Saturday, June 13, 2009

Frustrating But Worth It

All of Lily's CI candidacy evaluations are complete and the CI team at NCH (Nationwide Children's Hospital) has decided she is a great candidate for cochlear implants. Very exciting! The frustrating part of all this is trying to get a surgery date and figure out how the surgery is going to be paid for.

As I mentioned in my previous post, we have BCMH funds available to us. I recently found out that BCMH has approved Lily for bilateral cochlear implants. So we were told in May that the surgeon would perform simultaneous bilateral (two ears in one surgery) CI surgery when Lily is 8 months old with the BCMH money. A week later we were told that the surgeon will only do one ear with BCMH money at 8 months and do the other ear in November when she is one year old with money from insurance. I was disappointed, but moved on and got excited about having one ear implanted on July 1. My baby would be hearing before the end of July! We had all of our appointments scheduled for pre and post surgery and mapping. Her equipment has been order and we're all set for surgery in a few weeks. Well. . . last week I got a call that our insurance denied Lily's surgery because she is under 12 months AND that BCMH will not pay for any surgery until Lily is 9 months old on August 11. Not a big deal, just one month at 10 days later right? WRONG! It is a big deal. It is so frustrating to be told one thing and get your hopes up only to be told something else later. So I'm told that Lily will get one implant August 11 and the other implant the week of her first birthday.

With all the stress of the end of school last week, being told one thing and then another what seemed like 50 times, and starting the appeal to insurance, I sort of broke down and lost it. I cried, I was angry, I was sad, I was frustrated, I was tired. . .I was hopeless. I thought we would never get through this. So I called and spoke with Lily's surgeon and explained my feelings of frustration and my STRONG feelings that we should have access to the BCMH money for TWO implants since that is what we have qualified for. He said he would discuss it with the appropriate people and get back to me in a week or two.

I was still feeling pretty hopeless, so I started my appeal letter to the insurance. I feel like I'm back in college writing a research paper. I've gathered all of this research demonstrating the benefits of implantation under 12 months of age. I've also gathered some research demonstrating that anesthesia complications in infants 2 to 12 months is no more risky than it is in children aged 1 to 5 years. I've got a rough draft letter finished.

I needed a break from thinking about hearing aids, cochlear implants, surgery, insurance, FDA, etc. so Lily and I joined some family on a trip to the Columbus zoo yesterday. We had a great day and I didn't think too much about all that was upsetting me. I got a call yesterday from Lily's surgeon. He was able to get back to me in 2 days rather than 2 weeks. He explained that he met with the medical ethics board and the head of BCMH and they decided. . . to do SIMULTANEOUS BILATERAL COCHLEAR IMPLANT SURGERY when Lily is 9 months old! I'm SO excited! Now Lily only has to have one surgery and she'll still be hearing before she is one year old. So now her surgery is scheduled for August 11. I'm praying that nothing changes. I'm still going to file the appeal with the insurance in hopes that they'll reverse their decision and the BCMH money can be saved for others who may need it.

This whole CI process has been hard on me. But I know it will all be worth it the first time my sweet baby turns to the sound of my voice. I was reading my devotional and the author wrote something that I really needed to be reminded of. He wrote, "God never said the journey would be easy. . .He just said it would be worth it." That's what I'm holding on to right now. I think there are going to be MANY bumps along the road of raising a deaf child and the journey will be hard sometimes and sometimes not so hard. But at the end, it will all be worth it.

This baby is definitely WORTH it!


  1. That is so great that she will be able to get both ears done at one time. I wish they had that when Allison was going through her CI surgery. Oh well, I can't complain,seeing how well she is doing!!
    We would love to meet you!! My husband has a degree in landscape design, so he really enjoys Dawes. He is off the week of July 13-18th, so maybe we can work something out for one of the Saturdays(11th or the 18th) We are open either day. Whichever works for you.

    Hope we can meet each other.


  2. What exciting news! I also suggest you contact Let Them Hear Foundation's advocacy program in case anything falls through. They did AMAZING work for us to gte Monrovia's surgery!

  3. OH MY GOSH! This is excellent news!!! I started reading this with tears and ended it with chills! I am so excited for you all! Aug. 11th will be here before you know it and sweet lily will hear you all singing happy birthday to her! And way to go with your draft letter to insurance!

    PS - I may be in that area the end of July. If so, it'd be great to meet up!

  4. YEAH! What a turn of events! I think it's a great idea to still appeal with your primary insurance, but so nice to know a date, regardless of outcome!

  5. WOW, what a whirlwind! It is always good to get away from the 24/7 thoughts of HA's, CI's, candidacy, surgery, etc... with a little time at, no better place than, the zoo. We too are in it all, we were told that her surgery will be in July...stay tuned as to when exactly! We are thinking of you all!

  6. I'm soooooo happy for you that it is all working out despite the heck of a roller coaster ride you have been on! All that back and forth and up and down can really take a toll on your emotional well-being. I love how you put it all in perspective. Hang in there I can see the light at the end of the tunnel!

  7. What exciting news! I can't wait to see her CI journey.We are finally starting on the hearing aid process, we have a consultation meeting on Friday. Did you have any problems with insurance covering her hearing aids? We have really good insurance and we were just told they would not pay, we are still checking up on it but I was unaware that hearing aids would be denied. We are not quite sure how the hearing aid process should go and I'm hoping my blogger friends could fill me in. One more question I see you bought the hanna Andersson pilot caps, do you know how the sizing works? Kemper is an average sized baby but they have XXS, S & M and I'm not sure which one to get TIA!

  8. What wonderful news! August 11 will be here before you know it. So excited for you!!!

  9. Brilliant news. So frustrating the waiting but will be worth it. A year into it my Mary is making recognisable word sounds so lovely to hear. She calls Mummum and turns to my voice only to grin and turn away again. So beautiful. Lily will be there too.