Yay!

 The past month we have been waiting on an approval from the insurance. A few weeks ago I called the hospital to see if they had heard anything from insurance and I found out they hadn't submitted the claim, yet. This was a week or so after I thought they had sent it in. We had two weeks from the date insurance received that we should hear back. The girl said she would submit that day so I called a couple days later to check if she did. It was received by insurance. I might have called them more than necessary to check the status, but I just couldn't help myself. We found out on Monday that insurance was waiting on clarification on the roles of the doctors and nurses during the procedure then they could give us an answer. They said they had tried calling the hospital and didn't get a reply. So, I called the hospital again, talked to a few different people and ended up leaving a message for someone.

That afternoon I received a call from a girl in insurance at the hospital. She started the call with how much we would owe on the date of service, etc. I've had a lot of these kinds of calls prepping just in case the claim was approved. We weren't very confident it would be approved, but we were hopefully. 

So this lady starts talking about our responsibility then says, "So when you come in on December 1st you will owe..." Then I said, "Wait, is this a for sure thing now or is this just in case it gets approved?" She replied with, "Oh! It got approved. I spoke to a nurse with insurance and she told me it was approved." I asked maybe 6 different ways if was approved because I just didn't believe it and she was acting so nonchalant about it! Meanwhile, I started bawling. This is not common for a baby to be implanted on one side at 7 months. 

We called insurance to see if it was approved on their end and they said it was still marked as pending. So, we decided to wait until the next day and call back to see if their status had changed. Sure enough, our family advisor saw that it was approved on December 1st!!! 

I cried again... and a few more times throughout the day. We can't believe it was actually approved and is happening. If all goes to plan, Cami will be able to hear on December 21st when she receives the processors. Right in time for a little Christmas miracle. We are so so so excited for her. SO EXCITED! 

We now have Thanksgiving break to relax and prep ourselves for it and some helpers who are traveling here ;) 

Update on Cami

At the beginning of this month Cami had a sedated MRI and ABR test. An ABR test is when they put pads on Cami's head and send sounds into her ears to test the brain's responses to sound. The MRI was to check her anatomy to see if it would allow for cochlear implants and to see if there was any seen cause to her hearing loss. The most common cause they usually can actually see is EVA. Her MRI came back completely normal - all of her nerves, cochlea, etc were all normal. This means her hearing loss is most likely caused by a "silent" genetic mutation. They refer to it as silent because this gene shows up very randomly down the the genetic line. The audiologist told me the only thing he could think of is if I had a viral infection while I was pregnant; however, this is super unlikely. We can get genetic testing done, but it's quite a few thousand to get done and sometimes you don't even get answers. We will get this testing done at some point. Mostly so Cami can know for herself. Knowing for sure if it is genetic doesn't impact our decision if we want more kids or not so we don't see the urgency. If she starts to show delays or deficiencies in other parts of her development we will look at genetic testing more seriously. Sometimes a certain gene that causes hearing loss can cause other impairments, but we will just wait and see. Lots of people never get genetic testing done.

 

For her ABR, the results came back different than our first un-sedated ABR. We were previously told she was profoundly deaf in her left and severe to profound in her right. However, after this ABR we found that her right ear is more moderate to severe. This means her right ear no longer can have a cochlear implant, at least at this time. She will continue to have a hearing aid on her right. If we feel the hearing aid isn't sufficient for her as she grows up, then we will revisit a cochlear implant. But it will be good for her to have a natural/acoustic sound from her right to work with the more mechanical sound from her cochlear implant. We do a lot of hearing training with her. One thing I did was go in when she was sleeping and yell to see if she would wake up. Doing this showed that she did wake up which means she does have better hearing than profound. So this was a great thing! With her aids we can definitely tell she's hearing. She is working on tracking sounds and is doing so good. 

We have an amazing surgeon, Dr. Page. He's the head of the otorhinolaryngology department at Phoenix Children's Hospital.  He is apparently the guy other ENTs go to with questions. He's the guy that people consult about their cases. He has always been very clear and open about every option, risk, outcome with us. We can tell he cares about doing the best for Cami. Pairing that with his success and knowledge, we really trust him.

We were previously really pushing for early implantation when we thought she would be bilaterally implanted with cochlear implants so she can start getting sound as early as possible. Lots of insurances are starting to get behind this as well. However, now that she will only be unilaterally implanted, our urgency and the need isn't as great. Dr. Page still tried to submit with our insurance for implantation at 7 months because earlier is better! However, if insurance denies it, we don't have a lot of data to back up our request like we did with bilateral implants. If they do deny it, we will implant in the spring hopefully.  We should find out in a week or so what insurance has decided. We will be okay with any result. 

Camille Marie

 Our beautiful new addition to the family this year is Camille (Cami). Here's a little more about her and the journey so far with her hearing....

When we were getting all moved from California to Arizona, we knew we wanted to start trying for another baby soon. At the end of August I started feeling insanely exhausted and nauseous. I didn't bother with a pregnancy test until the end of September because I was pretty sure what was going on. And... it was positive! 

We found out in November we were having another GIRL! We were so excited.  When we told the kids, Darell was not very excited. Madison was stoked! 

When I asked what he thought about having a baby sister he said, "I don't want one."

It took quite a few months to warm him up to the idea of a baby sister. It wasn't until Stewart told Darell that Cami would need her big brothers to protect her that he really latched on to the idea that he would be okay with another girl in the family.

When it was getting closer to my due date, Corona started and all the restrictions began. We didn't know if my mom and dad would be coming, if Stewart could be in the hospital with me, etc.  Thankfully, Stewart could come in with me, but no other visitors. My doctor told me that whoever came to visit would have to quarantine for 14 days after flying a plane. So my parents rented a car and drove the whole way down to Phoenix so they could be here. My dad had to leave before I had Cami which was a bummer, but my mom was able to be here and help A LOT.

My due date was May 5th and I was scheduled to be induced on May 4th. I had to wait for them to call me starting at 8pm the night before to make sure there was room for me. I wasn't getting a call from them and I called multiple times. They would just tell me it may be an hour or so longer... I was contracting, but nothing was consistent or increasing in intensity. My sleep the morning of the 4th was obviously horrible and I was tired all day. The last call I made was at about 8pm and I just wanted to be told if I could go to sleep or not. The nurse told me there were so many people who came in to have babies it was like a bomb went off. So they really didn't have room for me. She couldn't give me a time frame and told me to go to bed. They called around 2am so I woke Stewart up and we headed out. We were so tired, as you can imagine, but we were ready to welcome our girl into the world.

I was 3 centimeters dilated when we arrived so they started me on a balloon and that increased me another centimeter. Then we started the pitocin and I asked for the epidural right away. I didn't want to feel the pain I felt with Brandon and I kind of wanted to sleep if I could.  We had some oxygen issues with me and low blood pressure. There was a point when my doctor was going to come in but I was only at a 6 so she wouldn't actually come for 2 hours. I started feeling a lot of pressure and since the nurse had only checked me maybe 10 minutes before, she said she would come back in 15 minutes. But if it got worse then call her back in. I had Stewart get her within a few minutes because I knew it was time and Cami was making her way down. I couldn't stop shaking and was so surprised by what I was feeling. It was such intense pressure, but none of the sharp pain I had with Brandon without the epidural. It was weird and I didn't really know what to do. They checked me again and she could see Cami's head. So they called my doctor and my doctor came in 30 minutes. She couldn't enter the hospital right away because her temp was high due to running in the AZ heat through the parking lot. Cami came and she was screaming so loud right away and as soon as she was placed on my chest, she latched on immediately and enjoyed a meal. 

There weren't any immediate concerns. She looked and sounded healthy. We were told we would most likely go home after her 24 hr new born screening tests. On May 6th earlier in the day she didn't pass her newborn hearing test but they just said it was probably due to fluid since she came through the birthing canal so fast. The results for her 24 hr screening came back and wasn't what we expected. She had failed her congenital heart test. We were all packed up and ready to go home when the nurse came and told us we had to wait a couple hours to do another one.. which she failed again. So, it was time to spend the night and do an echo and EKG in the morning. She passed in the morning! Thank goodness. However, that same morning she failed another hearing test, when we were again told that it was most likely just fluid. 

Two weeks later we went and did a similar hearing test, but the girl administering it took her time changing the part that goes in her ear and the pads around her head. She really did try multiple things to try and get a pass. However, the results were still coming back as failed. It was apparent on the screen that she wasn't anywhere close to passing. Which meant it was most than just fluid in her ear. 

We went to an audiologist who we have really loved so far. We did a 2 hour appointment for two tests - ABR and BAER. The audiologist told me the results looked maybe severe or severe to profound. We met with her a little later so she could analyze the data. The results were that Cami had sever to profound hearing loss. We were given a book about grieving and lots of other information about the whole thing. She told us we would start with hearing aids and most likely move to cochlear implants. We had to meat with an ENT to approve of the hearing aid trial to prove they didn't help enough with her hearing and cochlear implants were necessary. Implants were generally done around 1 year of age. However, the FDA just approved for 9 months. 

When we found out about her hearing loss, we contacted early intervention. I had known about early intervention and the services they provide because Brandon has a slight speech delay and we were referred to them by the pediatrician. So we got Cami immediately signed up for early intervention and work with Arizona School for the Deaf and Blind every week for speech/learning to hear. They told me about a mom who had pushed for her daughter to get the cochlear implants early. Around the world, lots of doctors are implanting at 6 months. The kids have amazing speech progress with very minimal risk. Cochlear implants are actually one of the most successful surgeries so that is also very comforting. 

I contacted this mom and she had actually pushed to have her daughter implanted at 7 months when the FDA was only approving for 1 year so it was huge that she was able to make it happen. She told me the whole process she went through and how exactly she got it to happen.  I had asked our audiologist about it and she said people aren't doing it. A couple days later I received an email from her saying she reached out to the department head of Phoenix Children's Hospital (where the other mom implanted early) and he said they have been doing early implantation for a about a year now and the results have been great. He also told her to send my information to him and he will make sure we get into him right away (the appointments were running about a month out) so we could start the process with all the other appointments and MRI to get this done early. 

We started the hearing aids at the beginning of August. We didn't see a huge difference in her response to sound. She did cry when we turned the hearing aids on, but other than that there wasn't a huge change. Her hearing aids are the most powerful and are basically turned up as high as possible for both ears. She's been a trooper with them and has now been pulling them off nonstop. 

I met with Dr. Page a few weeks ago and he answered all my questions and explained what differences they have made in the surgeries for younger kids. He also explained that if anything looks off or doesn't feel right they will absolutely will not do the surgery early, but if everything looks good then we will get it done. I felt really good leaving the appointment and felt that we are doing the right thing for Cami.

We had a booth test with hearing aids on.. The booth test is a sound proof booth where I sat with Cami on my lap and an audiologist looking at her. Another audiologist was outside of the booth on the computer. She would send certain sounds into the booth and we would see if Cami made any sort of change of behavior... eyes widening, stopped sucking on paci, looking around, stopped movement, etc. It was obvious when she would hear the sound and actually tried finding it! This was very encouraging. Her hearing without hearing aids is over 90 decibels. This is like the sound like a motorcycle. With her hearing aids it was being brought up to about the sound of a vacuum or shouting... 55-65 decibels. This still isn't enough for her to live with normal communication so cochlear implants are still the plan.

PCH has a team of doctors who work together on the cases, which I like. Their team will meet often about each shared client. The doctors involved are the ENT, audiologist, speech therapist, and psychologist. We met with a psychologist on Tuesday to see how we were doing and have us express any concerns or questions we may have about everything. Later that day I met with an audiologist. There was some confusion why we were there if we were already seeing an audiologist. We love our current audiologist and she is much closer. We found out that our current audiologist hasn't helped with kids who have been implanted early. And while she has done lots of activations and mappings for cochlear implants, she hasn't done any this young. Dr. Page called me Wednesday and explained this whole conversation he had with her and they decided that the best thing for Cami would be for the PCH audiologist to do the activation and initial mappings then we would move back to our audiologist when Cami is a bit older. While we were disappointed our current audiologist didn't express this to us, we are happy with the plan now. Dr. Page also told us he has her surgery penciled in for December 1st! This could change, but it's the plan right now. This is when she is a few days shy of 7 months.

We have an appointment with PCH speech today and an MRI in a little over a week. This will give us the final idea if Cami's anatomy will allow for a cochlear implant. We are anxious, but so ready. This girl is so sweet. She's so happy, has been a good eater and sleeper, loves her family, and tolerates a lot from her brothers! We are all so obsessed with her. 

Through this whole process we have felt so much support... Our family has been right by us with so much love and support. We have been given contact information for multiple people who have kids with CI's or who have CI's themselves. The support groups on Facebook have been awesome. I also feel our doctors are really trying to do what's best for Cami, and that means so much to us. We love her and all want to do what's right for this precious little thing. She is so fortunate to have the people in her life that she does. She is going to do amazing through this life and we are so excited to see what she grows up to be. 

Phoenix!

At the end of last summer we packed up our 800 sq ft two bedroom condo in Southern California. Stewart requested a job transfer to the Phoenix office and we were so excited for what was to come. We had built some great friendships and really enjoyed the ward, but we knew it was time for us to move on.

With the help of my parents and some friends, we loaded the Uhaul and drove to Phoenix. Brandon rode with me in our trusty little Oldsmobile while Stewart handled the truck. I hung back to finish cleaning with my parents and by the time I made it to Phoenix, the Uhaul was already empty. My parents kept Madison and Darell and did all sorts of fun things with them.

Stewart, Brandon, and I flew back to California to go to DISNEYLAND with my parents and the Ascanio fam. It was such a blast. Quick, but so much fun!!

The next day we relaxed in Santa Monica at the beach. The traffic we were stuck in after was totally worth it!