Thursday, December 23, 2010

The Journey Continues

It has been a while since I have updated the blog and for all those consistent followers, I apologize.  It has been busy not only around here but at work, and so now I have some free time to be able to update the blog and share what is currently happening in Sarah, Emma's, and my life.  So, as you may remember, we were going to start going through transplant evaluation.  Well, we have made it through everything now.  We had a lot of meetings with many new physicians and teams of people.  The transplant team checks everything to make sure that transplant is what is right for the person being listed.  The first consult/meeting that we had was with one of the main physicians and some of his team.  He basically just explained to us about what transplant entailed and what to kind of expect as the rest of our evaluation progressed.  We met with a psychologist, who I am guessing wanted to just see how we were doing through all of this and possibly assess how she thought we would do if transplant was the road that we would travel.  We met with child care services who asked us similar questions as the psychologist, but her services were more tailored towards Emma.  We met with neurology who did an assessment to see how Emma was progressing with normal developmental areas for her age.  He watched as she followed her purple elephant around in the dark, how she would follow Sarah and her voice around, and various other tests.  He said at the end that Emma passed with flying colors!!!  And as he was leaving, he waved bye at Emma, and (though probably involuntary) she raised her arm up and waved her hand back at him.  He said she was a "show-off!" Hehe!  :-)  She had a visit from pulmonology who took a look at her lungs.  To him, it looked like Emma was just weak and would need more time before she would successfully come off of the ventilator.  He said her lungs did not look to have a huge amount of lung damage which was really good news.  She also had a gastrointestinal tract test to see if her passage of fluid was obstructed or if anything was abnormal.  Everything from that test came back ok, which is good.  However, we still don't know why she is having trouble tolerating her feeds.  Possibly one of the medications she was on could have been contributing to that, as well as her heart not functioning quite like it should for her GI tract to work as well as it should.  They are still looking into this area.  So, today, they came in and said that they were going to go ahead and list Emma on the transplant list!!!!!!  As many of you probably know, that does not guarantee us a heart right away or anything, so we are going to be working on her main problem at hand right now, and that being the problem of nutrition.  Its very important for her to have good nutrition, not only for her health, but also for whatever path we go down, whether transplant or Glenn procedure.
Right now, Sarah is holding her and she is sleeping!  Such an amazing site to see!!!!  I love them both so much! :-)
So that is what we know right now.  We will keep you all updated as we know more.  We thank everyone for the kind cards and messages that we have received!  As always, I give all the thanks for Emma, the doctors and staff, and all of you, to God!  God is good, all the time!  And Sarah, Emma, and I truly hope all of you have a Merry Christmas!

Some specific prayer requests:
1)  Pray that the path that we are to go on all works out and that Emma continues to improve!
2)  Pray for Emma to get good nutrition and keep it!
3)  Pray for the doctors and staff here at Childrens.  They have many tough decisions ahead.  May God guide them in the way that will work best for Emma.
4)  Pray for Sarah and me and our families as we continue on this journey.


  1. We will continue to pray!!!! Merry Chirstmas friends!!!

  2. So glad to hear encouraging news! Thankful to God! Will continue to pray for the next step in Emma's journey! Praying for you and Sarah as you take one day at a time. Praying God will give you strength and peace! Praying for you and your first Christmas with Emma! Praying you feel God's presence and blessings!

  3. I check in on you several times a day and pray for you whenever I think of you! Merry Christmas to all of you from Cookeville, TN

  4. This picture of Emma and her doll is the most precious picture we have seen in a long long time. Those eyes are just beautiful. We are so happy to hear that she is a good candidate for a new heart, and that the doctors could tell that you both can handle this, if that is the route they take. The future will be bright for your precious baby. We love you guys and will keep praying for what you ask of us. Kendall and Darla

  5. NANA JANA writes:
    Last Easter when you two gave us a plastic egg with Emma's ultrasound inside and a note saying, "Guess who's hatching in October?" ... well, at that point, who could've even imagined the journey we have all traveled since that date?

    That God gives the strength to us when we need it, if we ask and trust, is obvious in the fact that you two are still strong after so many weeks in the hospital.

    The understanding that God is right beside even the tiniest of his little "lambs" is obvious from how He has touched Emma's life over and over since October.

    Like everyone else, I will continue to pray for strength and guidance...and to trust that God is right beside all of us, encouraging us to be strong!

    May He be ever present in that hospital room, in the doctors' and nurses' meetings regarding what course to take for Emma's care, and in the lives of the many thousands of prayer warriors who faithfully lift your names, and Emma's, to the Father every day!

    Like you, I wish a Merry Christmas to all of those who have walked parts of the journey with you three (and with us family members too)!

    "God bless us everyone" as we continue the journey!

    Emma, keep up the fight; you are and ever will be our precious "warrior princess"!

  6. Thank you for taking the time to update. I look forward to hearing any updates. I am so glad that this one is on the positive side. The pictures of Emma are so cute! She is just a doll.

    I continue to pray for Emma, for you guys and the medical teams who monitor and care for Emma. Praise the Lord for being added to the transplant list. God is in control. He knows exactly what lies ahead and He will be with you every step of the way.

    Have a wonderful Christmas!

    Joy/Chandler, OK

  7. You all are continually in my thoughts and prayers.

    Have a Merry Christmas and a Happy, Healthy New Year!

  8. What wonderful news! Don't you just love everyone bragging on that baby girl? All the tests results sound so promising and hopefully all she needs is time. Hope you are doing well and we are all crossing our fingers that we get to come down next week! Loved seeing her little hat on that little angel! We love you all so very much! Merry Christmas, Stewart family!

    Love, Darla

  9. Hi Stewart Family! You have a lot of support from your ECU family. I check the blog often, and I spread the word for thoughts and prayers that you request. Emma is amazing, and your strength and faith are examples to all of us.

    THANK YOU for sharing.

    Debbie Claxton ECU/Ada

  10. Hi Stewart Family! Your ECU family is keeping track and spreading the word for your prayer requests.

    I check the blog and love the pictures. Emma is amazing, and your strength and faith are models for all of us.

    Best wishes for your journey--wherever that leads. THANK YOU for sharing.

  11. Hi Stewart Family! Your ECU family is keeping track and spreading the word for your prayer requests. Emma is amazing, and your strength and faith are a model for all of us.

    THANK YOU for sharing. Best wishes on your journey--wherever that leads.

  12. May God bless your family during this Holiday season. You are in our prayers on a daily basis. Miss Emma is such a sweetheart. Much love from the Carter's in Maysville.

  13. Well Stewart family, I am soo glad to see little Emma's face so brignt and shiney tonight. She is truly God's blessing to everyone, family, friends and all your blog watchers. Sarah and Scott I am so proud of your strength and faith in God and what wonders he has in store for you/us/Emma! You are truly an inspiration to me, we are still having our morning prayers for you each day. Love you all and I can't wait for Ms. Emma to meet Quackie! Love you all!

  14. Praying for sweet little Emma and praying that God answers all your requests, may God's healing power strengthen and heal her entire body. She always looks so beautiful in her hats and hair bows!

    God Bless,
    Jessica Rohde and family.

  15. i love all the pics of this sweet baby girl but this is probably my fav. i am still praying daily for u all love you all sooo much give kisses from me !!!!