Monday, March 30, 2015

A Day in the Life of a 9 Month Old

I picked another low-key day to record, because time is simply flying by and I want to remember these days.

0200: Noah wakes up, but Ross rocks him back to sleep.

0500: Noah wakes up and I nurse him, praying all the while that he will fall back asleep because we are all so tired of the early wakeups!

0530: Ross tries to put Noah back in his crib, and he fusses, so Ross rocks him to sleep and continues to hold him until he wakes up again.

0645: Noah is up for the day and crawling around, making sure all the rooms look the way he left them! (We turned the house upside down this weekend for some projects, and Noah is very excited that things seem to be back where they belong.)

0700: Breakfast! Noah eats a peanut butter banana muffin and half of a banana.

0730: Noah plays in the living room while I drink my coffee. Necessary.

0810: Noah is getting clumsy and whiny and keeps asking for milk, so we start his nap routine a little early: nurse, book, song...

0840: I lay Noah down in his crib and tell him I love him and I will see him when he wakes up. He proceeds to stand up in his crib and fuss. Wild man.

0910: Noah is asleep! I catch up on some emails and do some Bible study and journaling. It's been way too long.

1020: He's up. Blah. What happened to the 1.5 hour naps he was taking a month ago? I shouldn't complain, though. For the past month, he has avoided one or both naps more days than not, so any morning nap is a win. I nurse him briefly and then we play.

1100: We go on a walk with our neighbor and her two little ones.

1200: Back home! We both eat lunch. Noah has some of a sweet potato chickpea veggie burger, and some pureed veggies.

1215: Play! Noah is getting really good at moving seamlessly from crawling to sitting to standing, and everything in between. It's crazy.

1300: Nap routine. Nurse, story, song.

1320: He's in his crib wiggling.

1350: Finally asleep. Two naps in one day! A rare sighting.

1500: He's up! Hi buddy :-) He promptly falls over in his crib and bumps his head, starts crying, and signs for milk. Of course he gets some.

1530: Dinner: ground beef and green beans, followed by some puffs and half a banana. Hungry monkey!

1600: Play outside in the gorgeous sunlight.

1700: Play indoors.

1730: Bath time!

1800: Nurse. When he's done he rolls to his stomach, pushes up with his hands, and stares at the door, waiting for Ross to come get him. The last few days, we've been practicing saying "Dada" at that time, and Noah totally imitates me. It's pretty cute!

1830: Ross reads a book to Noah and then rocks him before putting him in his crib. Going to bed a little earlier tonight, because in the past that has actually helped with the early morning wakeups.

2030: I pump and get ready to go to bed. But then...

2100: Noah is crying. Thankfully, this time when I pick him up and snuggle, he burps and falls back asleep. He has usually been getting up around 1-2am, and then again around 4-5am (usually up for the day at that time). But tonight, he was up at 9pm, 10pm, and then flat out awake from 12:30am-2am. Baby sleep is an enigma to me!

Wednesday, March 11, 2015

Hearing and Loss: Part 2

(You can read the first part of the story HERE)

When Noah got his hearing aids around three months of age, the audiologist sent us home with instructions to wear them all of the time when he was awake. So the first day, we did.

He was MISERABLE. I was miserable. He was so, so fussy that day and refused to nap. I was afraid that he was overstimulated all of the sudden, and that hearing all the sounds all at once was really overwhelming. After a horrible day, we took a break for a few days. (When his fussiness didn't subside, we finally figured out it was reflux, but that's a different story for a different day.)

So after that terrible introduction, I was hesitant to have his wear the aids all the time. I mean, he couldn't even hold his head up for long periods of time yet, and hearing aid microphones feedback just like normal microphones when they get too close to something. So of course I didn't want him laying on one ear, or sitting in a carseat with the aids in, or anything like that.

There was finally a golden period where he could sit up and wear his hearing aids for a longer period of time, but that ended once he learned how to pull them out of his ears. So to make a long story short, I probably haven't had him wear them as much as he should. There is always an excuse.

Ironically, I felt like I was being nicer to him by not making him wear them 24/7. I was also lulled into a false sense of complacency by the fact that Noah's hearing appeared to be better than that of my youngest brother, who has hearing aids but doesn't always need to wear them. I mean, it's usually just Noah and me hanging out in a quiet house, and he always seems to respond to noises and voices...

But last week, I got to go into the sound booth for Noah's first Visual Reinforcement Audiometry (VRA) Test and hold him on my lap while the audiologist projected sounds at different volumes and frequencies from different speakers around the room. When Noah heard a sound and turned toward the corresponding speaker, a little puppet would light up next to that speaker. Then the audiologist would flash a light to get Noah to turn back toward the front of the room before she projected a different sound. I had my hearing aids in, and Noah didn't. I was shocked at the number of sounds I could hear at a seemingly "normal" volume, but Noah kept looking at the light in the front of the room, oblivious to the sound.

That test made me really, really sad. My heart sank with every missed sound. He may "just" have a mild/moderate hearing loss, but he is missing a LOT without his hearing aids.

Sitting in that booth with my baby brought back some feelings of inadequacy from my own childhood. I have a moderate/severe hearing loss, that dips into the profound range at high frequencies. By and large, I really wouldn't say it was a big part of my childhood. My mom fought hard for us to grow up with a sense of normalcy, and I really only felt different when I had to take my hearing aids out in the pool and couldn't hear my friends. (But Noah's hearing aids are waterproof! Yay for technological advances!) Anyway, for as long as I can remember, I have always erred on the side of being a very performance-driven person, and sitting in those sound booths as a kid was stressful for me.

I always had wonderful audiologists, and the best parents. But the fact of the matter is, you walk into that booth knowing you're about to fail a test, and everyone outside the booth knows it, too. The audiologist says words to you and expects you to repeat them, but you don't have hearing aids in and you can't lipread and suddenly, it's all a foreign language. So you repeat words, almost certain they're not the RIGHT words. Then they play sounds at different frequencies and volumes and ask you to push a button when you hear a sound. I so desperately want to hear the sound (even to this day) and I'm straining so hard to hear ANYthing, that I'm pretty sure sometimes I just hear sounds in my head and push the button when there's nothing to actually hear! That booth can make a person crazy.

Sitting there with my baby, who has a lifetime of sound booths ahead of him, was harder than I expected. I'm so ashamed I haven't been taking his hearing loss seriously. I'm so sad about what he's already missed. I feel so negligent for not getting him new ear molds before the other ones were ridiculously small. I'm ashamed that sometimes I forget to check the battery before putting my kid's hearing aid in. I'm sad that sometimes his hearing aids are ringing in his ears and it's too high pitched for me to hear and then my husband comes home and tells me, and all I hear is, "you're a terrible mom." (Of course he is NOT saying that, but that's what it feels like sometimes.) It's a lot of pressure, this motherhood gig.

I never let myself think of hearing impairment as a possibility while I was pregnant. Of course, the odds are NOT in my kid's favor. Hearing loss is a dominant gene in my family, with roughly a 60-75% rate of occurrence. Yet... I'm not sure if it was denial or common sense, but for once in my life I told myself there was no use worrying about something that may or may not happen. But it happened. And it's taken me 9 months to start coming to terms with that.

Wednesday, March 4, 2015

Hearing and Loss: Part 1

Noah failed his first hearing test in the hospital. Depending on the method and the equipment, it's not necessarily uncommon to need to repeat the first test. Fluid in the ears, fussy baby, what have you. No big deal.

Then he failed the second test, right before we were discharged from the hospital. My mom was there, and she cried. So that made me cry. But really, I was so submerged in the postpartum haze, all I had the capacity to think about was keeping my baby fed and warm.

We had an official ABR with an audiologist a few weeks after Noah was born. They were able to fully test the left ear before he got too fussy to continue, but so far he was indeed hearing impaired. So a week later, we paid another co-pay to get the right ear tested, found out that the right ear was the same as the left ear, and ordered hearing aids then and there. By the time we got home with our sweet baby after that appointment, I was mostly worried about where the heck the money was going to come from, and a little bitter that my friends didn't have these healthcare costs.

tiny baby sleeping during his first ABR

second ABR and making his ear mold impressions
Those first few weeks, I was consumed with postpartum pain and anxiety and thrush and a colicky baby who wasn't gaining enough weight. It took a few days after receiving the diagnosis for the reality of hearing impairment to start to sink in: My baby isn't perfect. He isn't going to be the same as his peers. He is going to have more hurdles and more expenses for the rest of his life. It's just not fair.

The NICU nurse in me takes a step outside my own bubble and thinks of all the horrific, awful, sad things she's seen and knows in an instant that hearing impairment is pretty darn low on the he's just a baby and it's not fair spectrum.

But you know what? In my world, in my life, it's still sad. It's a deviation from normal. It's a loss of its own kind. Even though hearing impairment has a heavy hand in my family's gene pool, even though I myself grew up with hearing loss, I was somehow still surprised and sad when I learned I'd officially passed it on to my son. I felt like I'd failed. Like I given him my biggest weakness... the one thing you don't want your kids to inherit.

I had the healthiest darn pregnancy, and I don't take a minute of that for granted. I took the vitamins, I went to the checkups, I ate less dessert, I worked out. At the end of the day, while I liked to think that I could control the outcome, I couldn't. I had a wonderful pregnancy and delivery, and a beautiful, perfect baby for a few days until someone told me that my baby was flawed and abnormal because he couldn't hear well without help. Is that dramatic? Sure. Is it how I felt? Absolutely.

So we ordered the hearing aids and I finally cried. There are so many options now compared to when I was a kid: colors, neon, sparkles... but I wanted the most neutral color for Noah. I cried because, what if people stopped looking at his big blue eyes and his gummy smile, and all they saw was the plastic in his ears? I wanted the hearing aids to be invisible as possible. I didn't want people to think my son was "special." (Why am I so afraid of that? How would I feel if he did start to display a mental handicap down the line? That's a whole different issue I'm trying to sort through, because I am starting to see that I fear the abnormal and unknown much more than I thought.)

4 months old in hearing aids
Around Noah's three month birthday, we went to the audiologist for the hearing aid fitting and it was just the sweetest thing when we put them in for the first time. Noah was babbling in Ross' lap, but when the hearing aids turned on, he fell silent and grew wide-eyed, taking it all in. He slowly looked at us, and got the sweetest smile on his face when we started talking to him in quiet voices. I totally teared up. Then he looked around and found the air vent on the ceiling that was humming-- he could hear it now!

I couldn't help but admit that this was very obviously the best thing for him, but that doesn't mean that, nine months after his diagnosis, I'm not still struggling with it.

Monday, March 2, 2015

Extravagant Grace

The last few years, I haven't given something up for Lent because I was already going through a lot. This year, I need to get out of my comfort zone myself. To remove the crutches and look to God to fill that void instead. To find energy, peace, and comfort in the Creator and not the created.

So, for the first time in a long, long time, I gave something up for Lent. Like truly gave it up. And I've been "good" about it. Except, well, I'm finding that I can follow the letter of the law but not the spirit of it. I don't know why I'm surprised.

I'm reading Extravagant Grace with some friends and this page stood out to me today (emphasis mine):

...When the Disney message is loudly proclaimed from the pulpits of well-meaning, Bible-believing churches, it is devastating to God's people. It tells us that if we just have enough faith, we can do or be anything we want to. We may not succumb to the crassest form of this belief that infects many churches, the form that teaches that our faith can make us healthy and wealthy. Yet we often buy into a more subtle form of the same malady. We really believe that if we have enough faith and try really, really hard that we can stop sinning and be just like Jesus. We are taught that it is within our power to allow or inhibit God's work of sanctification in our lives, so that our progress in personal holiness is up to us. If we try harder and cooperate with God, we can succeed and achieve virtual perfection, becoming spiritual princes and princesses. If we choose not to be fully committed to God, however, he is powerless to change us and can't possibly bless us as he longs to do.

That view ascribes fast too much power to people who are actually very weak and fully of sin. God planned it this way, remember? He could have made us strong or even perfect the moment he saved each of us, but he didn't. Instead he sent his Spirit to take up residence in people who are still bound to sinful flesh and full of remaining sin. As God calls us to obedience, he remembers that we are only dust, but we keep forgetting. We think that with a wish, a sprinkle of fairy dust, a great quiet time, and some prayer, we can all be spiritual heroes and do great things for God. We couldn't be more wrong, and as a result, we are devastated when reality crashes into fantasy day after grueling day.

I love, love, love this reminder.