Wednesday, March 26, 2014

So Much to Say

Daddy Daughter Dance 2014
Tomorrow morning E will be having surgery to hopefully improve her voice and give her better volume.  In January she was "officially" diagnosed with a paralyzed left vocal cord; a result of pda ligation surgery done when she was 12 days old.  At the time of her pda ligation, we were told there was a 20% chance that her vocal cord could be paralyzed.  We have since learned that with micropreemies (babies less than 2 pounds) this chance is actually much higher (perhaps as high as 67%).

E has always had a very quiet voice.  As a baby, when she would scream until her face would turn red and tears would flow, but no sound would come out except for some squeaks and hisses.  We have always suspected that her cord might be paralyzed, but we had so many other things on our plate that her quiet voice was not a top priority.

Now that E is older, the impact of not being able to speak up is becoming more apparent.  At home or in quiet settings when we are in the same room we can hear her.  It is tricky in situations where there is a lot of background noise, like in the car, restaurants, pool, as well as when she is across the house or in another room.  Sometimes we really struggle to hear what she is saying and she has to repeat herself a LOT.  It is also a struggle in social situations at school and in the classroom.  E is very social and makes every effort to participate in conversation, but she often has a hard time hearing what everyone is saying (because of only one cochlear implant), and they cannot hear her when she responds.  Kids are busy, and many times they do not take the time to listen closely or wait for her to repeat herself.  This has become more isolating over the years and she tends to gravitate now to conversations with adults who will make more of an effort to hear her (and make sure she hears them).

We initially learned of the reinnervation surgery from our friend Abby in Philadelphia.  Her daughter Hallie also had a paralyzed cord from pda ligation, and they were lucky to be near a voice clinic and one of the doctors who specializes in this field.  Hallie had the surgery over a year ago and they shared their good success with us. Abby was kind enough to talk to Hallie's doctor and surgeon about E, and she referred us to someone local who could help us.

Dr. Brown at the University of Michigan hospital did a scope of E's larynx in January and confirmed the diagnosis.  He was very optimistic about us pursuing the surgery for E and expressed that he feels that there is good hope for a positive outcome.  Hallie's doctor in Philly, Dr. Karen Zur stressed that this surgery should be performed within 7 years of injury, and E is 9 1/2.  This was not mentioned by our doctor in Michigan, but I feel glad to have the knowledge so I can have realistic expectations.

The reinnervation surgery will not "fix" E's vocal cord or make it move again, but over time it should help give it some additional bulk and tone, and prevent it from further atrophy so that E can get better vocal cord closure and more volume from her voice.  The reinnervation will take 6 months to a year to get full benefit, so at the same time E is having a vocal cord bulking procedure done which should give her some immediate results.  (Coincidently, another micropreemie friend K is having the same reinnervation surgery the day after us in Utah.  E and K had a fun Skype session this past weekend to hear each other's voices and chat about their upcoming surgeries (among other 8 and 9 year old topics of conversation:).

Once E has had a chance to recover from this surgery, we also have plans in the works for her second cochlear implant surgery on April 21st.  I just got confirmation on the date today, and am very happy to have worked it out on the first day of spring break so E won't have to miss any more school!  E's quiet voice is but one piece of the puzzle.  She also has a very hard time hearing other people in situations where there is a lot of background noise, like at school.  She has to concentrate so hard to filter out voices from background noise, and it really impacts how much she is able to catch from conversations going on around her. We have done a lot of research put a great deal of thought into this, before deciding that we need to pursue this option to help E hear optimally so she isn't missing so much.

It is really, really stressful on J and I (and E of course) to go through all of this after so long without any surgeries or hospitalizations.  We are feeling very apprehensive, rusty, and out of practice.  I would love to keep my kids safe in our bubble and never worry about any of this again, but life moves on doesn't it?  We are really, really hopeful that doing these surgeries will improve E's quality of life by making communication easier for her in the long run, particularly in light of the other challenges she faces.  E is very social and wants her voice to be heard.

She has so much to say.

Daddy Daughter Dance 2014

Daddy Daughter Dance 2014


Anonymous said...

Hope all goes well on her vocal cord surgery! So excited to read about the second implant surgery, that should make a huge difference for her! Will await updates here.
Nancy Roddy

Anonymous said...

She looks so happy going to the dance with her Daddy. I hope the surgeries will go smoothly and soon she'll be able to enjoy a noisy environment like a dance even more!

Sara said...

Gorgeous photos. She is such a beautiful girl, and looks so happy!

I can imagine how hard it must be to be facing two surgeries in such short order, but it sounds like these are going to be really important for her future. I hope everything goes gloriously well.

Ann said...

Will be thinking of Eden and you all! Hope the surgeries go as well as possible and that these help Eden hear and be heard!

K said...

I hope everything went smoothly for Eden. I'll be praying that the surgery will be successful and she'll have great volume to her voice.

Anonymous said...

i hope the surgery was a success! i'm eager to hear how she is doing!

Anonymous said...

Oh, my word, look at that precious child! When I started reading your blog, she couldn't hear, couldn't stand, couldn't crawl, couldn't speak at all. Look at the marvels time and love and doctors and hard work and prayers have wrought! Be brave, Eden (and Mom and Dad and sisters.) You can do this!

Danielle said...

Daddy and Daughter are both very cute.

Colleen said...

I'm 19yrs old and was a 24-weeker, got PDA ligation surgery at 3 years old. For my whole life I've had a low/raspy/hoarse voice, though that could definitely just be from prolonged intubation/ventilation. Hope all goes well with Eden's surgeries, it must be tough to jump back into the medical scene again. She has grown so much, she's gorgeous by the way!

Jamie said...

I was wondering the outcome of Eden's surgery has been. My daughter is 7 and we keep talking about this surgery. She was a preemie and has a paralyzed vocal cord. Just wondering if Eden's voice is much louder. Could you email me at

Anonymous said...

As a new father of two 24 weekers, I am grateful that you decided to share your story with us. It's inspiriting and filled with hope.

Your daughters look amazing. I hope the surgery went well.

Grateful - J

Rachel said...

I've followed your blog since the girls were teeny. It's so nice to see them doing well! I teach hearing impaired kids, and they all struggle with background noise. CIs and HAs only amplify sounds that are about 3 feet away. Does Eden have an Educational Audiologist or Teacher of the Deaf/HOH on her IEP team? With smaller districts, this is tricky, but getting a school-supplied FM system would be so good for her. It attaches to the CI, and the person speaking wears the mic, which cuts out background noise. Phonak has a mic that we use with our social kiddos that has a super zoom, zoom, and omni setting. She'd be able to put it on a table and hear all of her friends more clearly on the omni setting, or hAve her teacer wear it on super zoom for spelling tests. One of our high school students was just provided with an FM system through CSB. She's too young for that, but there are agencies that will help with equipment costs if there is a need. If she could try one at school, you could document the effectiveness on the PLOP for documentation to send to agencies. I have seen some FMS on ebay that are reasonably priced too, but they likely don't have warranties and you'd need an audiologist to program one.