Tuesday, January 11, 2011

The Waiting Game


Waiting Game:

Right now, we are in one HUGE waiting game.  Emma was officially placed 1A on the transplant list on January 4th, her 3-month birthday!  They have been running some tests to see why Emma is having problems gaining weight and processing high caloric amounts of food.  The main test is a stool study called Alpha-1 Antitrypsin.  We have sent off three of these studies.  The first one came back elevated, the second one came back normal, and the third one came back elevated again.  So, the doctors have come to a somewhat unanimous conclusion that Emma has Protein-losing enteropathy or (PLE).  PLE is a rare condition characterized by a loss of serum protein into the gastrointestinal tract resulting in hypoproteinemia, which can be complicated by edema, ascites, pleural and pericardial effusions, and malnutrition.  However, out of all of the doctors and nurses we have spoken to, only two of them (one of them being the surgeon Dr. Forbess) have EVER seen this in an infant.  PLE in an infant is very RARE…….like probably one in a MILLION!  To be honest, Scott and I debated whether or not to share this with our blog followers because the information you will find is for older kids and adults.  In fact, we have known that this was a possibility for a while but chose to keep it to ourselves until we learned more about it and its treatment.  Just like us, people like to Google when they do not fully understand the terminology of certain medical disorders.  We ask you to PLEASE REFRAIN from doing that this time.  Basically, Emma has had pleural effusions (or drainage from her chest cavity) since post Norwood, poor weight gain, and a swollen abdomen, which are all signs of this medical condition.  We have asked what the treatments are for it and the answer is steroids or heparin; however, neither are GREAT or REALLY PROVEN to treat it well, so the BEST solution is TRANSPLANT.  Since this is the route it looked like we needed to take anyway, we are doing what we need to do to best help Emma. 

So, what has been going on lately.  Not much.  We are trying to wean on Emma’s vent when we can, increase her feeds when she can tolerate it, and work with her on her physical development.  They did put Emma on a two-week steroid regiment, which ended today.  Emma did swell some with the steroids and became quite irritable and NOT SLEEPY!  We are hoping these symptoms go away soon! 

Scott is working more and I am here with Emma.  We miss him so much when he is gone, but appreciate the dedicated dad/husband he is.  We want to thank all of those that are giving us encouragement, sending cards/gifts, calling, and most of all praying for us during this journey.  If I have not thanked you or sent you a THANK YOU please know that we are SINCERELY THANKFUL for all that you do!

Specific Pray 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


God is Good!  All the Time!  God is Good!  

Chunky Monkey! :)

Emma with her official transplant letter!

Emma's laughing face!
Mommy (Sarah)

29 comments:

  1. Scott and Sarah, we have always known that Emma is "one in a million," and the doctors have just confirmed that fact!

    How blessed Emma is that, in the face of the many adversities she has encountered, you two have found that smile deep inside her and coaxed it out! Thank you, thank you, for bringing her joy to the surface!

    How very much we love that sweet little baby and the two of you!

    From PaPa Steve, Nana Jana, and Aunt Stacey

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  2. She is absolutely adorable. I am keeping you all in my thoughts and prayers as you start along a new journey.

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  3. She is beautiful! I have been reading for sometime and say prayers for all of you every day. From a little town in Oklahoman here!

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  4. Thank you for posting an update. I continue to pray for Emma and for you and Scott. God has given you a very important task and you are doing a wonderful job of seeing it through. Emma is indeed a very complex case, but God knew He could trust you guys to care for her and make the very best decisions for her each day. She is beautiful and I love the picture of her smile!

    God is in control, even when doctors don't seem to have a definite answer. He has a very special plan for Emma's life.

    Prayers continue always.

    Joy/Chandler, OK

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  5. She is beautiful! Love is long suffering and as parents, especially in your situation, it is ever needed and present. I will keep your sweet Emma in my thoughts and prayers.

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  6. Thanks for posting the update. Praying for Emma daily and you as well. Praying Emma will have good days and be able to grow in every way. Praying for you as Scott is away. Praying for strength for you all. Praying that the transplant will happen in God's time and way.
    Angie-Ada

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  7. what a cutie! i've shared emma's story with my church family and we are all praying!

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  8. Emma and Ella are so dear to my heart!:) Please know that I am praying for you and sending hugs your way. Stay Strong! Leslie

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  9. Not every parent knows these terms and words you use, Emma is very lucky (God's decision) to have you two as parents. You all are doing a wonderful job. Our prayers are with all of you. Emma is so cute and precious.
    Betty Sue

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  10. We pray that Emma receives a new heart very soon. We love every picture. She is so precious. We are praying for all of you!!! Kendall and Darla

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  11. You are so right, most people like to google to diagnose themselves, which is a horrible thing to do. I have done it, and been sorry I did. Your advice well taken. Instead of us doing that, we can take your information and use it to pray pray pray!!! Your information to us about Emma's condition can also help us understand what you are going through and we can pray even harder. Emma is keeping the doctors very busy, and even the best doctors around can always learn more. Sounds like this is what is happening. WE ARE PRAYING EVERY DAY FOR EMMA AND EVERYONE SURROUNDING HER.

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  12. What a sweet little girl!! Emma's "Nanna" left a comment on my own blog (reflectionsbykrista.blogspot.com) directing me to her story. My Annabelle was just listed for heart transplant on Thursday. She was born in July with HLHS and they finally told us they didn't think she would survive her Glenn due to the condition of her heart, so transplant was our only option.

    Your little Emma is adorable and I'll definitely be praying!!!

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  13. Dear Scott and Sarah,
    Joe and I have thought so much about you and prayed for Emma since Jeff and Holly took Mason home. Our church is praying for her too. We are thrilled to hear that she is now on the transplant list! We will pray that her wait is short and that the donor family is comforted in the knowledge that their generous gift went to a wonderful little girl who will be a testimony to God's love and do great things for Him with her life. God's will be done in your lives.
    Leta Studer

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  14. Would you mind if I posted a prayer request for you all on my blog with a link to your blog? I understand if you'd rather not. Mine is http://thelefflerfamilyblog.blogspot.com.

    Please don't feel like you should publish this comment. I didn't know how else to reach you.
    Kerith Leffler

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  15. I am sorry I forgot to give you my email when I asked if I could share your blog on mine.

    It's Kerith.leffler@sbcglobal.net

    I shall continue to pray for you all.

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  16. Prayers are still coming your way!!

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  17. Thinking of you all... hope Miss Emma is holding steady.

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  18. Emma, as well as Scot, Sarah and the medical team, remain in my prayers daily.

    Praying that God will continue to watch over Miss Emma.

    Joy/Chandler/OK

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  19. Scott & Sarah,

    Hang in there! We are glad that Emma is one step closer to getting the heart she needs. Know that we pray for her and both of you daily. There are many people that follow Mason's blog that are also praying for the three of you and ask me about Emma regularly. Stay strong. Please, if you ever need anything, just call or email.

    God works miracles daily,
    Jeff, Holly and Mason Studer

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  20. Dear Sarah, I just watched a news story on miss Emma in Tulsa about the fund raising for miss Emma's new heart. That's exactally what is needed to get the message out to all generous Oklahoman's now you will see more great things the Lord has in store. Prayers everyday for that sweet baby and for you and Scott.

    Cyndy Meeks Ada,Ok

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  21. We are praying for your family's strength and for baby Emma. She's a sweet angel and we are praying. I wish we could do more. Hang in there.
    Love, the Karnish Family (Layne)

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  22. We continue to pray for sweet Emma!!

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  23. Praise Jesus! I am so excited to see the pic of Emma with her letter next to her. GOD Rocks!

    ~Jessa

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  24. Lord, you have a plan for this family. You have a plan for this precious girl. We know that and understand this, but please use your power of healing to show the world and to those who may not 100% believe in you powers that you are the Almighty and you can perform miracles and that this is all part of your plan. Breathe life into this baby so she can come off the vent. We pray in your sons name for Emma to gain weight, stay infection free and to have good blood gases. We trust that you will provide a perfect heart for Emma and provide a new beginning for this family and the donor family. In your sons name I pray...AMEN

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  25. Continue to pray for Emma, Scott, Sarah, the medical team, possible donor family.....so many things to cover, but God is NOT overwhelmed. He is in control and He will see His plan through for sweet Emma.

    I hope each day brings hope to your hearts as you wait for God's timing.

    Joy/Chandler, OK

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  26. Please post on this blog how we can purchase a "Hope for Emma's Heart" bracelet. Been hearing a lot about it but have no idea where to purchase one and how much we need to send. What a wonderful fund raiser. Sincerely hope the auction goes well. What a wonderful idea to auction the cow with the heart markings. Thank you and God Bless

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  27. Carl (Layne's Grandpa)January 31, 2011 at 7:46 AM

    Emma...God has a plan in place for you. He is watching you daily and have instructed his angels to wrap their wings around you and keep you safe. God's healing power will cure all the issues that are keeping you from going home. God will put the breath of life into you lungs, God will find the perfect heart for you and clear your body of all infections. As you gain weight know that God is preparing you for your the next chapter in your young life. God is also watching out for your mom, dad, grandma and grandpa and will keep them safe also. We serve an awesome God and He will work miracles in our lives. See you soon.

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