Home is wherever I'm with you

Writing an update about Caleb’s hospitalization took longer than I thought but it’s because I’ve been snuggling with my babies, watching Super Bowl coverage, cutting red paper hearts and smacking kisses every chance I get.

Since I can be slightly long-winded, I’ll start with the end and say Caleb is doing great and we’re home.

Thursday was a roller-coaster day. Joe and I both woke up at 4:30 a.m. when Caleb woke to eat. His nurse said he had a great night and didn’t have any sleep apnea episodes. I was thrilled. Surely everything must be a mistake; he probably just had a bad sleep study on Tuesday night.

Joe and I couldn’t fall back asleep so our day had begun. We watched the thick fog roll in and cover Meridian Street. I read Isaiah 43 over and over again, remembering God’s faithfulness during my pregnancy with Caleb. (By faithfulness, I don’t mean the outcome but the fact that I was never alone.) We realized neither of us packed socks. We sipped grape juice and ate graham crackers. We watched “It’s a Brad Brad world.” We asked every person who entered the room if they thought something was wrong with our baby and what our day would look like.

On Wednesday night, our doctor had mentioned Caleb might need an MRI which would require him to be put under general anesthesia. I wanted answers but I really didn’t want that to happen.

I wanted answers but I just wanted to take him home.

Around 8 a.m., Caleb’s pediatrician came in to see our little guy. We pummeled him with questions but he hadn’t seen the sleep study results and couldn’t tell us much. He reassured us that Caleb is a strong baby and he was surprised to see us in the hospital.

We told him we were surprised too.

Around 10 a.m., we met the PICU doctor. He wanted a detailed history on everything Caleb. His first question: was it a normal pregnancy? Uh, no. How long has he been this noisy? Um…ever since I met my baby face-to-face.

Caleb’s history took forever to share but this doctor was so kind, so patient. We figured out his mom was my sophomore algebra teacher. (They have a unique last name.)

Finally we learned why everyone was so worried about our baby the night before. I asked if the sleep study could have been a mistake. The doctor gently said, “No. No, the results were impressive.” And I immediately knew impressive wasn’t a compliment.

On Tuesday night, Caleb had 200 sleep apnea episodes. He only slept five hours but stopped breathing 200 times. He experienced obstructive sleep apnea (something blocks the airway) and central sleep apnea (his brain doesn’t tell his body to breathe).

The good news (because only good news can follow a statement that bad) was each episode only lasted a few seconds and his oxygen levels remained high throughout the night.

So, you know, that was some good news.

Also, the hospital monitors were set up to catch sleep apnea episodes of longer than 10-15 seconds. So even though we thought Caleb didn’t have any episodes while in the hospital, he probably did but they weren’t sever enough for the monitors to catch them.

Slowly, it was beginning to all make sense.

The PICU doctor told us a Riley pulmonologist was looking over Caleb’s sleep study results and he would decide if any tests were necessary (especially the MRI) and what would happen next.

Around noon, we met the pulmonologist. He wanted to hear Caleb's history from us. Did we ever see Caleb turn blue? Thank God, no. Did we ever see him not breathe from 10, 15, even 30 seconds? Thank God, no!

This doctor explained everything looked awful for Caleb on paper. (In fact, the PICU doctor told us he hadn't seen such a bad sleep study in two years.) That's why they made us rush to the hospital when the initial results came in.

But the pulmonologist confirmed what we and Caleb's pediatrician have thought all along: Caleb is a strong, growing boy who has larynomalacia, bad reflux and super thick mucus. The doctor explained as long as Caleb has those three conditions swirling around, he would never have a normal sleep study. They will make him noisy and block his airway for a little bit at a time but it's nothing more serious.

Even though the sleep study showed central sleep apnea, sometimes laryngomalacia can make an obstructive episode appear central. The pulmonologist thought an MRI would be an unnecessary measure for a baby who is fine.

He said we could take home a sleep apnea monitor but if it made us more anxious or woke us up too often with false alarms, we could stop using it as long as Caleb continues to breathe and sleep like he does now.

I felt like I could breathe again.

Honestly, I felt like I could sleep again too. Even though we were still talking to the doctor, I wanted to curl up on the stiff, vinyl couch and pass out.

The doctor left and we ate lunch. I wanted to bury my face in all things dairy. (Hi, my name is Katie and I'm an emotional eater for chocolate, baked goods and heavy cream.) Instead I ate a grilled chicken sandwich.

We talked to both doctors some more. 

A nurse ordered our home monitor and asked us to watch a CPR training video.

I took a blissful 30-minute nap. 

We received in-depth training on the home monitor.

A nurse went over our discharge instructions.

I wanted everyone to please stop telling us how to dial 9-1-1 and do CPR at the same time.

By then, it was early evening and we packed up our precious baby and got out of Dodge.

We're doing really well at home. Caleb has slept great with the monitor, Joe and I are catching up on sleep and Madeline enjoying mucho Disney movies and PBS shows while resting with a bad cold.

We are so thankful for our sleepy baby.