Sunday, December 19, 2010

My Not-So-Happy Baby

Just a Quick Update:

Well, Emma is constantly keeping us on our toes.  Many of you saw the video a posted on Facebook the other day of Emma smiling and very happy.  Well, yesterday my happy baby turned into a cranky baby.  Unfortunately the irritability is getting worse.  She has had several desat episodes (where her oxygen levels drop) and they have had to go up on her vent settings.  When I left Dallas on Friday to go to Oklahoma, Emma was getting to do pressure support trials on the vent (where the vent does not help her) and she was doing great, sating in the upper 80s and did not look in distress at all.  Today, they have upped all of her vent settings and she is slightly retracting when she breathes.  One of her blood gases this morning showed that her CO2 level was 97.  This is BAD!  They have had to give her several doses of sedation meds to get her calm.  We have not had to that in several weeks.  So, they are running every test possible on her to see what is wrong.  Her last x-ray showed more dilation in her stomach and intestines, so they have stopped her feeds for now.  She will be getting a chest/kub x-ray every 6 hours.  She will also be getting an abdominal and chest ultrasound.  They are culturing the secretions in her ET tube (vent), culturing her blood, running labs, and basically testing everything to try and figure out why she does not feel good and why they all of the sudden are having to go up on her vent settings to get the results they are wanting.  So, today my baby does not feel good and it breaks my heart to watch her in pain. 

We received word on Friday afternoon that we officially got insurance approval to proceed with transplant evaluation.  So, on Monday and Tuesday Scott and I will be in meetings all day to answer questions, fill out paper work, and be filled in on what this process entails.  We will be very busy.  We will update the blog on Wednesday to let you know what we find out. 

Specific Prayer Requests:

1.     Pray that Emma feels better soon!
2.     Pray that Emma will be able to come back to low vent settings.
3.     Pray that Emma can tolerate feeds and not have stomach issues.
4.     Pray that Emma will be a candidate for a transplant.
5.     Pray that Emma will receive a heart that is PERFECT for her.
6.     Pray for the family that will make the decision to donate.
7.     Pray that Emma has many happy days ahead.
8.     Pray for the doctors, nurses, and other staff in charge of her care.
9.     Pray that Scott and I will fully trust in God’s plan for Emma.

God is Good!  And, we will praise him in this storm!

Sarah (Mommy)


  1. Poor baby!

    I will continue praying for all three of you and for the doctors, nurses, etc. who oversee Emma's care!

    May she feel better really quickly. We will especially be praying that the oxygen problems correct themselves or that the doctors discover the source of our Little Princess's discomfort soon.

    Especially, we will ask God to calm and encourage you and Scott, as it is discouraging to see your little one suffer after so many days of doing better!


  2. Hi Sarah! I was one of Mrs. Stewart's students a long time ago and have her as a friend on facebook. I've been following Emma's story and just wanted you to know that I am praying for your beautiful little girl! I know that with Gods hand and time that she will recover fully! I pray for her and you every time I read a status update from Mrs. Stewart. And I agree to praise God through this storm! Emma will be stronger and you will too! Emma has a ton of prayer warriors out there! God bless!

  3. So glad your insurance came through. Now you can concentrate on what all this entails. We are so sorry to hear that she is feeling so bad. We know it hurts you to see her this way. We are praying for a bright future for her. We are praying that the doctors make all the right decisions for her. You both are so strong, and we pray that you can continue to be strong through this long long journey. We are praying for everything that you want us to. We all love you. We know you will post us when you can.

  4. I'm so sorry Emma isn't feeling well. I just knew she was on the right track after seeing her video. We well keep praying. Love, Sheri and kids

  5. Still following your story and praying for Emma. My little girl (5 months old) has a cardiology appointment tomorrow morning. We will probably learn more about her upcoming surgery to repair her heart defect (VSD).

  6. praying for you all three. Praying for peace and rest and answers!!!

  7. Sarah,
    I'm praying. I love you all and its amazing how many lives little Emma has touched! She is adorable and I look forward to seeing her outside of Children's! I'm glad to hear about the insurance.


  8. I'm so sorry to hear the latest. I will definetly step up prayers. I pray that they will determine the cause for her discomfort and oxygen issues. Praying for mom and dad. Hold on, guys. God is STILL in control. He will get you through this.

    Good news to hear that insurance has agreed to your transplant evaluation. Sounds like maybe satan didn't like that bit of news so he started messing in other areas. He knows he's defeated, but it doesn't stop him from trying every angle to win a battle. God WILL NOT allow him to prevail.

  9. Praying the doctors will be able to determine what is causing the issues with Miss Emma. Praying for the whole transplant process. Praying for you and Scott as you begin this next process. Praying for healing, peace, strength for all. Angie-Ada

  10. I am praying for you.
    Kerith Leffler

  11. Prayers continue for Miss Emma. I love to see updates, but it saddens me when they are not so good. It does, however, remind me to be diligent in praying for you all.

    I pray that as Christmas Day approaches you feel God's love and peace. I pray that you will be blessed to share many, many more Christmases with Miss Emma.

    Joy/Chandler, OK