelessly tangled in his sweat-drenched hair.
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After calming back down and sleeping for another two hours, the doctors finally came back into the room to discuss the sleep study results: The Monkey had severe sleep apnea. In a four-minute block, he stopped breathing 12 times. The supervising doctor was absolutely certain the Monkey would need his tonsils removed. They told me he was at a high risk for SIDS, and that he needed to stay in my bedroom until he was at least 1 year old so I could hear him and be close to him if he had troubles. They warned me about the coming winter, and said that if he got sick, the Monkey may need to be hospitalized. I was to breastfeed for at least one year.

The technician that told me we could stop the study had warned me earlier in the day that the supervising doctor was PISSED that we had stopped the sleep study. Apparently, he would sometimes yell at people for stopping the study, so she wanted me to be prepared. She mentioned that he didn’t have kids, and didn’t understand why we would stop the study.

When the supervisor said he wanted us back in two weeks for another sleep study, he alluded to his displeasure about me calling it off. I glared at him. He shifted in his chair slightly and looked away. I had never been so angry at someone before. (Its what my Dad calls the “momma bear” instinct. And everyone knows, you don’t mess with a momma bear’s cub.) I explained that the Monkey had been crying for hours and had started to throw up. When he opened his mouth to retort, I cut him off, saying that at that point, the Monkey had barely slept and that I wasn’t going to torture him anymore and get him sick.

He didn’t have a response to that.

They wanted us to go back for another sleep study in two weeks, during which the Monkey would only wear the sleep apnea mask. Since they only needed a couple of hours of data, I wheedled the doctors into letting me come just after lunch, when the Monkey takes his longest nap of the day, instead of staying overnight.
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Sleep Study No. 2

I spent the next two weeks dreading the upcoming sleep study. The Monkey was hyper-clingy the entire time. NOBODY could hold him — not even the Hubbs — or he’s shriek, panic-stricken, and lunge for me. Once safely ensconced in my arms once more, he’d grab onto my shirt and lay his head against my chest. He’d panic if I left the room, even if I kept talking to him the entire time.

The two of us barely slept. I spent most nights upright in a chair, the Monkey held upright in my arms so he could breathe easier.

The second sleep study was torturous again. But at least he didn’t throw up. The monkey fell asleep long enough for them to get the data they needed. The preliminary information was enough for them to send us home with a loaner CPAP machine and baby-sized mask. He was to wear it every time he slept. The doctors said he’d “just have to get used to it.”

I was scheduled to go back to work the next week. My maternity leave was up. The Monkey was more clingy than ever. I was barely sleeping. The Hubbs and I were going through a rough patch. I honestly didn’t know if the Monkey could handle day care — or more accurately, if day care could handle him. I was terrified they’d call me and tell me there was NO WAY they could watch him. At the same time, the thought of going back to work depressed me. I like my job, but I love my kid. I wanted to stay with him. I felt like I was about to abandon him.

I was ready to drop from exhaustion and I hadn’t even started work yet. I was so stressed out that at one point, my milk production started to wane. (It came back.) I felt out of control. Stressed. Overwhelmed. On days when the Monkey fell asleep long enough while the Hubbs was home for me to take a shower alone, I’d spend the first five minutes sobbing with my head against the tiles before rushing through the rest of the routine.

I felt powerless. Like my life was spiraling out of control. I felt helpless and weak and miserable. It was only starting.

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2 comments on “Big Words, New Diagnosis

  1. Erin says:

    Wow I had no clue you were going through this! I'm sorry.

  2. Christina says:

    I'm with moam! I knew the monkey was not a “good sleeper.” But this is completely different. What an ordeal! Hang in there momma!

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