Saturday, February 27, 2010

Audrey's ear

I haven't really felt much like writing about it until now ... I think I needed a little time to process everything.

Short story: Audrey has a mild-moderate hearing loss in her right ear -- which is called unilateral sensorineural hearing loss -- due to a Mondini malformation. Basically, a normal cochlea should have 2.5 turns, and hers only has 2.

Longer story: She failed two hearing screenings in the hospital before we were sent home. We were momentarily upset until the nursing staff and many friends/family told us that she probably just had fluid in her ears from birth and that we shouldn't worry about it. She did need lots of suctioning when born, so we told ourselves it was a non-issue.

We were put in touch with First Steps, which is Indiana's version of the early intervention program that every state has, and scheduled an appointment at a local hospital with an audiologist when she was around 3 weeks old. There she had an auditory brainstem response (ABR) test done, which is actually kind of cool. Electrodes are placed on each side of the forehead and behind each ear and then sounds at various levels are played into the ear via a little earbud. The brainwaves tell the audiologist whether the sounds are being heard or not. I sat and held Audrey as the test was conducted and tried to interpret the brainwaves on the screen for myself. I noticed that the audiologist was doing a bit of sighing and clicking at one point and started to get worried. Sure enough, the test showed that she does indeed have a hearing loss in her right ear (but the left ear was fine). She can hear up to 50 decibels in the right -- normal conversation would be at about 50 db -- but nothing below that. I was given a book titled "workbook for parents of children who are newly identified as hard of hearing" and tried not to cry until I got in the car and called my husband. Hard of hearing. I knew it could be worse, of course, but no one wants their newborn baby to have anything wrong with them.

The audiologist said she strongly recommended that Audrey be fit for a hearing aid so that she didn't suffer from any speech delays. That didn't go over very well with me at the time -- all I could picture was a big, clunky device that would make her a prime target for teasing by her peers in school. She also suggested that we take her to an ENT for follow-up, which we did.

The ENT told us that there are several syndromes, all very serious and some even life threatening, that accompany Mondini malformation in children. After reviewing Audrey's bloodwork from her hospital newborn screening, he told us she didn't appear to have any of those problems. Obviously, that was a relief. The ENT told us we should have a CT scan done so that we could rule out a couple of different anatomical things, one being large vestibular canals that could result in instant and permanent hearing loss in both ears should she ever have a head injury. He also mentioned having her checked out by a pediatric opthalmologist, because kids with hearing loss can also often have eye problems as well.

So about a week later, I found myself back at the hospital with Audrey, this time in the outpatient surgery department. She was going to have to be sedated with general anesthesia, because apparently you have to be entirely still for a head CT or they'd have to keep starting over. My husband stayed home from work that morning to watch Olivia, so I had to deal with it all on my own -- the screaming, hungry baby who wailed the entire way to the hospital because she was hungry (no food 4 hours prior to test due to anesthesia), and the worst part, watching her be sedated via a tiny pink little gas mask that I later learned was scented like cherries. The anesthesiologist assured me that yes, the way she was breathing was normal and that she was already under even though her eyes were open. He asked me if I wanted to kiss her, and I was like, "Well, yeah!" And then it hit me -- he wanted me to leave the room. I think that was my hardest moment as a parent so far: walking out of the room pushing the empty stroller with her car seat attached and turning around to see my tiny baby in her pink and brown striped PJs on this huge table with an even bigger CT machine nearby. A wonderful volunteer distracted me with a friendly stream of chatter as he walked me to the waiting room desk, where I checked in and was given a pager. I realized in my fog that it was the same waiting room where I sat and waited while my mom was having her knee surgery several years ago.

I was thankfully only away from her for about 15-20 minutes, just enough time to scarf down a bagel, call my husband, and call my mom. A nurse came to take me to the recovery room, and I was relieved to see that she was the only one there (aka, no adults coming out of anesthesia and vomiting everywhere). I held her for a few minutes while giving her a bottle of pedialyte, and then they wheeled us -- me on the bed holding Audrey, like we were in some sort of hospital parade -- to another room where we waited for a nurse to take out her IV. I expected her to be pretty out of it for the rest of the day, but she handled it like a champ, napping only briefly in the car on the way home and then getting back to her normal schedule pretty much immediately. Anesthesia is one of my biggest fears, so I was so happy that she came through it ok and with no side effects.

The ENT called about a week later and told me about the Mondini malformation diagnosis. She doesn't have the large vestibular canals, so we don't have to worry about keeping her out of sports. And he said that while he can't predict the future, he doesn't think we need to worry about her hearing getting worse in that ear. Fairly good news all around, and I was happy that we at least had a reason for the hearing loss -- we were told that most of the time, the CT doesn't show anything and you're just left to wonder.

The pediatric opthalmologist was great and said she looks perfect; we go back when she's around 1 for another check and then he said he won't need to see her again if all looks good.

Now we're in the process of getting her hearing aid. The First Steps program pays for all things hearing related until she's 3, which will be a big help. Hearing aids can cost over $1000, and insurance doesn't cover any part of them (which I find ridiculous). She'll be wearing a behind-the-ear (BTE) style that will connect to a plastic piece that will go in her ear. I was told we could pick any color we wanted for the ear mold, but I went with clear with pink glitter to match the baby pink metallic BTE piece. It's actually pretty tiny and cute as far as these things go ... and you can be sure that I'll be posting pictures of her modeling it as soon as it comes in sometime in mid-March. The ear molds need to be custom fit, and the audiologist said that sometimes the kids will outgrow them between the fitting -- where they squeeze pink goo into the ear and let it harden a bit, somewhat like how they do dental impressions -- and when they come back from the lab about 2 weeks later. We'll also be working with a treatment team that includes a parent advisor who has a background in childhood/deaf education and will help us keep an eye out for any speech delays that might occur as a result of her hearing loss. Hopefully that won't be a problem, but you never know.

Saturday, February 20, 2010

meet mr. ogg

Audrey is a baby of many nicknames. We started out calling her Oggie, because that's how Olivia pronounced her name when we first picked it. Then she called her Ah-Dee, and now she can pronounce her name properly. But the nicknames have stuck around.

In the sleepless, slap-happy, delirious newborn days, we started calling her Oggmeister or Oggmeister 3000. Olivia heard the "ogg" and "meister" parts and switched them in her head, so she was calling her Mr. Ogg. As in, "Oh no! I hear Mr. Ogg crying downstairs!" We found it so hilarious that we've started calling her Mr. Ogg now as well.

So our dear Audrey may not ever learn her real name. She's:

mr. ogg
butter bean
butter biscuit (I have no idea how these last two started)

You should see the looks we get in public when we refer to our kids as OE and Oggie/Mr. Ogg.

2-year and 2-month appointments

We had the pleasure (hahahahaha) of taking Olivia and Audrey to the pediatrician at the same time for their 2-year and 2-month checkups on 2/8. They'll probably have a few overlapping appointments because they were both born on the 7th (Olivia in February and Audrey in December).

Audrey handled it all like a champ, even smiling through some of her appointment. Olivia, on the other hand? When we were still in the car and turned onto the street where the ped's office is located, I heard a shaky, "Mama? Mama?" from the back seat. As we neared the building, she became much louder and demanded to "go home now! No doctor!"

The crying started as we pulled into the parking lot and continued in the waiting room. The receptionist said, "She's two? Just wait - it sometimes is even worse at three!" Oh, good! Something to look forward to!

Audrey was 10 pounds 2 ounces (40th percentile) and 22.5" long (50th percentile). Her head measured 39 cm, which, according to this growth percentile calculator, is above the 95th percentile. We apparently make thin kids with giant heads!

Olivia weighed in at 26 pounds 11 ounces (50th percentile) and is 36" tall (93rd percentile, which I think is the lowest she's been for this stat so far).

They both got shots. Olivia cried harder while the doctor looked in her ears than she did for the vaccines. Sitting on the scale? An exercise in torture. Poor girl. She seems fairly traumatized by the visit, too, because for the last few nights she's been crying "no doctor! no doctor!" after we put her to bed. :(

Monday, February 8, 2010


It's hard to believe, but miss Olivia turned two yesterday! We had an eventful weekend, with a big snow the night before her much-anticipated Dora party (causing most guests to cancel - but we still had a wonderful time with the group who did come) and the Superbowl on her birthday, which the Colts sadly lost. I have a feeling her sleep schedule is going to be off for days ... she woke up at 6:30 this morning, which I don't think she's done since she was a baby.

Happy birthday, sweet girl!

Thursday, February 4, 2010

funny girl

Olivia has only been up for about 20 minutes this morning, but she's cracking me up already.

While standing in crib: "Mama, penguin jammies keep OE warm and toasty!"

After telling her it might snow this weekend: "Oooooooh! OE having a DORA PARTY! Blow out da candles!"

Telling her that she'll get to have a birthday cupcake: "Mmm! Cupcake very tasty!"

Here's a quick video of her talking about her Dora party. I also managed to get her to say her nicknames for Audrey (baby Oggie, Mr. Ogg):

Wednesday, February 3, 2010

some days are better than others.

Today hasn't fallen into the better category so far. It's just past noon, and:
  • We're all still in our pajamas.

  • Olivia discovered how to turn the knobs on the gas stove (note to self: get some childproof covers ASAP before she burns house down)

  • Audrey is having a bit of a fussy day, probably compounded by the horrible night's sleep we both got last night. Recliner sofa is great to sit in ... to sleep on? Not so much.
I need to go to the grocery store, but after the Great Target Solo Run Fiasco from a couple weeks ago, I'm too gunshy. Besides, how exactly does one go about shopping when their cart is filled to the brim with kids and there's nowhere to put the food? I took my mom on a trip to Target last week, which was insanely helpful. Sadly, I don't think she wants to be my shopping assistant every day of the week. ;) I'll consider the day an accomplishment if I can get myself dressed and both kids into the car to drive to the ATM to deposit a couple of checks.