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Friday, June 05, 2015

Kaitlyn and her vocal cord Reinnveration surgery

Sorry I so rarely post anymore, but for those Micro Moms out there, this was too important not to post:

As many know Kaitlyn's left vocal cord was paralyzed after her PDA heart surgery saved life (at 4 days old).  But a consequence of this surgery (for many) is left vocal cord paralysis (Not only making her have a VERY quiet voice (as an infant she didn't have a cry, it was silent) and also caused her to have severe feeding issues and she didn't eat orally  until she was 4 years old as she was 100% tube fed). 

There is a surgery to help with this!! it's called  Vocal Nerve Reinnervation.  or more technically  laryngeal reinnervation (LR) as treatments for unilateral vocal fold paralysis (UVFP).


After doing a lot of reserach I discovered that this surgery shoudl be done as soon as possible after the injury (or in this case the PDA ligation which caused the paralsis of the nerve)  Unfortatenly, I didn't learn of the surgery until Kaitlyn was 8 years old.  We wanted the "best" docotor to do this surgery so we flew to Utah to see Dr Marshall Smith at University of Children's Hosptial.  It took many months of work to get my insurnace to approve an out of state proedure. But persistance paid off and we finally went for an evaluation and the surgery in April 2014. 



Here are some studies articles from Dr Smith:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3183158/

http://healthcare.utah.edu/publicaffairs/news/archive/2011/10-06-11_Vocal%20Fold%20Paralysis%20.php

 http://www.ksl.com/?sid=20601197

from the KSL story  on KSL.com:  "The surgery paralyzed the right side of Burnett's vocal folds. He had to undergo surgery and therapy at the Center to strengthen the left side of his vocal cord. "It was paralyzed in the open position," Burnett said. "Now the surgeries that Dr. Smith performed allow the left vocal cord to vibrate off the right one." 

This is the surgery Kaitlyn had :  from the same article:
"Currently, doctors at the University of Utah Voice Disorders Center are trying new techniques to better heal voice disorders — a surgical procedure that may be available to restore tone to the paralyzed vocal cord.  "We graft in a nerve from another nerve in the neck to the paralyzed nerve to give it more tone," said Smith. "And that procedure is giving good results."

Some pre surgery pictures in Utah:




 Here is a video from this visit, pre surgery so you can hear her quiet voice:

 
 A post surgery picture (so you can see the small surgery bandage)


The surgery itself took over 3 hours, but it was just an overnight hospital stay.   She had her adenoids removed at the same time (hoping that might cut down on the many colds she catches)  that was likely a harder recovery than the reinnervation surgery was.  There was very little pain post surgery, nothing more than Advil cloud handle for a few days.  We flew home 2 days later, Dr Smith just wanted to make sure there were no complications (there weren't)

 Dr Smith told us we wouldn't really hear any difference until approx 3 months post surgery.  and he was right!  We didn't hear any difference whatsoever, which was a bit disappointing, I guess we had such high hopes we'd notice something.  But then one day, we noticed something. All of a sudden her voice got louder (we looked at a calendar and it was literally 3 months post surgery).  From then on over the next 9 months, her voice continued to get louder.  She was rarely asked any more "what's wrong with your voice"  "why is your voice so quiet?"  "why are you whispering"  And my dad, (who is a bid  hard of hearing) said he could hear her for the VERY FIRST TIME!  When I told that to Dr Smith he told me tears came to his eyes!

 Here is a post surgery video 13 months after:



I'm so sad I never took a picture with Kaitlyn and Dr Smith.  . 

We are so so so very thankful to Dr. Smith and his entire team that helped take such good care of Kaitlyn and gave her so very much.  I can't stress enough how much this has literally changed her life.  Kaitlyn loves performing and takes plate in our school play.  Last year, she couldn't be heard at all during the play.  This year, the directors gave her a small singing part duet as they were so thrilled as well.  Hopefully next years play she'll get a real part now that she does have a voice!  at this years performance you could hear her without a microphone, and she was louder than some of the other actors!  I was beaming, so was everyone in the audience who knows her story.  parent after parent came up to me saying, "wow, Kaitlyn's voice was so loud!'

THANK YOU DR SMITH!  I am just so eternally grateful to you and your research into solving this problem.

BUT parents out there, please know that Dr Smith's studies do show that the sooner you can do this surgery after the paralysis happens, you get better results.  The paper should be published soon (in which Kaitlyn will be one of 30 participants).  We were so happy to fly back out so that her results could be part of that study. 

Oh and a side-note.  A fabulous ENT from Stanford (Lucille Packard Children's' Hospital) actually few out to Utah with us to observe Dr Smith do Kaitlyn's surgery.  She has since done this surgery here back at Stanford here in the SF Bay Area. Dr Anna Messner.  I wanted to be sure to let folks know reading this there there is a San Francisco resource for this now as well! 

 PS, kaitlyn got braces right after her surgery last year and JUST had them off yesterday!  Here is a picture of her post 1st round of braces. 


Here she was rock climbing in Reno the weekend prior to our going to Utah:

and our family (with Quinn, now 6) in Truckee/Tahoe Memorial Day:

My daughter is now 9 years old, hard to believe she was 1.5 pounds at birth and had so many medical issues.  She is one amazing, wonderful, happy, delightful, bright amazing strong-willed girl!  she is willing to try anything! It makes my heart just soar to see how far she has come!  I'm one very lucky mom!  Kaitlyn I love you, you are going to do amazing things with your life.  I couldn't be more proud of you!


Saturday, March 29, 2014

Update on K's Vocal nerve reinnervation surgyer

Kaitlyn was released this morning from the hospital and had a ton of energy (so we tried to get out for a bit to go to the natural history museum, but that lasted for about 20 minutes and we came back home to the hotel).

Kaitlyn is one amazing little trooper and we are so proud of her. She’s in good spirits but tired.

She had a rough afternoon yesterday in recovery yesterday, vomiting and such, but by early evening, she finally kept food down and had a good night of sleep.  She was released around 10am this morning after her surgeon came by and said again she did great.

I have to say Brian and I are fairly exhausted, just from the stress of it all, especially leading up to it.  Kaitlyn doesn’t remember much going in to the surgery (thankful to the Versed (sp?) she had) which was especially great as she didn’t get to see her parents  trying to fight away the tears as we said good by to her at the operating room door.

The hospital here in Utah (University of Utah Children’s Hospital) has been amazing as well as the university hotel just around the corner from the hotel.. We only have the best things to say about our experience overall.   And we just love our surgeon Dr Marshall Smith, we were so happy we made the trip here.  He really is a pioneer in this field and has led the way for this procedure.  One of the ENT doctors from Stanford flew out to observe as well.

She’s still quite tired and in some pain (especially with eating and swallowing), but she is just getting Ibuprofen for the pain  (we have something stronger, but our little trooper is doing ok). 

We don’t hear any difference in her voice now, but that’s to be expected. The nerve that was connected to her non-functioning vocal cord will take some time to start generating impulses. Keep in mind this surgery will not give her a fully functioning cord again, as that nerve was severed when her heart surgery was done.  The hope is that her vocal cord wills start to “bulk up” as her brain and impulses start to try to control it.   It will not start functioning again.  But all that is needed is to close the open gap when her functioning cord tries to meet the non-moveable cord.  It could be 4 months till we notice any improvement, and then it could continue to improve for up to a year.

Thanks everyone for your well wishes on Facebook and texts as well.

Monday, March 24, 2014

Reinnveration of Vocal Cord nere from PDA ligaton


Brian, Kaitlyn (who is now 8 years old) and I are flying to Utah on Thursday next week to have a surgery done on Kaitlyn’s vocal cords (as well as have her adenoids removed).  Unfortunately this surgery was supposed to have been done within 7 years of injury (Kaitlyn is now 8).  I heard of it from a friend of mine back east who had it done on her daughter with great success (at age 7).  I had to fight my insurance for 3 months for them to approve us going to Utah, but I prevailed and we are heading out next week.

 Here is a link to a medical article published by the doctor we are going to on the procedure:
 
It is called a vocal cord nerve reinnervation.  It's ben shown that at least 35% of PDA ligations are resulting in paralyzed left vocal cords. I'm hoping that other parents will look into this procedure for their children as it has been shown it works better if this procedure is done within 7 years of injury.  (Kaitlyn is over 8, but I only just heard of it).


The surgery is Friday morning…

Thankfully it’s a low risk procedure and Kaitlyn should only be in the hospital one night.

Wednesday, March 20, 2013

Where has Liz Been?

Hi, wonder if I have any blog readers out there any more....(please chime in if you are still around??)

First of apologies to all for going MIA for so long.  I've struggled with figuring out where to start again when so much has happened, and my serious lack of time just led me to not writing anything. 

So rather than doing a "recap" of the last few years, I'll just start in from now and hopefully I can start blogging regularly again.

My little former Micro Preemie is Skiing!  And she's skiing Black Diamond runs!

Here is a link to 2 recent videos of her skiing at Alpine Meadows .


and another one:



I just had Kaitlyn's 7 year old check up (yes she is 7.5 but who's counting) and i was hit with a lot of emotions as the two of us walked in hand-in-hand (albeit terrified she was going to get a shot, she gets a bit OCD of fears), thankfully, as we've already passed flu season (and had the flu in the fall) no shots, so she was all smiles after the nurse took her stats.

44 pounds and 47".  Wow. 

The entire "physical" was more of the doctor asking Kaitlyn about behavior type issues, do you wear your helmet, do you help do chores around the house, etc.  Wow.  We have come a LONG LONG way. 

In winter years past we still spent many times at the docs due to all of her lung issues, many times doing breathing treatments, and if you can believe it, Not one time this winter!  oh my!  amazing!

She eats like a champ.  she loves sushi and will always try new foods.  This from my little one who had a feeding tube until she was 4 years old. 

Yes (remember I said I'm not going to recap the last few years) she has been diagnosed with ADHD.  Yes, she can be really hard to parent at times when she gets the "sillys" as we call them.  Yes it's very very frustrating. esp when I compare her to other children and notice that she is definitely "different".  Team sports can be very difficult.  Basketball, oh my.  so very frustrating.  Hard to see her get the medal at the end of the season and have her be so bummed out that she said to me she didn't deserve the medal.  So sad when she was so excited going into it.  That's on me.  I feel terrible. Both of us try so hard to get her to try to pay attention, to understand the game.   she is playing with other girls her same age (or a year older) and they are soooo much more advanced than she is.   I wish I didn't get so frustrated when she is flighting about the court.

I cry all the time at sappy kid things.  I still have so many flashbacks when Kaitlyn is up on stage or something like that. I think of so many things:  Of not being a mom.  Of loosing her sister.  Of how sick she was. of not knowing what type of life she'd have.  Look at her now!  she is AMAZING!  and then the tears come...my friends expect it now from me, oh liz is crying again! 

  Quinn is 4.5 years old, he's an emotiaitonal little guy, but boy is he darn cute (and he knows it too!) Life is good,  crazy busy... We all have our health.  We've come a long way since 2005 when my story started on July 26 when my water broke.  (a date routed in my memory FOREVER). 

Short and sweet, but at least it's a post!



Saturday, December 10, 2011

Worldwide Candle Lighting

Having lost a baby myself, this is a really powerful worldwide event.

The closest location here in Marin as it the Unity Church in Hamilton, Novato. I’ll likely be attending.

If you can’t go in person, please light a candle from 7-8pm on Sunday 12/11 in honor of all those children who passed away much too soon.

Candle lighting begins in New Zealand and circles the globe for 24 hours, and there are some local events as well. More information is at
http://www.compassionatefriends.org/News_Events/Special-Events/Worldwide_Candle_Lighting.aspx

Tuesday, October 04, 2011

October 4th 2011 - Kaitlyn turns 6 today.

Well, as many of you know, I don’t seem to blog much any more ..Guess life kids and a busy working mom has gotten in the way of a lot.

But just had to write today, Today is my twins birthday….October 4th.

Still not an easy day for me, all my mind goes to is a scene I play over and over in my head as I’m being wheeled to the OR saying it’s too soon, it’s too soon and then later holding my daughter as she passed away…not really the best of memory days for me..

Today my surviving twin turned 6 years old! So hard for me to believe that she is really 6 years old.

She’s doing really, really well, all things considered.

From a 26 1lb/10 ounce little baby to a 33 pound TALL little girl that is doing really well in Kindergarten.

We had our age 6 IEP transition meeting and thankfully my school is really incredible and basically “found” a way for her to qualify again. They are so great at understanding that we still don’t really know if she is going to have issues when it comes to learning in a few more years and they would rather have the IEP in place (as would I) in case there are more issues that surface.

She gets preferential seating, she has a weighted Lap-buddy kitty-cat that the school provides to help stop her wiggles. With her paralyzed vocal cord, this allows the teacher to better hear her.

We had a doctor appointment today with a plastic surgeon to talk about correcting her gtube stoma site. He gave us 2 options to put her under a General now or wait until she is 10 and can sit still enough to do it under a local. As she is once again sick, I’m opting to wait until she’s older, it’s just cosmetic at this point, no need to rush, she’s not trying to impress anyone in a bikini yet!

And to think that this is one of our biggest decisions, that basically it’s for such a minor thing. She’s really doing well.

What I find most amazing of all is how many people tell me all the time how amazing, special and incredible Kaitlyn is. Her therapists, her teachers, strangers, people I’ve just met. Everyone comments on the fact that she is one of the most amzing, engaging children they’ve ever met and that she has a very special energy about her.

I know what that energy is, it’s her sister looking over her and making sure she’s ok. Corinne, we miss you terribly, but we thank you with the bottom of our heart for hanging in there long enough for our wonderful Kaitlyn to be here with us today and for your special looking out for her all the time.

My love to both of my girls on this October 4, 2011.

I love you Kaitlyn my sweet girl from the bottom of my heart, you are the most special, incredible little girl and I'm so lucky to be your mama. I love you Miss Kaitlyn!

Thursday, September 22, 2011

Micro-Tinis in SF for our Micro Preemies!

Dear friends,

 If you aren’t aware of my story, I just wanted to tell you that I delivered extremely premature twins at 26 weeks gestation, and my life changed forever.


I have gotten involved with Nick Hall, who also lost a twin as I did with his wonderful non-profit named after the twin he lost: Graham.

Graham’s Foundation delivers NICU care packages to families who are currently experiencing the stress of delivering a micro preemie baby.  These care packages will be for our very own Bay Area Hospitals, like CPMC , UCSF, Alta Bates and more.
I’m hoping you can join me (I am the local sponsor for this event) in San Francisco on October 27th!

If you might be interested in helping our or donating to the silent auction for the event, please let me know also!

More info about the event:
Every year 50,000 extremely premature babies – those weighing less than 3 pounds and delivered at less than 29 weeks gestation – are born in the United States, and rates of prematurity are going up each year. The earliest newborns to survive often require intensive care for months and undergo countless medical procedures. Parents of these babies frequently feel isolated from friends and family due to the serious risk to their babies’ health, and this experience is unlike any they expected with the birth of their child.

Jennifer and Nick Hall understand the joys and the heartaches that are a part of the parenting journey that comes with extreme prematurity – their son, Graham, and daughter, Reece, were born at 25 weeks gestation. Graham was with them for just 45 days, while Reece spent four long months in the hospital before coming home. It was their experiences that inspired them to create Graham's Foundation.

You are cordially invited to San Francisco’s inaugural Micro-Tinis for Micro-Preemies fund-raiser, an evening filled with inspiring stories, endless martinis and tasty treats, all to help Graham's Foundation continue their mission of supporting parents of premature babies.

When: Thursday, October 27, 2011, 6:00 - 8:00 pm

Where: Hotel Monaco at 501 Geary Street in San Francisco

Ticket price: $75/person, $25/parents of preemies

For more information and to purchase tickets, please visit our website.
event website

To order more than two tickets or information on sponsorship opportunities, please email Jen@grahamsfoundation.org