Thursday, August 30, 2012

August 30

It's been 37 days.  37 days of doctors, 4:30 am X-rays, silent cries, chorus of beeping, plastic fold out couch attempted sleep--in short, 37 days of riding an emotional and physical roller coaster. In the past 37 days Vivi has had countless Echoes and X-rays, an EKG, a CT Scan, an MRI, 2 PICCs put in, massive Heart surgery, 2 chest tubes, a PD catheter, a Cardiac Cath, an Arterial line, a Foley, 2 chest tubes taken out, her PD tube taken out, her arteial line out.  She has been intubated, extubated, re-intubated and extubated again, an NG tube turned into an NJ tube had anethsia more times than most people do in their entire life, has had a morphine drip, and gained 2 lbs.  My sweet angel baby has taken on more challenges in the past 37 days of her life than most people do in 37 years.  If each step of our journey is meant to bring us closer to holiness and fulness of this life, I can't imagine what other steps God has in store for Vivian.  I can't imagine what other steps God has in store for me or for Rod.  The past 37 days have been, bare none, the most joyful and sorrowful days of my life.  Each moment has presented immense love, opportunities to grow closer to each other, and to rely more on Christ.

Today, this 37th day has been my hardest day. I am tired.  I am drained emotionally.  I am not sorry for myself, I could stay in this room until thy Kingdom come if that is what God wanted.  I am sorry for my baby.  I am tired of watching her cry silently.  I am tired of not being able to just pick her up because of her breathing when she gets agitated.  I am tired of not being able to fix her.  I want for her to be able to be loved, hugged and kissed without wires getting tangled or alarms going off.  Sometimes when she opens her eyes, there isn't pain, just sadness.  Questions of "when will this be over?  Can't I go home?"  I found myself the other night lying next to her in bed trying to settle her down at 2:30am crying while rubbing her head pleading with the Lord, "I love you, I have never doubted you.  I say this because I believe in You--heal her!  Give us a heart so she can live!"  I got so bold as to put throw out a timeline--"Please Lord, please--my birthday is in a month...I know you can give her a heart by then.  That is ALL I WANT!!"  I believe in what God has told me...I know Vivian is going to be ok.  It is just this process that is going to kill me.

Rod shared with me a story about a man who was dead for 8 hours and came back to life to share with whoever would hear his experience journeying to Heaven.  What stuck out to me, was Christ told this man the thing that meant the most to Him was each person's death to self for Christ's sake.  That is what holiness truly is--dying to our human self allowing Christ to fill us up.  Each moment I am here in room 16 a part of me must die....I am not the one in control.  I am not the one who can make Vivian better adn that reality won't change.  All I can do is love her.  Love her until I think I can't love any more and then choose to keep loving. At this breaking point today I feel empty.  I feel like I can't go on...primetime for Christ to take over and use me to love. 

I turned on KLove today in the car driving back after a much needed change of scenery.  A singer, I don't know who, was talking about his new song and the meaning behind it.  He was saying that any obstacle in our life is a mountain, and that Christ tells us in Matthew 17:20,
' I tell you the truth, if you have faith as small as a mustard seed,
you can say to this mountain,
 'Move from here to there' and it will move. Nothing will be impossible for you.'
I (of course) started crying--what great hope.  Vivian's heart is my Kilimanjaro.  I do believe in what God has promised me, in what He has assured me.  Maybe the mountain won't move, but I know placing all my trust in God's grace, strength, power and love, I will, Viv will, be able to climb this mountain in our midst.
Vivi's belly has expanded again after beginning feeds.  The doctors started her on Calcium this morning to get her heart pumping stronger and harder in hopes that more blood will circulate through her body and move the breastmilk she has been receiving easier through her digestive track.  If this doesn't work, we will have to give her a blood transfusion.  This is not optimal because with each transfusion, Vivian's body adapts to new antibodies, which increases the risk of rejection after a transplant.  Please pray we don't need to give her blood!  We already have needed to post surgery a few times, so she has already begun to store up antibodies.  To lighten the mood, the doctors have not been surprised that Viv is throwing us a curveball.  He just said in evening rounds, "The lesson is, Miss Vivian in demanding respect from all of us making sure we all know our place, and that she is definately in charge".  Thats my girl :)
I ask for another prayer request as well--Rod's grandpa passed away today as well.  We are very excited for him to meet Jesus, but of course there is much grief as we say good-bye on Earth.  Please pray for Grandpa, and for all of Rod's family especially his mom during these next few days.


  1. Every night before I go to bed I check in on little vivi and you. My heart breaks for you,rod and vivi. I promise to pray harder and tell my girls to pray harder to send vivi a new heart and heal her ailments. Stay strong. You are a great mommy!!!!!!!! Like the best!!!

  2. Thought of you today when I read this....

  3. I am a friend of your sister in law, maira. I just wanted to say that my hear aches for you and all that your famiy is going through! I have been praying so hard for you and hope that vivi gets better soon. What an amazing inspiration you are and your faith through all of this is something to be admired. I pray for the family that has so suffer so greatly for vivi to have a heart and i pray for strength for vivi to keep fighting and for your family to keep staying strong. We are rooting for you vivi.

  4. I am a "friend of a friend" of your mom. I have been praying for you and following your story since Vivian was born. I have shared your story with others, and requested prayers for healing for your precious daughter, and strength for you and Rod. I had a child born with serious medical issues 3 yrs. ago. I remember the agony and exhaustion, but also the presence of God's love cradling me at that challenging time. I wish I could help you carry your cross in some way... My rosary today will be offered up for Vivi's comfort today. May God Bless you all.

  5. Maria, you are such a strong person (I know it doesn't seem like it at times!) in so many ways, but most importantly in your faith! As you watch little Vivi fight, keep telling her (and yourself) "Christ and I are an overwhelming majority!" I am certain that Christ is cradling you and Rod in His precious arms as you walk this journey, right next to your sweet baby. I continue to keep you and your family in my prayers, and will ask my students to do so as well!

  6. I've been thinking of you all and the song my mom used to sing to me (and i in turn sang to my kiddos) keeps popping into my head too. It is a perfect song for you, Rod and Vivi. The words go:
    "Tell me why the stars do shine, Tell me why the ivy twines, Tell me why the sky's so blue, and I will tell you just why I love you.
    Because God made the stars to shine, Because God made the ivy twine, Because God made the sky so blue, Because God made you thats why I love you!
    I know its true that God above, Created someone for me to love, So He chose you from all the rest, Because He knew dear, I'd love you the best!"
    Thinking and praying for you all as always! The Foxes