We turned on her left side last Tuesday. She showed a response. She stilled and listened intently. We recorded her response but it is a 28 minute video. I will look into editing it and will post once its shortened. She has been wearing the implant at home. Initially she fussed when we put them on however we realized it was the hair clip that was causing discomfort. We removed the hair clip and now she seems to fuss when it is removed. While she is wearing the implant she does not show much of a response. She does not look for sound or turn if there is a loud noise. She is inconsistent with her stilling. Our audiologist said this is common. Angelica is hearing for the first time and like a newborn is not aware where the sound is coming from or what the sound is.
I have had several people ask if we will continue to sign if she is hearing. The answer is yes. Angelica is deaf and is part of the deaf community. That will be her main form of communication. We only have one side at this time that is functioning. We do not know to what extent she will hear. She may only hear loud sounds. Cochlear implants need to be replaced ever 10 year (or so we have been told). As the device fails in the future I want her to be comfortable without sound. I still very much want her to attend the school for the deaf and be a part of the deaf community. I encourage all family and friends to learn sign language. It is a beautiful language.
Hope everyone is staying warm and flu free!
love,
Amanda, Chris and Angelica
Friday, January 12, 2018
Friday, December 29, 2017
Cochlear implant update
We had a wonderful holiday. We spent it home in Austin with our little family. Angelica is still not walking or crawling but she is scooting and rolling. She is very much a fun spirited, silly and "I can do it myself" little girl.
We tested the right side on Wednesday and did not get a response. This was the side that we were hopeful would respond. We will move forward with testing the left side on Tuesday. Angelica did exceptionally well at the appointment. It was just under 3 hours. There is a great deal of testing that is involved when turning on a cochlear implant. We are not upset with the results and if this does not work out we are confident she will be just fine. The only frustrating thing with all of this is the 11 hour surgery. Such a long time to have surgery for something especially with her heart condition. She is doing well from surgery so I suppose I need to move forward from that frustration.
The deaf community is such a proud awesome community we are very blessed to have become a part of that community. We are enjoying learning sign language and have quite a ways to go. She loves to watch people sign and she is signing a few words already. Dad was the first and mom is on occasion. We have had so much fun watching her grow and learn.
Hope everyone had a Merry Christmas.
love,
Amanda, Chris and Angelica
We tested the right side on Wednesday and did not get a response. This was the side that we were hopeful would respond. We will move forward with testing the left side on Tuesday. Angelica did exceptionally well at the appointment. It was just under 3 hours. There is a great deal of testing that is involved when turning on a cochlear implant. We are not upset with the results and if this does not work out we are confident she will be just fine. The only frustrating thing with all of this is the 11 hour surgery. Such a long time to have surgery for something especially with her heart condition. She is doing well from surgery so I suppose I need to move forward from that frustration.
The deaf community is such a proud awesome community we are very blessed to have become a part of that community. We are enjoying learning sign language and have quite a ways to go. She loves to watch people sign and she is signing a few words already. Dad was the first and mom is on occasion. We have had so much fun watching her grow and learn.
Hope everyone had a Merry Christmas.
love,
Amanda, Chris and Angelica
Friday, December 8, 2017
Update 12/8
We are home! Feels good to be home. Angelica is tired and fussy as expected but she is only expected to feel down for 3 - 5 days. Looking forward to catch up on our sleep. We will follow up with the ENT in 1 - 2 weeks and then we will be told when we can test the implant. Thanks for all the continued love and support.
Thursday, December 7, 2017
Cochlear implant update
Surgery finished around 630. She did well overall. We are staying the night in the hospital to monitor her. Plan is to leave tomorrow. Cochlear implant testing in the OR showed limited stimulation on one side and no stimulation on the other. It is unclear at this time if the implants will provide hearing. We love our baby girl and are excited to cuddle with her this weekend.
Cochlear implants update
They have finished with the second implant. They will be finishing up and should be done in the next 45 minutes. We are anxious to hold our baby girl.
Cochlear implants 12.7.17
Today is the big day! Surgery began at 630 am. Arrival was 545 am. The expected length of the surgery is 8 hours. This morning was one of the most difficult hand offs. Angelica is so much more aware of her surroundings. Praying this is the last surgery/procedure for some time. Angelica is doing well. They are working on the right side first. Dr. Harshburger our plastic surgeon was present this morning to assist Dr. Roehm the ENT in placement. They have mapped her nerves and are moving forward with insertion of the device. I will continue to update this blog throughout the day.
-Amanda
-Amanda
Monday, November 13, 2017
Feliz Cumpleanos Angelica
Our baby turned one. We can't believe that a year has passed. She has overcome so much in her short little life. It's crazy to think a year ago today we were at Texas Children's in the NICU waiting for her first heart surgery. I wish I could go back in time and tell myself "it will be okay". "Enjoy those newborn noises and snuggles."
We had a wonderful week with family celebrating her birthday. During the week Grandma and Grandpa Helberg came to visit her in Austin. She was spoiled with lots of love and affection and on her birthday she was spoiled with presents. She loved her tricycle, we have to hide it from her because when she sees it she fusses because she wants to ride it. For the weekend we went to Corpus to visit Grandpa Perez, Uncle Tony, Aunt Aimee, Tia Elvira, and cousins. She was not a fan of cake but loved auntie Aimee's pumpkin cupcakes.
We received good news!!! The MRI results showed the cochlear nerves are present and going into the cochleas which means she is a candidate for cochlear implants. It is very exciting but it we won't know what this means for her until after she has had them for awhile. Cochlear implants can be helpful for some and not helpful for others. I am very nervous for her to be under anesthesia once again. Baby girl has been through so much and it can be overwhelming as the parent. I know she is a strong girl. The recommendation is to have surgery as soon as possible. We are currently scheduled for December 7th. Her heart is stable at this time however cardiology has stressed the importance for her to remain healthy. RSV and flu are now being seen in the community. This also makes me very nervous to go to a hospital during this time of year. The doctor has reassured us it will only be for one night and she will not be on a floor with sick children. She will be on a surgery recovery floor. Lots of prayers for a successful surgery and to remain healthy through it all.
Christmas is just around the corner and we can't wait to spend it with her. She is going to love all of the lights. Mommy is already getting started on Christmas decorations :).
Thank you all for your support.
God bless.
Amanda and Chris
We had a wonderful week with family celebrating her birthday. During the week Grandma and Grandpa Helberg came to visit her in Austin. She was spoiled with lots of love and affection and on her birthday she was spoiled with presents. She loved her tricycle, we have to hide it from her because when she sees it she fusses because she wants to ride it. For the weekend we went to Corpus to visit Grandpa Perez, Uncle Tony, Aunt Aimee, Tia Elvira, and cousins. She was not a fan of cake but loved auntie Aimee's pumpkin cupcakes.
We received good news!!! The MRI results showed the cochlear nerves are present and going into the cochleas which means she is a candidate for cochlear implants. It is very exciting but it we won't know what this means for her until after she has had them for awhile. Cochlear implants can be helpful for some and not helpful for others. I am very nervous for her to be under anesthesia once again. Baby girl has been through so much and it can be overwhelming as the parent. I know she is a strong girl. The recommendation is to have surgery as soon as possible. We are currently scheduled for December 7th. Her heart is stable at this time however cardiology has stressed the importance for her to remain healthy. RSV and flu are now being seen in the community. This also makes me very nervous to go to a hospital during this time of year. The doctor has reassured us it will only be for one night and she will not be on a floor with sick children. She will be on a surgery recovery floor. Lots of prayers for a successful surgery and to remain healthy through it all.
Christmas is just around the corner and we can't wait to spend it with her. She is going to love all of the lights. Mommy is already getting started on Christmas decorations :).
Thank you all for your support.
God bless.
Amanda and Chris
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