Audrena is our third child. She was born at 39 weeks via a repeat c-section. When she was born, the OB performed the surgery, and our family doctor, Dr. C., was present as the pediatrician. Both doctors said she was little. They guessed her to be about 6 1/2 pounds. Then she began to cry, and our family doctor said, "She's small but mighty!" Well, Audrena had them fooled. She was not all that small, at 7 pounds 8 ounces.
Audrena's newborn hearing screening came back referred on the left ear. Dr. C. told us not to worry, that about 50% of her babies are referred and test normal at a later date. We were not worried. After all, our other children had normal hearing. We got involved with life, and I needed time to heal from my c-section, so Audrena was 5 weeks old when we took her back to have her hearing re-screened. She was milk and soy protein intolerant, and we had not worked through some of the congestion that went along with it. Both ears were referred that day. The Audiologist advised us to just come back when her head had cleared up.
Daddy took Audrena back when she was about 3 months old. The left ear passed screening, but then she became fussy and just would not cooperate for them to re-screen her right ear. The Audiologist called it a pass on both ears since she had passed screening on the right ear at birth.
We continued to really enjoy life as a family of 5. Our older children just adored their baby sister, and we felt like our family was complete with 3 children.
Fast forward a few months. When Audrena was about 7 months old, I began to wonder why she wasn't saying "mama," "dada," or "baba." We thought she might just be slower to talk than our other children, who were actually early. In fact, she was later to sit up, too. She finally sat at 7 months, but she was relatively wobbly. At Audrena's 9 month well-check, I asked Dr. C. about her lack of speech. She advised us to just keep an eye on her because she might just be a little later. The third child often doesn't have to talk as soon because the older siblings tend to talk for her. So we did just keep an eye on her.
At 10 months, I decided we really needed to have her hearing checked. She still was not talking, although she did make plenty of other noises, and she did not seem to react to noises much at all. I made an appointment for her to see the Audiologist at our son's ENT doctor's office. Audrena did not do well at that appointment. She was referred on both ears.
The Audiologist had us come back a week later when we could see the ENT, Dr. P. They repeated the Tympanogram and OAEs, and again she was referred on both ears. Dr. P. took one look in her ears and said, "I don't know how her ear drum could have showed any movement at all. Her ears are full of fluid, and she has a double ear infection." We made the decision to place tubes in Audrena's ears since she couldn't have an ABR with all of that fluid anyway. Dr. P. was confident that we would not need to do an ABR and would notice an improvement in her hearing after the surgery. That made sense to us. Our son had needed tubes.
Audrena had her tube surgery when she was 11 months old. We thought we noticed an improvement in Audrena's hearing, but we couldn't really be sure. It still seemed hit and miss as to whether she would respond to sounds. We did, however notice a huge improvement in her balance. She was steady, and she quickly began to crawl, pull herself up on furniture, and cruise. We went back a month later for repeat testing. She failed the OAEs yet again, but she had fluid in her ears. Dr. P. sent us to Sioux Falls for an ABR.
The ABR was done March 21st, when Audrena was 12 months old. The Audiologist told us Audrena had severe-to-profound hearing loss, that Audrena would need cochlear implants, and she referred us to Boys Town in Omaha for a second opinion. We were crushed. How could this be possible? How could such a perfect little angel not be so perfect after all? How could this happen when we had two other children with normal hearing? It must be a mistake. After all, we did take Audrena to Dr. C. just after the ABR, and she had strep throat and an ear infection. Her lymph nodes were swollen and pressing on her Eustachian tubes. That must have caused an inaccurate test. Right?
In the meantime, I buried myself in research as a way of dealing with my grief. I read everything I could find: research studies, websites, blogs, books. I learned about the tests that would be needed to determine whether a person was a cochlear implant candidate. I felt like we were missing tests. I cried. I tried to prepare myself for the future. I rocked Audrena to sleep, and I cried. I tried to make it through my days at work without tears. I tried to explain to Reyana and Kelton that Audrena couldn't hear them when she talked to them because her ears didn't work. She couldn't hear things that they could hear. I cried. We learned a few signs and taught them to Audrena. We cried some more. I contacted our Birth to 3 Connections program to get Audrena signed up. I looked for any programs that might help us, but it was like walking blindfolded in a maze. I didn't know where to go or what to do next. I requested all of Audrena's medical records that might help explain her hearing loss, and I gathered them in a binder. One day, I found an e-mail address on the University of South Dakota's website, and it put me in contact with an Audiologist, Dr. M. In between it all, I cried some more.
We went to see Dr. M. at the end of March. She is USD's cochlear implant specialist and had started her career in Omaha. She went over Audrena's history and previous testing with us. After a few minutes she told us that no one could possibly tell us from the tests Audrena had done up to that point that she would need cochlear implants. Key pieces of the puzzle were missing. We needed more. She did do a Tympanogram and OAEs that day. Audrena did not pass. But we felt validated. Someone had listened to us! Someone really genuinely cared. Someone agreed that we were missing information. It was the first good day in months.
Dr. M. called Boys Town and consulted with them before our appointment. When we arrived, the Audiologists at Boys Town did a Tympanogram, OAEs, and some sound booth testing. Audrena tested the same. Then we met Dr. L.'s nurse, and she went over the medical questions. I gave her the binder so she could make copies of all of the records. Through a crack in the doorway, I could see Dr. L. reviewing things. He came into the room, introduced himself, and then stood against the wall as I unleashed a myriad of questions and concerns. Finally, when I was done, he examined Audrena and explained that we really did need more thorough tests. He was very considerate of our travel time, costs, and the need to put Audrena under anesthesia. Dr. L. told us that we would need a sedated ABR, and they typically do those at the downtown location. However, because he wanted to minimize anesthesia and travel, he would schedule Audrena for OAEs, sedated ABR, bone conduction, and a CT scan all at once at their West campus. He would be there to see everything as it was done, and we would have answers that day.
I explained to Dr. L. that we did appreciate that, but we would also need to have detailed notes from him explaining the need for each test so that our insurance company could approve it since Boys Town is not in network. He told us he would do it right away, and we could take a copy home. I told him it would be ok to fax a copy.
He explained it would take a couple weeks to get us in for the tests, but a couple weeks was ok. He acknowledged our concerns that Audrena was in a critical developmental time frame, and we could not delay testing any longer than necessary.
We left our appointment feeling very confident that we had found a great doctor. We had not even left Omaha yet when Dr. L.'s nurse called to say that she had faxed the notes, and that Dr. L. had been consulting with another doctor about Audrena. They had decided to also book an MRI at the same time. If he decided that day that he didn't need it, then no harm done. At least if we did need it, we could have it done immediately. Wonderful!
In the next weeks, we still grieved and cried. I read more blogs. One day I stumbled upon a blog by a family just a few hours from here. Their daughter had received cochlear implants at 10 months old, and they had the same doctor! I felt like I hit the jackpot. Not only did they have a fantastic experience, but their daughter was completely caught up (even ahead of her peers maybe) before kindergarten. They also included tons of resources on their blog. I e-mailed them to thank them for compiling the information in one area, and for sharing their success story. They e-mailed me back to say that Dr. L. is wonderful, but to be prepared that he's meticulous and slow in the operating room and will lay out all the risks in advance. They told me we would be completely scared by it, but just to know that he his GOOD. They also told us the same thing that the Audiologist in Sioux Falls had told us, and that I had read in numerous places: the success of a child with cochlear implants is hugely dependent on the dedication of the parents. In order to get her caught up, we should be prepared to speak
30,000 words per day to Audrena. We talk a lot in our family. We could do that. That was when I decided that I would not let go of those dreams for Audrena that I had thought to be broken. I would not adjust my expectations. With our help, she would succeed.
I took Audrena for a walk one evening, and I wallowed in self-pity at the fact that she could not hear the birds chirping or the cars driving by. I have a lot of those days. But I also have days where I think that Dr. C.'s words at her birth would prove to be true...she is small, but she is mighty. Audrena is a persistent and smart little girl. Daddy told me she scored at the 2 year old level in some areas on her developmental assessment with the Birth to 3 professionals. I couldn't be there that day, so he was there for the evaluation. Overall, the early childhood education teacher was not concerned with any other area of development aside from the areas affected by speech/hearing/communication. Small but mighty. That's my girl.
