Tuesday, December 14, 2010

Update On Our Precious Little Princess

Family Picture Time!

Happy Baby in her Christmas Bow!
Well, it has been awhile since I have updated the blog and some things have happened since then.  Emma is doing good as of now.  She is happy most days of the week and loves many things including: her mirror, toys, and being held!  They continued to be concerned about a couple of things.  First, the are concerned with her lungs and coming off of the ventilator.  As you may remember, they think that her not being able to come off of the ventilator may be due to several factors including: her heart, her airway, her strength, etc.  So, they are trying many different approaches and have called in reinforcements to try and increase her chances of coming off of the vent.  They have called in the pulmonologists, which are the lung doctors, to take a look at her lungs.  What they are doing is giving her an inhaled medication called Pulmicort and seeing if this helps her lungs.  They are still doing lung conditioning and trying to cut down her secretions in her lungs.  They have been able to ween her down to very low settings, which is great and means that she is doing a lot of the work on her own.  The second concern is with her nutritional status.  Every time they go up on her feeds (i.e. her calories in her feeds) she doesn't tolerate the increase and starts having diarrhea.  As you can imagine, this is not a good thing since that means she is not only losing nutrition but also possibly losing meds since they are all given orally.  To try and figure out why this is the case, they have called in the gastroenterologists.  These are the physicians that look at the gastrointestinal tract to figure out if there is malabsorption of food, poor breakdown, etc.  They are still trying different ways to feed her to find out what she will tolerate best.

So what we know:
So what we know is that both of these concerns could be due to her heart.  And we are reminded about this almost daily.  This means that we are needing to get on the transplant list in case this is the cause of her problems.  However, we are having some trouble clearing it with our insurance company......  Hopefully it will clear very soon and we can continue down the road to getting put on the list.  They are not giving up on her heart she has now though since the cath of her heart looked pretty good.  So, we will keep trying to feed and grow her and see how she does.  If she doesn't progress like they would hope, then by that time hopefully we will be on the transplant list and be getting a new heart.

What to pray for:
1)  Pray for her to become stronger and get the nutrition she needs.
2)  Pray for her lungs.
3)  Pray for the doctors, nurses, respiratory therapists, etc. in charge of her care.
4)  Pray for Emma's progression to go in the right direction.
5)  Pray that everything will work out with this transplant, if it is the path that we are to go on.
6)  Pray for Sarah and me as we continue on this journey with Emma.

Somedays it is tough not knowing which direction Emma is going.  But, we have wonderful physicians and medical staff striving to get Emma well, no matter what direction that takes to get her there.  We are very thankful that Emma is doing well now though and is happy!  :-)

God is good!  All the time!  And all the time!  God is good!

Thank you for all the thoughts and prayers!

Daddy Scott

Gramma holding Emma for the first time!

Grampa holding Emma for the first time!


  1. Still praying in Cookeville, TN!

  2. I stumbled on your site about your precious miracle when searching for an old friends story, hopeforemma.com. I add your Emma to my prayers. Sarah and Scott - keep believing.

    I have set the Lord always before me. Because He is at my right hand, I will not be shaken. Psalm 16:8

  3. Great to see some small positive steps in Emma's recovery --keep the faith my friends as many of us continue to daily keep Emma and all involved in our prayers. Hoping you all have a Merry Christmas with your beautiful little girl! Love, Cathy and Russell Eaves

  4. Be strong and courageous! Praying for you all as they add more people to your team to get Emma feeling great. All the new doctors can seem so over whelming but I know that they are all working at the same goal, getting Emma off the vent and getting her stronger. She is such a fighter! So glad that she has been happy and you all have gotten to hold her. The pictures with Grandma and Grandpa are precious. Keep remembering who is in control. Scott and Sarah you are both being so strong, continue to lean on God and know that He is holding you. Praying you all have a wonderful and Blessed Christmas time. Love your family picture what great memories you all are creating. You'll look back at these pictures and be amazed at what your family can do when God is holding you.

    Always in our thoughts and prayers,
    Rogers Family

  5. We are praying for the Lord to heal Emma. We are parying for your insurance company to move ahead so Emma can be placed on the transplant list if needed.

  6. Thank you Scott for the update. We continue to lift you all in prayer. We love you all and pray that God will heal precious Emma in all phases of her body. Hope your new job is going well.
    Terry and Debbie

  7. Thankful Emma is doing good now. Keeping the prayers going up for her that she can get what she needs to heal and get better...praying for mom and dad to have strength for each day and peace and comfort knowing God has Emma in His hands and knows the plans for her.

  8. Oh my gosh, we have been following and praying for Emma, as well as for her family, since our grandson was at Dallas Children's Hosp. for his second open heart surgery in Oct. We will continue to keep all of you in constant, persistent prayer for healing and strength for Sarah and Scott, and of course for guidance for doctors, nurses, and all who are involved in her care. Where the Holy Spirit is, there is power.
    Bless you, Mark and Chanda

  9. We continue to pray for Emma. Kendall and Darla

  10. "To every thing, there is a season," wise old Solomon wrote in Ecclesiastes. It seems for sure that you two have seen many "seasons" of things while in Dallas ... rejoicing at one baby's rapid recovery, weeping with the mother of a child who went home to Heaven, seeing Emma's highs and lows, feeling strong and joyful and in the next minute weak and weary...on and on it seems you young couples there on the CICU ward learn an awfully lot about life awfully fast!

    What a blessing that God is by your side ... remember that little song about the wise and foolish men building their houses? It's wonderful to know that like the wise man, you have built your family's house on the rock that stands firm.

    And how wonderful to know that your faith as a couple stands so strong that you can reach out to others who are also suffering there in the hospital.

    Wherever we are, God gives opportunities to be of service to Him, and it is amazing that even now, when things fluctuate so often and so quickly for little Emma, you two still "stand firm."

    God bless you! I am proud to call you two my "Son" and "Daughter-in-law," and I am proud to see what wonderful parents you are becoming. One look at Emma's smiling face is proof enough for me!

    "To every thing there is a season ... and a time to every purpose under Heaven."

    Just as this has been a time of great spiritual growth for you two, I am praying that it will be a time for growing physically stronger for our little Princess!

    I love you three ... "to the moon and back, and to infinity and beyond" !
    Momma/Nana Jana

  11. Nana Jana, what a wonderful uplifting note.

  12. How wonderful to have an update! I rejoice with you as Emma makes small steps of progress. I continue to pray for you all daily. God has a plan and He is seeing it through one step at a time. Praise the Lord for His mercy and grace.

    I love the pictures! I am especially touched by the ones of Emma with her Gramma and Grampa. Being a Gramma myself, I can imagine the joy they felt holding sweet Emma for the first time. Her precious face gazing up at them is a priceless treasure.

  13. Those eyes looking up and grandma and grandpa just melts your heart. She is a doll. So glad to hear that she is now enjoying being held. Future will be good for sweet, precious, adorable Miss Emma. YES, GOD IS GOOD. Our prayers continue for each and every one of you.

  14. It's beginning to look a lot like Christmas around Emma's bed. So precious

  15. Miss Emma/Miss Bright Eyes