Sleep Update

We met with the sleep doc last week Wednesday - I can't believe I haven't written an update about it yet!

The doc was a really nice guy and I was impressed with how excellent he was with Elijah. When Elijah came over with his slobbery hands, wanting to touch the papers on the doc's lap, the doctor simply patted Elijah's little head as a grandfather would. He wasn't dismissive or scared that Elijah would get him dirty (at least he didn't show it). He was kind and I really appreciated that.

The appointment was fairly short – we discussed Elijah's history and the doc recommended a sleep study to be performed (as we had hoped he would). We were grateful that he is taking our concerns seriously and we left the office feeling heard and understood.

The doctor's first inclination is that the de-saturations might be caused by reflux. If anything is coming back up into his esophagus, it could cause Elijah to stop breathing for short periods of time. A pulse-ox can produce inaccurate results, but the doc seemed to think Elijah's results were accurate.

We were given a tour of the sleep center and made an appointment for August 5^th. We're hoping that someone cancels before August so we can complete the study sooner. I am not looking forward to this study – and that's an understatement. The study will be over 18 hours and will start at 11 am. They have to put a probe down Elijah's nose into his esophagus to measure acidity. He won't be able to do much of his favorite activity – walking – since he'll be hooked up to all sorts of monitoring systems – the worst being the aforementioned probe to monitor his stomach acid. I have no idea how we're going to keep him calm and in one room – not walking – for that long. I've decided not to worry about it until the time comes, or at least try not to. J

Well, I think that's it. A study is scheduled; we have no new answers to our questions at this time.

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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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To Andy

As you all know, yesterday was Father's Day. I know I'm a day late, but I wanted to pay tribute to Andy, the daddy here in Elijahland. Here's Andy's life as a dad in pictures...

Although I've complained about not getting to hold Elijah until he was three days old, I've never once heard my wonderful hubby complain about having to wait until Elijah was four days old until he got to hold our precious boy in his arms.

Andy was my rock in those early days. He held me up and took care of both Elijah and me. The NICU is a scary place. It's a place no one wants to be, but being there with Andy seemed safer.

I was honestly surprised at how natural Andy was as a dad. He was never scared to change a diaper or hold his fragile newborn son. In the hospital, he changed most of Elijah's diapers (I was still recovering from surgery). Even though the nurses could have done it, Andy always jumped in to take care of his son.

From the beginning, Andy and Elijah seemed to have a special bond. Mom was all right in Elijah's eyes, but dad - he was the coolest guy in the world.

When Andy had to return to work after his paternity leave, Elijah definitely noticed when his dad got home from work. He was and is so in love with his daddy.

This is hands down my favorite picture of Elijah and his dad. Elijah had been home for a few days. It was such a joy to finally be able to take care of our son at home. So precious

Andy is an innovative parent. He always figures out better ways to take care of Elijah.

He's always available for a snuggle.

Andy is Elijah's favorite playmate. He finds new and fun ways to entertain and teach our boy. I can do the same excact thing as Andy and get no reaction. Andy, however, is hilarious.

Not only is he handsome, he's more than willing to wear a burp rag on his shoulder - and he makes it look good

He makes his boy smile on a daily basis.

Andy does the bedtime routine almost every night and is a rockstar at getting Elijah to sleep.

He gives the best kisses!

He is constantly making Elijah laugh. "Tortellini!"

When I wasn't able to do swimming lessons with Elijah, Andy stepped in. And he didn't even care that he was the only guy in the class.

Andy is usually the one to give Elijah a bath - they both love it!

Andy finds opportunities to teach our son in everyday situations (and, might I add, he's really good at hanging things on our walls!).

He's more than willing to give Elijah a ride.

He seeks out alternatives to help our little guy recover. It's become a passion of his - and even better is his desire to help

other parents find ways to help their kids too.

He shares the things he is

passionate about with Elijah - and it shows. Elijah loves music!

He's played mini-golf with Elijah strapped to his back.

He always makes time for Elijah, no matter what. Chores in the yard can wait.

He even lets Elijah touch his computer (gasp!)

He is known as the "fun guy" in our house, not to be confused with fungi, which is a totally different thing.

He does guy stuff with Elijah, such as watching the Super Bowl.

Perhaps the most important thing...he's a really good husband. He loves us and takes good care of us. Elijah and I are quite fond of him. Thanks for all you do Andy! We love you!

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Twenty-Two Months

This past weekend, Elijah turned twenty-two months old…which means his second birthday is only two months away. Is that really possible? It truly seems that we were blowing out the candle on his first birthday cake mere moments ago. They aren't kidding when they say the time goes by fast (who are these "they" people anyway?).

So, what did our twenty-two-month old do this weekend?

He went to a wedding and spent the entire ceremony doing this…

He also got to meet his "cousin" Henry for the first time…
















Elijah took a ride on his grandparent's boat for the first time. He wasn't so sure about it …
















Then he partook in one of his favorite pastimes – shadow watching, even better with grandpa…
















It's good being twenty-two months old. J

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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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Our Neighbors Must Think We're Crazy

The Garden

Last night, Andy and I finally finished planting our garden. It's the first garden we've ever planted together and we're quite proud (although pretty certain the whole thing will be eaten by the numerous rabbits in our backyard). Optimistic, I know.

Getting anything done while Elijah is around is quite challenging and I remember why it is that I never seem to get anything done. He needs constant supervision as he walks around our yard, trampling through the aforementioned garden, walking backwards - and seemingly unaware of all of the trees (and other dangers) we have in our yard. We constantly yell, "Elijah! Watch out! Tree!" and he listens...sometimes. Basically, only one person can work while the other makes sure the little man doesn't crash into a tree.

After Andy did all the manual labor, he took Elijah inside to get ready for bed. That left me to plant the garden, which I thoroughly enjoyed.

Unexpected Visitor
That is, until a red fox walked through our backyard about fifteen feet from me. I had the hoe in my hand, ready to defend myself, but the fox walked by me without so much as a second glance. I walked backwards (I'm learning from Elijah!) to our house and tried to slow down my heart rate. The creature was gone and after a brief break, I went back to finish planting (okay, and after googling to see how dangerous foxes are - not so dangerous to humans, by the way. Good to know).

Crazy People

It took Elijah forever to get to sleep and by the time Andy came back outside to join me, it was dark. Imagine the two of us, trying to figure out where to plant our seeds and watering our plants in the dark. I put some more flowers around our mailbox and I couldn't help but wonder...do our neighbors think we're crazy? Probably. We finished our gardening at 10:30. We are a little crazy perhaps.

What did I do with all my time before Elijah came along? I really have no idea.

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Watching Babies Talk

Sometimes the best teachers are children, so I thought having Elijah watch other kids (specifically babies) talking would be good for his development.

So where was I going to get these little babies for Elijah to listen to? Well, YouTube of course! I searched for "Baby Talking" and I came up with all sorts of videos to watch with Elijah.

The following video is a cute little clip of Elijah watching a baby talking. I just love watching Elijah's reactions to this little girl...
If you're curious and want to watch what we were watching, you can find it here.

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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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Communication

Sometimes I'm really saddened by Elijah's lack of communication. We don't get to hear him call out to us with a mama or a dada. He doesn't say "hi!" or "owie." In a lot of ways, trying to figure out what Elijah wants or needs is a guessing game.

But, the first sentence of this post is somewhat misleading and inaccurate. Elijah does communicate. No, he doesn't talk and doesn't use many gestures, but he definitely communicates. If I really think about it, he communicates a lot.

Here's the thing, Elijah has said things before. He said "moo" once when I was telling him what a cow said. He has said Mom a couple of times when I walked into the room (and I think he calls me "Om" at times). When he was under a year, he would say "laboo" in response to his dad saying "I love you." He tells us he wants milk by saying "mmmm" during meals. While I can't say that he has words, he does communicate.

I really do believe that Elijah understands a lot - much more than he is able to give back. And in these recent months, Elijah is finding his own way to voice his opinions.

Just a few things that Elijah does to communicate with us…

-During a meal, if he wants more of a desired item, he will open his mouth big. If he doesn't want it, he will glue his mouth shut (nothing is getting in there!)

-He's starting to touch his highchair as if to tell me, "Yo mom, I'm really hungry. Do you think you could get your butt over here to give me something to eat?!" (Hmm, I think I need to teach him some respect for his mother, don't you?)

-If he wants to go outside, he'll touch the door (as in the above picture). Or he'll walk around screaming because we're not letting him out or we're not doing it fast enough. He's the king of temper tantrums.

-He waves to tell people hi or bye. Inconsistent, yes, but it's happening when Elijah is willing. Sometimes all it takes is a "tell so-and-so hi" and he'll immediately wave. Other times, he acts as if he doesn't understand us (it's just the beginning isn't it?).

-If he likes something, such as having his toes tickled, he'll ask for more by standing by the person who was doing the desired activity. He'll run away (because this boy never sits still), but he comes back and asks for more by standing and waiting for the person to tickle him again.

-The newest development is mimicking. I can't even begin to explain how exciting this one is. Mimicking is one of the first ways we learn – and it's a form of communication. Crazily enough, one of the first things Elijah mimicked was galloping. Then he shook his head. Then he waved. Now, he's doing all of those things on his own - because he learned them (AWESOME).

Elijah's most recent development happened a couple of mornings ago. Andy and I both stood on one foot and told Elijah to do it too. He just looked at our feet and ran away. We grabbed his hands and tried again. Our feet went in the air and little man's foot slowly but surely left the ground to copy us. "Good job Elijah!" we said as Elijah smiled and then did it for us again. "He did it!" we said to each other with absolute joy on our faces. "He copied us!"

It's amazing how a small act, such as lifting a leg, can produce such joy. Communcation is huge and is really more important than spoken words. Irregardless of a person's abilities, many people communicate in their own way. Sometimes you have to pay more attention or give someone a little extra time, but communciation is usually there if you look for it. Don't assume that just because someone cannot talk they don't have anything to say.

Do we get to hear Elijah talk? No, not at this time. But, we continue to believe that he will speak to us. When the time is right and with God's help. He will.

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