Olivia's hearing loss

I have not posted on what has been going on with Olivia because it has been a very long and drawn out process. Thankfully we are now making progress and moving towards some sort of resolution. I am assuming most of you reading this already know most of the story but I did want to include this as part of my blog since it has become a part of our lives and will always be from here on out. A little background: Olivia did not pass the newborn hearing screening in the hospital the day she went home. She was in the NICU for 8 days and the day she was to be released, they came by to do the hearing test. The woman that did the test did not act surprised and said that it was common for NICU babies to not pass on the first time. This is due to the fluid build up in the ears and since NICU babies are typically lying down mostly and not being moved around and handled like they normally would, the fluid doesn't have a chance to move around and get absorbed the body. So, they instructed me to come back a week later as an outpatient and repeat the test. Ok, no big deal. The fluid in her ears made sense and I was ecstatic to finally bring my baby home I didn't care WHAT kind of test I had to come back for, I just wanted her home with us THAT DAY! So I went back the next week for the repeated test and she passed on one ear but not the other. Again, the technician assured me that this was probably due to fluid and as the fluid lessened, it would get better. However, since she had failed two times, I was referred to an ENT (Ears Nose Throat) doctor for further testing. And so the real journey begins!! I went a few weeks later to see the ENT and they administered an OAE screening (hearing test) along with a test to see if there was still fluid in her ears since this had only been speculated but never confirmed. Well, this time she did not pass the screening on either ear but the test did show some fluid build up so they wanted to wait a few weeks and then retest in hopes that all the fluid will be gone by then. So, again, we waited and went back and by now it was the very end of October. She once again did not pass the OAE screening but also this time when they tested for the fluid they found that it was all gone! This was a shock to us because we could no longer blame her not passing on the fluid. When I asked the doctor's opinion on what I should do his response was "just to wait 6 more weeks and see what happens". I never really liked this doc to begin with but that statement just sealed the deal. I immediately decided I wanted to get a 2nd opinion! Unfortunately, around this same time, Craig was switching jobs and our new insurance wouldn't kick in until Jan. 1st. After asking around and doing some research, I found a really reputable ENT down in the med center and we finally got in to see him mid Jan. After reviewing all her history and examining her, he suggested we do a test called an ABR. It is considered the "gold standard" test as far as diagnosing hearing loss and would give us a definite answer as to what was going on. Well, scheduling the test was a NIGHTMARE. And I don't have the time or the energy to go into that whole story but we didn't get to do the test until April! In order for them to do the test, the baby has to be given a sedative so that they sleep and don't disrupt the testing process. (Ha Ha, not my kid!) Olivia woke up halfway through the test and they weren't able to finish! However, the audiologist did tell us that day that she detected a mild form of hearing loss for high frequency sounds. She told us that we were going to have to come back for another test so that she could complete it for low frequency sounds. She did not speculate and would not really discuss hearing aids or anything of the sort until we knew how she tested for low frequency sounds. Again back to scheduling---at least this time we were able to get in a month later. So at the beginning of this month (may 6), we went back, did the test again and FINALLY got the answers we had been waiting for since she was born! The official diagnosis was a sensorineural (permanent) mild hearing loss for high and low frequencies in both ears. As far as hearing loss goes, I am told this is the best case scenario because mild is barely out of the normal range. However, because the loss is there, we were told she would need hearing aids. This was not the news we were hoping to hear. at least we finally had an answer so that was a relief but I was still holding out hope that her loss would not be bad enough to need hearing aids. Craig and I both agreed right away that it could be a lot worse. She is not deaf, this is something that can be "treated' so to speak and babies that are fitted with hearing aids before a year old have a high success rate of little to no speech delays. That is the encouraging news! I know that this will not define who she is, but rather be something that makes her a stronger person! And from what I can tell, she is a persistent little thing, so I don't see this getting in her way of doing anything! It is a whole new world for us as parents, since we aren't familiar at all with hearing aids but we will learn. ECI, which is a state program for children ages 0-3, provides services, speech therapy, counseling, etc.for kids that need it. They come to your house and work with you and make sure your child is on track with development. I had a lady come out and we have started the process of getting that started. Since Olivia is not really talking yet, it is hard to tell if she has any speech delays, but my hope is that with the hearing aids and the interventions from ECI, she will not. I am thankful for my teaching background and the fact that I am not working so I can be as involved as possible with making sure she has whatever help she needs. Next week I have the appointment to discuss the hearing aids and choose the best ones for her. I will post more later once she has them. If anyone reading this has any thoughts or pointers, please share :) And sorry for the novel!