Day 3 on ECMO

You Know that feeling when you first wake up and your mind is not fully awake.   For a moment you think all is good and then you are hit with the reality.  This is what has happened for Ed and I every morning.  We do not wake to the sounds of the birds singing or girls laughing.  The sounds here are much different.  Beeps, alarms and children crying.  We pass other parents in the hall.  Their faces tell their childs story.   No words, just a  head nod is all.  We all can feel each others pain.

We sleep and eat out of necessity.  We want one of us by Teresa's side at all times so we can comfort her when she awakens for short periods.

This morning she is stable and resting.  Her blood work and gasses look good.  We are praying that her creatinine (kidney function) will plateau today and start trending down.   She is very swollen , so praying that she will start eliminating  more fluid.  Her liver is very hard and enlarged.  Praying this will reside.

 We play all of Teresa's favorite Disney princess songs for her to hear.  Even though she is sedated , when she awakens we know she can hear them.  She signed that she wanted a drink.  Poor baby is so thirsty and she hates all the tubes in her mouth.

Her nose and eyes and mouth continue to bleed a lot.  ENT is coming today to have a closer look.  Her nose has been packed but this just makes the blood come out other places more.

As one person so kindly wrote ,  we know we are praying to the same God that created Teresa with her little broken half heart.  Her response to people when they ask about her arm , she always told them ,"this is how Jesus made me".  And she is right , this is how Jesus made her .  With half a heart and a little arm.    In this little broken half a heart HE gave her more love for others, life and GOD than any other person I know.  Yes, God created her this way for a reason.  She has defied all medical odds, surviving  birth, life in an orphanage for 3 years and no medical intervention to repair her heart.  God loves Teresa far more than we ever will.  This is all Gods will for Teresa.     She spreads Gods love to others by the endless hugs that she gives to others.  She loves to hug.   She also loves to talk about heaven and all the beautiful flowers you can pick there.  She loves rainbows and the beautiful colors.   God gave her incredible strength and a magical personality.  Through her life HE has touched thousands of lives around the world.  She has inspired others  to adopt, become organ donors and love God.  Hearing her story has given others strength to face struggles in their own lives. 

Gods plan for Teresa's life has been incredible.  She has touched so many lives in 6 short years.

Father Whatley reminded us that yes Teresa will have her miracle.  Every part of Tersa's life has been a miracle.  Her last miracle will be for God to heal her heart here on earth or HE will heal her heart in heaven .   
When we adopted Teresa we wanted her to know the love of having her own family.  How long God would share her with us was unknown.  She wanted a family more than any other child.  At three years old when we adopted her  she knew she did not have a family and this was all she wanted .  She was so happy to have 8 sisters and brothers. 

We are praying that God will share Teresa with us for a very long time.
Please also pray for all of the children here in the CICU and Teresa's heart HERO.