Elin's hearing

Thank god for newborn hearing screens. Elin had her newborn hearing screen the same morning we were anxiously waiting to find out whether we would be leaving the hospital to take her home. That morning we had received the bad news that her platelet count was low and we might not be able to go home as we had expected. We spent the whole morning watching nurses and doctors draw Elin's blood again and again as the platelet test samples kept clotting in the lab. It was an excruciating wait to find out if our baby was healthy enough to leave the confines of the hospital. During that same time we had Elin's newborn hearing screen. The woman tested her once, she failed, so she tested her again. And again she failed. As not to alarm us she said that many times babies that are in the NICU fail their tests only to be successful later. BUT we needed to see an audiologist to make sure everything was fine in a few weeks.
Shortly after hearing this news we received the fabulous go ahead to leave the hospital. Both Myles and I easily dismissed the failed hearing test and weren't concerned about her hearing upon leaving the hospital. I did do as I was instructed and set an appointment for Elin to see an ENT (ear, nose and throat) doctor and an audiologist.

On August 30th, Elin and I went to Swedish Issaquah for her appointment. I was completely unprepared for what was about to happen. I had convinced myself that Elin could hear just fine and her reasons for failing the screen in the hospital were simply the result of her traumatic episode and subsequent treatments.  The ENT checked her out and said there was nothing physically wrong with Elin's ears. Next we went to see the audiologist for the testing. Elin was supposed to sleep during the tests so they can measure the brains response to sounds they emit through tiny earbuds in her ears. Elin always sleeps most the morning but do you think she slept one wink during that 2 1/2 hour appointment. Nope. I was stressing trying to feed her, comfort her and get her to sleep so we could get on the with the tests and find out everything was fine. By the end of our time Brenna- the audiologist- said she wanted to discuss the results she was able to get with me. What came next was the biggest shock of my life. Brenna very calmly informed me my child had severe hearing loss. WHAT? COME AGAIN? It was as if someone told me I couldn't hear- I just couldn't believe it. She spent more then a 1/2 hour explaining to me what this meant and how I should proceed. I think I took in about 10% of what she was saying because I was in such shock. She handed me a large binder with tons of information in it about deaf children and sent me on my way.

I had gone into the appointment with no hesitation- no worry what so ever about Elin's hearing, now that seemed so naive of me. Out child would need special help her whole life.
Since Elin didn't sleep the results were sketchy. We knew she had poor hearing but didn't know what degree of hearing loss we were dealing with. In the most serendipitous of events my Uncle was in town that same week from North Carolina and he is a retired audiologist. The timing was amazing. We went to the cabin that weekend with my parents and my aunt and uncle. Jim (my uncle) spent hours explaining the results of Elin's tests and answered our multitude of questions. He simplified the world of hearing and hearing loss so well we felt we had a good grasp on what was to come and whatever the follow up tests would bring. We knew Elin could possibly need hearing aids or cochlear implants if her hearing loss was profound. He also informed us that she would most likely develop language and be able to speak and attend normal school. Thankfully we caught this at such a young age that she will be able to progress with her language development on a somewhat normal path. We will need therapy and it will be a challenge but Elin will live life like a normal hearing child with all our best effort.
Yesterday we had her follow up appointment at Seattle Children's in Bellevue. Brenna, the Swedish audiologist believed we would get the best care at Children's since they specialize in pediatrics. I kept Elin awake and hungry several hours before her appointment but even with a full tummy and totally exhausted she still fought sleep. Myles, with his amazing touch and swaddling technique, was eventually able to get her to rest. We were able to get about an hour of sleep testing done and now have a clearer picture of the extent of her hearing loss. She has severe hearing loss in her right ear and moderate hearing loss in her left ear.  She will wear powerful hearing aids on both ears which will help bring her level of hearing up. She has an appointment set for November 13th to have her hearing aids fitted. Until that point we are speaking to her normally and focusing on the left ear.

This is the simplified diagram of Elin's hearing from the results we have right now. The red is the right ear and the blue is the left.

When she gets her hearing aids there will be an adjustment period for her. As you can imagine it will be an intense change to go from the muffled unintelligible sounds she is used to to a louder volume and clearer noises. We will leave them on for however long she can tolerate them and always remove them when she sleeps. The trick will be getting her to keep them in when she is awake and batting at them as she gets older.

Elin with foam molds in her  ears for hearing aids

Unfortunately we didn't get all the testing completed during this visit either so I am returning next Monday to hopefully finish the process. With the results of these tests they are able to program and fine tune her hearing aids to the correct volumes and frequencies for her particular hearing levels.
We are being assigned a Family Resource Coordinator to help us navigate this new realm of infant hearing loss. I will update the blog as we make headway and start figuring out how to approach her hearing loss.
For the time being we will be learning some sign language and spending time cuddling and loving our special girl.
I was sent this link from a friend and I think it really encapsulates how we feel right now. Please feel free to read it.
http://www.thecainfoundation.com/bor/site/TheFoundation/WelcometoHollandPoem/tabid/99/Default.aspx