Wednesday, October 20, 2010

Continuing to Get Better

Ok, ok, I have seen many inquiries about how Emma is doing today.  I can catch a hint. HA HA!  Emma had a good night and has had a busy but good day.  Her heart rhythm has been really good since they started her on Amiodarone.  They lowered her dosage and she is continuing to do great.  One challenge with her lately is her irritability level.  The Fentanyl (pain med) that she is on to help with this is becoming somewhat ineffective because her body is getting used to it.  This causes problems because she does not want to be messed with for respiratory therapy or even a diaper change.  Her stats move around a lot when she becomes irritated, so the nurses, doctors, and therapists can only do a few things at a time.  Since she is so easily irritated, they stared her Versed (a sedative) to help.  It seems to be working as she is resting now.  They also upped her calorie level on her TPNs.  They are trying to put some meat on her bones.  She is so skinny and is down below her birth weight by just a little.  They also put her feeding tube back it and started giving her breast milk.  This was very short lived though because she threw-up the milk , so they had to stop feeding her.  Mommy Sarah thinks she threw it up because she was so upset after having the tube put in and being messed with.  I have been told that we will try again tomorrow. 

Since she had a good day, Scott took me on a little date.  This is the first time we have been out together since she was born.  We went to P.F. Changs.  This was the first Chinese food I have had since becoming pregnant.  It was so yummy!  Scott and I enjoyed our time together and even stopped by Cold Stone Creamery for some ice cream afterwards.  On the way back to Children’s we heard a song with the following lyrics:

I have seen the many faces of fear and of pain

I have watched the tears fall plenty from heartache and strain

So if life's journey has you weary and afraid

There's rest in the shadow of His wings

I have walked through the valleys, the mountains, and plains

I have held the hand of freedom that washes all my stains

If you feel weight of many trials and burdens from this world

There's freedom in the shelter of the Lord

And I have seen the healing hand of God

Reaching out and mending broken hearts

Taste and see the fullness of His peace

And hold on to what's being held out

The healing hand of God

  This song seems so appropriate considering everything we have been through the past 16 days.  God is always near.  He hears our prayers and is our comfort throughout all of this. On a side note, Gramma Sharon babysat and really enjoyed her time with Emma. Cousin Samantha and Uncle David came and visited.   

Specific Prayer Requests:

1.     Pray that Emma will be able to tolerate breast milk tomorrow.
2.     Pray that Emma’s last chest tube will stop draining so that it can be pulled out.
3.     Pray that Emma’s heart rhythm continues to stay good.
4.     Pray that her lungs continue to stay up.
5.     Pray that Emma’s sats, stats, labs and neers continue to look good.
6.     Pray that Emma will gain weight.
7.     Pray that Emma will not be so easily irritated.
8.     Pray for the other families in the CICU

Thank you so much for the prayers and support.  It is days like today when I see a lot of Facebook posts wondering about updates on Emma, that I realize how loved and cared for we are by so many people.  We are truly blessed.

~Mommy Sarah 

Reading to my baby girl!

Mommy and Daddy with their little Princess before their date!
Miss Emma!  My little Punkin'!
Date Day at P.F. Changs!


  1. I heard a song that reminded me of you guys the other day... Ginny Owens, If You Want Me To.

    The pathway is broken
    and the signs are unclear
    And I don't know the reason
    why You brought me here

    But just because You love me the way that You do
    I'm gonna walk through the valley
    If You want me to

    Cause I'm not who I was
    When I took my first step
    And I'm clinging to the promise
    You're not through with me yet
    so if all of these trials bring me closer to you
    Then I will walk through the fire
    If You want me to

    It may not be the way I would have chosen
    When you lead me through a world that's not my home
    But You never said it would be easy
    You only said I'd never go alone

    So When the whole world turns against me
    And I'm all by myself
    And I can't hear You answer my cries for help
    I'll remember the suffering Your love put You through
    And I will go through the valley If You want me to

    You guys are constantly in our prayers!
    The Garvins

  2. Thank you for the update. I like many others have been checking numerous times all day. So thankful she is doing good under the circumstances.
    Even more thankful that you guys were able to take a break for each other. It's so hard, but very very important.
    Praying continually.

  3. I too have checked several times today...thank the Lord for a good day! I'm so glad mom and dad got to get away for a moment. You need your strength too. Praying..praying.

  4. Thanks for the update. I have been so worried about yall today. Glad to hear you were able to get away for a nice dinner together. The Kentys are praying for all of you.

  5. Love the song and LOVE that Emma is doing better today. Dates are important, so thankful that you had time to relax and enjoy without to many heavy concerns. Emma has touched so many lives these past two weeks, she is indeed a very special gift that God has shared with you and even the rest of us. It should make all appreciate the gifts that God has shared and continues to share. I love my special gifts and I love all of you.

  6. Thanks for the update - the ladies at work and I were wondering ALL day! We will continue to pray!!! Tell Grandma Sharon I said HI and that we are praying for her too!!!!!! MMMMMMUUUUUUUUAAAAAAAHHHHHHHHH!

  7. Praise the Lord! I was so worried about everything today! I cornered Stephanie at church tonight to make sure everything was ok! We have to have word every day!!!!! I look at the blog all day to see if you have posted anything. Since you won't answer me about the bows, I made the decision myself! Love you and love Emma! Hang in there!

  8. Guilty as charged! Thanks for the update! We are so glad Miss Emma was stable enough for you two to get away for a little while. We hope tonight brings some rest for Miss Emma, Scott, Sarah and Sharon. Sending lots of prayers!
    ~Tommie Winton Akard

  9. So, that's why we didn't hear from you for awhile!!!Out on a date!!! So glad you were able to do that. Our thoughts an prayers continue. Love ya' Kendall and Darla

  10. I am so glad to hear that Emma had a good day today. She is so precious. I pray that every day Little Emma gets stronger. Take care. Love you guys!!! Gloria Abbott

  11. Sarah-That song is one of the best ever! It has comforted me and encouraged me so many times so I am glad you had a chance to hear it and be encouraged!

  12. Scott, you planned well, and I am glad you two had a moment away from RMH and Children's together! It helped renew your strength! Kiss Emma tonight for us; we love you all!

    (Psalm 23: "...He (the Lord) restoreth my Soul.")

    Momma aka Nana Jana

  13. What a little doll! She always looks so sweet with all of those cute bows! Mommys always want their little girls to look like princess'. I have been following her story and have to admit, that I got worried when you did not post glad that she is doing well!

  14. With my son, (HLHS as well) the fentanyl and versed and morphine were great for him at first but he also got used to them. They ended up leaning heavily on Chlorylhydrate. It worked wonderfully for him through his Glenn Procedure and the month he had to stay in hospital afterward. I've been praying for your little girl and her long road to recovery....thank you for the opportunity to read about her.

  15. Glad all is well! Checked the post several times yesterday. Love all the pics! Continuing to pray for Miss Emma, and her mommy,daddy, and Gramma Sharon too!!
    Jack and Laura

  16. Thanks for the update Sarah. We are continue to uplift you all in prayer daily. So glad that you and Scott were able to have a date a get a little break. The picture of you 2 at P.F. Changs is so cute. We praise God for His continued answered prayers concerning our precious neice Emma. It is so Great to see how he is working in her life.
    We love you all,
    Uncle Terry and Aunt Debbie