The Greene Story:  Faith, Love and Beauty

By Katie Greene, Western Slope CO Parent Guide

An Unexpected Journey: Bella Alane
Bella arrived on September 6, 2008 a mere six pounds, two ounces and 18 inches long. She hardly cried, and my husband and I both marveled at how quiet she was. She was absolutely perfect. I was absolutely amazed with her. Emma, her older sister, was such a screamer; I didn’t even know what to think of such a quiet baby. I awoke to the sound of her trying to latch onto her blanket in the middle of the night. She slept, she ate, and she hardly ever cried. Not for a messy diaper, not for hunger, not even when she was in danger of her big sister! I was in awe of her and just relished her beautiful little spirit. She matched, in every way, the name we chose for her.

Screens, Leads, and More Tests
When they did her infant hearing screening at the hospital, I didn’t remember Emma having one, and asked if it was normal to have the screening. My husband assured me Emma had one also. Bella didn’t pass her screening, so we had to bring her back another day to administer the test. She again failed, and the nurses told us their machine was quite unreliable, and often reported negative tests. We had not a care in the world. Our baby was absolutely perfect. We were given an appointment with an audiologist in town, and took Bella for her first test there about a week later. She failed that test also. So, the audiologist tested her middle ears, which passed, and informed me that we would have to do a more extensive test called an ABR for further information. So, we scheduled that for another week later, and as I left her office, I decided that I needed to prepare myself that she might really be deaf. And then I told myself I was being paranoid. I called my husband and told him the results and we both decided it would be best to prepare ourselves that Bella might really be deaf until a definitive result that told us otherwise. So we did. We prayed for strength to accept whatever happened. Our families, however, prayed Bella would pass her tests, which made me angry because I wanted to be able to accept Bella as God sent her to us, not to ask Him to make her how we thought she should be. I was grateful for a beautiful, happy, healthy baby, and I didn’t think I could be a good Mom if I wished my baby were different.

The day of her ABR came, and the leads our audiologist had were all too big for Bella’s tiny little head, and wouldn’t stay on, and caused Bella to keep waking up. So, she asked if we would be willing to travel over the mountains to Farmington, NM to the hospital there where they had smaller leads. We decided instead to travel to Salt Lake where we had family and I was already planning a trip to anyway. So, we made the arrangements and off we were. I should clarify that off the girls & I were; my husband traveled for work, and was in southern Wyoming at the time, so we decided I would take the girls by myself and keep him updated by phone.

The Longest Trip
We headed off to our appointment, and when we got there, again, the audiologist had leads that were too big, and Bella had a hard time holding still. He called and made an appointment for me with Primary Children’s Hospital at a clinic they had in Bountiful, UT. So, we extended our trip, and prepared for yet another hearing test. The day of Bella’s ABR arrived again, and we made the trip to the clinic where they finally had leads small enough for little Bella, and were able to successfully test her. The audiologist sat me down and very gently began to tell me that Bella had a bilateral profound hearing loss. I felt like I already knew that and was relieved that someone could finally give me a clear answer. She asked me how much information I wanted, and I told her-“Give me everything you have.” I left her office with binders full of information about what hearing loss is, what options children of hearing loss have, where to begin, what to do, and information about hearing aids and cochlear implants. She prepared me for the financial burden to be expected, and I was completely overwhelmed and completely at peace all at the same time. When I called my husband immediately and told him the news, he was surprisingly calm, but definitely sad as well. Because we had prepared ourselves to hear that, it didn’t feel like such a surprise. I then called my Mom, and cried for the first time. I knew this was going to be hard, but I knew that we had been prepared for this also.

We had to extend our stay again, as Bella had to have a second appointment to confirm the first test before we could go home. All in all, we were away from my husband for 2 weeks. It was the longest 2 weeks of my life! On our drive home, I completely fell apart. I just wanted to be with my husband, to grieve with him, to process all of this together with him, and to talk about what this meant for our family. When I got home, we sat down together, and the first thing he said was “Do you think this means Bella didn’t hear me when she was in your womb?” That was when my heart truly broke because I knew that that was his way of connecting to her during my pregnancy and that had been taken away from him.

“Your Family Should Move”
We immediately began looking for services for Bella and trying to figure out where we were supposed to go with all of this. So, we saw an ENT, and he told us we should just move to a larger metropolitan area because there were no services here for our family. What a slap in the face that felt like! My husband and I both agreed that was not a feasible option for us at that time, and looked elsewhere for help. We were finally connected with CHIP and a Co-Hear who gave us an abundance of resources! We decided we would begin sign lessons and give Bella cochlear implants after she turned one. We wanted to give her access to as many communication options available, and felt that by doing both sign and oral, she would have that. We began sign lessons last January, and have continued to have them every week since then. Emma has been able to pick up sign and communicate with her sister in a way that we never anticipated!

Our major concern about staying in Cortez was that there were no implant centers close to us, and the cost of travel alone to provide that would be a significant burden. We were then connected with Janae Biard, who was planning on returning to Cortez after living in San Diego. She was our connection and saving grace to be able to stay in Cortez as she could do all of Bella’s mapping and aural therapy after she received her implant. She was an answer to our prayers! We would only have to travel for Bella’s surgery, and maybe the first few appointments before Janae could take over her mapping services. We chose the implant center at Primary Children’s Hospital in Salt Lake since we had already a connection with them, and because it was a shorter trip for us than to Denver. After months of inquiries with our insurance company, Bella was approved for bilateral cochlear implants. Bella received her first cochlear this past September, two days before her first birthday, and then she received her second one two months later in November. Bella has one more appointment in Salt Lake in March before Janae will be able to take over her mapping, and we are really looking forward to that!

Accepting the Gift
We continue to use sign for Bella, as we want that to be not only a part of her life, but we want her to know that is a part of who she is. Bella’s journey with her cochlear implants has been a struggle. She has resisted wearing them from the very beginning, and because she had them sequentially instead of simultaneously, it has been a very difficult journey in getting her to wear BOTH of them at the same time. Bella did wear hearing aids prior to her implants and while she wore without much difficulty, she has absolutely no residual hearing. The aids offered no change in her life, and therefore, no help in preparing her for implants. Needless to say, her exposure to sound has been slow, but we are hopeful that as she explores the sounds all around her that she will want to wear them more each day.

Since this is just the beginning of our journey with Bella, there is much more to come, and we look forward to it with open arms—come what may.

Because we live in a rural area, as you all know, it can be difficult to feel connected to other deaf individuals/families. It is my goal/desire that our region can become better acquainted with one another so that we can provide support, strength and a better sense of community as we get to know one another.