Sunday, November 7, 2010


It is so hard to not be able to pick up my little one and calm her when she “cries.”  It breaks my heart to see her coming down off of the pain medications and having side effects that are uncomfortable to her.  While all of the things being done for Emma are moving her in the right direction, it is still hard to sit on the couch or stand by her box and watch, helpless, while my baby girl suffers.

 Yesterday, they pulled Emma off her IV pain and sedation meds and switched to a less powerful pain med and anxiety med by mouth (or in Emma’s case, by feeding tube).  At first, Emma was ok.  Then, Emma started showing signs of irritability and pain.  We could tell that she could feel the tube in mouth and the one that goes to her stomach.  She would gag on the tube, especially when moved for an xray, bath, respiratory therapy, etc.  Around 4:30pm yesterday after she had been bathed and then lifted for an xray, she gagged and vomited a nasty black/brown substance.  They tested it and it came back positive for blood.  They said it was very little blood, so they kept feeding her and put her on an acid controller medicine.  Emma did really well until around 2:00am when she vomited again.  This time, the vomit was clear, so we were able to talk the doctor into letting her stay on the feeds.  Well, around 4:00am, after xray, Emma vomited for the third time, this time with a little brown substance mixed in with the clear, so they stopped feeding her.  After looking at the current xray, they determined that the feeding tube had moved from ND (in duodenum) to NG (in stomach) and was looped around almost in a knot.  They believe that this plus the lack of proper sedation/pain control is causing her to vomit.  So, they moved her feeding tube back to ND and upped her pain/anxiety drugs a little.  I am still sitting by her bed, needing to calm her down a lot, but it will be that way until they can balance these meds. 

All in all, this is part of the process, but it is never fun to watch your little one go through all of this.  It is slightly ironic that the problems keeping us in ICU are not really heart related (which is good); however, she needs to come off of the vent and stay on full feeds.  It is really hard to make big or even medium steps forward while being on the vent.  

God is Good!  All the time!  God is Good!  He “fearfully and wonderfully made” Miss Emma and she is a blessing to us each and every day.  Friday night into Saturday morning, 3 families in the CICU lost their little ones.  Some of these little ones very rarely had family with them during this journey.  We have been so blessed to be able to be here with Emma throughout this process.  We may not be able to hold her, but we sing, talk, pray, bathe, change, kiss, love, and touch her often during the day.  We want her to know how special she is to us and how much we love her.  Emma is so very special to us and to many of you who read this blog.  She has taught me to love deeper, pray harder, be kinder to others, and trust more fully in God.  I pray that God gives Scott and I the opportunity to show her HIS LOVE and what “living” for Christ really means.  Thank you again for your continued prayers and support. 

Specific Prayer Requests:

Pray that Emma will not be in a lot of pain.
Pray that the fluid in, on , and around her lungs will continue to decrease and go away.
Pray that Emma’s heart stays arrythmia free.
Pray that the doctors can find a good pain/sedation balance with new medications.
Pray that Emma will tolerate the tolerex formula and hold her food down and properly digest it.
Pray that Emma’s sats, neer, labs, etc. stay good.
Pray that Scott and I will have strength and patience for this journey.

Sarah (Emma’s Mommy)


  1. As a mom, I can imagine the feeling you have when she is hurting. I will pray God will help her be more comfortable with all the things going on and not be in pain. To keep feeds and get off the vent. Praying for renewed strength for you and Scott each day.

  2. There is nothing worse than seeing your baby suffering in any way. You would like to transfer her pain to you. You want to "fix" it, and you can't. All you can do is pray and feel like you are sharing that pain with her by being with her. We are praying that her suffering will stop. We also pray that both of you can continue to endure and stay strong. So sorry to hear that some families there have lost their precious little ones. We pray for them also. We hope for better days ahead for Emma. She has been such a strong little baby. Prayers are with you all.

  3. Thank you for letting us see what all Emma and you all are going through. This helps us pray for what you need. Our prayers continue. Kendall and Darla

  4. Oh Sarah, my heart is aching for you. I know watching your baby come of the pain meds is so difficult to bear. It is needed so that they can learn to breathe on their own without the sedation, but you know that tube hurts and she just wants it out. It took about 24 hours for Jake to get weaned off the vent and go without so many meds- I only hope that Emma will not have to do it for too much longer. Plain and hurts...both of you. I saw a few babies there without parents and I was hoping I was wrong in thinking the babies were alone. I cannot imagine not being able to be there during that time. Prayers that Jesus is holding them today. When Jake was at OU I stayed by his side for 15 days straight and then again in Dallas. You are so blessed to have you and Scott and your family be able to take turns being with her. She knows you are there and it gives her the strength to fight. May God Bless you on this difficult journey and take away Emma's pain. May He let her take steps forward slowly but surely. I think of you all daily and my prayers will never cease. Lots of love headed your way.....The Steele Family and Baby Jake

  5. I really don't know what to day. I just wanted you to know that I pray morning and Night for Little Emma and you. It is a tough roller coaster ride,and the end results are going to be well worth it when you see Emma running and playing in later years. Your belief, faith and love are very vivid, God is using you in more ways than you or anyone else can imagine. Keep up the faith, God doesn't put more on you than you can handle. I know sometimes you wonder, however it is true.
    God Bless
    Darla R.

  6. We love you and we are praying for you! thank yu for giving us specifics to pray for and for sharing with us your journey. I'm especially praying that God will comfort those who lost thier little ones like ony he can. the Terrell's

  7. Praying that Miss Emma has a great day. I am curious though as to how that tube moved & got a knot in it. Oh well, maybe she will be able to keep her formula down now & can keep gaining weight. Go Emma go! Love you folks!!! :)


  8. Bless your heart! Boy do I ever understand how you feel. We were stuck in the hospital for so very long with the very same issues. That old saying, "one step forward, two steps back" is so very true and everytime you hear it you want to hit the person saying it. The respiratory therapist, Jean, whom I LOVE, used to tell me it is like a series of bridges that you have to cross. Of all the things we went through with our son there, withdrawals were one of the hardest because you move the dose and then you don't know for 12-48 hours what the dose will do. It is such a fine balance! Bless your heart and your sweet baby's heart as well. It sounds like she is a fighter! You are in my prayers! Please let me know if I can do ANYTHING for you!

  9. Scott and Sarah,
    You are two of the most dynamic Christians I have read about. You will be blessed by God for staying true to Him through all this. Your daughter will be well and whole, and you will have a testimony to share with so many that will bring them to Christ.

  10. A Nurse Practioner told us that when being in ICU for a long time other problems tend to pop up. She said that they like to get the patients out as soon as they can without it being to soon. I agree that ICU does do that....We were in ICU for 7 weeks and more than half of that time had nothing to do with Emma's heart. We had trouble getting Emma off of the vent and then they stopped her feeds a few times. Hang in guys are going great. It wont be long and you will be taking that beautiful girl home. Once you get to the 8th floor the pace picks up and you are doing everything yourself and your out in about a week. You will have to take a cpr class, learn to drop the feeding tube and learn the meds before you go. I made sure I kept a close eye everytime they placed the NG helps prepare you for when you have to do it.

  11. Prayers continue for you all. I so look forward to news about Miss Emma. I am a complete stranger to you guys, but we are part of the family of God. Emma is on my heart continually and each time she comes to mind I breathe a prayer for her and you. Nothing catches God by surprise. He has had a plan for Emma's life since before she was conceived. He is with you through each step of this journey - sometimes walking with you - sometimes carrying you.

    I continue to pray daily for Emma, for both of you and for her medical team.

  12. Withdrawals are the hardest part of coming off the meds, you want them off but I hated seeing Weston hurt so much. They aren't supposed to know pain like this, this young.
    I am so glad that they looked where Emma's tube placement was and put it back down where it should be. Weston did the same thing tying his tube in a knot, the nurses were all impressed.
    Hope they can start up her feeds soon so she can continue to grow.
    You, Scott and Emma are in our daily prayers. You are starting to see the light at the end of the tunnel. Praying that Emma can get off the ventilator soon and that she'll be up to full feeds(that was our hardest part)

    The Rogers Family

  13. Emma is in my prayers ever day! I can't even imagine what she is going through, she's so little. I am trusting God for her COMPLETE healing. And that she will be a wonderful testimony of God's Great Love!!

  14. E - Even though you are so tiny,Princess,God has
    M - Made you wonderfully, perfectly;
    M - May your parents' faith thru this struggle
    A - Attract others to God's gracious love.

    J - Just remember, Emma, how much we love you,
    A - And how special you are to each of us;you've
    N - Never given up, no matter the battle,
    A - And we'll never give up praying for God to
    E - Ever keep you strong, precious baby girl!

    S - Sarah and Scott,your love is God-blessed,and
    T - Together in Him, you have remained faithful;
    E - Ever your bond has encouraged others, for
    W - Whether your path together has been easy, or
    A - Against all wishes, difficult in its
    R - Responsibilities and trials, you
    T - Two remain one in your devotion to God.

    God bless you three - Scott, our beloved son; Sarah, our sweet daughter-in-law; and Emma, our precious granddaughter! We ever and always love you!
    Mom/Nana Jana and Dad/PaPa Steve Stewart

  15. I replay the video of you talking to Emma every once in awhile and it is so sweet. I know she loves hearing your voices. It must be very soothing for her. Praying for better days ahead for this precious little girl.