Operation Sleep

When I was pregnant, we bought a convertible crib which transforms to a day bed and finally to a twin bed. This was way before we knew who Elijah was and certainly before we knew that he would have special needs. Once we realized that he desired a different sleeping arrangement, we toyed with the idea of getting him something different -something closer to the ground and something that would have railings - but decided to give the day bed we have already a try. He was doing pretty good just with his mattress on the floor, so two weekends ago we decided to transfer Elijah from his mattress on the floor to his day bed.

Despite the post prior to this one, I am happy that we made the decision to forge ahead with this transition to a big boy bed. After all, Elijah wasn't really sleeping through the night before we made the switch. Best of all, Elijah seems happier about sleep. He beams when he gets in his bed and he seems to be proud of himself. He didn't like being boxed in his crib and would cry every night when we put him to bed. Now, he seems to like knowing that he can get out of bed if he wants. Of course, the new challenge is teaching him to stay in bed all night long.

I know it takes time and training for any kid to sleep in a bed, not just those with special needs. I know that little ones sometimes fall out of bed when they're learning and we've set up pillows as a precaution. We worry, of course, that he'll hurt himself. I'm not so much worried that he'll roll off of the bed (because of those pillows), but that he'll fall from a standing/jumping position. But, I have to ask myself... is this any different than any other parent making this transition? Perhaps in some ways, but I think it's mostly the same. Elijah is highly mobile, desires to be independent, and knows how to get down from his bed safely. So, we'll make his bed as safe as possible and try to teach him how to sleep in a little boy bed. We think he's ready and he deserves to be treated the same as we'd treat any other child, right? At least that's what I keep telling myself. That doesn't mean we're not afraid he'll hurt himself. We are afraid. But I don't want that fear to hold us back from giving him the opportunities to grow and develop, just as any other kid.

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He's a Big Boy

Elijah has been - how shall I put this - challenging lately.

It's kind of difficult to put our finger on what is wrong. We know Elijah is teething, but he has been for months. Two of his two year molars are poking through, but those suckers are taking forever. And to think there are two more to go. Sigh.

At the age of two our little man finally started to sleep through the night fairly consistently... and then it all changed. Teething, perhaps.

The thing is, though, that there are a lot of changes taking place in Elijahland. There might be more to it than just some teeth. Little man seems to be trying to assert his independence in whatever ways be can. He seems to be having the typical two-year-old "me do" mentality. Problem is, he isn't able to tell us verbally what he wants - which is frustrating to all of us.

His receptive language, however, is coming along. He's showing us that he is indeed understanding some phrases that we say. For example, if I say it's time to eat, he will walk to the table (usually laughing as he goes).

And, diaper changes. Elijah has hated having his diaper changed for the longest time. I'd explain what was going to happen, lay him down and he'd absolutely freak out. We finally figured out that he didn't like to be laid down. He wanted to do it himself. We tell him that he needs his diaper changed and he very compliantly lays down on the floor to have it changed. He'll even lift up his bum sometimes to help out! I know it might not sound like much, but to us...it's a big deal. Not only does he understand, he has a preference to how his diaper is changed, and he wants to do it all by himself. He's a big boy and he's desperately trying to let us know.

Speaking of being a big boy, we're making the transition to a toddler/day bed. We've been thinking about this for awhile now, since Elijah's getting scarily tall for his crib. We turned his crib backwards (because the back of his crib is taller than the front), but then I needed a stool just to reach him! Not ideal. We've been apprehensive to make the change, wondering if he's ready developmentally. And guess what? Elijah seems to be sleeping better with just having his mattress on the floor (we're doing it this way first to make sure he doesn't take a big tumble out of bed). It's going to take some training to teach him how to stay in bed (and it would with any kid), but he seems to be so much happier. He's a big boy. He wants freedom and independence - just like any other two year old. And just like any other first time parents, we're trying to figure it all out. We'll get there.

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Sleeping during a Sleep Study? HA! (Understatements and Good News)

Our son is an awesome little trooper! He did so well yesterday and last night for his Polysonogram (Sleep Study) and Esophageal Reflux Study.

I have to say, you all must have prayed hard for us. Elijah handled the whole ordeal like a brave little boy and was such a sweetheart.

Granted, it wasn't fun (that's probably an understatement). We are definitely glad it's over.

To start the day, the diagnostic technicians put a reflux sensor through little man's nose into his esophagus (that's what you see taped to his nose in the pictures). Elijah didn't like it (that's probably an understatement). He didn't like being held down, nor could he understand why I wouldn't let him down from my lap afterwards. He fussed...a lot (that's probably an understatement).

Eventually, the little guy resigned himself to the fact that he wasn't going to be able to get down from my lap. We spent all afternoon and evening in a rocking chair playing with toys. What a trooper! I was glad that we were allowed visitors (something we didn't know until the last minute). Aunt Karen dropped by for a couple hours and daddy came after work. All in all, the day went by pretty fast.

Then came time to sleep. Ahh...sweet sleep. Right before bed, they attached a whole bunch more tubes and sensors. Um, we didn't get very much sleep (that might be an understatement). Elijah, who has been sleeping through the night in his own crib more often than not, was up about 50 times (okay, that might be an exaggeration). In the middle of the night, they pulled a bed into our room so that Elijah could sleep with me because he was so restless. That helped, but neither of us got much sleep. Poor guy. I was having a hard time sleeping. I can only imagine trying to sleep with all that stuff taped to me.

BREAKING NEWS! YAY!!!!! I got a call from the sleep doc as I was writing this (we weren't expecting news for a couple of weeks).

There is good news and bad news...The good news? Elijah doesn't have sleep apnea! Woohoo. Happy dance time!

The bad news? Elijah has pretty severe reflux...which, honestly isn't that big of a surprise. The great thing is that his reflux isn't causing apnea, which is what worried us. So, there you have it. A test summary and results all at once. This is really, really good news. Now we just need to figure out what to do about his reflux. We'll be waiting for a report from the GI doctor.

Even with all that stuff attached, our little dude managed to give us a cheesy smile. What a sweetheart our boy is! Who can resist that cute little face?

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Sleep Study - Tomorrow

I am so not looking forward to tomorrow. Tomorrow morning (the 29th), at 11 am, Elijah's sleep study starts. Yes, his sleep study starts in the morning. That's because he's having a Polysonogram Study AND a Esophageal Reflux Study. Sounds fun, doesn't it?

To start off the day, Elijah's going to have a tube (sensor) placed into his esophagus through his nose. I am feeling sad about this already. He's not going to like it (um, neither would I!) and I'm not going to like watching it either.

I just finished packing Elijah's and my overnight bag for the hospital. It's a weird sensation packing for a night at the hospital. I wish I was packing for a fun excursion - like a water park...Elijah would like that. The overnight excursion we are going on...I'm pretty sure Elijah isn't going to like it.

But, of course, I'm aching for some answers to his sleep issues. We need to get this resolved and so I'm anxious to get this study over with.

There's a lot of reasons that I dread this experience. The memories it stirs up is certainly one reason; I'm not exactly looking forward to seeing our little man attached to a whole bunch of wires, which will definitely remind me of darker NICU days. But, the thing that makes me the most nervous is the fact that Elijah won't be able to move very much. This little man loves to walk and he loves movement. If he's not walking, he'd like to be in a swing or in a stroller. 18 hours of watching movies, reading books, playing with toys (and hopefully sleeping) while sitting in a crib is not Elijah's idea of fun. Really, though, what (almost) two year old would find staying in bed all day fun? Add that to Elijah's visual issues and his fine motor delays and it seems kind of like torture. And mommy? She's not going to be able to save him. And that's going to see like torture too.

We covet your prayers for tomorrow. Keep us in your thoughts and prayers, because I'm pretty sure the only way we'll get through the next day and night is if God grants Elijah a calm spirit (and me too!).

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Scared of Sleep

We got Elijah's pulse-ox results today. The results were "abnormal but not at all dangerous to Elijah." Abnormal is definitely not what we were hoping to hear. Here's what happened: "Elijah had 120 de-saturations below 89% that totaled about 20min (for combined studies) over about 22 hrs of sleep". That doesn't sound so good to me. That means every night he's probably not getting the amount of oxygen he should for a total of 10 minutes.

Honestly, the results were a bit of a surprise to us. Any time we had looked at the monitor the two nights we had it, Elijah's saturations were fine. We didn't sit up watching it all night and I'm thankful that I didn't. Before I start beating myself up for not noticing the de-saturations, how would we have known? For both of the nights that we had the monitor, Elijah woke up in the middle of the night and spent the rest of the night sleeping (literally) on top of me. I didn't notice a thing. His de-saturations are definitely subtle. So, he's probably been doing this his entire life, we just didn't realize it. That makes me so frustrated and upset. Not getting good sleep is definitely bad for your development and it makes me sad that he's got one more thing working against him.

So, what's next? My awesome hubby (see previous post) got us in to see the sleep doctor this Wednesday - basically by calling and bugging the office people. :) They fit us in with a shorter appointment (we have a half hour when they usually like to do an hour). We have to meet with a sleep doc to talk about Elijah's history before they will order a sleep study. Hopefully we can do a sleep study soon so we can get to the bottom of the problem - we need to find out if the problem is brain-related or if Elijah has some sort of obstruction in his airway. I'm not really sure what the course of action is for either, but I'm already starting to envision Elijah's room with monitors and oxygen and that makes me sad.

Sometimes I feel like "what next?" Just when life seems to be plugging along, something else gets thrown at us. We'll deal with sleep apnea. It's not the end of the world, but at times it feels like it is. It's hard to put things in God's hands.

Sleep apnea would actually explain a lot when it comes to Elijah. He's never been a good sleeper (although, since his second set of HBOT, he has been sleeping better - falling asleep in the highchair and the car as the pictures illustrate). I'm glad we don't let Elijah cry it out - he can sleep in bed with us, he can sleep on top of me, he can cry for me in the middle of the night…as long as he's safe.

So, here we are in limbo. Waiting to know more, but a little scared of the sleep that could be harming our boy. I'll keep you all posted.

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Pulse-Ox

Tonight Elijah is wearing a pulse-ox on his little foot. Pulse-ox is short for pulse-oximeter; it measures a person's pulse and their oxygen saturation...hence - pulse-ox - get it? Monitors remind me of the NICU; their incessant, worry-inducing beeping was not something I hoped to relive in my lifetime. But, with that aside, I am grateful to have this device in our home for two nights.

Our pediatrician took our concerns about Elijah's night time breathing seriously and arranged for the monitor to be brought to our house. A nice man came over today and taught me how to use the pulse-ox. My only complaint? The medical supply place is scarily simliar to the cable company. I was told they would come between 9 and 1 and they showed up around 12:45. Oh well, Elijah had no therapy today, so we just hung out at home (which, honestly, is kind of nice).

Hopefully, the pulse-ox will show that Elijah is getting enough oxygen while he is sleeping. If not, then at least we'll know and we can do something about it (as to what that something is, I'm not sure).

The pulse-ox is meant to gather data. I thought that we would be listening to alarms sounding all night, but was relieved to learn that we were supposed to set the parameters really low and really high as to not set off the alarm. Good! I thought. At least we'll get some sleep!

Ha! Oh, how I now laugh at that thought. Elijah took forever to fall asleep. I don't think he was too thrilled about having some device taped to his foot. I suppose we could have done the taping after he feel asleep, but with our light sleeper I'm pretty sure it would've been impossible. I'm hoping he'll sleep through the night now. On that note, I should go to sleep. We're praying that the monitor will ease our fears and if not, that it'll give us some answers.

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Just Breathe

Lately, things have been going so well. Elijah is interacting more and more often. He's happy, he's cute, and he's fun. He's starting to sleep through the night a few nights a week (Yay!). Last night, however, I freaked out.

Elijah woke up around two a.m. I went and got him and rocked him back to sleep while lying in the chair in his room. As often happens in these scenarios, I fell asleep with Elijah lying on top of me. It was storming last night and one of the thunder cracks must've woken me around 5 am. In my half asleep stupor, I thought that Elijah wasn't breathing. "Elijah, Elijah," I said softly, panicky. Nothing. I felt his back for the rise and fall of his breathing. He felt so still. And then, the comforting motions of breath, obviously filling his lungs with beautiful air.

I sit in the chair listening to the rain on our roof, holding my precious boy on my chest, with my eyes wide open with fear. Did he really stop breathing or was it just my imagination? Maybe his breaths were just so shallow that I couldn't feel them.

And then…stillness again. I place my finger under his nose to feel the reassuring warmth and then cooling of his rising and waning breaths. Nothing. I'm not imaging this. One…two…three…four…five… And a deep breath. He's okay. Please God, let me be wrong, I plead. Please let this be my imagination. God, I don't think I can handle this. Please let him be okay.

For one of the first times since Elijah was born, I let myself ask the question, "What if I were to lose him?" Even in his early days I didn't usually allow myself to go there. Why should I ask it now?

Again…One…two…three…four…five….six….seven…Inhale.

I pick up Elijah and head to our room to include Andy in my scary discovery. He wakes up when I enter the room and lovingly pulls back the covers for Elijah and me to join him in bed.

"I think Elijah has sleep apnea," I whisper.

"What?"

"I think he stops breathing for short amounts of time when he's sleeping."

Andy places his hand on Elijah. We lie quiet and still, observing our boy's breaths.

"Did he stop breathing right then?" I ask.

"No, he was breathing that whole time." Okay, so maybe I am imagining this. Maybe it's just shallow breaths. Andy takes his hand off of Elijah.

"Keep your hand on him," I plead and a few moments later Andy discovers the same thing. "Five seconds," he says.

We whisper back and forth as Elijah stirs between us and soon the little man is awake and smiling at us. I try to get Elijah back to sleep, but he just wants to sit in-between the two of us and bounce. It's about time for Andy to get up to get ready for work, so he disappears as I make a more serious attempt to get Elijah back to sleep in his chair.

A few minutes later, Andy remerges to tell me he emailed Eli's pediatrician (it would've been too early to call and we both realize that Elijah's life isn't in danger). Andy and our pediatrician talk via email, in which the doc asks some questions. Is he gasping for breath or snoring? No. Is he turning blue or white? No. How long do the episodes last? Ten seconds at the most. These are all reassuring answers, but the doc refers us to a sleep specialist to check things out. The earliest appointment we could get is in August… Seriously?

Andy calls the sleep office again and tries to explain Elijah's complicated history. They bump us up to an appointment in July. Andy explains what happened last night to the lady on the phone and she told us similar things as our pediatrician…Apparently it's "normal" for some kids to hold their breath when they're sleeping, even for as long as 20 seconds. As long as they're not snoring, gasping for breath or turning blue, it's probably not a problem. So, we'll keep an eye on him, but apparently some kids just sleep this way. This is probably just Elijah's normal sleeping pattern and either way, last night probably wasn't the first time this happened, it was just the first time we noticed it.

I'm trying not to freak out. Their explanation makes sense and we know if Elijah held his breath for longer than 20 seconds, we'd obviously need to call 911. There's really nothing new here. Elijah is healthy and happy. Even if he were diagnosed with sleep apnea, it wouldn't be the end of the world. There are things that we could do to monitor him. Right now it sounds like it's just the way he sleeps and we shouldn't be worried about it. But, I can't help but be a little scared. What if…? What if…? We can't watch him all the time. I can't stay awake 24 hours a day.

Elijah is sound asleep upstairs as I write this. I know he's okay, but why then does it feel like I'm the one who can't breathe?

Please keep us in your prayers.

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