Sunday, January 27, 2013

Another Mascara Day

I am so happy to report that overall we had another mascara day (I wrote in my last post that I have been putting mascara on in the mornings, because I know it is going to be a good day and I will not have to cry.  It has worked).  The doctors removed some lines from Evan's legs yesterday that either went bad or are not needed anymore.  They also removed his catheter, so it was a big day for him.  We got to hold him for several hours and he was alert for most of that time.  His blood pressure is too high again even though he is still on medicine.  I am really worried about that.  The heart and kidneys have made great improvements and we are praying that they can make a full recovery (he is still on heart and kidney medicine right now).  He is also on Heparin (blood thinner) for the blood clot in his vein.  They are going to do another renal ultrasound tomorrow to check on the kidneys and another heart ECHO, so we have another big day ahead of us.  Today is going to be a day of rest.  I am hoping that we will not see many changes today, a day of no change is a good day when you are in critical care.  I am praying that there will be no more new issues!
Evan also moved rooms yesterday, which is significant.  I wish I did not know this, but they have a system of where they put the sickest kids at the end of the hall and they slowly move up rooms as they get better.  The rooms at the end of the halls are bigger for more equipment and procedures they have to perform.  Evan has been in the last room of the hallway all week, so moving up one room is good news!  Here is another thing I wish I didn't know.  Evan was turned around in his bed when he was first moved to the CVICU.  That is a sign to the nurses that this baby is really sick, because it means they were ready to do an ECMO procedure (putting him on life support).  I am happy to report that he was turned around in is bed this week too.  Last Saturday night (when they intubated him and moved him upstairs) all of the nurses received an email about him pretty much saying that they are getting a really sick baby that they don't know will make it, just so they are prepared and can deal with family members.  I am writing all this down to prove to you how much of a fighter and a miracle baby he is!  He looks like a completely different baby now.  He is just so perfect!

Once again I want to thank everybody that has supported us through this journey.  I have cried many tears of joy this week, because I am just so overwhelmed with the support.  I am hoping one day soon I can thank everybody individually and personally.  This has changed my life forever.  No parent will ever come close to understanding what we are going through unless you have been in a similar situation.  So, I am hoping that one day down the road I can use my experience to help other families in need.

Here is to another mascara day!  This has become my motto now and I really like it.

This was Evan in my arms yesterday

Kristin and Casey brought me this bracelet from our house the other day.  It is from the Color of Hope gala last year.  We have always supported this event and it now has a whole new meaning.  I have worn this bracelet 24/7 now and it has given me more strength and of course HOPE.  


  1. Headed to church right now and will pray for Evan to keep getting stronger!

  2. We have some common friends through SinC (I am new). You all are in my thoughs and prayers. I am so glad he is doing better. My sister had a very sick baby too... I am so greatful that you could hold him this week- she was unable to hold my nephew for nearly a month (he was born full term but got RSV when he was 2 days old and was in very rough shape and the big ventilator for over a month- coded twice). The fact that you can hold him and touch him is really great news. He just celebrated his 5th birthday- so YOU WILL MAKE IT THOUGH THIS. Thoughts and prayers for healing and continued strength for you and your family.

    Angela Shadduck

  3. Psalm 33:20
    We wait in HOPE for the LORD; he is our help and our shield.

    Psalm 33:22
    May your unfailing love rest upon us, O LORD, even as we put our HOPE in you.

    Psalm 62:5
    Find rest, O my soul, in God alone; my HOPE comes from him.

    Isaiah 40:30-31
    but those who HOPE in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

    Lamentations 3:21-22
    21 Yet this I call to mind and therefore I have HOPE: Because of the LORD's great love we are not consumed, for his compassions never fail.

    Romans 12:12
    12 Be joyful in HOPE, patient in affliction, faithful in prayer.

    Romans 15:13
    May the God of HOPE fill you with all joy and peace as you trust in him, so that you may overflow with HOPE by the power of the Holy Spirit.

    PRAYING FOR YOU SWEET FRIEND!!! Rejoicing with you at the answered prayers and continuing to petition to our faithful God on Evan's behalf for COMPLETE HEALING! Our hope is in Him and in Him alone!!

    Here's to continued mascara days!!!

    Love you!

  4. We are praying for you all in San Diego, California.

  5. I'll just copy what I said on FB here... :) I love you and am SO thrilled with each step forward!

    We serve a MIGHTY God! He hears the cries of every momma. He knows us. He loves us. He cares for us and catches every single tear we shed. He loves our babies more than we could EVER fathom. He will NOT ever leave our side. He will NOT ever leave our babies' side. He covers each of them with His mighty, glorious, everlasting love. He is a God of miracles and continues to prove His faithfulness again and again. It is with a grateful heart that I sit at the feet of my Abba Father and thank HIM for the miracles He is working right now in the life of His beloved, Evan!!!!