~LONG POST~
Life as we know it has changed. Last Monday we had some bad news regarding Natalie. She didn't pass her newborn hearing screening at the hospital when she was born. They told us not to worry that most of the time they get retested and pass. She had her re-screen last monday and did not pass again. She didn't have any fluid in her ears either as they checked that.
So, last Thursday we took her back in for her diagnostic test as the others were just screenings. Natalie was diagnosed with severe hearing loss in both ears based on the diagnostic tests done. The audiologist didn't get a single pitch reaction in either ear, meaning she has total loss in both ears. 1/1000 live births have some sort of hearing loss and of that 1 only 10% have total loss.... so we are that unlucky 10% or 1/10,000. So she doesn't hear anything at all in either ear.
So, our next step is to head to an ENT (on Tuesday) to get our consultation and know what our next step is. We are hoping and praying she has the nerve in her brain that would allow her to hear because then she would most likely be a strong candidate for cochlear implants which would allow her to hear. We won't know that until they do an MRI or CT scan. We are not sure of the age that is required for that as they have to be sedated to have the MRI. We were told by the audiologist they can do implants as early as 12 months; that is the FDA approval age and some ENT's have done it even earlier. If she used hearing aids at this point they probably wouldn't help because of how severe she is, at least that is what the audiologist told us. But, we have also heard she may start on hearing aids until she is old enough to get the cochlear implants.
We are trying to be hopeful that the next stage will be more positive and that she will eventually be able to hear with cochlear implants assuming she has the nerve. We feel so saddened by this recent news but are already surrounded by such loving family and friends and I feel like our support network is widening quickly.
First example: We are blessed to be in the ward we are in. The family that home teaches us from church has a hearing impaired son that has undergone bilateral cochlear implants. They are a wonderful family and have already been a great support to us thus far. We have learned a lot from their situation. We also have several people in our ward that are either speech pathologists or have some similar speech problems with their own children and can relate a little bit on the road we are on.
Second example: We have already been in contact with an ENT from Ohio State and Tim was able to get some good information from him. That is an ironic situation in itself. We were able to get in contact with him through Tim’s dad. His dad works with a guy in Utah that knows this ENT from Ohio State. The ENT is also a member of our church and is in the same ward as some friends of ours from medical school. Tim called him last night and his wife said he was out of town at a conference but gave him his cell phone number. Turns out, he was at a conference on cochlear implants and when Tim talked to him last night, he gave him a lot of information about the current studies and progress of implants, so we are hopeful. I felt a little better knowing there are so many children and families out there going through the same thing as us. He told us we can contact him at any time. I guess he is one of the best ENT’s in the country.
Third example: Tim’s sister is in a ward out in Utah. She happened to be mentioning our situation to someone and found out that a guy in her ward is the director of The National Center for Hearing Assessment and Management. He was part of a team that developed the first newborn hearing screen test in the early 90's. Since then they have been federally funded as the National Center. He passed on a lot of information to her; good websites that will help us and is dropping off some dvd’s and information that she is going to mail out to us. He also said we are in a great area for treatment. I guess some of the best audiologists are in the Raleigh area (although not sure if we will be going that far) but it is reassuring to know that we were very much meant to live in Charlotte for Tim’s residency.
So, our next step is to meet with our ENT Tuesday to kind of map out our path. I am very thankful for our friends and family that have reached out to us at this difficult time. We will continue to post about Natalie’s treatments and progress. And... I will continue to blog about everything else going on in our life, because I don’t want to neglect or have anyone forget about our other children and I want to try and keep life as normal for them as possible.
Thanks for everyone’s love thus far. We do feel those hugs and kisses from across the country!
COMMENTS:
Wow! That's got to be tough news, but I LOVE all the support and tender mercies you've received. Natalie is a beautiful baby and she (and your family) will certainly be in our prayers.
Monday, May 3, 2010 - 02:35 PM
Melissa: Yes, you guys are very blessed. I just think of how wonderful the changes are nowadays that can help with hearing loss. As to the pics, I can't believe how much Natalie has changed already! What a precious baby! And, I can tell your new camera works wonderfully!
Monday, May 3, 2010 - 02:51 PM
What a genuinely awesome attitude you guys have with all of this. I imagine there are going to be tough days ahead, but it sounds like you are already taking things in stride and doing your best with the information and resources available to you. Hang in there - what a great inspiration your family and Natalie may be to someone who doesn't know where to turn. This will all work out, some way or another...the Lord truly works in mysterious ways. We may not have been through the exact challenge as you guys, but a lot of the lessons we've learned along our trial's path are very similar. We love you and are praying for you all - stay strong, though with you two, I'm not too worried about that. ;-) xoxo
Monday, May 3, 2010 - 02:58 PM
Tim, Melissa, and Family,
We are thinking of you and loving your family. You are in our prayers and we have faith that all will work out. What amazing parents you are and how fortunate are your children to live in your home. WE LOVE YOU!!
Chele, Dave, Hudson, and Haley
We are thinking of you and loving your family. You are in our prayers and we have faith that all will work out. What amazing parents you are and how fortunate are your children to live in your home. WE LOVE YOU!!
Chele, Dave, Hudson, and Haley
Monday, May 3, 2010 - 03:13 PM
I will be praying for you to have comfort tomorrow no matter what the doctors find out. She is a beautiful girl. I am glad she has such a strong family and friends support system for her. I am praying for your family daily.
Monday, May 3, 2010 - 03:28 PM
I think it's wonderful how much you have been blessed already, with so many connections. Natalie is so beautiful, and I hope that things will only get better. Let me know if you need anything.
Monday, May 3, 2010 - 03:40 PM
Melissa--that is hard news. We never expect those things for our kids. She is a cutie and I love seeing pictures. I hope you get all the help you need--medical for Natalie and emotional for you too. Good luck and enjoy those kiddies!
Monday, May 3, 2010 - 04:13 PM
You guys are so amazing. Natalie is blessed to have such a wonderful family. We just love you guys and think she is just the most beautiful little baby.
Monday, May 3, 2010 - 05:30 PM
I'm glad you were able to talk to Dr Welling. Natalie looks so beutiful in the pics! I'm glad you are in NC and there seems to be lots of help for you and Natalie will be able to get good care. I hope tomorrow goes well at her appt.
Monday, May 3, 2010 - 06:54 PM
I am so sorry about your sad news. She is such a beautiful baby, and I know that whatever happens, you guys will be watched over. You are in our prayers, and we hope for the best for you.
Tuesday, May 4, 2010 - 11:49 AM
Natalie has been sent to the best parents in the world who will do everything in their power to help her. My thoughts and prayers are with you, and I will do everything in my power to help all of you also!
Tuesday, May 4, 2010 - 04:07 PM
0 comments:
Post a Comment