Friday, September 2, 2011

The New Plan............For Now Anyways!

As many of you know, Emma was brought into the hospital last week due to an unexplained emergency situation.  Well, we still do not know what happened and probably never will.  In pure Emma style, when testing for infection, all of Emma’s tests came back negative.  She was obviously exhibiting signs of some infection (cough, on and off low grade fevers, yucky looking chest x-ray, etc.); however, in the doctor’s words, your daughter NEVER does anything by the book.  Poor Emma, she is only 10 months old and already has a reputation for being difficult.  At least she is ADORABLE while being difficult.  HA HA!  The doctors ended up treating Emma for an A-typical pneumonia.  She improved and was sent home.  On a positive note, Emma’s eye infection seems to be all gone.

So, what is the new plan?  The new plan is to do the Glenn on September 19th.  We know that Emma will not be an easy Glenn; however, we hope and pray that this surgery will be successful for her.  What is really hard with Emma is that she has never really fit into any mold, so it is like going into uncharted territory.  It is so hard to take Emma into another surgery knowing how difficult her past procedures have been on her.  We do this in hopes that Emma be able to avoid transplant for a while.  She makes us all a little nervous, but she has proven that she is a fighter therefore; we continue to fight for her. 

Prayer Requests:

Please pray that Emma can stay infection free until her surgery.
Please pray that Emma’s surgery is successful.
Please pray that Emma’s post op is smooth.
Please pray for the doctors, nurses, etc. that will be taking care of Emma.
Pray for all of Emma’s heart buddies.

God is Good!  All the time!

Sarah (Emma’s Mommy)

P.S.  Please consider helping with the Hope From Emma’s Heart organization!

God is Good! All the Time!


  1. I have been following your precious Emma's story since November. She has grown a lot in spirit and looks since then and she is BEAUTIFUL and STRONG! I will be praying for her over the next few weeks as I know what it is to have a medically complicated child with HLHS. My son Simon is 16 months old and has had his Norwood, a repair (2 days later), his Glenn, a heart attack which caused a significant injury to his brain (5 days after Glenn), and a multiple surgery intervention in May for his g-tube, broncoscopy, ear tubes, and circumcision. He has had more bouts with Acidosis and Chylothorax than I can count and now we are dealing with an AP Collateral Valve. He acquired the nickname "Screwball" from his Cardiac Surgeon by 3 months old since no matter what predictions were put on the table, Simon would ALWAYS go a different route! He was admitted to hospital 12 different times before 15 months. God bless you two for loving your little girl so much! I will be praying!

  2. Sweet Little Warrior Princess, your Nana is praying for you to fool the doctors and do really well on the Glenn procedure! We know God is with you to guide the doctors' hands and to encourage them to give their best effort and to "do no harm." And we know that Jesus will stand beside you and hold your pretty little hands. The rest of us will be praying for a successful surgery and a quick recovery. God bless you, precious Emma! How much you are loved by so many!

  3. I Love your idea about Hope for Emmas heart. I have been following your blog from the beginning. See, my sweet baby Micah had HLHS too. All the precious and sweet baby girls and boys are in my prayers. Be looking for a special gift for your baby in the mail closer to the end of the month. I will also send a special care package to you for your organization. Praying you get your goal made. We will be praying for your sweet Emma. Lori

  4. Emma,

    You are in my prayers all the time. You have been through so much, but I believe God has a good plan for your life. And I look forward to the day that you will be giving your own testimony of how God healed you. And what a testimony that will be. I am also adding Simon and Micah to my prayer list.


  5. We will be praying for Emma and your family. I also know what it's like to have a little complicated HLHS daughter. My wonderful Raygen was born on 3/23/11 and she had her Norwood 6 days later. During the Norwood her vocal cords were paraylized and she had to have a trach at 2 months. We spent 3 months at Childrens before we were able to bring Raygen home and then have been back for 3 days for a cold. We are waiting on her heart cath date to determine when her Glenn will be now. We did find out that the right side of her vocal cords are working normal so she may get rid of the trach but before or after the glenn is the question. From one heart mom to another know that you and your family are not alone and we will be praying. Your daughter is so pretty. You can see Raygen at
    God Bless.

  6. Hey Emma,
    Not sure if I ever bumped into you here at Children's, I just ran across your blog with the other heart moms I'm currently waiting and have been waiting for 5 months now for my daughter to get her Glenn procedure. Dr.Forbess and Dr.Gullesarian did her Norwood back in April. I will be praying for Mrs.Emma, maybe one day we will cross paths up here! Haha.