Thursday, April 21, 2011

Annabelle's Voice

ENT came and did the bedside scope yesterday. Verdict: One of her vocal chords is not working, her left one to be exact.

Not 100% sure what this means. Right now, it's that she has little voice, her cry is weak, and it is questionable whether we can let her try and learn to "eat" right now.

They will be doing a special swallow study to determine how "non-working" the vocal chord is. My understanding is fuzzy at this point, but evidently your vocal chords play a lot of work into you swallowing... they close to help protect your airway when you swallow, so if one isn't closing, it might mean that she is at great risk of aspirating.

Unsure of treatments, if any, there are for this. I think a lot is just time... sometimes they just need time to get working again.

It's a little disheartening... but God knew all this too. Please pray with us that it gets better SOON and that she passes her swallow study so she can EAT!

Please also continue to pray for her lungs. She's VERY congested (I was on the phone with a few people and they were all like... awww I hear her coo! and I responded... no, that is her junky breathing you hear!) They think she might have just a little cold virus, which isn't great, but we can't go home until it clears up, since  her sats keep dipping and she needs a LOT of respiratory treatments (she's on 4 of them right now...) as well as deep suctioning.

THANK YOU for your prayers!!!! We appreciate them all!

14 comments:

Anonymous said...

You guys have come so far, don't let it stop you! We're still praying for all of you, and especially that God would work miracles in her voice. We know that God works in way that we can't see, and he sees the entire picture, we just see what we're going through at the moment, or our kids are going through. We can never be 100% sure of what anything means but we can be 100% that He's in control of everything.

Annabelle, you're such a lovely girl, hang in there! You're going to be A-Ok! :)

Jennifer, Micah, + kids.

mom2lo said...

Chase had left vocal cord paralysis after his Norwood and had to be on "thickened" feeds for his first 10 weeks. A lot of the vocal cord damage is healed on its own so hopefully that will be the case for sweet little Annabelle! Continuing to keep you all in my prayers!

Lis said...

Hi there. I know my situation is totally different from yours, but...my vocal chords were damaged in an assault 7 years ago. I had a "soft voice" for several years and difficulty swallowing with an occasional mute day here and again..but..with practice and I imagine a crying baby should get lots of that ;) I, as you, believe in miracles.I second Anonymous in that you've come so far, don't let this bring you down..Also, I remember the days of being told my daughter would never walk or talk and that she was losing her hearing...Doctors don't know everything and God is still on the throne! Happy Easter to you and your family. Cont'd prayers ~Lis~

Anonymous said...

I am Praying.
Love you .

Anonymous said...

Hi, my husband's cousin had a little girl at 25 weeks and through the procedures she had to endure, she ended up with a paralized vocal cord. She has a voice now and is 6 years old. She has had to have several surgeries to help with getting her voice. I wish I could remember the name of what they do but I believe the thicken the cord so the other side can bounce off it and help them have a voice. When she gets older, she will have at least one more to do a more permanent fix for it. Stay strong, you guys have been given such a beautiful little girl and she will overcome this, just as she is overcoming her heart troubles! :)

Ralene said...

My left vocal chord is paralyzed from that surgery. B/c she is so young, if it really isn't working--there may be hope yet. Because she is so young, likely she will overcome it. Today, I can talk (obviously), I am just quiet. People can't hear me in crowded places unless they are right next to me. It can be frustrating at times, but it's better than not being able to talk at all!

Praying she gets over this cold!

Karen Lange said...

Still praying! Can't believe she is 9 mos. already.
Blessings and hugs,
Karen

Riete said...

As she is so young and everything is just starting to grow she will probably grow over it. Especially as we believe in miracles by a Father who is our Healer.
Keep your hope and your faith up :)

Still praying (of course) ♥

Aleisha said...

WE ARE STILL PRAYING EVERYDAY. I HEARD ON K-LOVE TODAY A MESSAGE FROM A CHAPLAIN THAT MEETS WITH UNITED STATES SENATORS ON A WEEKLY BASIS[HE WAS CHAPLAIN TO THE US NAVY FOR MANY YEARS]HE WAS TALKING ON KLOVE ABOUT A MESSAGE TO EVERYONE THIS EASTER WEEKEND AND IT REALLY TOUCHED ME . HE SAID ALOT AND I WISH I COULD REMEMBER ALL BUT MAINLY HE WAS SAYING THAT THE SAME GOD THAT ROLLED AWAY THE ROCK [JESUS' TOMB] IS THE SAME GOD THAT WE SERVE AND HE IS MORE THAN ABLE TO ROLL AWAY THE"ROCKS" IN OUR LIVES, NO MATTER WHAT THAT ROCK IS. I KNOW YOU ARE SUPER BUSY BUT I'M SURE THAT THEY HAVE THE WHOLE MESSAGE ON K-LOVE.COM, IT BLESSED MY HEART AND I'M SURE IT WOULD YOURS . GOD BLESS YOU

Cheryl said...

My daughter Megan, who also has HLHS, was diagnosed with a paralyzed left vocal cord after her Glenn surgery. I think it was paralyzed beforehand, though, b/c she also didn't coo, or babble much, and she was silent when she cried (so it must have happened during the Norwood). She also had trouble drinking and eating for quite a long time. She is now 6, and has a high, fairly quiet voice, but she does talk. She is able to eat, but she still has trouble sometimes. It seems to be an unfortunate side effect to the surgery, sometimes. You will all learn how to get through this! Praying for you all,
God Bless,
Cheryl, mom to Megan, HLHS, and five other blessings

Beverley said...

After many intubations over the years (one over 5 weeks) Leyda had no sound for months and gradually got a whisper and full volume! And then lost it again due to a stroke....but she is talking again! I am confident it is just that she needs lots of time!

Fishers of Men said...

Krista, don't know you, but love you! I have been following your blog for months (found you through Bowen's blog) and have been praying! Thank you, thank you, thank you for sharing your journey! I continue to pray for each step along the way!

I live in awe of God's utter mercy in the life of our CHD son Daniel, age 3. He should not be alive today, especially because he has never had an operation and continues to live with the same defects with which he was born and the same bluish hue. Surgeries were not available to him the first nearly two years of his life in a small village in the Mexican state of Veracruz. Since he joined our family, all the avenues for medical care that we have explored continuously close, with always one door slightly open that keeps us waiting on the Lord. From all tests so far, he does not appear to be a candidate for the Glenn due to his numerous and complex defects. A transplant does not seem to be an option because it appears it would need to be a heart/lung transplant, which are not available in Mexico, and he would not be a candidate in the U.S. because he is not a citizen. So, day by day the Lord impresses on my to simply enjoy Daniel for the time He gives us together. So, we try to live one day at a time, like everybody else, and enjoy each moment, like everybody else, but life seems to throw itself in our face a bit more often than for many (you understand.) Well, thank you for "listening" (reading!) I wish I could give you a big hug!

Rdio said...

Hi,
My 7m old (hypoplastic right heart) had left vocal cord paralysis after his Glenn performed at 12 weeks old. After a swallow study was done, he was determined not to be aspirating, so we were able to go back on the bottle. He still has the full paralysis 4 months later, but his right vocal cord is compensating nicely and he has some voice that has gotten a little louder with time. The ENT says that it is most likely that healing will happen the first 9 months.. after that, still possible but less likely. There is no treatment as it is too dangerous for the airway of a child to try to move the vocal cord. There are treatments for adults though. Praying for Annabelle's healing!

Christin said...

I hope Annabelle passes the swallow test! I just remembered this morning that David Archuletta (from American Idol a couple seasons ago) has a paralyzed vocal chord and he has an amazing singing voice. I think it's partly due to the paralyzed vocal chord that gives his voice it's unique sound. So maybe Miss Annabelle will be a singer when she grows up :)