Tuesday, December 21, 2010

Feeling like a yo-yo

Several weeks ago, a good friend of mine texted me and said she was listening to Martina McBride's song "In My Daughter's Eyes" and thinking of us.  I knew the song and love it, but couldn't remember all of the words.  I thought I had the CD since I love Martina, but I searched and searched and couldn't find it. I thought about looking up the words, but knew it would probably give me a heart attack, so I didn't. 

Today, Amanda and I were leaving Duke and in the background on the radio, there it was.  The song I had wanted to hear but not really.  After the past few days, it seemed like a sign.  I turned it up so I could really listen and warned Amanda I would probably cry (as she was probably thinking "Oh no, Rebecca is driving and getting ready to burst in to extreme tears!!!).   But I held it together as not to embarrass myself and get us in a wreck.  It made me realize that I have become such a strong person - stronger than I ever thought I could be.  Most of you who know me know that I cry at the drop of a hat.  It can be happy tears, sad tears, mad tears, humble tears, whatever tears - you name it.  A few of you are scared of me when you know tears will be coming (you know who you are at work.....).  So I was quite proud that I did not burst into convulsions listening to the song.  Mind you, if I were alone in the car, that would have happened for sure!  God knew not to play the song while I was alone though!

But the song is totally appropriate and means more to me know than ever.  Our daughter makes us better than we could ever wish to be.  Below are the lyrics to the song I am talking about:

"In My Daughter's Eyes"

In my daughter's eyes I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes

In my daughter's eyes everyone is equal
Darkness turns to light and the
world is at peace
This miracle God gave to me gives me
strength when I am weak
I find reason to believe
In my daughter's eyes

And when she wraps her hand
around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all about

It's hangin' on when your heart
has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes

In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy
she made me
For I'll be there
In my daughter's eyes

 Ok, now that I have read it, I have released the tears!!!  :)

Anyways, onto the yo-yo day.  Most people talk about yo-yo dieting.  This is more like yo-yo emotions. 

So after all of the testing yesterday and the beginning of getting some answers, Claire slept so soundly according to the nurses.  As of rounds this morning, the doctors were talking about sending Claire home and us just being on the lookout for any signs or symptoms of the cysts affecting Claire.  They said I was right and knew when she needed this last ultrasound, so I would know when she would need to be looked at again (small victory!). 

Claire had a pretty good morning while we were there.  I had to leave early b/c I thought I had a cavity (turns out it wasn't thank God) and as I was telling Claire goodbye (well, really just staring at her in la la land), the doctors walked up.  I didn't even notice them where on a normal basis I am constantly on the lookout for them!  I could tell on their faces that something wasn't quite right. 

The doctors stated that from the CT, it looked like the large cyst was pressing against Claire's vena cava which is the main vessel that carries blood back to her heart.  This is a concern they have had since the beginning - making sure the cyst doesn't compress the 2 main vessels - the VC being one.  They said this is probably the reason for the lower extremity edema she has been experiencing for a while.  Since the cyst will probably continue to grow larger, it could eventually press against the aortic vessel (one that carries blood away from her heart and to her organs).  This would not be good because it could cut the blood flow off to her liver or other organs.  They do not want blood flow restricted to any organs. 

Claire's body has learn to compromise from the restricted blood flow to the vena cava by using other blood vessels.  They other blood vessels have somewhat taken over the job of the vena cava.  The neonatologists were going to consult again with the liver surgeon and cardiologist to see how this would change the plans.  So basically they were saying Claire is not going home now. 

I felt a range of emotions - scared that something was wrong, happy that I was right, reassured that they wanted to keep her at Duke to watch her and not send her home with something wrong, sad that we wouldn't be spending Claire's first Christmas at home, and petrified at the thought of what this all meant.  Unfortunately, I had to leave and head to the dentist - hence hearing the Martina McBride song.....

Claire had a good afternoon and rested well.  I finally called our favorite doctor around 8 to see if she had an update.  I always hesitate to call because I know they are all so busy.  But she never seems to mind talking to me and answering our questions.   We love her!  She had talked to the surgeon again and from the CT, the surgeon says the resection would be more complicated than she originally thought due to how the cyst was in the liver versus the veins in the liver.  Sigh.  She said the surgeon thought at this point it would be ok to send Claire home, but maybe aspirate the cyst first.  I freaked out knowing that as much as we want her home, I don't think she's ready! 

Our favorite doctor (maybe we should call her OFD for short from now on) told the surgeon that every time the drain the cyst, it comes right back based on the 3 times they've aspirated it.  The attending doctor said he wanted to keep Claire at Duke to monitor her, so I am hoping he sticks to his guns. 

The surgeon said the earliest that she would be able to do anything would be around January 10th b/c the other liver surgeon was out of town.  She is also touching base with the cardiologist as far as Claire's heart and heart surgery go.  Ideally she would like for the heart surgery to happen first.  OFD said that they have done this kind of surgery before but they have to use "certain techniques" since it's more complicated. 

This is so scary!  We are just hoping and praying everything will work out like it's supposed to and that Claire is happy, healthy, and home in God's time.  Please, please, please continue the prayers for Claire and her doctors.  She deserves the best and we are working hard to try to make sure that happens. 

Sorry for the long post today!  Lots of stuff going on!  Please keep the prayers coming.  That's the best gift you could ever give to Claire and our family.  


The Scott Family

PS - we did good to get out a few (I mean FEW) Christmas cards this year.  We haven't bought any presents for anyone (except Claire's 2 gifts) although we know and wish we could give something to each and every one of you who deserve it.  Please forgive us this year and know that we will do better next year.


  1. Rebecca~ you, Trent, your family and most importantly Claire, are amazing! You all are so strong! I read your blog today and could not quite crying...I could barely read it the whole way through because of all the tears. We have been thinking and praying for you all. She is a tough little girl and she will make it through. I've come to the conclusion that these kiddos do so well because they have no idea what is going on. All they know is the love they get from us and think everything is just fine. Keep being strong! Like I said before, Claire is one lucky girl! I know you want her home for Christmas, but just remember, no matter where you are, you have the best gift! (Now, if only I could listen to the words I preach) Hang in there and take one day at a time. We will keep praying for you all. Take Care, Christin, Dan and Remi

  2. Your and Trent's gifts to us, Rebecca, are the amazing insight that God is giving you as you mother and father your daughter. Amazing insight to know that "a certain 'thing'" needs to be done...
    Your next gift is the confidence of your faith, a faith-gift from God that you give to us as you tell your story of holding your child before God's Throne...
    Your next gift is the selfless generosity by which you both continue to give yourselves to others.

    This child has become a means by which many, many people have strengthened faith, hope, and the Presence of God.

    Thank you.
    Thanks be to God, who loves us more than we could ever imagine; who provides for us with exceeding generosity; who surrounds us with everlasting arms and with immeasurable grace.