Monday, January 3, 2011

Hard Road Ahead

Watching my Birds!

Hard Road Ahead

Nobody said that this road would be easy.  However, that does not mean that we wish things were different.  Today we met with a team of doctors that are in charge of Emma’s care.  We heard some things at the meeting that we expected and some things that we didn’t.  So, here is what we know.  Emma is a puzzle to the doctors.  That is what every parent wants to hear right?  The doctors confirmed what we pretty much knew and that is that they are not really sure what is going on with Emma.  Why is Emma having eating problems, Why can’t Emma come off the vent?, Is it her heart?  Well, the best answer they can give is that it is her heart, so we need a new one.  We have pretty much done everything that we need to do to get listed for transplant.  So, hopefully by the end of the week we can be officially listed and start accruing days. 

Now, some of you are probably thinking, have we thought about consulting outside opinions, or are we pushing/advocating enough? To understand fully what we go through on a daily basis, one must walk in our shoes—which, we wish upon no one.  Emma is rare, or like we like to say, SPECIAL!  In fact, a lot of hospitals would’ve refused care to her, but Dallas CMC is working hard to try to become a leader in the area of HLHS with RAS, so with their hard work and God’s guiding hand, we have made it this far.  Emma is still fighting and no one is giving up on her.  A new heart seems to be the best answer at this point.  However, it is not a guarantee.  We are fully aware that a new heart might not fix all of her issues, but at this point, it is the BEST answer.  We have also been made aware that the average wait time for a heart is 6 to 9 months and that we could be here at least six weeks post transplant for recovery. 

So, what are the plans until transplant?  We need to try to get Emma to gain weight and work hard to wean her vent. We might at some point need to go to the cath lab to get a little procedure done to “buy us more time” with the current heart fix until a transplant.  Other than that, we will be doing “normal” baby things such as holding her, giving immunizations, sitting her in a Boppy, Bouncy, and Bumbo, working on neck/head control, etc. 

Please keep praying!  God is in control.  God is good!  We trust that he will do what is best for Emma in this situation.  We love our baby girl dearly and enjoy every moment with her.  She is growing and gaining weight.  Today she weighed around 4.8 kg.  Tomorrow will be her 3 month birthday.  Lord willing, we will be celebrating more “month” birthdays in (and out) of the hospital with her. 

Specific Prayer Requests:

Specific Prayer Requests:

1.     Pray that Emma can gain weight and nutrition
2.     Pray that Emma can come off the vent
3.     Pray that Emma can have good blood gases
4.     Pray that Emma can stay infection free
5.     Pray that the PERFECT heart will be generously given to Emma
6.     Pray that the Doctors can figure out the best plan for Emma
7.     Pray for the future donor family
8.     Pray for the doctors, nurses, and staff in charge of Emma’s care
9.     Pray for the other kiddos: Ella, Ella, Lyric, Blake, Justin, Haven, etc. who are fighting their own health battles
10. Pray that Scott and I can stay strong through this process

Cheering on OU!
Big girl sitting up in the Boppy!


  1. Oh my goodness,she is so cute! Her eyes are adorable! May God bless Emma and your sweet little family.

  2. We are still praying daily for you all. God will guide the medical team in solving this puzzle. Stay strong, close to each other and close to our Heavenly Father. We love you and you are in our constant thoughts. Sheri, Jade, Dylan and Pres

  3. I continue to pray for you.
    Kerith Leffler

  4. Happy 3 Month B-Day from the Rhynes family in TX! Over the past year we have learned that Children's Medical Center is amazing in so many ways...we have had health issues pop up with the children and they always know exactly what to do. From nurses, to child life, social workers, to surgeons, etc. they are so hard working, cutting edge, and caring. I had no idea what an amazing place it was for the patients and the community and we are all better people for experiencing it. So glad Emma is in God's and CMC's hands!

  5. Scott and Sarah,
    We are praying daily for you, Emma, and the doctors/nurses taking care of her. She is a beautiful and special child and she has great parents and grandparents!
    In Christ, the Terrells - Edmond

  6. You all remain in my thoughts and prayers. It will be hard praying for a new heart because that means another mommy will have empty arms, but I will be praying every day for her new heart. I hope this waiting road and new journey are easier than the journey you have traveled...for all of you.

  7. Hang in there..little Emma will be okay. I want you to know somebody is praying for her, all the way from the Philippines.

  8. Happy 3 month birthday Emma, you are such a big girl and such a fighter!! You all are in our prayers daily and I know that God is holding all of you in His hands giving you strength everyday to face the challenges ahead. Sarah and Scott you are amazing parents the love you show Emma is beyond words. Stay strong and courageous!

    Rogers' family

  9. Hoping a praying for you and your baby girl. Love and many good wishes and prayers . Carolyn Rutherford


  11. I can see so many changes in Emma in each update! She is growing! Keeping you in prayer. Praying God will give wisdom to the doctors about what is best and how to help Emma. Praying God will give you strength to take each day and what it holds. Praying for Emma and God's plan for her life.

  12. Sarah, You and Scott have to make the decisions that you think are best for your baby girl and I think that you have. I love and admire the courage and faith that you and Scott have, WE do not know what is best because NONE of us have ever had to deal with this. You are both smart and good Christians and I know that you let God guide you and sweetie that is all that counts for the rest of us..or should be. I pray that Emma gains weight soon and that her good days will get better and that you and Scott stay strong. I love you all and wish I could give you a big ol hug....Just know that for know I do hold you close in my prayers and thoughts every day! Denise

  13. Praying for you all.

    Jill Thach
    Santa Barbara, Calif.
    (Betty Thach's sister in law)

  14. Emma is indeed SPECIAL. She is fearfully and wonderfully made. God knew her before she was even conceived and He is in total control of her care right now.

    Hopefully noone would ever question your decisions regarding Emma's care. There just aren't simple answers to some things. Someday the 'puzzle' of Emma may help with progress being made in the care of other babies with the same health issues. God knows what He is doing. He is walking with you guys through every step of this journey. You guys are a witness to God's faithfulness and love to every person you encounter. When I think of how much you are going through, I think of Esther 4:14. God is working through you to accomplish His will. You guys are doing a GREAT job of caring for Emma and representing the Kingdom of God.

    I love to see updates, especially ones with pictures. Love to see those eyes, even though many times it brings tears to mine. Her eyes are VERY expressive. She is such a cutie!!

    I continue to pray for you and Emma every time she comes to my mind, which is several times a day.

    Joy/Chandler, OK

  15. You don't know me, but I am Adam and Heather Everett's aunt.I have been following your story since Parker was born..unfortunatly his little heart couldn't take it any longer...but I just wanted you to know you have such a cute little girl and I wish all the best for her.We will keep her in our prayers

  16. You don't know me, but I am Adam and Heather Everett's aunt..I have read your blog since Parker was born..unfortunatly his little heart could'nt take it any longer,but I wanted to wish the best for little Emma..she is such a cutie..We will keep her in our prayers

  17. You guys do what the Lord leads you to; walk through the doors He opens and do what you feel is best for Emma- second guessing isn't going to help! We are missionaries in Mexico and our 3 yr old adopted son Daniel has multiple heart/lung defects and everywhere where we have sent his records the doctors say: "No way!" So, I admire Dallas for taking Emma and caring for her so well - that can be difficult to find! May the Lord richly bless and fill you with His joy!

  18. Happy Three-Month Birthday, Little Princess!

    Oh my! We love you so much and pray for you without ceasing. God be with you, precious little Emma!

    Hugs and Kisses from...
    PaPa Steve, Nana Jana, and Aunt Stacey Stewart

  19. You are in the best place for Emma's care, and thank God there is such a place. You all are doing just what you need to be doing. Put all your faith in God and the wonderful doctors that are taking care of her and making decisions. There is no doubt that Emma is where she needs to be. They have brought her thus far. She is your precious little angel. You are wonderful parents.

  20. Hard to believe she is 3 months old. You are such wonderful parents. Everyone out here has no idea what you all are going through, but we know you are doing a wonderful job taking care of your baby. We pray that the future will be bright for all of you. We pray for wonderful things in 2011.

  21. I have been following little Emma's story since I first seen it on Haven Grace's page and I have been praying every since that this beautiful little baby stays a fighter and when I look into her eyes you can tell she is going to to be just that a fighter. Stay Strong little Emma and know that there are so many people praying for you. From my family Tasha, Marcus, Alex and my own 7 year old Daughter Emma who asked me so much about you because you share her beautiful name. :)

  22. Some of my former students in Ada, Oklahoma, are planning the following fundraiser; it will benefit Emma and another young woman from Ada:

    ‎1st Annual Charity Alumni Basketball Game
    Location: Ada High School Gymnasium
    Time: 6:30PM Friday, April 1st
    ("Boys" game to follow the "Girls")

    From: Emma's Nana Jana Stewart,
    Retired teacher from Ada

    IT is

  23. Words cannot express my heartfelt feelings and prayers for Emma. She is so precious. I am praying healing scriptures over her and the other babies you have mentioned daily. I know God is the same yesterday, today and forever and I know God can do miracles, as I have seen it in my own life. I pray God's healing touch on Emma from the top of her head to the soles of her feet. I don't know you folks, but you are all close to my heart, as we are in the family of God together. Love you all


  24. "The LORD bless you and keep you; the LORD make his face shine on you and be gracious to you;
    the LORD turn his face toward you and give you peace.” Numbers 6:24-26

  25. hi my name is cheryl r. and i am 33 weeks pregnant & are about to go throught the same thing u and ur husband are goin through right now. i feel soooo lost with this being my first child i dont know how to handle let alone deal with any of this please let me know if us talking to each other could possibly make anything a little more clear, i feel that i came up on ur blog for a reason not only because of the hlhs but the fact that both families states apart have chosen to name of princess's "emma" you can find me on facebook cheryl richardson of laurel, md hope to speak with you soon and i do hope that ur baby girl make a rapid recovery andis able to live her life to the fullest!!