Tuesday, December 28, 2010

We've Never Seen This Before?

So, how would it feel if the doctors around you say they have never seen this before?  Well, for Scott and I that is our reality with Emma’s condition.  Emma is a complex little puzzle and the doctors are working very diligently to try to put those pieces together to try to get Emma better.  Emma has seen several pulmonologists, cardiologists, intensivists, gastroenterologists, ear/nose/throat specialists, urologists, and nephrologists.  They have poured over her medical history and to be completely honest, are stumped by some of the ways she is responding.  They are not giving up on Emma and neither are we!  Emma has proved that she is a fighter, so we all battle on to try to determine the best plan for Emma. 

Emma is having nutrition problems.  This has been an area that we have struggled with from the beginning.  Emma drains fluid out of her chest cavity.  They have tried several methods to stop/slow down the drainage and have been relatively unsuccessful.  This drainage makes it hard to properly digest important nutrients.  They have just started Emma on a steroid regimen to see if it will help with some of her nutrient loss.  For those of you that know a little about steroids, you know that they are immunosuppressants.  Since this is the “sick time” of the year and this new medicine is known to lower immunity then we will be cutting down on visitors in Emma’s room.  We hope and pray that everyone will understand that this is in Emma’s best interest.  There might even be times when Scott and I can’t be back with Emma.  Emma should be officially listed on the transplant list this week.  Due to being on the vent and other heart meds, she should be listed as a 1A which is at the top of the list to get a heart; however, if she were to become infected then she would be temporarily bumped to a two which would prohibit her from getting a heart until she became uninfected.  So, as you can see, it is SUPER IMPORTANT that Emma stays well.  As hard as it will be to be so secluded, it is to get Emma better! 

Emma had a good day on Christmas and was a happy baby who enjoyed visiting with her company.  See recent photos below of Emma:

Emma's first Christmas!
Emma was visited by Santa!

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


  1. We will continue to pray for her to stay healthy, we know how important that is!

  2. Scott and Sarah, We continue to pray for Emma, her wonderful family, and the doctors. We love you guys. Kendall and Darla

  3. We pray that Emma is given a new heart very soon. We also pray for the family who will donate this heart. They would not do it, if they didn't want to very badly. Just remember that. This will be something that someone will do because they are very special people. There are so many wonderful people in this world. Emma has brought people together who will never actually meet. But, we all have one thing in common. God and Prayer!!!

  4. I am wondering how Emma likes having her tube-free! Continue to be strong and know that so many people are making supplication to the Lord in Emma's behalf! We had planned on coming Saturday, but Dayton got sick last night and was very depressed. Knowing we couldn't see Emma anyway might make her feel a little better! We will keep trying to get down there to see you. Maybe Dayton needs to be roomies with Emma--they could keep each other company and never get sick (for a while at least!) Dirty Santa just wasn't the same without you! We love you all and miss you so!

  5. Lord I pray you will give the answers to the doctors. I pray for Emma to get the nutrition she needs and to stay free from infection. I pray for Sarah and Scott to have peace and strength for each day. I pray for the plan you have for Emma and all it entails. We know all things are possible with You.

  6. Hang in there! We continually pray for you guys! Just keep leaning on the Lord & each other! Love you guys!

    Aimee & family ;)

  7. I continue to pray for you all!
    (((HUGS))) Michelle

  8. I imagine there are many HLHS families out there that understand the depth of strength required to last through the trials in order to get and keep a heart baby healthy.

    The weariness, lack of sleep, mental exhaustion, research/trial-and-error -- all of these are difficult for families whose little ones are ill.

    Please pray that Scott and Sarah may have the perseverance required, and that their families may, too, for our hearts break many times a week. But with God's help and your prayers, they are mended together and go on. May Emma's heart be mended too!

    There is a quote that I thought would strike a chord with those of you who have endured similar trials:

    "By perseverance the snail reached the ark." (Charles Spurgeon)

    That about sums up how much perseverance Emma's loved ones - and especially her Mommy and Daddy - need right now.

    Our thanks to all of you!
    From Nana Jana, PaPa Steve, and Aunt Stacey
    (As well as many, many more relatives)

  9. Scott & Sarah, I don't know if I've introduced myself before, but I found your page from another HLHS blog I follow. I am 25 yrs. old and also have HLHS. I had my surgeries performed by Dr. Norwood at the Children's Hospital of Philadelphia in May '85 and October '86. I currently live in Dallas and would love to meet/visit with you guys if you're ever up for it. Please feel free to e-mail me at maribethgillis@gmail.com Looking forward to hearing back from you soon!

    Maribeth Gillis
    HLHS - 25 yrs.

  10. Prayers, prayers and MORE prayers!!! I continue to pray that God's perfect plan will be accomplished for Emma and you guys.

    Hopefully, one day you will be able to look back at this time and see what God was doing through each trial you encounter in this journey. What a testimony Emma will have to share!!!

    God is with you each step of the way and even though you get weary He will see you through this. He will carry you in arms of love when necessary and He will help you walk when you are able. You are in my prayers daily.

    Joy/Chandler, OK

  11. Praying for you in Shawnee. Love seeing pictures of Emma- she is a very sweet and beautiful baby girl :) Ella and Emma are household names around here! May you find peace and rest today. Leslie

  12. You don't know me, but since I have been checking Emma's site, I have her on my prayer list with the other babies you mention to pray for. I pray healing scriptures over them daily. She is so precious. May God bless each of you in all this and I pray that Emma is that miracle baby with a great testimony of God's love.


  13. Prayers continue for sweet Emma, Sarah and Scott. I pray that as you begin a New Year you will feel God's peace, hope and love surrounding you continually.