My Winter Coat

I love this time of year.  The trees and plants are all working hard to give us the glorious green splendor that is summer.  Every day, Elijah asks (without words) to go outside and I comply.  We run and swing and play in the sandbox.  It's wonderful.

And yet, I feel like I'm still wearing my winter coat. I feel heavy, weighed down by this life.  My vision is clouded; it's hard to see the positive sometimes.

My head and my heart are trying to get on the same page.  In my head I know Elijah has major delays, but it's hard to get my heart to believe it.  I'm in a constant struggle inside myself...to stay positive and rejoice over every single milestone... and at the same time trying to accept our reality for what it is.  It's a reality that isn't what I had quite hoped it would be.

I feel so burdened and that feels heavy.  Don't get me wrong - it is not a burden to be Elijah's mom.  That is a blessing.  Trying to figure out how to teach and reach this little boy; that is hard.  It's not sunshine and roses.  It feels like winter.  And it feels that way because I believe in our son.  I believe that he is capable of learning, of doing, of becoming.  And, while that's a wonderful thought, the magnitude of trying to reach him with all of the things he has working against him is definitely heavy.  So, while you might not see me wearing my winter coat anymore, I'm still wearing it.  My heart is sporting a parka.

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One of Those Days

Have you ever had one of those days? You know what I'm talking about, one of those days - where nothing seems to go right?

Well, I'm having one.

Every night, Elijah has been waking up and has been staying awake for one to two hours. Last night was no exception and Elijah "visited" with me between four am and five am. We were both up for good at 7:30 (which used to be his normal wake up time). Oh yeah, and since Elijah didn't go to sleep until 9:30 last night, I stayed up late in order to have a couple hours where my name is Lisa instead of mom. I need that.

Needless to say, I was tired this morning. And grumpy. I started to slowly make Elijah his breakfast, carefully measuring out his supplements that we put in his food. With one more item to place in his bowl, I opened the cupboard and a coffee mug fell out and landed on top of the bowl. CRUNCH. You've got to be kidding me. The bowl broke, Elijah's breakfast compromised with glass pieces.

Quickly, while Elijah was in the other room, I grabbed the broom to sweep up any glass pieces, rushed around to clean up, and started the breakfast process all over again.

And then, OUCH. You've got to be kidding me. I picked up my right foot to pull out a piece of glass that had fallen far from the scene of the crime. Apparently, I hadn't done a good job sweeping. Now fearing for the safety of Elijah's feet, I grabbed him and placed him in the laundry room. Blood droplets marked my passage like bread crumbs, showing where I had been. I'm so glad that I washed the floor last night.

Bandage the foot. Wipe up the blood. Make sure all the glass is definitely gone. Let Elijah out. Remake breakfast- executive decision...no supplements this time. 45 minutes until we have to leave for therapy. Feed Elijah. Feed myself - do I have time? Get Elijah dressed. Get myself dressed. Put on some make-up? DRINK SOME COFFEE.

We made it to therapy - five minutes late, but we made it and Elijah was a rock star.

Elijah is napping now. I checked on him shortly after he fell asleep. His room is smelly. I'm not going to wake him up to change him. I know he wouldn't fall back asleep. So, it's a toss up between chancing a diaper rash and a grumpy tired toddler. The decision was easy. I'm not supermom. I wish I was, but I'm not. It's just been one of those days. Please tell me I'm not the only one. Okay, so I admit it's all kind of funny. I need a laugh today - share some of your misadventures with me!

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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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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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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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