Surgery. . . Success!

Lily's surgery went very well yesterday despite my nerves. I started getting a nervous stomach Monday night and it lasted all day yesterday. It was hard to watch my baby cry and hit my chest because she was hungry and not be able to feed her. She didn't understand. Watching the surgery assistant wheel my baby away from me into the OR was the hardest thing I've ever had to do. That's when the tears really came. Once surgery got started I did pretty well. We had friends and family waiting with us. They really helped distract me from thinking of Lily in surgery all day. We played cards and talked and before I knew it, the audiologist came out to tell us that one ear was done and that all 22 electrodes were working! Yay! A little over an hour later she came back out to tell us the second ear was done and all 22 electrodes were working! It was a 4 hour surgery, but it really seemed to go fast with all the distractions we had around us. I'm so glad they were there; otherwise I would've worried and had an upset stomach for 4 hours. Dr. Kang told us we would see the outline of the magnets in her head because the bone of her skull is thin since she is a baby. We haven't seen it yet since the bandages are still on. If she leaves the bandages alone, we'll leave them on until Friday. I'll probably post more pictures then. There are also more pictures of surgery day here. Thanks to everyone who was thinking and praying for us.

Lily with her surgeron, Dr. Kang

Lily's daddy and I holding Lily's CI koalas while we waited for her to come out of surgery

Lily's IV

Just waking up after surgery

Getting ready to go home, 2 hours after sugery


Our family at home after surgery

Matching bracelets for the girls that waited for Lily to come out of sugery: Me, Lily (hers is on her ankle), my mom, my cousin Courntey, and my girlfriend Laura

Grandmommy getting Lily ready for bed

Morning after surgery, feeling better

Surgery Tomorrow

Lily's bilateral CI surgery is tomorrow. We have to be at the hospital at 8:00 a.m. and surgery is supposed to start at 10:00. I've been looking forward to this all summer and now, suddenly, I'm feeling scared and nervous. Yes, I want my baby to hear and I'm excited for that, but I wish she didn't have to have surgery. So say a prayer for Lily tonight. I'll post surgery pics as soon as I can. Also, Lily will NOT be able to hear tomorrow. The incisions behind her ears need to heal before she can wear the processors behind her ears. So she won't be able to hear for about 3 more weeks. Her activation day is scheduled for August 31.

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!

Results of CT Scan and CI Surgery

Lily's CT on Friday went well. Thanks for all the prayers. I'm glad it's finally over. I wasn't sure if she was going to actually go to sleep this time. We tried to get the scan back in January with a rectal sedative and she wouldn't go to and stay asleep so it had to be rescheduled. This time they started off with the smallest dosage and kept increasing it until they gave her all they could give her for her weight. She just kept fighting sleep. She would close her eyes and then open them and stare at all of us. She finally went to sleep and we got the scan. I hated watching them strap her down and stick a needle in her foot for the I.V. After the scan, she woke up just fine and all that's left to remind us of the whole thing is a little bruise on her tiny little foot.

Dr. Kang, her surgeon, called tonight to tell us everything looks normal on the scan. No problems. The CI team reviewed Lily last Thursday and decided she is a great candidate to receive a cochlear implant. So now we're submitting paperwork to the insurance company in the morning. No one was in the ENT clinic on Friday, Dr. Kang isn't in the office on Mondays, and he's in surgery all day on Tuesdays, so tomorrow is the first he'll have the chance to sign the paperwork. Hopefully it will be faxed to our insurance company tomorrow morning. Please keep your fingers crossed for an approval for bilateral implants under 12 months. The CI team isn't very hopeful. They told us that insurance companies are denying surgery under 12 months more and more. If insurance approves it, Lily will be having simultaneous bilateral cochlear implant surgery this summer. However, if we're denied, we've decided to get one implant in July with money from BCMH and one implant in November (Lily's first birthday) with money from insurance. Dr. Kang said there won't be a problem with BCMH paying for one and insurance paying for the other. He told us that if for some reason insurance gives us a problem with the second implant, BCMH will pay for it. So she will get two implants regardless.

We really wanted for Lily to only have to have one surgery, but we also want her to hear as soon as possible. As of right now, we are scheduled for surgery on one ear July 1. At that time, Lily will be one week away from 8 months old. Those of you who have already been through this know how stressed and excited I am all at the same time. Please pray that the insurance will approve both ears under 12 months. I'll update again when I have an answer.

CI Candidacy Stuff

All of the CI Candidacy appointments are now complete except for the CT scan, scheduled for Friday, May 29th. The CI team is supposed to go ahead and review her on Thursday, May 28th, pending the results of the CT scan. They aren't expecting to find any surprises from the CT scan since Lily has Connexin 26.

The pre-CI audiology appointment was last week. We picked the colors and brand of cochlear implant we want for Lily. We are going with the Nucleus Freedom from Cochlear for Lily. We didn't look very closely at the other brands because the internal part of the implant on the Freedom is smaller than the other brands. Our audiologists explained that the surgeon prefers this brand for babies since it is so small. We definitely want a brand that our surgeon and audiologists are comfortable working with. The audiologists also told us that Cochlear does a good job of making their upgrades backward compatible so that Lily will be able to take advantage of the upgrades without having another surgery. Basically, the newer and better external parts that will come out in the future should be compatible with the internal parts Lily will already have.

In her blog, Aiden's mom wrote a fantastic summary of the 3 different cochlear implant brands and the reasons they chose the Nucleus Freedom from Cochlear. Lily's daddy and I like Cochlear for many of the same reasons that Aiden's mom highlighted. Right now the only decision I'm not sure about is the controller option. Our audiologists highly recommended the bodyworn controller option and the babyworn controller option as a back up. They think we should start with the bodyworn because it beeps if the coil (the external magnet) comes off of Lily's head. This lets us know if Lily is without sound. Although I like that feature, I think I would prefer for her to wear the babyworn controller. The babyworn just clips to her clothes, whereas the bodyworn has to be worn in a harness, in special onesies with pockets, or in pockets that I would have to sew on all of her clothes. I'm thinking I want 2 babyworn controllers, one to wear and one as a back up. We would get one in beige for her to wear now (since she has very little hair) and one is chocolate brown for her to wear when she gets more hair.

Any experienced CI mommies have any thoughts? Which controller option do you use and why do you like it or not like it? Thanks in advance. I don't know what I'd do without the help of those of you who've already been there!

Cochlear Implant Candidacy Process

We met with Lily's ENT on Thursday and we all agreed that Lily is not benefiting from her hearing aids. She has NEVER responded to environmental sounds and in the booth she has responded at 80 to 95 dB. Lily's ENT and cochlear implant surgeon is Dr. Kang at Nationwide Children's Hospital in Columbus. We disucussed with him our wishes to have her bilaterally implanted in July when she is 8 months old. He told us he had no problem doing the surgery at 8 months but he wasn't hopeful that insurance would approve it before 12 months. He explained to us that even though some insurance companies have approved it younger than 12 months in the past, many companies are starting to deny claims before 12 months. So I'm afraid we may have a battle ahead of us.

The next step: complete several evaluations to determine if Lily is a candidate for cochlear implants. The following are the evaluations we will be scheduling in the next few weeks.

1. Medical Evaluation: Lily will have a CT scan to make sure there are no malformations of her inner ear that may impact the surgery.
2. Audiological (Hearing) Evaluation: More extensive sound booth testing and education for her daddy and I about cochlear implants.
3. Speech/Language Evaluation: Lily's expressive language (verbal and/or sign) and receptive language (understanding verbal and/or sign) will be assessed with her hearing aids on to determine if cochlear implants will benefit her.
4. Developmental Evaluation: A psychologist will evaluate Lily's visual learning and development/behavior.
5. Social Work Evaluation: A social worker will assess child and family functioning, family strengths and challenges and discuss support resources. Family expectations for cochlear implants and further education will also be discussed. Basically, I think this evaluation is to determine if Lily's daddy and I wil follow through with the therapy and education that is necessary for the implants to be successful.
6. Occupational Therapy Evaluation: The occupational therapist will assess Lily's balance and motor abilities and sensory responsiveness to touch and movement.

When all of these evalutions are complete (end of June) the cochlear implant team will determine if Lily is a candidate for surgery (first of July) and then we try to get approval from insurance. We're praying for immediate approval so we can have surgery at the end of July. We really want Lily to be able to hear as soon as possible.