Wednesday, March 3, 2010

Opening Up

Last night was kindergarten registration. We took Norah, who is almost 5 and she was so excited. I was excited, but mostly scared. Scared because I can't control the future, the world, the noises around her, I can't make her hear everything that I hear.
Norah was diagnosed as hard of hearing at 3 1/2 years old. Norah wears hearing aids.
Some of you may be wondering how we could have missed something so important as hearing, but we were so focused on Norah's brain development, Norah's milestones declaring her normal, her tone, and being seizure free and off seizure medication. The fact that she talked less than her sister and was naughtier than most seemed like little things in the trade off.
Norah was a VBAC gone terribly wrong. If you don't know that term I'll let you look it up yourself. My pregnancy was uneventful, my prenatal care was 2nd to none, and we were financially ready for an addition to our family. What we didn't count on was poorly managed labor and delivery and a helicopter ride to the Mayo Clinic for a baby with Apgar scores of 1. We certainly didn't plan for the seizures that followed an the scary diagnosis of hypoxic ischemic encephalopathy. Statistically Norah is a miracle that she is alive. More miraculous is that she is not severely disabled.
When Norah was 3 we were told our naughty girl was by all pediatric neurologists criteria beautifully, perfectly normal and she had passed her newborn hearing screening. Why would we suspect anything?
When we went to the MN mandated preschool screening Norah did exceptionally on all the academic testing. Then came the hearing tests, she raised her hand for some of the beeps but after awhile decided she was bored and started misbehaving. I sat lamely next to her trying to coax her to raise her hand when I (without headphones on) could hear the beeps. Why was she being such a brat? The person performing the test suggested we come back in 6 months and retest her when she was more mature.
At this point I took matters into my own hands, I wasn't waiting 6 months for my miracle child to pass a hearing test. The first pediatrician told me she must have fluid on her ears. We should give her an antihistamine. We tried that for a week and I came back. Still Norah was awful after the first few beeps. The pediatrician said we should take her to an audiologist, so I made an appointment. When I went to the appointment I was fully educated on ear tubes. I was completely blindsided when the audiologist very flatly told me "Your daughter has severe high-frequency hearing loss and will need hearing aids." Then she told me to make a follow up appointment and sent me on my way.
After some stops and starts we finally found our way to Dr. Jennifer at the U of MN. She changed our worlds from Norah on up. Pediatric audiology is a specialty I never knew existed, but am thankful for everyday.
The day Norah began wearing hearing aids was the worst day of my life. She was getting a lot of new information that she wasn't sure she wanted. She must have pulled them out 500 times and I put them in 501. I was crying she was crying. The next day we were down to 200 times, then 50, and on the fourth day she told us "I think I love my hearing aids." They have been in ever since except bedtime.
Sometimes at bedtime, when Norah is asleep I go into her bedroom and hold her. I look at her little perfectly formed ears without their hearing aids and I feel sad. I feel sad for her, I feel sad for me. I feel afraid for the future and I feel angry. Angry that her hearing loss was preventable. The 15 minutes after her birth where she wasn't breathing damaged her ears and I didn't know and I couldn't stop it.

Note to readers: Thank you for letting me share this with you. It is hard for me to write, but I am hopeful for Norah's future and need to get this stuff out of my system for my own future.
We have a wonderful family and support system. Norah has amazing teachers and a world class audiologist. Thank you for reading.


TerriRolland said...

Hi. I am Ally's Grandma. I saw your post on Anna's Facebook and decided to read it. I have read it before and usually laugh so hard I cry. This time I cried but for different reasons. I almost pictured Anna writing that post. Thanks for sharing.

Erin said...

Sheridan, I also found your blog from Facebook and I love reading your posts. Thanks for sharing your story and your fears.

Erin Morrow

katrine (kat) said...

Hey Sheridan, I LOVE your posts and blogs, I have considered writing a blog myself. I love hearing more about your family and this was an amazing story. I like that we are able to keep in touch, we should definitely get together sometime and talk.

Dr. Jennifer =) said...

Just so you know... I read this whenever I need a little pick-me-up! Thank you for being so kind. I feel so fortunate to work with such an amazing little girl and her family! I will forever think of her as I put on my "costume" everyday and enter into the dark closet where I use my magic to makes earmolds with sparkles.