Craig on our journey with Ava

I remember when we found out we were having a girl. I cried. Overjoyed at how God answered the prayer of my heart. A little girl to take to Daddy-Daughter dances. A little girl to treat as my “princess.” A little girl to shower love an affection on, modeling for her the love our Daddy, God, has for us. 

Then came the birth. The moment I saw her arrive, I cried. Again.

She looked so healthy. She came full-term (at 38 weeks). She had the most beautiful full lips and complexion. My little girl had arrived! Ava Laine Slezak. A name meaning: “A life that shines brightly.” God is so good!

What I didn’t expect was the weeks, and now months of difficulty that has come with this precious gift. 

First was the issue of feeding. Ava had difficulty in “latching on” and would scream at Laura when she tried to feed her. It was so hard for Laura. Actually, it was a really trying time for us all. Ava lost around 10 ounces of weight, which doesn’t seem like much, but when you are only 6 pounds to begin with, 10 ounces becomes even more critical. We had to start bottle feeding her. This just made life even more difficult for Laura, who now had to find time to pump between feedings. Sleep was disrupted. We were overwhelmed.

(As a man, I can’t think of anything more paralyzing than to watch someone you love suffer so much stress and know there is nothing you can do to fix it.)

We sought some help from an oral specialist. One of the best around. She gave us some oral exercises to work with Ava on, in order to strengthen the muscles in her mouth. We seemed to get some results but nothing like what the specialist had suggested. 

I think back to the really long nights with Elijah, our firstborn. I remember that his fussiest hours were usually between 4-6am. I also remember that, at some point around week 6, I was ready to throw in the towel- not sure I could endure another night of sleep broken up by a fussy baby. That early morning when I went into Elijah’s room to console him, I was greeted with eye contact and a smile that seemed to say, “I know who you are!” My heart melted! It suddenly became worth all the nights of interrupted sleep. My son recognized his daddy.

(Okay, we can get through this. Just hold out until around week 6 when Ava will start recognizing me and smiling; that will make it worth it all. Just work towards that goal; it will all be okay.)


Week 6 came. Then week 7, and 8… No such familiar smile. 

I began to worry. I started having suspicions that Ava couldn’t hear, but who could I tell? Laura was at her wits-end with pumping, and feeding, and broken up sleep. We were already worried about her mouth and its lack of muscle strength- and what that would mean for her speech development. But something else was brewing. Slowly my worry and concern came to the surface and, one Wednesday morning while Laura and I were in the kitchen, I finally said:

“I don’t think Ava can hear us.”

“I don’t think so either,” Laura responded. 

She felt the same way. Both of us had the same concern: Ava was not responding to our voices, or any other loud noise; noise that used to startle Elijah when he was a baby.

Our 4 month check-up with the pediatrician was scheduled the following Monday and our pediatrician suggested that she take a look at Ava first, before sending us out to an Audiologist. Those 5 days seemed like an eternity, but they finally came, and as we suspected: something was wrong.

We were able to get to an audiologist later that afternoon and, through an otoacoustic emissions test (OAE), we found out that Ava can’t hear. A month later we were to go in for an auditory brainstem response (ABR) which would measure the frequencies that Ava can and cannot hear, as well as the decibel levels to which she an hear.

The results came back and Ava has moderate Sensorineural hearing loss.

Moderate. Praise God that it it is not severe or profound! This is treatable with hearing aids. She will be able to hear us tell her how much we love her. She will get to hear music; a gift that means so much to mommy and daddy. And, since we’ve caught this early enough, and with the help of early intervention, she should be able to catch up with language development. We don’t yet know the cause of her hearing loss, or if it could eventually get worse. We are just taking this one day at a time.

Now onto what we hope is the final obstacle: her strength. Ava is weak. What we thought was only an issue with her mouth, seems to be an issue with her whole body. The fact that she is small doesn’t necessarily mean anything. Laura was (and still is) small. But Ava cannot hold herself up on her own. We have been to a Neurologist (at 4 months) who didn’t seem to think anything out-of-the-ordinary was wrong with her (whew!). But we’ve also been to a Geneticist (last week – at 6 months) who has ordered a list of tests (blood work and urine samples) to see if there is any cause to the low tone. 

In December we will be going to an Ophthalmologist for Ava’s eyes (she has a stigmatism and trouble with her gaze), and we’ll take her back to the Geneticist and Neurologist for follow-ups on her tests. 

We appreciate your prayers during this season of life we are in. I thank you in advance If I (we) am (are) slow to respond to messages, texts, emails, calls… Life has gotten a bit more crazy as of late. Thanks for understanding!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s