Tuesday, September 25, 2012

September 24, Celebrate Life

What a day this day has been.  If  you would have asked me a year ago if I ever thought I would bury my daughter I would have laughed.  It truly is amazing the plans God has for us from the beginning of time.

The day was perfect.  All I wanted all along was for Vivi to have the celebration she deserved...afterall, she is a saint!  For me, I have realized I hurt and feel empty and righ now purposeless without her.  But there is so much joy and happiness because she is seeing God face to face in a way that none of us on earth ever will.

I have had many people tell me how strong I am, and let me be honest and say that it is not me by myself, it is a result of the prayers that have been said for us.  The grace is outpouring in an abundance I could have never prepared for.  I have a confession to make  as well--I went through a lot of grieving this reality a few weeks ago when we had the talk with the doctors.  I knew this is where I would be..that life without my daughter was going to be my reality.  I couldn't look at Vivi without crying, all my thoughts were consumed with the sadness of her funeral and 'how will i ever move on?'.  After pouring this all out to my mom and Rod, both made me see that I wasn't there and I needed to live in the moment and enjoy each minute I had with my girl.  Thank God for that!  I can say that every moment from there on out was a true blessing.  In those two weeks, there was so much more joy and love I was then able to share with Vivian, with Rod, with my family.  I have no regrets.  I believe this is why I was able to see yesterday as such a celebration....Vivian's Celebration of Life.  This does not exclude me from having my moments for forever, but I feel like I am so blessed to be in a healthy emotional space.

It was overwhleming to see the line of people that circled through the gathering space of the church to see Vivian.  The stories of how and why people were there was unbelieveable.  We had people that came who didn't know Rod or I, but found Vivi's blog and fell in love with her.  I had friends I hadn't seen since high school come. Rod had past coworkers come.  We had so much family, friends and friends of friends...it was amazing.  I had one of my sister's friend's mom tell me that Vivian was the topic of a priest's( who we don't know) homily last week.  What this child accomplished in 59 days is something some people couldn't accomplish in 100 years of life.  For me, as her mom, to sit there and see all these people and just hear snippets of how she transformed the lives of so many was a humbling honor.  Thank you, to all that were there and all who shared. 

I know I have said this, but the day was perfect.  The mass was so special--so alive.  The ceremony at the grave site was what I imagine the entrance to Heaven to be like.  People surrounding you, welcoming you back home...and although there were so many people there, I know it was a slight fraction of the welcome Vivi received.  At moments it was strange because I knew Vivi was already in Heaven--I know her soul leapt into Mary's arms as she left her body... I could see it in the room at the hospital.  But yesterday, I could almost see the image of God, and I saw Him welcoming her into His arms.  I could see her smiling so brightly, and God just beaming, joy oozing out of Him as Vivian jumped up to give Him a big hug.  She is so special to Him...and He is so special to her. 

My Dearest Vivi,

Oh Baby Girl-words will never be able to begin to descibe the love my heart holds for you.  In 59 short days, your sweet soul captured the hearts of all who fumbles onto your path.  You, my sweet girl, are an inspiration adn light to each of us here, and to any that are not.

Being your mom is a joy that humbles me--why did God chose me to be the mother of such an amazing saint? Someday, I hope to see as you see, but until then, I am in complete awe.

I never wanted to be 'that mom' you know the one that thinks her child is so special--but I couldn't help it--you are so precious.  It always made me feel better about this when after someone visited you they would tell me that they felt like a better person.  There is something about you Vivi that drew people so close, encouraged people to be better.

My dear, in your short stay on this earth, you have taught me so much--you have taught me to love every moment...to cherish the little things that are so mundane we take for granted.  I don't think I ever in my life have gotten so excited to change a diaper or clip nails or do laundry.  You have taught me through your actions how to suffer with great grace.  Never once did you back down or stop fighting as you lived your mission on earth.  Every blow you took like a total champ--even as you left this world, I know your cries weren't because of pain, but saddness that those were our final moments as a family on this earth.  You have taught me to love courageously, to give my all to God....even if it is my most precious treasure.  You have taught me the importance of community, of gratitude, of patience and perserverence.

I will always smile when I remember your sweet little quirks--your lover for Mr. Lambie, how you would always look to see if Daddy or I were around, the image of you smiling in your sleep.  I will always love your fiestiness--how you tried to pull out your tubem how even hand restraints wouldn't keep you from hitting people when they were doing an echo or ultrasound, how you always demanded to have your hands by your face, or on your face, or rubbing your werewolf ear or suspended in the air while you were sleeping, or gripping onto Daddy's finger.

My most precious moments were the ones when I got to hold you for the first times--the day after you were born, a few days after your surgery, and today.  My heart will always long for you.

Viv, you did such a great job here.  If our ultimate goal is to leave the wolrd better than we found it-you definitely did achieve the goal--what a victory.

Being your mom will always be an honor and a joy.  A breath-taking experience of God's great love.  I know heaven is a much happier place since you arrived.

My precious Vivian, thank you for being here.  Thank you for choosing me to be your mommy.  Thank you for making us a family.  I will love you until forever.

St. Vivian, Pray for us!

I Love you Baby Girl,

Holding Vivian's body for the last time on this earth yesterday was not something I expected myself to do.  It didn't look like her, even though she looked like a baby doll someone would pay big bucks for, my motherly instinct just took over.  I couldn't stop myself from reaching for her...from wanting to squeeze her, and whisper in her ear one last time.  She is a complete masterpiece...a gift that is nonrepeatable.

I tried to say thank you to all of you there yesterday, but I know I missed many.  Please, please,please know that my heart bursts with gratitude for your love and support and prayers.  All our lives are changed for the better after meeting, knowing or reading about Vivian. Rod and I are so proud of her, that she is a saint--please know she is willing and able to intercede for you, for your children...it is kinda now her job :)  The love that she shared with me, I pray I am always able to share with those in my life...whether for a short time, or extended stay.

This is a closing of a chapter in Rod and my life.  Today, we start another chapter that we don't know quite how to, what will happen or what we will do.  There is a saddness, an excitement--we know we have made it through this together....that God is making us better because of it...that God must have something good in store for us.  My aunt said yesterday "I do believe Vivian's Victory is just beginning".  Yes...I do believe.  This is just the beginning of the mission...God is here!

Sunday, September 23, 2012

Sept 23

Tomorrow Is Vivian's Big Party Day!  I invite you to please join us to celebrate her life.  If you are coming to the Mass and Celebration, wear your Vivian's Victory T-Shirt if you have one!  Girlfriend has achieved the ultimate Victory!

Friday, September 21, 2012

September 21

I have so many things I want to share and have no idea how they will come out through words.  First, I am overwhelmed by the love I have been receiving today.  One of the greatest blessings of Vivian's life was that we only saw good in people.  It is amazing how wonderful our world is, and when we get down to the heart of the matter, we are all connected.  Thank you for attributing to that feeling.

Yesterday was a total whirlwind.  It began like any other day.  I was up through the night...it was rather exciting in the 100 pod of the CICU.  Nurses were on their toes all night--not because of Viv, but the other kids around us.  I would look out the door and watch the nurses roll up what I affectionately called the "cart of death" to 3 different rooms.  At that point, I had been an 8 week live-in of this pod and I had NEVER seen a night like that.  Needless to say, when 6:45 rolled around and I had been awake most of the night, I was ready to sleep.  I had been so exhausted...the past few days Viv had some upsets--she spit of blood on Monday night and then all day Tuesday was quite fussy through the night and Wednesday was the same.  I happily awoke at noon, just in time to watch Viv have a melt down, shower and get back to my room in time to greet our prayer friend to pray over Vivian.

Viv and I had become my mom's job.  Originally Thursday she was going to be with my sisters all day.  I got a message from her when I got back from my shower that she was done early with the walk-a-thon and was going to come to the hospital to hang with me.  While our friend was there saying healing prayers over Vivian, I was able to sit at the side of the bed while she slept and held her hand.  There were a few times when I looked up at her and caught her smiling.  For a mother's heart, it was some of the most beautiful moments of my time with her.  I love seeing her different faces, and most of the ones I had seen were ones she would give were her angry eyebrows or a grimace.  But who could blame her?  Her entire life she had tubes down her throat, through her nose....you name it, she had it.  About 2:45, it was the grand exodus.  I had 3 visitors, 2 friends and my mom, and all on cue they got up to leave.  I was getting ready to hold Viv and to have my friend Megan come visit, so I was fine with that.  There was nothing though that could prepare me or my heart for what lied ahead in just a few quick moments.

I looked out the door waiving as my mom exited the pod.  No sooner did I turn back around to go play with Vivi did she begin throwing up blood.  Not just a little, a lot.  It ran out of her mouth.  It was a scene I know I could never forget.  I was torn for my immediate reaction...wipe off Viv or yell for my mom.  I tried to do both, but missed my mom out the door.  Immediately my body went into panic mode.  I called my mom frantic to get back up to the room, and wiping up the blood covering Viv, welcoming Megan into my room and calling Rod.  As my mom walked back in the door Vivian threw up again.  I thought I couldn't be more freaked out than the time before, but this was terrifying.  The blood kept coming in clots, out her mouth and nose.  I couldn't even tell you how or what happened next...I tried to clean her off around the nurses and the doctors that filled the room.  I then got so light-headed, I thought I was going to pass out.  In that moment, it was almost as I saw things is a dual screen in slow motion.  On one side was my reality.  My 58 day old baby covered in blood, but just laying there.  No crying, not even a blink of her eye.  She just accepted it.  On the other side was a scene from the Passion.  After Jesus was scourged at the pillar, Mary comes out of the crowd and soaks up His blood in white towels given to her.  Everyone around her is just staring at her.  Her face a this moment has always been imprinted on my heart...so stoic, so numb, so helpless...and I knew we shared the same face at that moment.  With my white 4X4 gauze pads, I too, was wiping up my child's precious blood....blood she needed to continue to fight all over.

I felt my heart being piereced, it took the wind out of me.  I don't even know how or when the doctor came to me, but he simply said, "there really is nothing more we can do.  We need to get her comfortable while you wait for her to pass".  Was I really at this point?  And how did this happen?  I would have never thought the way September 20 started, so mindless, so normal, that it would be a day that I will never forget.

Just the night before I went out for a bit to blow off some steam by doing a bit of retail therapy, and at one moment pushing through racks of clothes I thought, "I am almost 26 years old.  I should be out having fun...or if I have a baby out showing her off, not living out of a hospital wondering if my baby is going to live" .  Of course I immediately shut that out.  You will be ok.  Rod will be ok.  Vivi is going to be ok.  Not even 24 hours later, none of those were true.  I was numb, Rod was confused, and Viv was soaked in blood.  None of those scenearios in my mind ring "OK".

A few weeks ago when I thought about the potential of all this happening, I was freaked out.  I was so weak--I couldn't imagine going on.  I couln't image seeing a baby without crying.  I couldn't image being able to be in the same room as any of my pregnant friends.  I mentioned this once before, some Jan wisdom, "you don't get the ticket until you ge to the station".  Well I was standing out front Grand Central, and the moment I stepped in, the floodgates of grace opened.  God was there.  I was graced with a peace that certainly surpassed all understanding.  I will never be able to explain how I went throught the rest of the night and this morning besides that.

Even in Vivian's last hours of life, she was sharing such love with everyone.  One of the transplant doctors came in to talk with us about what our plan should be to say good-bye, and as she looked at Vivian and spoke with us she started to cry. "Vivian is such a special baby" she had said-certainly a gift for me to hear from one of the doctors who sees thousands of babies.  Of course I had to dress her up in her tutu, and wrap her in a cozy blanket, and then Rod and I parked it for the next 12 or so hours.  It was very sweet--a few nurses poked there heads in to say good-bye, and thanked us for sharing our daughter with them.  Knowing that Vivian left each person a little better is a sure consolation to this mama's heart.

In that time we were able to have family come to see Viv, to hold her one last time and to really take the time to cherish her and love her into heaven.  We all said the Rosary around her, and as we said the fifth Glorious mystery, The Coronation of Mary as Queen of Heaven, I could see Viv in her tutu dancing around Mary, picking her flowers and smiling.  I knew that Viv was going to be bringing such a great joy and happiness to Heaven.

As the hours spilled into the early morning, Rod and I took turns holding Viv.  I got to tell her the story of her life, from when we found out we were pregnant to that moment.  I got to sing to her, kiss her beautiful face that we were seeing without tape for the first time, I got to tell her I love her, tell her how special she is, how proud I am of her all night long.  It was so amazing.  Truly moments I will never forget.  I shared with her my favorite moments with her...each time I got to hold her for the first time--after she was born, after her surgery--she is my heart. 

Rod and I were a little nervous about how she would leave us.  After we had extubated her the two other times, her heart starting beating so fast, it could have had a heart attack.  I think we both feared that.  God truly blessed us, and we were able to see her go so peacefully.  Around 4:30, the doctor and nurse came in to tell us that her heart rate was dramatically slowing down...the time was coming. For about a half hour her breathing slowed down little by little.  I felt that since I escorted her into the world, her daddy should be the one to escourt her out, and while comfortable in his arms, she had 3 big breaths, and then in typical Viv fashion let out a sweet little "good-bye" breath.  It was 5:13.

My whole life I feared being in the room when someone died, but this moment was a moment full of beauty, full of life--it was truly a holy moment.  In those moments when Viv was transitioning from this workd to Heaven, I could feel our room be filled with angels and saints and I know Mary was righ behind me reaching out her arms to grab Vivi's soul.  At 5:13, I kissed her little fingers, and felt her arms around my neck.  She was still wearing her tutu, and was all smiles.  My job as a mom was done.  My baby was in Heaven, not just in Heaven, she is a saint, experiencing Heaven in a way I never will.

I was able to bathe her, to wipe all the blood off her body, to pull out her IVs, take off her bandages, swaddle and hold her for one last time.  It was amazing to love her..all of her, for her entire life.  Although I pray I never have to do that again, I praise God for being given the opportunity to love all the way.

Today I am having moments as I know I will from here until I see her again in Heaven.  My true joy is that if our mission in this life is to leave the world better than we found it, Viv did it.  She did it in a way some people will never be able to after being on this side of eternity for 100 years.  In her 59 days of life, she truly lived life fully by sharing such great love, and by living that bringing out such goodness of each person in her path.

We are Celebrating Vivian's life Monday, September 24 at St. John the Baptist Dry Ridge.  We would love to welcome all of you who have loved her, and who she has loved to join us.  Her Visitation will begin at 10, with Mass at 11.  Her "Welcome to Heaven Party" will immediately follow. 

September 21, Welcome to Heaven!

Of course I will elaborate one of these days. This morning, I can't.  Vivian was welcomed into Heaven at 5:13 this morning.  We had over 10 hours to cherish her and say good-bye. 

Thursday, September 20, 2012

September 20, Day 58

Vivian is throwing up blood.  Please pray for us and our family as we face some very difficult moments and choices.  We still believe God is Here and even now can perform a miracle.

Tuesday, September 18, 2012

September 18, Day 56

8 weeks have gone by and I am learning what it means to pray unceasingly!  I never fully understood what that meant until now.  I never have a what i used to call "blank" moment in my mind.  I now always have things to discuss with Christ about what I need in each moment.

Viv had a great day. She was resting most of it, just recovering from the night we had last.  I thought we would be home free, and them about 5, out of no where, her heart rate spiked from 146 to 200 in a matter of seconds and she was still sleeping.  We took her temp, it was on the rise, and her belly was suddenly HUGE.  The nurse took a syringe to her NG, and out came old blood.  Looking back, I think perhaps some of that old blood could be from last night.  About 9pm last night, the nurse pushed the old blood down through the tube to give meds.  However, not what we are looking for :(

After Tylenol, morphine and methadone, she is FINALLY calmed down, 5 hours later.  The X-ray shows that she  has a lot of fluid built up in her belly. Nothing is stuck in her digestive tract, and quite frankly the doctors are stumped.  They are guessing it is the chyle fluid that is a product of poor lymphatic function. So we just need to pray this out of her.  I can't believe that God is going to share with so many people that she is going to be ok and then he pop out and say, PSYCH!  It's just now we are at the defining hour that we must never cease praying for the miracle to unfold.  Our prayer continues to be for strength for Vivian's heart, that it keeps growing and pumping, and for her lymphatic system to work and get all the fluid out of her belly so we can feed her and get her strong!

Monday, September 17, 2012

Sptember 17, Day 55 real quick :)

I have forgotten to post this for a few days--I promised a family that has been here for 4 months that I would ask for prayers for their son, Judah.  Both parents are pastors, and have seen miracles happen with Judah, and have asked their congregation to pray for Vivian.  They know the power of prayer and have experienced it, as we have, first hand.  As you remember Viv, please also remember Judah.

September 17, Day 55

Today's Gospel was quite a powerful one to read.  It comes from the Gospel of Luke, 7:1-10.  It reads:
When Jesus had finished saying all this to the people who were listening, he entered Capernaum. 2 There a centurion’s servant, whom his master valued highly, was sick and about to die. 3 The centurion heard of Jesus and sent some elders of the Jews to him, asking him to come and heal his servant. 4 When they came to Jesus, they pleaded earnestly with him, “This man deserves to have you do this, 5 because he loves our nation and has built our synagogue.” 6 So Jesus went with them.
He was not far from the house when the centurion sent friends to say to him: “Lord, don’t trouble yourself, for I do not deserve to have you come under my roof. 7 That is why I did not even consider myself worthy to come to you. But say the word, and my servant will be healed. 8 For I myself am a man under authority, with soldiers under me. I tell this one, ‘Go,’ and he goes; and that one, ‘Come,’ and he comes. I say to my servant, ‘Do this,’ and he does it.” 9 When Jesus heard this, he was amazed at him, and turning to the crowd following him, he said, “I tell you, I have not found such great faith even in Israel.” 10 Then the men who had been sent returned to the house and found the servant well.
The Chaplain here at Children's comes and chats and brings Jesus to me everyday.  Today I read this before I received Christ and had to choke back tears.  What amazing faith the centurion demonstrates to me!  I believe Christ, all You must do is say the word and Vivian will be healed!  I have such faith that Christ is beyond happy to receive so many prayers of great faith regarding Vivian's miraculous healing. 
This Gospel today is also challenging me to realize that Christ not only wants to heal Viv, but the great blessing in this journey is the love that He wants to give me personally, and the love I desire more than ever want to share with Him.  Like the centurion, I have to explain that statement--I know there is nothing I will ever do, no love that I can ever give that will be "worthy" of Christ.  However, I know He does love, and is sharing with me everyday that love and has for all time.  In these moments I realize how much I need Christ and His love more than ever!  Throughout my life I have also learned that when I open my heart to love, it is able to be filled up with so much more.  Christ fill me!
My first email today allowed me to see a comment from my post yesterday.  Yesterday was a rough day for me.  I felt scared all day for what will happen.  It is not that I don't have faith and trust fully in the miracle unfolding in my midst, but how weird would I be if I didn't have a bit of fear?  Without a little fear, there is no reason to make a complete act of trust in Christ.  Christ is so good to me, and sent to me through this comment the 'pick-me-up' I needed.  A woman wanted to share with me a message God gave her to give me--"Do not give up Hope.  Help is on the way".  I cried!  How comforting is Jesus...He knew exactly what I needed to be able to feel peace again.  I received another messge via my dad from one of his patients, "It's Abraham and Isaac--God is asking for the most precious thing, your child.  The ram is on the way".  Essentially the same message.  And a third message just not to long ago--"Help is on the way". 
Vivian had another good day.  I had an amazing talk with one of the Fellows here.  I had to pull back the reins today as the doctors were getting trigger happy with upping feeds and lowering the vent settings to prep for extubation by the end of the week...um, breaks here people!  Obvioulsy you haven't been paying as close attention as I have to your patient.  Vivs just needs a minute.  Ok, maybe 5.  The Fellow came in to assess Viv, and I told him, "As Rod says, Viv is Rocky.  We are training for the big fight--you just don't give up and win the belt."  He smiled and assured me that he agrees and appreciated my input.  I told him that I know Viv is going to be successful when we extubate, but we need to give her time.  I went so far to assure him that he is in the midst of a miracle, and everyone will be amazed soon by what happens to her.   It was sweet, his faced lightened, and looking at me he said, "I believe you.  I believe in miracles--I have seen quite a few.  My wife and I are praying for Vivian...I know she is going to be ok." 
I left tonight to go cut hair and turned right back around after receiving a phone call from Rod that Viv had thrown up blood.  Amazingly enough, I wasn't scared...felt complete peace until I saw her.  Knowing I can't take away any of this brings the tears.  She immediately had her NJ taken out of her nose and it was replaced with another tube that was then connected to a suction tube to pull out all the blood lingering inside.  The labs indicate all levels normal, so no organ is failing or anything like that.  The doctors are puzzled (surprise, surpise) and want to keep an eye on her.  She seems to be ok-When I got back, her eyes were open and she was pretty calm and seemed comfy...well that could be morphine induced, but we'll take it.  She is sleeping now, and is cracking us up how she is swinging her arm around in her sleep.  What a hoot.  Please pray for the doctors to continue to be given the wisdom of Solomon--a wison that surpassed all understanding.  That Vivian is filled with God's grace to continue to readjust her insides so her heart is strong, every organ is in the proper place and each system does it's distinct job to bring her to full health. 

Sunday, September 16, 2012

September 16, Day 54

"The great point is to never give up until the answer comes....the great fault of the children of God is, they do not continue in prayer...they do not perservere.  If they desire anything for God's glory, they should pray until they get it" --George Mueller

We are on the path to changing this quote to say "the great gift of the children of God is that they keep knocking on God's door sure that He is listening and believing has already answered".  I am confident that God is listening to every prayer, and is anxiously waiting to unveil our miracle. 

At Mass, we say the Gloria.  Tonight the new translation was exactly what I have been praying:
"We praise you,
We bless you,
We adore you
We glorify you
We give you thanks for your great glory
Lord God, Heavenly King
O, God, Almighty Father."
This uphill climb has been all but easy.  God has never left my side, and has probably been carrying me most of the way.  Being human, it is so easy to lose focus of what I believe and what I have been told.  In this, I am learning how important it is to train my mind to control my thoughts.  Every time something negative, or discouraging comes in, my immediately response must  be,
Lord Jesus, I trust in You and Your Glory!
We have had such an amazing day.  Vivian, Vivi, Vivs or V, all depending on who you ask, has had a wonderful day.  She has been awake and alert with only 1 dose of pain meds.  Days like today are the moments Rod and I talk about...the little victories.  Our life with Vivian will always be a road paved brick by brick--a beautiful path, that I know will lead us and those who love her straight to Christ.
Our prayers continue to be specific:
  1. Strengthened heart.  We need Vivian's heart to pump and function like it never has yet.  We believe that God has already started this happening.  Our healer friend has said that the heart is fine...is strong.  Extra prayers can't hurt :)
  2. The intestines and lymphatic system to straighted out as they need to inside of Vivian's gut so they function the way the are intended to from the beginning of time--perfectly!
Lord Jesus, I thank you, I praise you, I love you and I know you are here with us.  Lord, I am so grateful for the glory you have chosen our family to share with the world.  In the moments that it is hard to accept your will and follow willingly your way, I say "I trust in you!"  Lord, I believe, i believe even now you are capable of this amazing miracle that is going to be such a great blessing not just to our family, but to the world.  
Mary, wrap Vivian in your arms...continue to love her and encourage her as only you as our mother can.  Receive our prayers for Vivi's strengthened heart and sorted intestines and lymphatic system and place it at your Son's feet on the cross.  We knoe Mary he can never say no to you...we believe that He isn't going to say 'no' now!  Continue to fill my heart with great faith, especially in the moments I feel so weak...give me the strength and the grace you had as you embraced the unknown with your Son, Jesus.
Lord God, we thank you, we praise you, we love you...Amen

Saturday, September 15, 2012

September 15, Day 53

 Today has been a beautiful day.  I felt Mary very present as we remember in a special way Our Lady of Sorrows.  I have felt so close to this image of Our Lady throughout this journey, and subconciously my whole life.  My devotion today read:
"There at the cross, even as sorrow, grief and bitterness washed over her,
Mary trusted God.  She believed He would bring good out of the tragic
situation.  And He did!"
I can't help but add, "And He is and He will!"  I must continue to claim the victory Christ is going to show us in Vivian.  It is so comforting to know that as I go through this, Mary is right next to me understanding each moment, each emotion from the beginning of our story.
We had a very special visitor today--a healer.  A very humble man, whose vocation is to pray especially for children to heal.  He came and prayed over Vivian and assured us he knew she was going to be healed.  There are a few things about this meeting that I want to pass on so we can continue to be specific about how we are praying for our Baby Girl.
  1. We need to be specific.  We are continuing to pray for Vivian's heart to be strong, but we need to pray that her intestines function correctly and fluidly.
  2. We need to PRAISE Jesus in advance for the miracle He is showing us.  Claim the miracle--it is happening.
  3. We need to encourage everyone we know, everyone we come in contact with to pray for these intentions.  We don't know which prayer, or whose prayer will tip the scale.  It is time to up the anty, and to storm heaven like we haven't yet for Vivian!
Viv had an ok day.  She started to puke a few times, which is puzzling because it is not feeds, its mucus.  We aren't sure where this gunk is coming from or what is triggering it.  We had a few minutes with her wide awake which are always our favorite moments.  Her breathign tube has been placed now in her nose--it is so great!  I feel like we can see her face.  I am waiting to see her beautiful smile :)

Friday, September 14, 2012

Day 52 Part 2

We didn't quite receive the news we expected fro our meeting with the doctors today.  I could kinda tell, as the doctors kept giving me sadden looks when planning our time to talk today.  We heard answers from the GI perspective yesterday...slightly out of context without thinking about the heart.  Basically, we are not eligible for a heart transplant because of the anatomy in her belly.  A transplant would set her up for failure because of the loss of antibodies into her swelling in her belly.  If her belly issues continue, she could be able to have a surgical procedure, but not until she is bigger...years from now.  Therefore, our option is that her heart is strong and works.  The doctors seem to be a bit skeptical of how the heart seems to be functioning better, and attribute that to the fact that she is on the ventalator and receiving a higher dose of medicine to help with the leak in her heart.  Honestly, I believe her heart is better because God is at work. She has had an echo every week and none of them have shown any progress, but the cardiac cath has.  Our only option is that her heart is in fact stronger.  That she will be able to function off the ventaltor.  We believe even now Lord, even now, You have the ability to create a beautiful miracle.  The doctors want us to focus on getting her home...and of course we do too.  I told them about the dreams from the children...I do believe we will be walking out of this hospital with Sweet Vivian in our arms.  Continue to pray unceasing--this story is a great example of my new attitude as I pray for this miracle.  Thank you Lord in advance!

Showers of Faith

by Fr. Jack McArdle with Aneel Aranha
"Truly I tell you, if you have faith the size of a mustard seed, you will say to this mountain, 'Move from here to there,' and it will move; and nothing will be impossible for you." (Matthew 17:20)

 There was a disastrous drought in one of the southern states of the U.S. some years ago, and much of the crops were lost. The state was declared a disaster area, and, while the government was coming to the help of the farmers, all churches began to pray for the rains to come. One night a mother was putting her little girl to bed. She was saying her night prayers. The mother suggested that she pray for rain, but she refused. This puzzled her mother, so she tried several different ways of broaching the subject, but each attempt was firmly turned down. The mother couldn't figure out why she was so insistent on refusing to pray for rain, so she came right out and asked her. "Mammy, I have two dolls on a bench in the back-garden, and if you go out and take them in, I'll pray for rain." If she prayed for rain, she expected it to rain!
Jesus repeatedly said through the gospels: "According to your faith, it will be done." How strong is your faith in Jesus?

September 14, Day 52

As a person, my goal is to bring others to Christ, and to get to Heaven. As a mom, my goal is to love Vivi, and help her get to heaven.  Our whole life is not about this earth, put "planning" so to speak for the next, the life we will live eternally.

Today's Gospel contains the infamous John 3:16, "For God so loved the world that He gave His only Son that everyone who believes in Him might not perish, but have eternal life".  I couldn't help but think about Vivian.  Like Abraham and Isaac climbing the mountain, there have been many moments on this journey that I have felt like in giving my child fully to God, that I would lose her on this earth.  It never fails...when I get so upset thinking about what I might lose, someone shares with me what they have gained by this journey with Vivian.  In the moments where the rubber hits the road, it comes to a point that I have had to sincerely say to myself, 'do I really believe what I say--My goal is to get her to heaven no matter what that means?'  This Gospel today reaffirmed for me the committment I have not just for myself, but most especially in these days for Vivian.  Our goal is to bring others to Christ, others closer to Heaven, no matter the cost.

Thursday, September 13, 2012

September 13, Day 51

"To receive the grace of God, you must go the desert and stay awhile." 
                                                                                                             --Bl. Charles de Foucauld
Viv's roadtrip to the OR today is one I still have been secretly dredding.  There are many reasons you don't want your child to go to the OR.  She's going to have a scar.  She will be under anestheisa.  She is going to cut open for crying out loud.  When you have to sign consent forms for each step of a procedure, you know there are definite risks involved.  This one however, I saw as our last chance to really define what is going on inside our girl.  Rod and I opted for the surgical procedure because of the severity of what would happen if her SMV is not present.  And if it was present, what were then our options to help Vivi?  Do we transplant her liver?  Does a shunt need to be placed in her gut to redirect the flow?  Will we need a heart and liver transplant?  And a shunt?  You know how imaginations are.  I think through this whole process I have understood just enough at every moment to realize the best and worst case scenario.
After accompaning her through the hall to the final destination of the OR, Rod and I went to see Jesus.  Ironically (ok we know nothing along this journey has been a coincidence or ironic) the Psalm for today's Mass was Psalm 139.  This psalm, if you remember, has been so close to me since July 24. 
 For you formed my inward parts;
  you knitted me together in my mother's womb.
 I praise you, for I am fearfully and wonderfully made.
 Wonderful are your works;
  my soul knows it very well.
(Psalm 139:13-14 ESV)
My unsettleness, nervousness, fear--all of it gone.  We are asking for a miracle--God is listening...my faith is fully in that.  Heck, I told one of the doctors last night that a miracle was our option.  Although he looked at me a little crazy, I know he was ok with it :)  Sitting in front of the tabernacle, Rod and I prayed the Rosary.  I felt the Luminous mysteries were so perfect for this day--each one is a miracle.  At Christ's baptism, a dove came down from the sky sharing with everyone there, "this is my beloved Son, with whom I am well pleased".  The Wedding at Cana, water to wine, the proclaimation of the Kingdom, people BELIEVED and were saved, the Transfiguration of Christ and the Institution of the Eucharist....seriously?  Seriously.  I prayed throughout that Mary would continue to give Christ our desire, faith, hope and gratitude for a miracle.  He doesn't say 'no' to her :)  While we prayed the fifth and final mystery, I closed my eyes and saw something so beautiful--Vivian's Godparents, Blessed Mother Teresa and  Blessed John Paul 2, came in the Chapel and joined us.  Mama T, as I lovingly call Mother Teresa knelt next to Rod, and JP2 knelt next to me.  Ahead of us in front of the tabernacle was Mary, and from her hands spilled rays of light.  I knew at that moment something was happening.  Glancing at my phone, 10:57.  Moments like this, I wish I were an artist.  This was definitely a portrait I would LOVE to have hanging in our home.  We finished, and started upstairs to the surgical waiting room.  It was a little past 11.  Our messge from the doctor at the front desk was, "things got started at 10:57".  God is here.  With great hope in my heart, I knew we were in the midst of a miracle.
A few hours later, we got the call Viv was on her way back.  The doctor (whose name by the way is Maria...) called me and began explaining the procedure, what she found, and what her thoughts were.  There was a 2 part question I was needing the answer for--does she have the SMV?  is her gut flowing?  Are you ready-- YES and YES!!!! I couldn't but could believe it.  Thank you Jesus.  We praise you Jesus...even now Lord, even now!  There are obstacles.  Her liver is a bit of a mess, her intestine is hypertensive (too narrow) but she believes these obstacles can be handled medically, not surgically.  She also told us Dr. Heirsh, who performed the cardiac cath yesterday, was yelling to ehr through the hall this morning, "it's not the heart! Her heart is fine! You have to find what it is".  Although Viv's insides aren't perfect--we can deal with this.  We can pray her through this journey...the miracle is at hand, it is beginning. 
One of the cardiac doctors came in to speak with us today.  He assured us the doctors will be pow-wowing tomorrow and will get with us tomorrow at some point.  He also said there are rumors that Viv will be taken off the transplant list, because her heart has improved and her a new liver won't necessarily solve any issues by itself.  His idea of the plan is we begin feeds again, and extubate her over the weekend or early next week.  These are all hypotheses, before the gang gets together, but how exciting!  My heart feels like it is going to explode I am so relieved.  We can work with all this...we can pray Vivi through this...God's Will is this miracle.  Our job is no where near over--we must keep praying, keep the faith, and believe with great hope that even now Lord, you are in control and you have the mighty power to heal Vivian.

Day 50, Part 2

I can't believe I forgot this! Viv started fussin' and I was done with Part 1 :)

In the morning yesterday (Sept. 12), I'm not sure if I was dreaming or if I was awake, but I had this image come to mind.  I was holding Vivian, and we were walking down this path that was  cloudy and dark.  Wrapped around us was a rosary, the wooden beaded ones from Bethlehem or Jerusalem.
My mom called me a few hours later to say it was the Feast of the Holy Name of Mary. What a beautiful sign on such a special day that we are surrounded with her love.

September 12, Day 50

I can't believe today is day 50!  50 is a number celebrated throughout our life...I feel like I should be having a some sort of party or something :)

We have been going a lot of 'sit around and wait' today.  Viv was scheduled to go to the cath lab at 9.  Then she was second case.  Then it was 'oh, we'll come get her around 2 or 3' which in reality meant the doctors came up at 6.

While I sat around and waited today,  I received some beautiful emails which filled me with such hope, and reaffirmed that many miracles are happening as we await with great joy, hope and peace the BIG miracle.  As I reflect on my day, I have learned a great lesson.  Hope makes things better.  It is so exhausting walking through my days worrying about the 'what coulds' and 'what ifs' of a future that isn't here.  Hope makes life easier, more exciting...more liveable.  I notice a difference for Viv when Mommy is in a better space.  She is calmer and happier; isn't that the most important?  I never read what I write.  I type away, when I feel finish, I hit the  'publish' button and thats that.  I had an opportunity to reread a few of my posts yesterday and everything from March 8 and beyond came rushing back.  The emotions, the choices, the 'barrel through it' with faith attitude we started this journey with, and I thought I need to get back in that groove of what St. Paul tells us--to "boast in the HOPE of the Glory of God" because, oh boy, its coming in a BIG way!

"I am so glad that Rod has had the inspiration to change their prayer, of asking God for healing for Vivian and then accepting God's will, to asking God for a miracle and allowing Vivian to live. I  know that God asks us to pray for miracles! He always wants us to ask for the 'impossible', we have to pray with confidence that He will hear our prayer! I offered up Mass this morning for Vivian and I truly felt the Holy Spirit was saying pray for the miracle. God's will is the miracle! The physicians, I know are constantly given hope in seeing/knowing how much little Vivian is loved. Also, in the past they have seen love (even if they don't admit it sometimes) heal even the gravest of circumstances."
This is from an email that was forwarded to me from my mom.  Coming from a very prayerful woman, I know that this is a beautiful testament of the glory to come.
I also received a forwarded email from another Holy Family whose 9 year old son had a dream that Vivian was 25 years old and a nun.  After reading that email through teary eyes, I get another from my sister to say her friend had a dream she met Jesus and He told her Vivi was going to be ok.  As a dreamer myself, I believe in the power of a dream.  God has used dreams since the beginning of time to share His plan with His people.  I also believe God speaks in a special way to children.  Both of these I know are prophetic.
Once Vivi got to the cath lab, she was done in record time.  The pressures in her heart looked good, real good, and her leaky valve is leaking less than before.  Let the miracle begin! 

Tuesday, September 11, 2012

September 11...Day 49

Happy 7 week Birthday Vivian!  You are such a strong, beautiful girl :)

John 14:13 says, "And I will do whatever you ask in my name, so that the Son may bring glory to the Father."  It never fails--I am about ready to fall asleep and Rod wants to "talk".  Not just shoot the breeze about our days, but really have a sit-down-my-heart-and-head need to function talk.  Last night was no different.  He told me he had been feeling that our prayer for Vivian needed to change.  We have been praying for months that God would perform a miracle, and we believe He has, but we trust His will.  Rod told me he felt that was a cop out.  That part of asking for a miracle is opening our hearts to the vulnerabity that we are in God's will, but this is what we are asking, let me correct that, begging for.  What is amazing is that since we have been in the hospital, almost every Sunday we have heard a Gospel passage about healing-parent's asking Christ to heal their child, people who believe that only a touch of Christ would heal them--why not a healing come from millions of prayer from around the world for one little girl?

I believe that God has answered my prayer by allowing me to marry the man He specifically created for me.  In moments like that moment, any doubt I have ever collected is washed away.  He is such a strong and faith-filled man...God totally knew what He was thinking when He appointed Rod as the head of our family.  Needless to say, upon this conviction, I was filled with a new hope and desire to pray as he felt called to pray.  I asked him if we would want to compose a prayer to share so we can all pray the same prayer, so we are united in word and intention.  This is what we came up with:

Lord Jesus, You are the ultimate Healer.  We know you are all powerful, all mighty, and all loving.  All the things we ask of You, You take for us to Your Father's hands and we know He holds all those things to His heart.  Lord, we believe in Your ability to even now share with us Your Glory through Vivian and giving us a miracle of healing--the big miracle we have been waiting for.  Lord, we thank you and we praise you in advance for giving us this opportunity to worship You. Amen

This morning we were expecting a formal meeting with the doctors about the options we had laid out for Vivian.  Honestly, I didn't sleep well last night and I know it wasn't only because Rod and I were sharing the half-a-person-more-than-a-twin-bed pull out in our room.  My heart was racing in anticipation of what I was going to hear about my baby.  I woke up, and the image in my head was nothing I thought.  One doctor came in and simply said, "we just pow-wowed about Vivs (the doctor's nickname for Vivi) and we want to gather up more facts before we all get together."  So we begin a week of more tests and prcoedures to crack this case. 

I believe in the doctor's voice was a hint of hope that there was an option for Vivian that would be successful.  One of my dad's patients said, "Jesus is inspiring the doctors".  I believe that.  I believe Christ is working in each of them. prepping them for the miracle that we will be experiencing for Viv.  I walked through the hall today and ran into a couple of the doctors.  We began talking, and one said to me, "I am happy we are coming up with some good options for Vivian".  I looked at him and was able to respond with the patient's thought in mind, "You don't realize how many people are praying for you...Jesus is working in all of you."  It was awesome actually--both said thanks, but one looked at me and added, "that means a lot."  Oh what this child is doing to me, and to many others.

Tomorrow we are scheduled for a cardiac cath.  This will be Viv's second time down there.  The doctors will be measuring the squeeze of her heart.  Thursday or Friday Viv will be having a small surgical procedure where the doctors will make a small incision on her belly and biopsy her liver and shoot some dye through her veins to calculate pressure and see the route it takes. As I am learning, one day at a time and today was another great blessing :)

Monday, September 10, 2012

September 10, Day 48

Viv and I began the morning early, but together.  I think this morning was the first morning since we have been here (7 weeks tomorrow) that I have really felt like a "normal" mom.  We got a bath, and after I was finished, Vivi puked, so we tried again.  After getting her all bathed and dressed today, she decided it was nap time and mommy's shower time.  When I got back to our room, my mom was here and the visitors came one after another.  Throughout the entire day, Viv was a happy baby.  Her eyes were wide open, she was enjoying my rendition of "The Phantom of the Opera", and being loved by all the visitors we unexpectedly had today. 

My goal for this day was to truly love every moment.  It's so funny how the time so quickly passes when I just want it to stand still and soak into my soul.  Despite the tape mustache on my baby, I know she was smiling with all the love that was surrounding her.  One of the great things Vivi is teaching me is that we don't know what tomorrow will bring.  This moment is all I have and no matter what circumstance I am in, I don't know what the future holds.  I think we all 'know' this, but is it a conviction that we have to love the most we can in every minute, to squeeze the joy out of each moment, to praise God for every second--REGARDLESS of what the next moment has in store.

Rod and I wanted to go to a healing service Friday night, but at the last minute our plans changed.  I had wanted to go for a long time because of the holiness of the man who was conducting it.  His name is Carmelo Cortez, a simple man from the Philippines who has extraordinary grace.  Along with healing many, he gives each person who comes to him asking prayers at these services a rose petal.  Many people who receive these rose petals, in time receive a detailed etching of a religious picture n the petal.  It is quite an amazing gift God has given this man.  Rod had suggested I call the Holy Spirit Center where the service was to see if Carmelo would come to the hospital to pray over Vivi.  I did, and never heard a response.  Quite honestly, as the weekend went on, I completely forgot about this call.  This morning while I was bathing Vivi, I received a phone call from a woman with broken English.  Without any indication of why she wanted to visit me at the hospital, I knew she was Carmelo's host.  About 10:30 this morning, it happened in a whirlwind--a man stepped up to my door, put on a mask and walked in.  In very limited English, he said, "I am Carmelo, let us pray".  His presence demanded reverence as he lead my mom and I in an Our Father, Hail Mary and Glory Be.  He then placed his hands on Viv, christened her with Rose Oil and left.  Literally I was in a vortex of prayer that lasted maybe 1 minute, but it was powerful and very special.  It blessed my heart that this man would take time before he left our city to visit my baby.  Vivian is such a special soul.  I am reminded everyday how blessed I am to be chosen to be her mother.

Tonight is the first night this Dunlap Family has slept in the same room since we have welcomed Viv into this world.  The doctors have decided to meet with us first thing tomorrow morning to discuss our options for Vivian.  Rod didn't get a sleep room, so our charge nurse has agreed to allow us to snuggle up together on the plastic twin pull out in our room.  Although it isn't the exact way I thought we would be doing this, I am so happy we are all together.  Please continue to pray that we are surrounded by great grace tomorrow.  Pray that the doctors are guided soley by the Holy Spirit and that we know that God is with us, and will continue to guide us and get us through whatever our next steps are.
 Vivi post bath this morning

Grammie Jan and her best girlfriend

 Loving my girl! :)
 Surpise Guest!  Auntie Sue from Green Bay
Mommy napping with my baby

My pretty Baby Girl

Sunday, September 9, 2012

September 9...Day 47

I am ending this day with greater hope than I began with.  There isn't a moment that goes by that I don't think about the fork in the road that my family could be facing this week.  But these are the moments I have, we have as a family.  Through my struggling moments today, Christ gave me a light that I have to hold very close to my heart.  While Christ was in the desert for 40 days, Satan kept tempting Him to fall and give in to the pain He knew was to come.  I felt like Christ reminded me that I am in the desert.  Satan knows through this experience he hasn't been able to come between Rod adn I, he hasn't been able to get Vivi, and up to this point, he hasn't been able to get me.  Why would he not use this fork to get me?  This thought brings my heart so much hope.  When I break it down, all emotions aside, we really are in a win win situation.  The doctors figure out a solution to Viv's unique anatomy and she is here with us.  The doctors don't figure out a solution to Viv's unique anatomy, and she is with Jesus and our family has a saint in heaven.  Although both options have definite joys and heart- breaks, Christ is with us in both.  God promised me that all of this was going to happen for His Glory, perhaps the outcome is not what my human mind can understand.  This doesn't mean that my emotions, good and bad aren't valid, real, or I should be ashamed for having them.  Laughter comes and goes, tears come and go, our moments together may come and go.  The one thing that will always remain is my love for my baby and the love Christ has for me.

Viv is at full feeds.  This is good because she is taking them.  Her belly is swelling up again and the jury is out on her comfort level.  She has been puking quite a bit today, but it is mucusy, so none of the doctors are concerned about that.  We have had a few periods of her being wide awake today--that is a huge blessing...I want those moments to be the ones imprinted on my heart forever.  This week is a very important week for our family.  We are so comforted knowing that the prayers are coming in on overdrive this week.  We believe Christ can at any moment provide us with "the Miracle"--but we can't overlook all the miracles that have happened along the way.

Saturday, September 8, 2012

September 8...Day 46

I have left out an important detail of Vivian's story.  We were informed shortly after Viv's birth that she ahs Turner's Syndrome.  Turner's Syndrome happens only in girls, for it is a lack of one of the 'X' chromosomes.  Turner's can have many consequences that are on a broad spectrum.  Vivi's heart, liver, and now intestinal obstacles are all consequences of Turner's.  What we thought was HLHS, is actually Turner's.  Turner's is equally as rare as HLHS, as 1 in about 2,000 live female births are effected.

It has been an emotionally devastating few days for this mommy.  It is very hard for me to find hope in my day to day, but I am committed to continue to live moment by moment loving Viv with me here.  Rod is doing freakishly well with our new reality, he is definitely holding me up and keeping me afloat.  I had to flat out ask him today if he realized if the doctors conclude this week that they can't do anything to recreate Vivi's SMV she will die.  He replied very simply, "Yes.  But this is nothing different than any other obstacle she has had.  We must have hope that a miracle can still happen". 

Crying to Rod today, I realize my hope and fear could be the same.  My hope is for her to be normal.  To be able to be held like a baby without tubes and lines.  I don't want her to suffer anymore.  I don't want to watch her ride this roller coaster if she can't get off it.  My greatest fear, if that she dies.  That I have to leave the hospital without my baby.  That I will go home to a stroller set up in the laundry room and a high chair set up in the kitchen.  To a  room set up especially for her, but she will never be in it.

I believe that God is here, that He has never left, and that He never will.  It is just so painful to be walking this road.  Still now, I believe if God wants to perform a miracle, He can and He will.  I also believe if He wants Vivi back with Him, He won't leave me, and I will have a saint in Heaven. 

Vivi seems to be tolerating her feeds today, which is a blessing.  She has thrown up a few times, but it has been mucusy, so we aren't thinking it is related to the feeds.  We got back to the hospital today and she was wide eyed and bushy tailed--a huge blessing is that she as been so happy,not needing any medicine.  We are with Viv, not the medicated Viv.  Keep up the prayers, especially this defining week.

Thursday, September 6, 2012

September 6...Day 44

We received the results from the procedure yesterday officially.  Viv's anatomy is nothing that the doctors have ever seen before.  Her SMV is absent.  This could be the culprit for the fluid in her belly.  A heart transplant is not going to solve the problem if the SMV is the problem.  We started feeds again today in hopes that Viv's belly accepts the food.  If this happens, we will be able to continue as planned.  If not, we will have another invasive procedure done early next week to better understand Viv's insides and see if the surgeons would be able to re-route her "plumbing".  That would be another surgery that would Viv would have to recover from, then be reassessed to get back to the top of the transplant list.

Needless to say, we need prayers.  We need prayers that we are able to accept God's will with great grace while enjoying each day to the fullest.  I am empty tonight...hopefully I will have more tomorrow.

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!

Tuesday, September 4, 2012

September 4, Part 2

Wow has today been a long one.  I feel equally exhausted as the day we found out about Vivian's heart.  Emotions are a powerful thing. I found myself asking God today to increase my faith...to truly believe that His will is perfect because right now it doesn't feel so much like it.  Again I feel like I am holding my breath for tomorrow.  The procedure will be at 9 (in the hospital that means between 8:30 and 10:30) and we will immediately know the results.  Once again, immediately means 2-5 hours after Vivian goes back.  Things become very relative living in the hospital.  I never thought in a bizillion years that I would be praying for heart failure, but that is our best case scenario.  So please, please pray that heart failure is what we are facing here.  That would mean we are continuing on the road we are currently on.

My mom came to be with me today and shared with me something amazing: tomorrow is Mother Teresa's feast day.  How bizarre is that?  Ok, we all know at this point in the story that nothing happens on accident.  Mother Teresa has been praying for Vivi since March 8, we have called her Viv's Godmother, and I know she will be with our Girl in a special way tomorrow.  I believe tomorrow there will be a miracle, whatever the result of the test is, and peace will be running through our family.

I received an email with this quote from St. Sebastian Valfre , "When it is all over you will not regret having suffered; rather you will regret having suffered so little, and suffered that little so badly." I hate what I am going through.  I hate that I feel like my heart is being stabbed everytime something happens with Viv.  My whole life I have run from suffering and this cross I can't run from--not now, not ever regardless of the outcome.  I pray that although my heart hurts daily-- sometimes for moments, sometimes it doesn't stop--that I can offer this suffering to Christ as a gift for His suffering for me.

September 4

I woke up today to a team of heart failure doctors in our room saying they are very concerned about Vivi's belly and how large it has become. They are planning on doing a procedure today or tomorrow that will distinguish a.)what the fluid in her belly is,b.) where it has come from and c.)if it will effect her having a transplant. This has the potential to be very serious if it's not a consequence of heart failure, and put a transplant in jeopardy. As crazy as it sounds, we want heart failure as the culprit.

This is not the way you want to wake up in the morning.  My heart is aching and my head is spinning.  I try to tell myself that when I wake up and the first thing I do is cry, the day has to get better!  I just can't understand why we are riding this roller coaster.  I know God is here, but sometimes it's hard to then wonder why these hiccups are happening.  My mantra for the day is 'there is no reason to worry until I have evidence to worry.' We'll see how that one goes.

Monday, September 3, 2012

September 3

This day has been a long short day...try to wrap your brain around that one :)  Vivi is having a hard time living in her skin.  I can't say I blame her, and will take full credit of the long fuse she has had.  In that aspect, I feel like Viv and I share DNA.  It is interesting how we both have gotten to our witt's end these past few days and how I realize I have to now choose to be here in this time and space, and she, well has every right to be having meltdowns hourly.

While Rod and I were speaking with the doctors today, my reaction is a numbness.  I am at a place where I recognize a.)  I have no control and b.) God knows.  I have human emotions of not wanting my baby to suffer any longer.  I want her to be able to be held whenever, I want her to be able to feed, I want her to move and not worry about why she's moving--is she in pain, does she need suctioned?  is she going to cry?  or is she just being normal? I want her to be able to cry and throw little tantrums and not count the seconds before we need to give her some drug to calm down.  But under all of that, I know...I know in a way that surpasses all human understanding and explainations that Vivi is going to be ok.  This time too shall pass, and we will look back on these days and praise God for the goodness He has done in us, in others and for Viv.  I guess that within itself is a supreme gift of great grace.

After tests this morning, her liver billirubin levels are a bit high...the cardiac docs aren't sure as to why, so I will be speaking with the liver docs tomorrow in more depth about what this means.  Our spectulation is that it is a consequence of the dosage of the nutrition she is receiveing from the TPN and lipids.  To this, I pray, ask for prayers, smirk and shrug my shoulders.  God knows the directions-- I just have to agree to follow.

Sept 2

Day 40.  Christ was in the desert for 40 days before he began his public ministry.  Perhaps these past 40 days have been our desert experience.  We must empty ourselves to allow room for God to fill us up.  It's time to dig a little deeper as my human tank is on 'E'.  Now I am only relying on my tank to be filled only by God's grace. 

Friday night I has an "A-HA!" moment.  Four years ago while I was doing ministry work in Atlanta, I believe Christ was giving me a foreshadowing of what I am going through one day while I was praying.  One moring, I had this image: I was standing in a stadium full of people.  Christ was standing to my right, and without a word reached into my chest and pulled out my heart.  As he was doing this, I yelled "Ow! That hurts!" The pain was not a 'oh, I skinned my knee hurt' I remember to this day it was a sorrow that shivered throughout my body making my feet heavy.  Taking my heart, Christ raised it, blessed it, and began to break it, passing it to the people.  Each person took a piece and kept passing it to the next, and the next and so forth.  Each tear I could feel and I looked at Christ asking, "why are you taking my heart?  Why are you doing this to me?"  These questions weren't ones that were spouted in anger, moreso in agony of watching my heart be distributed among these people.  Finally after my heart had made it all throughout the stadium, the left overs sat at my feet in 4 baskets.  Christ looked at me and simply said, "I promised you would always be taken care of."

I have thought about this moment with Christ many times in the past 4 or so years.  I don't know what happened Friday to make me think about this at dinner, but I knew this vision is about Viv.  Vivi is my heart--she has been ripped out of me and throughout her short life, she is sharing love with so many people.  I am "being taken care of" from so many people's generosity, and the graces from prayers stored up, and the ones that are being said right now.