Results

I just have to say my little girl is such a trooper. Throughout both the CT scan and ABR she was so well behaved. For both tests she couldn't eat 6 hours before the test and even though she was starving she was smiley and so happy. The only time things got hairy is when they placed her IV, but she was still such a trooper. It could have been way worse, she could have been miserable, but was so patient and peaceful, no doubt due to everyone praying for us. The nurses, doctors and staff at Scottish Rite were wonderful and so gentle.
So the part that you really want to know the results of our the tests: the CT scan came back completely normal, so this means she can be implanted! The ABR came with a little surprise, we thought Molly was profound in the left and severe in the right and it turns out she is profound in both. The audiologist was able to test all frequencies and decibels and nothing came back. Don't be sad though, in this case the worse the results the better because it leaves no room for questioning.
So now what... Well last week we went to the ENT so that Molly could be cleared for hearing aides. Yes I know what you are thinking, hearing aides, she's deaf, but besides making the insurance happy, they will supposedly help give her some awareness and will minimally stimulate her auditory nerve. This is important because it will help her to better process once the implants are in place. So we now have a referral for a hearing aide specialist at Scottish Rite and are planning to visit the two speech schools in Atlanta and figure out which is the best fit for Molly and our family.

We also have a referral in place for the surgeon we want to implant her and are praying that the review board approves it! So please be praying that the God leads us to the right surgeon. I really am hoping it is Dr. Hermann, he is one of the best, makes a smaller incision, and has been known to do a double implant surgery! Wouldn't that be great, to only have to have one surgery for her?! Also he may let us implant at 10 months! It may be silly, but I have been praying that instead of signing Happy Birthday, we can sing it! I know that God is in control and he has all of this already planned. So now we wait for the hearing aide appointment and for approval for our surgeon.

Something to write about

Hey Y'all, I know it's been two months with no update, well I finally have something worth posting. We finally got everything all coordinated and Molly is scheduled for her CT scan and sedated hearing test(ABR). This is what we've been waiting for, and it will tell us if Molly is a cochlear implant candidate! They will scan her brain and ears to make sure everything is formed correctly and also do the hearing test again, but Molly will be totally under. They will then be able to give us an official diagnosis and we can then begin talking about a timeline for implants. Its scheduled for the 16th, one week from today, at 8 in the morning. Which means we have to be at Scottish Rite at 6am, yuck. She cannot eat for 6 hours prior, but can have clear liquids up until two hours before. I figured since she is used to not eating in the middle of the night, this would easiest for everyone.

We also received results back from Molly's blood work and it came back that she has Connexin 26, which means she is genetically deaf. We are not sure yet if we both have the recessive gene or there is a rarer form in which it can come from one parent, but only on the x chromosome. Which could explain why Molly is deaf and not Adam.  We won't really know until we meet with the genetic counselor at Emory, which I haven't gotten to schedule yet, as it is not as high on the priority list of appointments. Either way Aaron and I want to get tested so we know for sure and can let our families know, he has two brothers that haven't had kids and my two sisters have not as well. Plus it would good to find out if Adam is also a carrier.

Emotionally I think the test will be a little challenging. The idea of her being totally under is a little scary and I am not sure how much I'll be able to be by her side during them. I am pretty anxious about the logistics; her not being able to eat, my mom getting him to and picking Adam up from school, how will this effect her sleeping and eating. Ultimately, I know that God has known this day would happen and everything will be fine and extra courage will be granted to me and my husband. Needless to say, prayers and good thoughts for next tuesday will be welcomed and I'll have some more information to update then.

Those of you wanting to know more about Molly. She is the happiest baby and such a joy to be a Mommy to. This little girl is already teaching me so much about myself and my heart overflows with love for her. She is ALWAYS smiling, I don't think I've seen a baby smile so much. She has started laughing and for a deaf baby, or any baby for that matter, she is quite talkative. She is constantly babbling and squealing! She has figured out how to suck her thumb and continues to be a good eater, she was 12 1/2lbs at her last appointment. We've got her reflux totally under control with some good meds and she is sleeping at least 9 hours,sometimes as much as 11. All in all things are really going well and I cannot imagine life without this bundle of joy!

No News..

Sigh, Thursday was a little rough. Our day was filled with Drs. appointments. We began at the ENT, he literally only looked in Molly's ears and said ok we need to make a lot of referrals and order bloodwork. A friend of mine warned me that this appointment would be just that, but I thought there might be a little more to it. Well Molly was scheduled for her 2 month check and since we figured she is getting shots, we would do her bloodwork. I knew she would cry so I sent Aaron in with her and I'm so glad I did. It's bad enough they had to take blood at all, but the first arm they couldn't hit her vein and were digging around and the they finally got the other arm, but we have to go back Monday and put her through this torture again because they didn't get enough. She was screaming the whole time, I could hear her in the waiting room and it was horrible. Also when you have a deaf  baby you can't console her with your voice and she was having blood taken, so Aaron could not rock her, he just sat there as she looked at him sobbing to make it stop.

Her 2 month checkup was next, I am happy to report my little girl is growing nicely. She is already 22 inches long, and weighs 10lbs 9oz! She is right on par, if not a little ahead as far as head control and strength and is just as happy as can be. When she is awake she has the biggest smile, it takes up her whole face, it's contagious, you can't help but feel happy when you see it! The pediatrician was very happy with her progress. They needed to do an EKG, which was fine, but she didn't like having the strips ripped off. Then came shot time and she was not happy about those as well. Then to top it all off poor thing was so sore and ran a fever. I just scooped her up that evening and held her tight and gave her a million kisses so she would know mommy loved her so much.

So I didn't realize how being at the doctor all day would be so draining. I felt a little overwhelmed and like I had been through the ringer. It hit me on the drive back that this road would have lots of days like this, and honestly my heart sunk a little. I shed a tear and thanked God for the strength he was and would bring me, but I mostly thanked God for all of you. I came home to more kind and encouraging words, and my spirits lifted a little more. I am truly blessed as to how good God is being to us in the form all the wonderful people he has placed in our life. I feel so unworthy. I have cried so much in the last week, but not because I'm sad about Molly. It's because of all the kind words and encouragement from everyone. I am overwhelmed by the outpouring I have been receiving, I really do feel your prayers/good thoughts and it's making all of this so much easier. I am truly blessed by such wonderful friends and family. I just can't believe that all this is just for "little old me", I don't feel like I am anyone special, but I am so touched that I am inspiring some of you and that it's causing you to examine your own faith. If this is all happening so people can really know God then I count it all as being worth the price. If our journey encourages and inspire some of you then it helps me to know that we are exactly on the path we need to be.

Next steps: we have another round of bloodwork Monday, a GI appointment on wed, and then several unscheduled referrals. Molly will need a kidney ultrasound, somehow there can be a correlation between the deafness and kidneys, a genetics apt, a ct scan, and a sedated ABR. I will continue to keep everyone posted as to dates and specific prayer needs. Biggest thing we are praying for now is that she will be a candidate for implants.

The journey begins...

Molly was born on June 15th 2012. She came into this world loved and adored for the beginning by not only her family, but by our gracious God. Molly had two OAE hearing screenings in the hospital and failed both. We were told not to worry that most of the babies that receive this referral pass the next test. I didn't even worry about it and we began to adjusting to life with a newborn and two kids. Molly did what newborns do, she slept most of the time and ate. Even as a newborn was sweet and hardly cried, except when she wanted to eat. Then on July 10th we went in for her referral appointment. The audiologist did an OAE screening, which she failed again and then did a test for fluid. One ear looked like a normal ear pattern and the other looked as if there was fluid. Then an ABR screening was done, a more intense test to determine the level loss. We were told she was not hearing at any level of this test and in a month we would need a more intense ABR next month. The audiologist shared with us that it could still be fluid and that we would know better at the next visit. Of course being the person I am, I asked what was worse case scenario and the audiologist shared that Molly may have profound loss and be deaf. However the audiologist offered hope by sharing that she may end up being the candidate for cochlear implants. That's when it hit me, she may not be able to hear me at all. I asked and the audiologist said that if she could I sound muffled, like the Charlie brown teacher.
So I went home in shock and a bit of a mess. I began researching the deaf community and then began to look into the implants. I watched countless videos of children getting implants turned on and sobbed, as I realized my plan for Molly's life might be drastically different than I had imagined. I began to realize that I would need tremendous support to get through the next month. I reached out to many of you on Facebook and in person. I was floored by the support, thoughts, and prayers that were extended. I began praying and began to realize that Molly's little ears were in God's hands. God began to gave me immense peace. While we were still hoping that it would be fluid that would drain. I believe the Lord began to prepare me and Aaron for news we were to receive. One thing many of you do not know, is that when I was pregnant with Molly I prayed that she would be in presence and demeanour an example of God's love. That all that would meet her would encounter kindness and love. Little did I know that in order for that to be true, she would need to have a disability. As the month passed I began to feel more and more that God was with me and that he would heal her. I began to tell others whether it be miraculous or through a drs hands she would hear. The week leading up to her appointment I began to get a little anxious, what I had been telling people and feeling would be tested. I again reached out and more of you joined us in prayer. God began bringing people to me that had been touched by deafness, a few even who had children with implants. I still hoped she would just have fluid that could be drained. I could tell that hearing had improved only slightly,and that was when I had Adam scream really loud in her ear. However I also could tell that she wasn't hearing anything else. The night before her appointment Aaron and I prayed over her and released it all into God's hands. I was able to say "it is well with my soul" and because of God's great comfort I truly meant it. Though I did not want that to be tested, I was at peace with God's answer.

The day, Aug 10th, came and the audiologist ran the fluid image, no fluid seemed to be present and I hoped a little inside. Then we ran the OAE again, and again she failed. So now it was how much loss does she have. Molly was fussy so we fed her and tried to get her to sleep, the ABR works better that way. The test was run on the left ear and some hearing was detected, but only at 85 dcb, so only really loud noises, we speak at about 60 dcb. Then the right was done and nothing was detected. I asked what that meant, the audiologist shared the news I was hoping she wouldn't, profound loss in the right and severe in the left. I was amazed by the peace I felt at the same time as sadness. I wasn't so much upset that she was deaf, but that she could not hear right then. I am ok with all this because God is granting me such peace and strength. I cannot take credit, because this not of me, it's actually almost the opposite of normal reaction.
So where did go from here, the next step is an ENT appointment on thursday, in which the Dr will look at her ears to determine if everything is formed correctly and they will run a test to determine if the loss is genetic and referrals to more than likely Scottish Rite will be made. Please be praying that visits go smoothly and we get follow ups quickly. The earlier we can determine if she can get implants the sooner we can get them and if we can get them in by about a year old there will be almost no delay in speech and she will sound and speak no different than her peers.