Wednesday, September 5, 2012

September 5

The clock read 7:08 as I jumped up with a start to comfort my figitting baby.  She hadn't had any pain meds since about 8:30 last night and I didn't want to start the day with some sort of PRN.  As I patted her Z-flow to try and calm her down without much hope of a lowered heart rate, I was pleasantly surprised to see her calm quickly and open her eyeballs.  For two hours Vivi was happy.  She was smiling under her tape, her eyes were open, and most importantly her heart rate remained in a manageable rate and we had no need to drug her prior to her leaving for her procedure. I don't think we have ever had that much time together as a family where all three of us we gathered around the bed content and alert.  I looked at Viv's belly at one point and it was 100% better from yesterday, not 100% normal, but definately a huge improvement from what we have been seeing.  Honestly, this brought me so much hope--if her belly bloating was related to feeding, arrows are pointing toward heart failure which is what we are praying for here!  About 9 o'clock, Viv decided it was time to go to sleep and just shut her little angel eyes right as the anesthesiologists got to our door.  This morning was one of my favortie moments in the past 43 days.

Our day was long.  Viv was down in the IR (interventional radiology) from 9:28-5:13.  Her time was unexpectedly long because the doctors ended up taking extra pictures after getting in and seeing what was going on inside.  For me, it was different from all the other times we have wheeled her through the halls for either surgery or an MRI or cath...I am numb to this scene, which is terrible.  It has become almost a norm that we follow.

When the doctors had brought her up from the IR, we didn't receive any real anwers.  The doctors still needed to look through the pictures and put all that was found together.  We haven't heard definates, except that the fluid out of her belly is probably not what is called 'kyle' (i don't know if that is how it is spelled, we couldn't find it on the internet by that spelling)--this is a GOOD thing!  We do know that what was found is something that the doctors have never seen before.  In the imaging, they didn't see evidence of her SMV, the superior mesenteric vein, which comes from the intestine which connects with the splenic vein and both connect to the portal vein which then takes the blood into the liver.  However, she doesn't have a portal vein either (Abernathy Syndrome) so her anatomy is extremely unique.  We don't know what this means at this point, so we are continuing to pray that it doesn't effect the plan we have at this moment to move on with transplant. I am hoping to hear from the doctors tomorrow. 

The good news in all of this is that I got a great picture of Viv without tape all over her face, AND I got to play dress ups! :)

Then Mommy decided we needed to go big or go home and put on the boots :)
I am blessed to say that I feel peace again in my heart.  I don't know what God has in store for Vivian and our family.  I don't know if what they are going to share with us tomorrow is going to be "good" news.  I don't know if an absence of the SMV is going to be compatible with a heart transplant.  There could be no issue, could have been a misread, and the SMV is present and we are dealing strictly with heart failure.  I don't know.  For the first time in this journey, I don't have a gut.  Although it is scary, it's freeing too.  I'm not expecting anything but to love Viv the best I can.
We were given the great blessing of having with us tonight relics of Mary and Joseph's cloaks, as well as a splinter from Christ's cross.  I will be honest, I am not one to have feelings or moments when I see relics, that is more Rod's thing--he LOVES them.  But when the relics of Joseph and Mary's cloaks were in my hands, I felt such comfort, such power, such love--I am overwhelmed.  We have the Holy Family with us in a very real way for the night.  The blessing this is, I don't think I can express in words....I am sure there will be thoughts to come.  Thank you so much Theresa for thinking of tracking these down for us.  I will be placing the splinter from the cross up to my heart and Viv's.
Both relics

Relics of the splinter from the Cross

Relics of the Blessed Mother's and St. Jospeh's cloak
Tonight I ask that you continue to pray, pray, pray especially for the wisdom and clarity of the doctors and the strength and grace to receive their news tomorrow. Thank you for  the prayers, the love and all the support.  We are so blessed!


  1. Totally dig her rain boots and so appropriate for this afternoon. She is one stylin' girl. Our thoughts and prayers will be with you tomorrow. Praying that the news is good, knowing that God is holding you as you must hold each other through this journey. All our love and prayers.
    Diane & Steve Bissmeyer

  2. Praying! And I love Viv in all her new dress up clothes ;) Also- I think the word you're looking for is 'chyle...' If only the medical lingo were easier to digest- it's been like learning a whole new language!