February is Heart Month including CHD Awareness

Angelica is doing great.  She is very happy and playful.  Her cardiologist has pushed out her visits to every 3 months.  We were seeing her every month previously so it has been nice to get some time in between appointments.  I often forget that she has a heart condition.  This month has been a reminder of CHD and heart disease.  I've seen several stories of other kiddos.  One that sticks is of a two year old with hypoplastic left heart syndrome that did not make it to her 3rd birthday.  This is a reality for heart babies.  We do not know how long they have.  They will seemingly be healthy but with growth and developmental changes sometimes their little hearts can't keep up.  I do not know what the future holds for Angelica but I have faith.  We cherish every second with her.

Cochlear implant left side update

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

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

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.

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