Sunday, March 25, 2012

Evelyn's Ears

My daughter, Evelyn Hope, was born six (long!) days late but fortunately she came on her own time. She had a rough first day of her life which involved just about 22 hours in the special care nursery. I think one of the hardest things I've ever had to do is be without her for that first day. After she was born I held her for just a few minutes, just long enough to look her over in complete awe, and then they whisked her away with her daddy to the nursery. The nurses in the special care nursery said she was a "spitfire" and they were right. She's been a tough little thing ever since day one and I have a feeling she'll get even tougher as the years go on, following big brother Liam around.

In North Carolina all newborns are mandated to receive a newborn hearing screening before being discharged from the hospital. Evelyn failed her first one. And her second one. And her third one. We were discharged with instructions in hand to bring her back to the hospital in three weeks for screening number four. No big deal, right? I knew she would pass it and that would be that. Well, she referred (it's technically not failing as it's not a test, it's a screening) yet again and was sent to an ENT/audiologist office about a month later. By this point I was a tad concerned but there was no way our daughter had any problem hearing. Looking back, this may have been when the denial started. I told everyone that, you know, those ear probes they put in her ears kept falling out! Of course she couldn't hear the sounds they were playing when the probes weren't even in properly. Her ear canals were just too tiny for their probes (not like they don't do it every single day to other babies!), no way my baby had anything wrong with her.

Two days before Christmas I took Evelyn to her appointment with the audiologist. The type of hearing test they do for babies is called an auditory brainstem response, or ABR for short. A baby has to be sound asleep to get the best results because it measures brain activity. If a baby is awake there's no way to tell if his/her brain is reacting to the sounds being played in their ears or other stimuli. The audiologist put two small electrodes on Evelyn's forehead as well as one on the back of either ear. Then she put tiny little ear probes in Evelyn's ear canals, made sure everything was working properly, and then we waited until she was asleep enough to start the testing. The audiologist played a series of clicks that were different volumes (decibels) and frequencies (hertz) and the computer recorded Evelyn's brain's response. The whole process takes quite awhile because if your baby wakes up at any time during the test, or even if he/she isn't in a deep enough sleep, the test has to be stopped until they're snoozing again. After about two hours the audiologist got the results she needed for one ear and we scheduled another appointment for the other ear.

At the end of the second appointment it was clear that Evelyn had what is called bilateral mild-moderate sensorineural hearing loss.
Bilateral - Affecting both ears
Mild-moderate - The level of hearing loss. There is normal hearing, mild hearing loss, moderate hearing loss, severe hearing loss, and profound hearing loss.
Sensorineural - The type of loss. It is either conductive (caused by ear wax, fluid in the ears, allergies, etc) or sensorineural (basically permanent).

The next step was making an appointment with the pediatric ENT and audiologist at UNC.

During our first appointment at UNC the audiologist did another ABR as well as another kind of test called an OEM. However, because Evelyn kept falling in and out of sleep during the tests they recommended bringing her back for one more try. They suggested we do an MRI to look for a possible cause for her hearing loss and while she was asleep for that they could do another ABR and get the best results. So on March 12th we arrived at UNC at 6:30 in the morning for what we called Evelyn's big day. We were nervous but so anxious to get it all over with! After months of testing and waiting we were finally going to get the ball rolling. And we did! Evelyn was officially diagnosed with bilateral mild-moderate high frequency hearing loss and her very first set of hearing aids were ordered that same day. Unfortunately, the doctors are still unsure of what caused her hearing loss to begin with but that is not uncommon. The MRI showed a little bit of extra fluid around the parts of her brain (we all have fluid there, she just has a tad more) so the ENT recommended we do a blood test to test for a congenital infection called CMV (cytomegalovirus). Until I started my research on hearing loss a couple of months ago I had never heard of this infection and I still don't know much about it. I suppose if the blood tests come back positive for CMV we will learn more about it. As for now, we wait just a bit longer for those results as well as her hearing aid fitting. She will be fitted at the end of April and we're so excited!

Because this post is already long enough, I will save some other information for another time. In my research I have found some great websites and other resources for hearing loss in babies and children. Also, our area has great organizations that offer early intervention services as well as support for parents. We're incredibly lucky to have access to so much information and support so we won't feel quite so alone in this journey. It will be a journey alright, and it's just beginning. I hope you will follow us!

Tuesday, March 20, 2012

the obligatory intro

Having a totally blank blog is kind of intimidating. I'm not quite sure what to start with and I'm honestly not sure where I want to go with this blog. I know one thing I would like to share is my experiences with my daughter's recently diagnosed hearing loss. Lately I've been learning something new every day about how we hear, hearing loss, and how important it is to diagnose as early as possible. If it wasn't for the mandatory newborn hearing screening at the hospital we wouldn't have been able to start this journey so early!

In addition to my four month old daughter, Evelyn, I have an almost three year old son named Liam. My kids are the absolute light of my lives; I don't know what I did to get such beautiful, smart, happy, healthy kids but I am so grateful! I also have a furbaby, a solid black cat who goes by Slinky. We've had her for just about four years now! We also had a lovebird, Corona, who passed away in December 2010. She is buried behind our apartment building, under some tall trees, and is thought about often. My final kid (just kidding!) is my husband and better half, Dan. We've been together since we were 18 and 19 and have definitely done some growing up together!

Some other tidbits about me -

I'm a working mom who would much rather be a stay at home mom. I'm not a great cook but I've gotten a lot better since my days of not even being able to cook Rice-a-Roni. My someday goal is to feed my family almost all home-cooked, minimally processed food. Our kitchen is looking a lot better these days, so I'm confident that I'll get there slowly. Once my son started eating table food I took grocery shopping a lot more seriously. I used to love buying Doritos, Hot Pockets, and Oreos, but I absolutely do not want my kids eating that junk! It's tasty, I fully admit (which is why I sneak it during nap or bedtime!) but I want to set a better example for my kids and teach them how important it is to make healthy food choices. My son eats french fries, cake, and chips, but not on a regular basis and rarely here at home. Right now I'm sort of in the in between stage of feeding him processed food but a fairly healthy diet. He eats almost all fruits as well as cheese, peanut butter, some veggies, eggs (only scrambled), low sugar cereals like Cheerios, lean meats, and is only allowed (minimal) milk and water at home. He definitely loves sweets like cookies and cake and we don't deprive him of them. I hope that we're teaching him it's fine to eat yummy treats like that but to treat them just as such - as treats - and not part of a daily diet. I'm sure part of this blog will be me exploring new recipes and meal/snack ideas for my family (I have tons on my Pinterest!) and learning more about how to teach my kids healthy eating.

Since I'm a busy, working mom of two little ones, I don't get a lot of "me" time. The "me" time I get is basically time I could be spending doing something productive (like laundry, dusting, or battling the constant clutter that is our apartment) but instead choose to veg out on the couch or at the table with the tv on and my favorite websites lined up in tabs on my computer. Hey, a mommy needs to relax, too! I have also dabbled in sewing here and there but right now my sewing machine is in the closet! I need more room, better skills, and probably a tad bit more patience. One day, one day. Maybe when I become a stay at home mom and my kids are in school. Hm, might have to run that by the hubby...  ;).

As for now, I'm having a hard time juggling all my responsibilities as it is! I envy those moms, working and stay at home, who seem so put together. Clothes laid out and lunches packed the night before, absence of the inevitable laundry monster in the corner of our bedroom, permanent vacuum lines on the carpet, and maybe even a little garden outside that is always properly watered. Ah, a girl can dream...