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.

Tuesday, February 10, 2015

Loose Ends

Three years ago around this time, the tapestry of my life started to unravel. By that June, it was completely undone. During those dark days, I had very little faith that God could fix that mess. The song that says, "Ashamed, I hear my mocking voice call out among the scoffers" rang through my head constantly and brought me to tears.

Here I sit, a short three years later, with an intact marriage, a beautiful baby, and a healthy dose of humility as I realize that I (a doubting Thomas) had to see God's hand to believe. But as Noah plays and I sip my coffee this morning, I can't help but feel like I'm getting a glimpse of eternity-- where ALL things work to the glory of God, and all the hard questions have answers.

Sunday, February 8, 2015

Mr. Sunshine

I feel like we left town with a baby, and came back with a little boy who has crazy HAIR all of the sudden, can eat pouches of baby food by himself, can down a breakfast buffet, can suck food off the table when his hands aren't working fast enough, finally started gaining some chub back after having the flu, laughs in anticipation of enjoyable things, throws a mini-tantrum when he doesn't get his way, is now in control of his facial expressions and loves to mimic people, really interacts with others, reaches for mom and dad, army crawls to explore everything, pulls up on things, climbs (loves climbing into his carseat and over people), speaks in baby babble sentences with vowels and consonants, and generally loves life. Cannot believe he's 8 months old!

Thursday, January 29, 2015


34 weeks on the inside//34 weeks on the outside

We took advantage of the January thaw today to walk to a nearby park, and Noah found out that he can pull to standing on this playground toy! I think he surprised himself. And me. Where did my tiny baby go!?

Although I do have to say, this is a really fun age. Babbling all day long, imitating faces and actions, reaching for me, exploring different foods, having clear preferences for certain toys (like green alligators), rolling like a maniac, army crawling/scooting, looking so proud when he learns something new, and melting my heart on a daily basis. Gosh I love this little monkey!

Monday, January 19, 2015

A Day of Life with a 7 Month Old

A few weeks ago, I wrote a post about resting while I had the chance. I don't regret a second of it! Life has been full speed ahead since Christmas. I had hospital orientation the first week of January, then we all got influenza, and this past weekend I worked all weekend orienting to my new unit.

In the meantime, Noah has NOT been napping. Honestly, it's so small in the scheme of things, but I can't help but feel like I'm letting him down when he doesn't sleep well. In the 7.5 months that Noah has been here, I'd say we've had a total of 1.5 months of textbook naps (at this point that means two naps a day, for a total of 2-4 hours of daytime sleep).

Last week, I spent entire days struggling to get one 45 minute nap in (thankfully we had a bit of a thaw and Noah did get a good stroller nap!). This kid needs sleep, but he has SUCH a hard time shutting down! He's always GO GO GO TALK TALK TALK WIGGLE WIGGLE WIGGLE. I LOVE it overall, but I wish I knew how to get him to turn it off. He needs rest, and I feel like it's up to me to coax him into it, but I cannot figure him out! I read all the books. I've tried all the tricks. Honestly, I think self-soothing is a developmental milestone that he hasn't reached because he's too busy with anything and everything else.

That being said, here's a fairly typical day for us since we're all still recovering from Influenza A: clear the schedule and get the kid to sleep at all costs!

0110: Noah wakes up. I get him and see that he threw up the avocado he ate for dinner. I change his sleep sack and feed him while Ross changes his sheets. Poor buddy!

0140: Ross puts Noah back in his crib and we all go back to sleep.

0430: Noah is up. I feed him.

0450: Ross takes a very wiggly baby back to his crib again. He doesn't fuss, but he also does NOT fall back asleep.

0530: Noah starts crying, so I feed him again thinking maybe it'll make him drowsy. Note to self: it never does!

0550: I put Noah back in his crib, where he proceeds to babble, whine, and practice balancing on all fours.

0630: He's obviously not falling back asleep. Ross gets him out of his room.

0700: I turn on the solar lamp in the kitchen to wake us all up and feed Noah some big kid food for breakfast-- strawberry applesauce with oatmeal. Yum!

0730: Play play play. This kid is on the move! He can scoot backwards, roll everywhere, and army crawl. Be still my heart :-)

0800: I dress and swaddle Noah, and then feed him. He's slowing down, so I'm hoping he will fall asleep after eating. Lay him in his crib "drowsy but awake" like all the books and well-meaning friends say to. He proceeds to whine, wiggle, and fuss for 45 minutes.

0900: I take him out of his crib and we play some more.

1000: Try to get him to nap again. Come up with some convoluted combination of rocking, feeding, listening to Gregorian chants, and putting a vibrating disc from the Rock 'n' Play on Noah's back. Whatever the magic is, it produces heavy eyelids which I haven't seen in ages! He also lets me give him the pacifier, which he rejects 99.5% of the time.

1020: Noah falls asleep in my arms (this NEVER happens). I hold him for 20 more minutes until he stops wiggling, and my arm goes numb.

1045: Successful transfer to the crib!

1100: I eat lunch. I'm famished! Also move laundry and do PT exercises.

1200: Marvel that Noah is still asleep. Watch an episode of the Mindy Project.

1245: Holy crap. If I'd know this was going to be a legit nap, I would've started on my to-do list right away! Feel like it's too late now. Move laundry again. Eat a bowl of cereal. Pick up the book I'm reading.

 1315: Noah is up. I feed him.

1430: Give Noah some pureed green beans. He's happy to be eating solids after stopping for a week when he was so sick!

1445: Nurse him again in hopes of another nap.

1520: Rock him again. He just takes a 15 minute catnap in my arms this time.

1600: Play inside, and then outside for a bit. Noah isn't so sure about the wind and the bright sun!

1710: Baby bath, aka water aerobics. Took this picture in the 0.5 seconds it felt safe to not have my hands on this wild monkey, lest he submerge himself!

1730: Nurse

1800: Rock a very overtired baby until Ross comes home and takes over.

1900: Baby is asleep! I eat dinner, shower, and pump.

2020: Ross and I are in bed, exhausted. We watch an episode of Downton Abbey before going to bed.

2100: Lights out!

2240: Noah is awake. Feed him. We all go back to sleep until 0230 when it starts all over again...