Once Upon A Prayer

Wednesday, January 16, 2013

Lily is the Boss

If there is one thing the ICU doctors have learned about Lily since they first met her in July, it is that she is the boss!  Children who have Lily's type of heart defect, especially with the Fontan, do not do well overall while they are intubated and on a ventilator.  The flow from the vent really messes with their pressures.  However, Miss Lily's body is insisting, much to the doctors and surgeons dismay that she is perfectly happy on the vent.  Except for when she "wakes" up and tries to pull it out, while violently shaking her head at me...all the while demanding water!  Yes, this is true <3

The surgeons and hematologists decided that using the TPA to attempt to break up the blood clot in Lily's heart was a bad idea.  Since the clot is quite large at 6mm's, they all felt that the risk was way to high for her to suffer a massive stroke and death.  After running an additional blood test this morning, they discovered that Lily has a hereditary disorder called antithrombin 3.   Antithrombin 3 deficiency is a disorder of blood clotting.  People with this condition are at a higher than normal risk for developing abnormal blood clots.

So for now, Lily will remain heavily sedated and intubated.  The hope and goal is to get her off the ventilator by tomorrow evening or Friday.  Tonight, they decided to turn off the cooling blanket and see if she can maintain her stats as her temperature begins to rise.  Fingers crossed, and prayers sent up!

In the day when I cried out,
you answered me, and made me bold with strength
in my soul.  Psalm 138:3


  1. Thank you so much for the update, Emily! Still praying for you and your sweet baby and for a quiet and stable night of healing!! We love you!!!

  2. " He will cover you with His wings. And under His wings you will be safe. He is faithful like a safe-covering and a strong wall.You will not be afraid of trouble at night, or of the arrow that flies by day. 6 You will not be afraid of the sickness that walks in darkness, or of the trouble that destroys at noon" Ps 91:4

    You and Lily, and your whole family have been on my heart and in my prayers continually today. It is my prayer He will be a tangible presence, covering you, a strong presence of comfort and peace.

  3. My prayers continue for Miss Lily. I believe there is nothing too difficult for my God and that includes all of Lily's needs. Expecting a miracle!

  4. Praying for you all over and over and over. Your need can't outweigh His vast resources of all-sufficiency! Trusting Him to speak peace and rest to your soul. We hope you feel all of us holding up your arms! Hold fast dear one.

  5. Praying daily for sweet Lily, and her beautiful family.

  6. Praying for sweet Lily...
    May you be so aware of Jesus' presence with you all...

  7. Praying for you here too! I haven't been able to stop thinking about your precious girl.... I know our good Lord has her in the palm of His hand. I pray you feel that love surround you and your baby girl tonight and every day.

  8. "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Is. 41:10

    Praying today for strength and healing for precious Lily, and for continued wisdom for her doctors and caregivers!

  9. Praying daily for your precious one! Hugs from Colorado!

  10. Emily, my heart aches for you all. My name is Lalisa Carpenter. My husband and I have 3 biological children and 4 children adopted from China. We live in N.C. 1 1/2 years ago our 3 year old daughter (special need cleft lip/palate) from Shanxi, China spent 13 weeks in Intensive care prior to passing away. She had the flu which lead to high fever and seizures. The only way the seizures would stop was for her to be in an induced coma. Without going into details she passed away from complications of prolonged seizures and other factors. I pray that God will work a miracle in little Livy's body. I pray for comfort & rest for you and your family. I know how exhausting "living" in ICU can be. Hugs from the Carpenters

  11. Praying so much for Lily's little heart and body to heal so that she can go home with her family. She is in my constants prayers as is your entire family!!

    Praying in NYC,