Sunday, October 11, 2015

10 Years!

October 4, 2015 marks the 10 year anniversary of the day that will never be a joyful celebration for me.

Just a short post (from my facebook post) now, but I will write a 10 year recap.  Here are the 2 posts I made one, in honor of my amazing daughter Kaitlyn and the other in honor of my lost angel Corinne:

To my precious Daughter Kaitlyn:
To my most amazing, wonderful joyful Daughter! Happy 10 years old today my special girl!!! I love you with all of my heart! You are so amazing and joyful and we can all learn something from the way you view life, full of joy, excitement and happiness! I heard one of your girlfriends say at your slumber party, "I've never seen Kaitlyn cry, ever. She is always so happy and excited over everything!" That brought tears to my eyes. Look how far she's come! She even scored ...a goal at her soccer game yesterday! Between the 5K Color Run with her mom, which didn't slow her down at all for her soccer game where she is the center forward and then a slumber party, it was quite a pre birthday day!! Pancakes this morning, then 2 more soccer games today (Quinn too) and then the neighbors over to celebrate Kaitlyn again! I love you my dearest Kaitlyn, I am one lucky Mama, you have taught me a lot!

To my precious Angel daughter Corinne:

Today 10 years 7 am my twin daughters were born waaay to soon and my life changed forever. Corinne Margaret and Kaitlyn Elizabeth were born at 26 weeks, 3 months early, each weighing 1 pound 10 ounces.each... a few hours after delivery the doctors came to tell me that they just couldn't get Corinne to saturate enough oxygen. her lungs were too damaged from going without amniotic fluid for 10 weeks since my water broke. They disconnected her and handed her to me. ... She passed away in our arms.
October 4th as much as of course it's my joyous happy daughter Kaitlyns birthday it was not a joyous day for me and I always struggle a lot with my emotions. It's this day that I truly really think more about how things would be so different having my two daughters here, how kaitlyn wouldn't have been affected by being born so early...
after Corinne passed away in my arms I wasn't able to do anything but hold my hands over Kaitlyn for 6 weeks. I longed to hold my other twin but her health was very touch and go. We almost lost her as well many times.
This at 10 years seems like such a milestone year as well.
I love you and miss you terribly Angel Corinne.

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:

from the KSL story  on  "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!