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.

Monday, August 27, 2012

August 27

There are some days that no matter how old you become, all you want is to be with your mom.   For me, today was one of those days and luckily enough, Jan came to visit and I talked her into staying with me all day :) 

Although Vivi is holding steady, I can tell she has days like that as well.  Not actual "days" but perhaps "baby days".  She throws fits now and then (and who can blame her?) but sometimes I can't help but think that some of the reasoning for her fits is to let me know she needs me in some capacity.  It doesn't mean she calms down immediately (as she demonstrated a few days ago), but it's just having that comfort of a being close to the only other being in the world who can understand you to the core of your being because she has been next to you since the beginning of you.  There is a level of comfort in that closeness that is inexpressible...it just is.

It makes me think about our Mother Mary.  She is always there for each of us to comfort us, to laugh with us, to cry with us.  She sees the most brilliant days we live fully, and the darkest days we try so hard to wish away. In both extremes Mary loves us, encourages us, and remains next to us.  Her love and grace has been such an unbelievable comfort and strength for me along this journey with Vivian.  I pray that I am able to be a bit of her for Vivian, but most importantly always remind Vivi of the great presence Mary has had in every moment of her existence.

Saturday, August 25, 2012

August 25

Viv is status quo as we get closer to ending this day.  Her belly is shrinking slightly, but not enough to begin feeds tonight as we had hoped.  Yes, we are still praying for toots and poops until she can feed again.

Rod and I were able to sneak away for the night last night.  We had a yummy dinner and watched the Reds be dominated by the Cardinals.  As usual, we hurry back to the hospital after an uninterrupted night's sleep.  I was told once that a child is a mother's heart--it puts a whole new meaning to "wearing your heart on your sleeve".  If  home is where your heart is, then room 16 in the B building of Cincinnati's Children's Hospital has become my home.

Friday, August 24, 2012

August 24, 1 month Birthday!!

I can't believe that a month ago today my world was changed forever for the better.  Vivian is the greatest gift, and I can't believe how I can love her more today than I did a month ago.  It amazes me how time gives our heart the chance to open more fully and love more deeply.  I am so blessed!

Along with the great joy that comes with celebrating my girl, there is also some sadness.  We had high hopes of preparing to go home soon, but that dream has taken a different direction.  It's hard because we all are feeling it, especially Vivi.  She is completely over this reality she is living. We were up together all through the night because the poor thing wouldn't stop crying.  I think her belly hurts, and she's hungry.  The worst feeling is not being able to do anything.  We got to a point where music wasn't helping, Mr. Lambie was pissing her off and rubbing her head was irritating.  My heart aches being so helpless and just watching her be unhappy! We did finally break down and give her a dose of morphine to calm her down.  I have to talk myself out of feeling like a failure because I have to rely on drugs to calm my baby down.  A month into life on this Earth shouldn't be like this.  My heart is an achy, breaky heart for her.  It's days like today when the cross is so heavy I have to remember I am not in this alone and that it's not in vain that I am living this.  God's glory is being shared with me everyday--talk about a 5 hour enery shot :)

Today's goal is to get through the day.  Tomorrow morning we will resume feeding and once we get a good grasp on that we will begin the breathing trials again.  One foot in front of the other....moment by moment....obstacle by obstacle....Viv can do this!  The good news is her belly is a little less bloated than yesterday and the gas inside has slightly decreased! She has been tootin' a TON! I know Jesus has been laughing about all the "toots and poops" prayers he has been receiving-- don't stop praying for it!

I am going to be so bold to give you a resolution for the day in Vivi's honor--I've come to terms with the fact that she is being raised with so much love in this village, which is so humbling being her mom.  If you have babies of any age--hug them extra tight today.  If you can't hug them, call them, text them, email them--let them know you love them in a special way.  Smile at the strangers you meet, take an extra minute to really listen to sometimes answer to "how are you today?" Share the love Viv is bringing to your heart in an extra special way as we celebrate her gracing our lives today.

 

Thursday, August 23, 2012

August 23

Our motto today has been "Toot and Poop!"  I am not joking.  Vivi's belly is bloated--she is full of air.  We didn't continue the breathing trials today because of this.  The alast few trials yesterday she couldn't even get half way through.  Her poor little heart can't work sufficiantly enough to spread blood throughout her whole body.  Therefore, since the intestines aren't at the top of the totem pole, the blood is not as focused to go all the way down to the intestines and digesting what is left there.  Digestion problems are common among heart failure kids for this reason.  Therefore, the doctors aren't too concerned, but we have discontinued her feeds and are waiting for her body to naturally pass this gas. So yes, we are praying that Vivi "toots and poops" to get it all out. 

Today was a very important day for Viv....mommy gave her her first pedicure :) 

 
 
She LOVED it! I was bummed that all I had with me was OPI's Holiday Glow...a little dark, but at least it sparkles!  She is still enjoying her big girl bed, and so is Mommy! 
 
 
I had an interesting "A-Ha" today.  A nurse was in our room changing one of Viv's lines.  We started talking and a common question is, 'is this your only child?' Obviously my answer is yes, and I always tag along 'I don't know how parents do this with other children! It would be so hard.'  The nurse brought up the common response from parents with children at home, 'they can't imagine going through this with their first.'  She also commented that many of first time parents, after going through this, are scared to have other children.  I thought about that for a few minutes...and I can't deny that I haven't thought about that. A song by Matt Maher,'Your Grace is Enough' (  http://www.youtube.com/watch?v=8wN-fspKg1Q)  The refrain filed through my mind as we were talking and I had to verbalize my stance...for her, or for me I don't know, it just came out.  I told her I love Vivian, just how she is.  This is my reality...there is no where else I would rather be than here.  If God blesses us with another baby, however that baby comes to us is perfect.  If we have another baby that needs the same care Vivi does, that baby is another gift and God's grace will keep us strong again.
 
I have thought about this throughout the night tonight.  God absolutely gives us more than we can handle.  In those moments, he showers us with such grace, that it strengthens us not in a way to step forward on our own, but to exhale and cling to Him to be our strength.  I find myself more and more on thsi journey speechless before Christ because I want what He wants.  I hope for what He hopes.  I believe in Him and in how He desides to share Himself with me, with Viv.

Wednesday, August 22, 2012

August 22

I wanted to give a quick update before we hit the hay tonight.  Vivi didn't do so hot on her breathing trials as the night went on last night.  She couldn't successfully complete the two hours.  That being said, we restarted 2 hour intervals of breathing trials today.  She had done well throughout the morning, but as we transitioned into the afternoon, she could only go 40 minutes without getting to tired.  When you are training for a marathon, you don't run crazy mileage everyday.  You have long runs once or twice a week, and you build up to them.  I believe that is what Vivi is doing, along with saying, "Excuse me, but remember who is in charge...yes, ME!"

My big concern throughout the day has been the quick growth of her girth....this girl has a belly!  We have dramatically cut back on her feeds (we were at 16 ml/hour and now are at 5ml/hour) and we are increasing by 1ml/hour per day.  After looking at her belly and realizing it had grown in a few hours, we have cut feeding completely for now and are supplementing her nutrition with TPN and lipids.  After X-ray, we know her little belly is full of gas.  Yet, you guessed it... am now asking for fart and poop prayers.  This poor thing, when she gets older she will be mortified.  We need to get that gas out of her system so she is less bloated and feeding more.

Our big news today--Viv was moved into a big girl bed.  A bittersweet moment for me, she is no longer small enough to fit in the isolet, but I now can lay next to her all day long if I want! Knowing I can be that close to her all day makes my heart so happy. A friend texted me tonight and said while she was in adoration, thought of Vivi in her big girl bed and thought of how our parents dote on us when we are sick.  She then thought God must be really snuggling close to Vivi, taking great care of her, especially now in her big girl bed.  I have decided I am obsessed with that image, and know in my heart it is so true!


I have been juggling a heavy heart and remaining positive.  I am realizing I had high hopes of leaving around this time.  We will be living at Children's for a month this Friday.  When Vivi was born, I assumed we would be leaving no later than the beginning of September.  After her surgery and the first week of kicking booty, my head was on that same time-line.  Here we are, going home a massive TBD.  I would be lying to you if I said I wasn't struggling with a breaking and inpatient heart.  I don't doubt God for one millisecond, but I can't help but sometimes look at Him and sigh, "really?"  What a lesson in patience, hope and immense faith.  God's timing is perfect, His plan in perfect...so it seems we are in the perfect place at the perfect time (at least I have to continue to remind myself of that!) Please keep the prayers coming.  They are going a long way these past few days :)

Tuesday, August 21, 2012

August 21

I have started using a book called Meditations for Mothers to begin my day.  Let me tell you, the past two days I have not been disappointed.  It has been meant for me!  Today the Gospel was taken from John, one all of you I am sure at one point have read or heard; the Wedding  Feast of Cana. 

I have read this passage many times, I have been to Cana, but today, a line hit me that has never hit me like it has.  When Mary says to the servants, "do whatever He tells you" she is revealing that she has complete faith in her Son as the Son of God.  That she believes, "what the Lord has revealed to you will be fulfilled".

I stopped for quite some time after I read that this morning and realized I must believe in Viv.  As the mom, I have the God-given power to empower, to encourage and to believe in the goodness and strength God has given to Vivian. 

We are working towards extubation round 3.  One of Rod's favorite things to say is, "what is the definition of insanity?  Doing the same thing over and over expecting different results".  I will admit, when the doctors told me the other day that they were hoping to extubate her again, I thought I was going to laugh and at the same time I was kinda pissed.  Haven't we learned anything from the past few weeks?  Viv can't be extubated.  So you are going to take out this tube, freak me out by having her struggle, then shoot another tube down her throat?  Um, not funny, not cool and definitely not sanitary.  I had given up on Viv before she even tried again.  I felt while I was reflecting on the Wedding Feast of Cana, that Christ was inviting me to be more like His mother.  To see the impossible and believe without 1 single doubt that it is infact possible.  Needless to say, the resolution I took from my prayer time this morning was to push aside the doubts I have built up and to place complete faith in God's ability to work through Viv.  Funny enough, the doctors have decided to give her trials increasing the hourly time they are expecting her to breathe on her own for the week.  As i have been saying and learning about my baby, her temperment is the same as her Daddy's.  Slow and staedy wins the race.  She doesn't like to have quick changes done to her routine.  I can respect that...I don't alwasy understand that mentality, but I can definitely love and advocate for it.  So I began pep talks.  "You can do it Vivi!"  "We need to get rid of that tube!  Not only will Mommy be able to get you out of bed easier, but your lungs will benefit too :)!" 

It still is so amazing to me how God meets us where we are when we are there.  My attitude has needed a bit of a pick me up, and today was just it.  I have always said I am best when I am the cheerleader--and this is the most intense and important match of my life.  Go Vivi go--I KNOW YOU CAN DO IT!

Monday, August 20, 2012

August 20

I am reminded today that I am living in God's Will for my life.  It's amazing how easy I can forget that, resent that, and want to escape that.  Reading Luke 1:26-38, the Annunciation, without much detail can be summed up in 2 snippets of verses, beginning and end.


Mary, do not be afraid!  You have won God's favor.....for nothing is impossible with God


I will be so bold to exchange Mary for Maria, and afraid for overwhelmed, annoyed, despondent, petrified and unstable.  These are all words I would use to describe my heart through this journey, especially in the past few days.  I think in all my life wanting to do God's will, I never fathomed that it would look like this, that I would feel like this and think in my head, "oh, this is all because you you have won God's favor"  Infact, I will admit that in the past few days, that is furthest away from what I have felt.  How can this life I am living right now mean I have won God's favor?  Besides being chosen to be a mom, this is in no way a situation to show someone, 'you are favored'.  Yet when I feel that, and I think that (which has been most of the day the past few days) the whole, 'for nothing is impossible with God' kicks in. 


If God is here, and I don't doubt that He is, then all these feelings I have, and the hurt, the fear, the pain--He can use it for good.  He is holding our family so close, and that closeness is why we have found favor with Him.  For some reason, God wants to be so close to us...and through suffering He always is.


Lord today my heart is heavy.  I feel weak--I can't do this on my own.  I know you are here.  I know you are victorious in this moment.  Lord I beg you for the grace to continue in this moment for it is your will for my life.  Allow me to love it and live it for Your glory.

Mary, please continue to be so close to me...walking this Calvary with me. Give me your motherly heart so I can make it through giving only love and grace to Vivian, to Rod and to everyone around me.  Help me to embrace my 'yes' with the grace and courage you embraced yours.



Sunday, August 19, 2012

August 19

Rod and I got to sleep last night at home together...11 hours of uninterrupted sleep is THE BEST THING EVER.  Sleep is something I have always taken for granted...not so much the case anymore, and I probably get more sleep at the hospital than I will once we get home.  At that point, though, I won't care because we will be home :)

Vivi is holding steady.  We are having issues with her feeding...she is puking a lot, which is a common problem with heart babies.  Tomorrow her feeding tube will be pushed down a little further in hopes that more of her feeds stay down.  Poor thing--it is awful to watch her.  I can't imagine what she is going through. 

It is a week since the worst night of my life.  Tonight has been  a bit difficcult because Viv is having these fits that can't be calmed without meds to calm her.  The poor thing--she has gas backed up in her belly, she has a tube down her throat, and is stuck in bed.  She can't be a typical newborn who cries, gets some lovin', a few burp pats and calms down.  This is all normal, the nurses keep telling us, but it doesn't make it easier.  My "mommy-mones" aren't loving it so much.  The past two days my general attitude has been 'I am SO over this'.  And yet, here I am.

I feel selfish.  I want all of this over--I want to be home, I want to hold Viv whenever I want, I want  her to not have all these tubes in her--and it's not just because I want her to be able to be a newborm the way she is supposed to be, but because I want our lives to move on.  At the beginning, it seemed we were by-passing the roller coaster, and the past week it seems quite the opposite.  We are first in line for the ride.  I have a constant mantra ringing in my brain :"God is here...God knows". 

Tomorrow I can only hope for the grace to continue to keep pushing through, and the love to share with girl moment by moment. 

Friday, August 17, 2012

August 17

I didn't post yesterday and I don't think you will blame me when I tell you why.  Better yet, I will show you--



11 am yesterday emotions flowed through my heart like I have never felt.  I truly understand the old adage,"absense makes the heart grow fonder".  Joy exploded from my soul and filled my body in a way I didn't know was possible.  Watching Vivi be lifted out of her plastic bed into my arms was something I will never forget.  I ached to hug Vivian, and craved it.  And this moment I had been anticipating it for days and FINALLY the time had come.  It was beautiful...I sobbed.  Holding her so close to my heart again, I literally believed my insides were going to explode out of me.  Viv just starred up at me, eyes wide open...what a special moment.  My heart, and I could see through her eyes, her heart, were both full with joy and peace being so close again.
 

And of course, Daddy got some snuggly time with his Baby Girl while watching the Reds game.


Yes, she changed her headband for when Daddy got home :)


I awoke this morning after a short nap (I was holding Vivi until 3 am...the nurses decided I needed a break to sleep) to the transplant nurse nudging my shoulder handing me an envelope.  Enclosed were the documents stating Vivian is officially on the UNOS transplant list.  She is listed in the 1A class which puts her at the top of the list.  Now, we begin the waiting game.  At any moment, any day we could receive the call, and our lives will be changed forever.  I believe there was some confusion based on my first post about having a heart transplant that it would be a dual heart/liver transplant.  At this time, we are tackling one obstacle, and that is her heart.  Viv's liver isn't showing us any signs of failure or malfunction.  Putting a new heart in her, could really cause no issue with the Abernathy Syndrome because her circulation would not be changed.  Time (God) will tell...we are committed to taking one step at a time.

Today was a big day for Viv.  Yes, I held her again all day, but something else....she wore clothes for the first time!  I received all these cute snap-up onesies that I brought with us anticipating that we would be prepping to come home by now.  Since she won't be wearing them after we leave the hospital because they are summer outfits, she will be wearing them now :)




Needless to say, if Vivi didn't attract attention any other day, she definitely did today.  Everyone wanted to stop and she her in her pretty outfit! 

Luckily, we are running steady today.  We have downsized the amount of wires and poles in our room, which is always encouraging.  Tonight we are focusing on continuing to share the love together as a family!




Wednesday, August 15, 2012

August 15, Assumption Prayer

"And blessed is she who believed that there would be a fulfillment of what was spoken to her by the Lord"  Luke 1:45

Lord Jesus you know my heart and you hold it so close to you right now.  I know you are here in the midst of this journey.  Lord Jesus I trust in you...I believe in your timing and your plan.  I know your love for me is nothing I will ever understand or fully grasp.  I praise you for all you have given me to grow closer to you.  Lord, Mary believed in your power to grow a child, your child inside of her.  She trusted in you, despite her scary circumstances, and you took care of her every need during her pregnancy and never left her.  Lord, she believed in your message to her and said "yes" without doubt in you.  Lord, I know what you have told me...I know what you have shown me....I know what you have given me.  Lord I ask that you continue to increase my faith everyday in you.  That I, like Mary, never doubt for a single second your Holy and Perfect Will.  Lord continue to infuse my heart with the grace to believe.  Believe in every step of this journey you are at my side, believe in every moment that you have given so much comfort to my heart, believe without ceasing that all your works are mighty and good.  I love you so much Lord.  Thank you for this day, for this experience to grow in love for you.  Amen.

Tuesday, August 14, 2012

August 14, St. Maximilian Kolbe

 "It's all right - questions, pain, stabbing anger can be poured out to the Infinite One....our wounded ragings will be lost in Him and we will be found. For we beat on His chest from within the circle of His arms."

I received this quote in a facebook message today.  I couldn't help but share it--how true every word is.  Nothing--no emotion, no experience, no heartache, NOTHING--is too big for God to want to comfort us. I am living this first hand.

Today is Tuesday, and although all of you in the outside world realize this, it makes me feel like a real person to state the day and date.  I feel like I am breathing normal again after Sunday night. It is truly amazing what time does for the soul.  Today we have made the decision to go forward with the transplant process.  Labs have been started to collect data of Vivian's blood cells and other biopsy's of her heart to find the perfect match.  We will hopefully begin the interview process with the social workers as well as the transplant team before the end of the week.  This is protocol for all transplant patients, to ensure that the family is willing to take on the responsibility of an organ transplant child.  Basically, they are making sure organs aren't being wasted. A great peace, which we know is God, is upon Rod and I with this decision.  We know God is taking us on this adventure for a reason--it is the most wild ride of our life and it is only beginning.  We have all the confidence that God is here with us, and most importantly with Vivi as each step taken.

My dad insisted on bringing up a gift for us last night--a prayer blanket from a wonderful group of parishioners from St. Maximillion Kolbe.  For my dad, this was very significant for him because of a story a patient came in to share with him during the day.  When the patient's daughter was born, the doctors weren't too optimistic about her survival.  Her dad went home and begged God to either take the baby back to heaven or heal her.  He felt the Lord tell him to take the cloth he had with him to the hospital and place it on his daughter.  He did, and as the baby was being wheeled into surgery, she began to show signs of healing.   I will not lie, Sunday night and early Monday morning, I begged Christ in the Tabernacle the same thing.  If you aren't going to heal Vivian, please Lord, take her back with you, end her suffering.  I whispered in Vivi's ears to follow Jesus if He came...and I feel awful admitting that as if I am God knowing what is best.  My parents, I found out, prayed the same.  That is why this story was so significant to my dad, especially upon receiving this blanket to give to us. 

Just before I received the blanket, I had received a devotional email I receive daily.  It always comes the night before, so I know in advance if it is a feast day, or a certain saint's day.  In the subject read the date as well as St. Maximilian Kolbe, priest and martyr.  As my dad was giving this gift to me, I felt it very noncoincidental that this was the eve of this saint's feast day.

For those of you who don't know the story of St. Maximilian\n Kolbe, he was a priest who was taken to a concentration camp in Germany.  He lived his time in the camp everyday wanting to bring some joy to the other prisoners, and always put others in front of himself, giving them his food, using what little energy he had to share the love of Christ with them, and eventually taking the place of a man so he would be spared and have a chance to live longer with his family.  Perhaps one of the most remarkable things about his story is Auschwitz, had the lowest number of deaths.  Many of the survivors attributed that to him--his love, his joy, kept people hoping for their freedom and most importantly, their life.

I find it remarkable that today on the feast of such a selfless martyr, we decide to move forward with finding Vivian a new heart.  Today, our prayer changes, and we ask you to join us in this.  Last night as we first began discussing this possibility, my heart became very heavy for the family who will be sharing their child with us.  It is the great circle of life, one must die, so another may live. My heart grieves for this family.  What grace and strength they will need to be surrounding them at this time.  This child, will be Vivian's St. Max, our family's St. Max.  I pray that with all the prayers we are storming heaven with, we can also direct them not just to this family who has filled our hearts with so much hope, but for all families who are allowing their loved ones to live on by giving new life to others through their organs.

I am overwhlemed by the ripple effect our story is having and how it is traveling so fast--thank God for virtual media :)  There is one thing I want to say--I so appreciate all the love and prayers we are receiving.  I am so appreciative of all the compassion from so many beautiful hearts.  I am beyond grateful for each person's offer to do ANYTHING (it is always in caps...so cute), which we are discussing how we can take each of you up on that!  But please, please, please, don't feel sorry.  Don't say sorry.  Just say you will pray.  Pray for us. Pray for Viv.  And as I said, pray ESPECAILLY for the family.  This is our journey...part of our path toward holiness.  This is crazy, but be happy,Christ is asking us to grow closer to Him through this.  Each of you is a bountiful blessing to our lives.  Thank you for being a part of our journey!


Eternal God, in whom mercy is endless and the treasury of compassion inexhaustible, look kindly upon us and increase Your mercy in us, that in difficult moments we might not despair nor become despondent, but with great confidence submit ourselves to Your Holy Will, which is Love and Mercy itself.

Monday, August 13, 2012

August 13

It is safe to say that I didn't learn everything I needed to know in kindergarden, but am instead learning everything from my 3 week old (tomorrow!) daughter.  Even down to simple things like really using soap EVERY time washing my hands, not just running them under hot water.  Vivian is forcing me everyday to stretch in my faith, my trust, and my hope in Christ. 

Last night was truly the first night I thought I was losing everything.  When every nurse on the floor was in our room, when the doctor was called in from dinner, and a table full of meds was wheeled in front of our room, I knew it was a moment to freak.  Although everyone was calm, I couldn't help but ssense the undercurrent of stress that was filling our room.  Vivi, after being extubated all day, went into distress in similar fashion to the last attempt to extubate last week.  This time, an EKG was done while she was at her peak, a rapid 200 beats/minute, when she should be 120-165, the graph showed she was having similar waves to people having a heart attack.  Luckily, we caught it fast enough, quickly reintubated her, and strapped in for an emotionally long night. When the doctor sat down to discuss with us what was happening, I couldn't help but verbalize the scariest thought I have ever had, "is she going to make it through the night?"  Obviously, he isn't God, but his response was hopeful that we had caught the problem early and she would be sedated and become stable again.  He was right, and we were blessed to have another day with Vivian here with us.  How quickly I forget that everyday we have, period, is a blessing. 

Today Vivi went through the ringer again as the doctors are stumped as to what is happening inside her body.  She had a procedure done that had a camera video her heart.  The doctors were hoping to find a mechanical problem, that could be fixed by another surgery.  Not to our surprise, that wasn't the case.  The Norwood surgery she went through is textbook perfect.  Looks beautiful.  It is her little heart, the muscle itself that isn't strong enough to sustain her being.  That being said, we spoke with the transplant doctor today.  This seems like Vivian's best option with this finding.  If you have been following my blog from the beginning, this is something we have prayed wouldn't happen, and we are here. 

It is amazing how God works--last night, my hope was gone.  I wept in the chapel until nothing else could come out.  Although immense peace was upon me, I couldn't get back to a hopeful place.  I was in and out of sleep, and began the day with doctors once again all outside our door, puzzled and apologetic for not having answers.  At 2 this afternoon Rod and I met with the transplant doctors.  We discussed this option, and the doctor said something that brought me so much peace, and a renewed Hope, I knew God was in the room with us.  My fear of a heart transplant is the fact that Viv's body could reject the heart.  Her body right now is revulting against the surgery she has already had.  Maybe this idea of a 3 part surgery isn't good for her.  The doctor continued to say, not that this will happen, that when a liver and heart transplant are done together, the lihe ver protects the heart and the probability of rejection lowers.  Immediately, I felt so hopeful!  Maybe this is why God wants her to have a heart transplant, so both her liver and heart will be new.  We don't even know 100% that transplant is the new route, but it is seeming to be.  We will know tomorrow after the doctors meet and evaluate all Viv's information.

I have been repeating a mantra in my head since last night: "I praise you Lord!  It is good to be here.  My hope is in you Lord!" I have had to remind myself of these truths.  I think all of you would know I am lying if I said this has been great.  It honestly, bare bones, totally sucks.  I hate to watch Vivian be poked, and intubated, extubated.  I hate how with each ding of the monitors I jump to check Vivi's stats.  I have a love/hate relationship with the fact that nurses come in and out every 5 seconds.  I hate that I can't do anything--I can't hold my baby, I can't feed her, I can't hear her cry, I can't even change her diaper since she is back on a catheter.  However the peace that transends all understanding and the great hope in the will of Christ calms me down, and brings back to my heart the positive thoughts and attitude to get me through each moment.  My nurse today has blessed my heart--she is a mom, and can understand my heart.  As I cried to her today about not being able to hold Viv, she came back when I woke up from a much needed nap with news that made me cry again.  She spoke with the doctors, and we are removing all the lines that prohibit me from holding her tonight and tomorrow morning so I can hold her tomorrow afternoon.  As she told me this, my heart exploded.  I cannot wait until I get to fully embrace her....not just stroke her head and rub her arm.  It's another one of those things we take for granted.  To be able to give my daughter a real hug....I get teary eyed thinking about it!

Like I said tomorrow I will have more news.  Please continue to pray for Vivian, that God's will for her is done.  Pray for the doctors to have great wisdom as they meet tomorrow.  Pray for our nurses that they continue to have the compassion and tenderness to work with us and Viv.  Pray for all the families that are on our floor.  There is so much suffering.  Please pray for Rod and I...that we have the grace to continue to be the best we can be for Viv and each other, and that we have the strength to continue through these next days.

I am attaching some links of songs that have been so great for me during these past few weeks.  In some of your comments, you have shared that Hope is something you struggle with.  Know, that I am praying for all of you as I struggle with hope too during this journey.  Maybe these songs will pop in your mind when you need some umph!

 http://www.youtube.com/watch?v=-RRZgr7wNDs

http://www.youtube.com/watch?v=Ub9ntcIvD0s

http://www.youtube.com/watch?v=z0LV_p3HQQI

Sunday, August 12, 2012

August 12

This begins the longest 24 hours of my entire life.  I don't know what God is trying to teach me, but right now if I could, I would drop out.  Vivi began today as the champ she has been.  We extubated her with great success.  She loved breathing on her own.  She was wide awake, loving sucking on Mr. Lambie again.  For me, it was so awesome to see her sweet face again without being all taped up.  She was looking at me with her angel eyes, and I was counting down the hours until I would be able to hold her.



Around 4pm, her heart rate began to creep back up.  Unable to get it to calm down after a couple hours, the doctors decided to re-intubate her.  She didn't have a fever for 24 hours, her numbers were all right were they should be...the only thing that could be the culprite was her leaky heart valve.  An echo and EKG were done, both pointing to the fact that her little heart is needing to work too hard for it to catch up with itself. 

After briefly speaking with the doctor, we have no definites, but no turn seems to be very optimistic.  If it is in fact her valve, the procedure to reopen her chest and fix the valve is very risky.  we will also be speaking with the transplant team...but that has from the beginning been bottom of the totem pole...very last/worst case scenario.

I don't know what to think... Rod and I went straight to the chapel and all I can do is raise my arms up to Christ and beg that He hear me.  Right now, this moment is the moment we need the miracle.  I believe that my hope is in Christ--it is not shaken by draught or storm and that if He wills it, HE has the power to heal her.  God told me at the beginning of this journey that this was all happening for His greater glory.  What is that?  I don't know.  Like I said, I would run in the other direction if I could.  I would love to escape this pain, the looks of grief from the doctors faces and the idle chatter from the nurses.  I would scoop up my baby in my arms and run to the life I had planned on living.  But that is not what God is asking from me..or Rod..or Viv.  All I can ask at this moment is to pray.  Pray unceasingly, like you have never prayed before.  Pray that the doctors have the Wisdom of Solomon, that Viv has the strength of an army of angels, and that Rod and I are given the grace to place all our trust and hope in the Lord through these next days.

Saturday, August 11, 2012

August 11

We still have no news about her echo done yesterday.  Once again, Vivi is not a priority, which is wonderful considering the chain of events that have happened this past week, but I would like to know what they are thinking about her heart...kinda important.

We are going for extubation round 2 today.  Once again, we are on hospital time...we have no idea when this will happen, but I am confident my girl is ready.  The poor thing today is so over all these people touching her and bothering her beauty rest.  Although it is incredibly sad for her, it is slightly comical the way she has such an attitude! There are some people that walk into the room and she begins to get agitated.  I can't help at these moments but giggle, while rushing to her side to calm her down.  It's a crazy thing this mom gig.

I move so quick from thing to thing that processing events has never been something that is done in a timely fashion.  It happens, but usually weeks after the fact.  Well, that has happened today!  I am in shock today that I actually have given birth!  It is breathtaking that this precious little being came out of my being.  I honestly can't believe I did it, that Viv is mine! I have always been a stomach sleeper, and that was one of the hardest parts of being pregnant was sleeping on my side and staying there.  Now, I am afraid to sleep on my belly because I am worried about hurting the baby that is no longer inside me.  Weird.  I thought about that for a few minutes this morning.  My body will never be the same.  There is something so sacred about housing a life inside of me....it's like a portal to heaven has opened and will always be a part of me.  I now understand on a deeper level the reasoning behind the Church's teaching on contraception.  It is sorrowful to my soul that all women (and men for that case) can't see the great beauty and grace that surrounds our bodies--that a life, a soul, a precious being from heaven, inhabits inside of me.  Why would I ever want to shut myself off to that amazing gift...to that amazing grace?  Oh the hurt...the deep pain Christ must feel at our human ignorance! The greatest gift of feeling so close to Heaven and so many people say "no thank you" to the gift.  Ouch.

Although we are riding quite a roller coaster....Vivi's fever has made a comeback so from the time I began this post until now, we have found out extubation is not happening today. We aren't sure if she has an infection, is fighting a virus or if she is reacting the way she is because of her leaky arotic valve (pray that this is not it!), I know this experience is day by day teaching me so much.  I have moments more often, but God's grace is so real in those moments.  The ebbs and tides are all apart of this ride He has us on.  My plan--let girlfriend rest again today.  I want the tubes that have been in her since her surgery almost 2 weeks ago (I can't believe how fast the time is going!) to get out, so we nix out potential ways for germies to get in.  Kick out this fever, and then extubate and continue our run forward.  We'll see how my plan coincides with hers and maybe the doctors :)

Friday, August 10, 2012

August 10, Pictures!

I don't have any real update at this point, and I am realizing I am becoming slightly numb to everything happening around me.  Unless there is some significant chain of events, I forget that Vivi has a wide fan base that needs updating!  She is doing really well today (huge sigh of relief) and we are awaiting the results of an echo taken this morning.  I will post again later to share our findings.  For now, I thought you would enjoy some pictures :)


                                                  Daddy and Vivi hitting the Rock

                                             
                                                              Just scoping things out


                                                I love this picture!  Holding Daddy's hand


                                                                  Love My Girl!

August 9

Maybe it's a lack of sleep, or post-pardom feelings, or my true emotions catching up to me, or perhaps a mix of all three, but waking up biting my lip trying to hold back tears is never a good thing.  It definitely doesn't help when a whole parade of doctors stop outside your door, and while looking at your child's monitor throw words around like "infection", "lung secretion" and "heart failure".

I have had my moments, but I have never had a moment like this before.  My body went limp as my heart dropped to my feet.  I have never doubted God, I have never doubted His plan, and I never will.  However, in this moment my sunken heart ached with such deep sorrow.  I love Vivian.  That actually doesn't begin to describe how I feel about her.  Everything about her is perfect and wonderfully made.  But the thought of having a "normal" baby seemed pretty great right about then. 

Sad, sadness are words we use to describe less than perfect situations when our feelings get hurt, or we watch someone be mean to someone else, or someone steals your clothes out of the dryer (true story) but "sadness" is no where in the vicinity of what was happening to my heart.  Sorrow is a word I stayed away from...it always sounded so old and so serious.  But sorrow was exactly what my heart felt.  A deep pulsing throb that began from my heart in my feet and slowly reverberated throughout my entire body.  The only thing I could do was cry.  Not a hopeless cry, not a doubting cry, a deep pained sorrowing cry.  Watching Vivian suffer is...there isn't a word to describe it.  The worst part is--I can't do anything.  I can't hold her, I can't take it away, I can't put a band-aid on it, kiss it and know it will go away.  This is my life.  This is our life.  It's not going away.

I escaped to the chapel for a few minutes, and kneeling before the tabernacle I wept.  I wept for Viv, I wept for our family, I wept for the families in our Pod who are suffering in ways I can't imagine.  Grayson passed away the Wed. night.  A new baby boy came out from surgery, but he isn't responding well.  In the scope of the sorrow around me, there are others suffering so much deeper than I am.  I get to see my baby.  I can touch her.  When she opens her eyeballs, she responds to sounds.  I felt Christ lift my heavy heart and place it back in my chest.  He took all my pain, the depth of my sorrow and reminded me that He will hold the burden for me, if I only surrender it to Him on the cross.  Once again, my heart filled with peace--God is here.  Here in my joy and always so close in my sorrow.


Wednesday, August 8, 2012

Mommy Love Note

My Dear Vivi,

There are not words that describe what I truly see in you.  You have a strength, a drive, a passion, a love that draws people close to you and the gets your spirit through these moments.  I am learning so much by watching you fight, watching you adapt to your new life with your improved heart.  I will always believe your heart was created perfectly, and that the journey you are on is all a part of that perfect plan.  You are never broken in my eyes, only perfect.

I love to watch you move.  I love how through the movements I learn more about you.  I love when you rub your right ear, I love when you raise your right hand behind your head when you sleep.  I love how you hate when anyone touches your feet and you go into frog reflects.  I love how you crack open your right eye when you hear a new voice enter the room and close it once you scope out who it is.  I love how you want Daddy and I to hold your hand when you are upset.  I love to watch you begin to wake up--you scrunch up your little face. It cracks me up that you get the hiccups as much outside of me as you did inside.  I know it has to be so hard to have your little body be trying to pump up your heart and hiccup all at once. 

You have grown so quick in the past 2 weeks--you look older (and it's not just because you are going through a lot).  I hate that I can't scoop you up into my arms and snuggle with your sweet face.  Hopefully, my 1,000s of kisses a day will get us both through to those moments.  I know when I can finally hold you again, I am not going to put you down, and I am not going to share those moments for a long time.   My heartaches at some moments because I know we will never have these moments of your first days in our life back, but I have to keep reminding myself that these weeks are just a drop in the bucket of days I will be able to hold you. squeeze you and snuggle with you.

Vivian Teresa, you are the light of my soul, the most precious gift of my life.  I can't remember my life before you, and that life was insignificant compared to the life I now have with you. God has blessed me beyond understanding.

I love you forever and ever amen,
Mommy

August 8

Oh my dear Vivian.  The past 24 hours have been the worst 24 hours of my life watching my poor little love try, try, try to breathe.  Watching her little chest work so hard to keep herself afloat has been terrible.  After 24 hours of trying to raise her heart-rate on her own Momma told the doctors we need to give her a break and throw up the white flag to breathing on her own and ask for re-intubation.  I know we are making the right choice--I just feel so bad that she has struggled for so many hours!  Jeez this whole Mom thing can be heartbreaking.  I have learned something about my baby--she needs just a little more time than everyone else.  After she was extubated, she started a fever, and we started antibiotics for an infection.  So not only has Vivi been struggling just with breathing, but also with fighting off yuckies.  She wants to take her time, but after she has her time, she bolts outta the gate and doesn't look back.

In all honesty, if this is the worst moment we have, I believe we are doing good.  I sat in the room while they re-intubated Viv and she did wonderful.  We are going to give her a day to recooperate, a day to see how she's doing after her day of rest, and then we will re-access the situation.  I have a great weight lifted off my shoulders watching her lay in peace again. 

Tuesday, August 7, 2012

August 7

We have officially put our baby girl through the ringer today and she is not having it!  Everything started off great: chest tubes out, check.  Pacer wires out, check.  Breathing tube out,  check.  Except she's not liking the last one so much.  Around 6 Vivi's heart rate starting picking up and by 7:30, Momma Bear was not having the high 180-190 numbers.  We have been on a roller coaster since trying to bring down her heart rate.  It is currently 12:50 am, and the poor thing is, I am sure, exhausted.  Her little chest has been moving, moving, moving for hours.  She is on high oxygen levels and if this isn't under control in a few hours, back to the breathing tube she goes.  Needless to say, I will be one of the first to see the sunrise--good thing I have a room with a view :)

This is a rough night.  I hate seeing her working so hard!  There is nothing wrong inside.  Echo was great.  X-ray perfect. Awesome pulses, temp normal.  She is just having complete withdrawl from her ventalator.  There is nothing I can do--I can't breathe for her, I can't hold her--quite frankly, it sucks.  I just want to scoop her up and soothe her, not that she is fussing or seems agitated, she's on more pain meds tonight than she has been the past few days, it's just the maternal instinct that I have to supress.  Rod and I have been discussing how blessed we really are that we haven't had more nights like this.  I totally agree.  It is just such a shock to go from such an amazing kick butt day to a 'what's happening' night.  I am hoping that Vivi will snap out of this like she has all her other slumpy moments.  It takes her a few hours more than most, but then she is ready to go.  If she continues this pattern, we should have this under control by 6 am. I just don't want her to be intibated again...but then I think, "did I make a bad mom choice by allowing all this to happen in 1 day?"  I only want what is best for her, and I feel awful thinking I could have prevented this if we took another day.  But then I have to let go of that and remember the key word for this journey is TRUST.  Today's Gospel was perfect for that theme.  When Christ asked Peter to come to Him on the water, without hesitation, Peter jumped out of the boat and only after he took his eyes off Christ did he sink.  What a great reminder to keep my eyes on Christ.  To believe the nurses, doctors and therapists He puts in our path are going to help us make the best decisions.  Christ says to the apostles on the boat, "Take heart.  It is I.  Do not be afraid".  Perhaps those words for me today as Christ knew I would be in this place.

My heavy heart tonight is torn between Vivi and a few families I have met while here.  One is on our floor--a sweet family from Kentucky.  their son was admitted for his last heart surgery.  Talking with his dad, he had told me since the beginning Grayson had problems with recovering after the surgeries.  This one has been no different, and in fact, incredibly worse.  He just turned 4 on Sunday and today  his family has all been coming up to see him after an emergency procedure this afternoon.  Literally I feel my heart breaking when I walk by their room.  I cried at dinner when his grandparents were asked to go back to see him.  If these walls could talk, the stories they could share of love and loss.  I also met a girl today at Mass who has been here for 5 months with her 6 month old son, Carter.  Carter is suffering from a rare air-flow problem and she was waiting to hear the results.  It was interesting, Carter's dad is Catholic and his mom explained to me that her faith was at one time important and she just felt such peace being in the chapel.  She wanted that peace back.  It was a beautiful moment as we sat together and prayed for Carter, for her and for their family. (Yes, in typical Maria fashion I asked if we could pray together.  Her face was in fact PRICELESS! but I think she was touched to pray with someone).  I share these things because I am realizing the need to share the love and prayers we receive with all these people.  I told Vivi when I got back up with her after Mass that we had to start praying for all these other people, and she was like, uh, duh Mom. :)  And I promised her I would offer up the sadness in my heart of not being able to hold her for these babies and their families.  Feeling the deep pain for these families is allowing my heart to be closer to our Sorrowful Mother at the foot of the cross.  I know Mary and Jesus are both swaddling Vivi, and it brings so much comfort to think she is holding all these other families and their babies in her arms as well.

Continue to pray...for all of us :)   God is here...God is here...God is here.

Monday, August 6, 2012

August 6, End of Day

Today has been a great day for Vivi.  She has been holding her own which is such an awesome sign of such great progress. She began feeding today via NG (feeding) tube.  She is on a slow progression of 3 mls/hour up to a max of 16 mls which is equivalent to about 1/2 ounce.  At this point, we are at 6 mls and she is doing great!  She has been so chill all day, which has been so wonderful especially since she has been weened off all her meds.  She is handling this all on her own.  Our big prayer request is that despite the NG tube, we are able to work with the OT/PT to get her suck, swallow, breathe technique down so we can get rid of that thing and orally feed her, either bottle or breast.  I am not married to the breast feeding gig, I am married to the oral feeding gig.  That is the request :)

Tomorrow Viv is having both chest tubes removed as well as her pacer wires.  All of these things are in on her heart, so there will be a little pain to loose them.  Her pacer wires are there to act as a pace-maker if the doctors would have needed after surgery (never needed, praise God) and the chest tubes have been in to drain any extra fluid in or around her heart.  This is such an exciting step in our road of recovery.  We are also hopeful that the breathing tube will be extracted tomorrow.  The doctors have been slowly turning down the breathing machine and she is responding great to this new physical responsibility.  If it is too much tomorrow for her, we will do it first thing Wed.  I can't wait to hear my baby cry, cough, coo, EVERYTHING! What a joy--happy tears will be streaming my cheeks
I have no doubt.

I was washing my pumping supplies tonight for the billionth time today and I had a tiny A-HA.  This is my life--the washing the pumping stuff.  It's not exciting. Its day to day, moment by moment repetitive actions that are meaningful because they are benefiting my precious little angel.  She is everything and I don't want it any other way :)

August 6, Transfiguration

Peter says it best in today's Gospel from the Transfiguration, "Rabbi, it is good to be here!"  I couldn't agree more!  This is the moment Christ has given us to love and be loved.  Sitting here with my brood, I am the happiest woman in the world.  I am blessed to have a wonderfully supportive husband and a stunningly beautiful baby girl who is kicking butt. 

God has graced us with these moments to grow and to allow our hearts to become more like His. Viv's heart has been pierced like Christ's...I know He has changed her heart :)   What a blessing this journey has started out to be.  I did not choose to take this course, but Christ has chosen me.  The invitation to grow in trust of God's Will has been at times a test, and will continue to be so.  But the ultimate truth that this is all for God's Glory makes it so good to be right here.   

Sunday, August 5, 2012

August 5, Day 1 chest closed

Vivian had a great night last night and is doing amazing today.  After a bit of a slumpy day yesterday, we convinced the doctors to chill out on weening her from meds and she liked it a lot better that way!  She is letting us know what she wants: she doesn't want to lay on her side, she wants to be able to touch her werewolf ear, and she is getting ready to wake up.  I can't hardly wait to be able to hold her again--the poor thing.  I think it hurts me more than her :(

Rod said something this morning that I have been thinking about all day.  He said she is a physical product of our love, and her scar is a physical product of God's love for her.  Looking at her journey through those lenses, it changes every day, every challenge, every tear, every heartache into something that I can't help but cherish.  We had our friend Fr. Kyle bring us Jesus today since we didn't want to leave with her waking up.  In Fr. Kyle fashion, he gave a quick, yet poignant homily.  He said how we have this moment to unite ourselves with Mary and John at the base of the cross.  That there is joy in waiting there.  I can't help but agree more.  It breaks my heart to watch Viv suffer.  If I could take it away, I would without a hesitation.  For some reason, Christ is asking her to begin her earthly life upon the cross with him.  Like Mary, I am not going anywhere.  Like Mary, I believe in the hope that God is always here, and His plan is Almighty and perfect. 


Saturday, August 4, 2012

August 4, Chest Closed!!

Vivian's chest was closed this morning.  We just got back to see her and she looks so beautiful.   Her little face almost looks like she is smiling!  There are not words to express how proud of her I am.  I asked the nurse if it was bad to think the most brave, strong and admirable person in the universe was my 11 day old daughter.  She said absolutely not, especially since she is a rock star :)  She even changed her bottom sheet to a star sheet because of her rock starness!  Vivi is certainly making a name for herself on this floor.


Rod and I prayed the Rosary this morning while she was having her chest closed.  Being Saturday we prayed the Joyful Mysteries.  As we were praying, I had a great a-ha!  This week, Viv's surgery was on Wednesday.  We prayed the Glorious Mysteries.  This morning, with her chest being closed, the Joyful.  I felt Mary telling me that in celebrating everyday with Vivian, there are so many joys and victories, moreso than the sorrow.  What hope I have had in my heart this whole week for Vivian to be such a strong fighter, and she has done wonderfully! There is so much joy in being here with her, encouraging her through this, and in living the joy of being her mom....What an honor!

I had two first thoughts when I saw her today with her going to be scar:  Oh my goodness!  How beautiful is she?  (This part of her will always be seen as a beautiful victory. ) and, God has made her perfect-just as she is.  If He didn't want her to have this scar, He would have given her a different heart.  Because He didn't, He gave her this scar to be a constant reminder of the great love He has in  such a special way for her.



Friday, August 3, 2012

Post-Op Day 2 Final Report

Vivian Teresa Dunlap is a ROCK STAR! She has kicked massive recovery booty today.  We are so proud of her :)  She is on target to have her chest closed tomorrow which is seen as another OR procedure.  We should be expecting another slump, but we will see how she decides to handle it.  I know she will get through it with flying colors as she has up to this point :)

Vivi decided she wanted to wake up today--her eye balls were wide open and she was just looking around a little dazed and confused poor thing.  It was special, Rod and I were here together, to see her beautiful eyes again.  We miss her, but know that this is all necessary to get her home.

We spoke with one of the GI (liver) doctors today, and received great news.  All her liver enyzmes are right on target, and the jaundice she has is normal baby jaundice.  We are blessed.

Please continue to storm heaven with your prayers!

August 3, Post-Op Day 2

We have started this day off on the right foot!  Vivi is slowly being weined off meds, is peeing it out, and is being "deflated" so she is prepped for her big day tomorrow--getting closed up!  She is doing well, such a champ!  Our issue has been keeping her asleep.  She is keeps beginning to wake up--her little right foot starts a-wigglin' and she has done her body shimmy a few times which jacks up her heart rate that we need to keep down.  She is a fighter!  I can't help but look over her and tell her many times on a daily basis how much I admire her.  She is the STRONGEST person I know....it's amazing the things we are able to learn through our children. 

Today is first Friday, Jesus' Sacred Heart is very present.  When I saw Vivian's chest this morning, I had an image that was very profound for me.  This whole time I have thought that this was a cross that Rod and I were carrying, having a child that has a medical obstacle.  When I saw her open chest this morning, I realized it is not us carryin the cross, but her.  I believe with every being in my body this child has said "yes" to this before she was born to bring other souls closer to Christ.  In that instant, I almost saw myself standing at the foot of the cross with Mary's arms wrapped around me and Jesus cradling her in His arms above us on the cross.  My vocation as her mother is to love her, to support her, and to stand beside her ESPECIALLY while she is suffering.  Living close to the cross is living close to the virtues which bring us closer to Christ--Faith, Hope, Love.  Living close to the cross, although there are the emotion ups and downs, feels like we are living in a bubble of immense grace.  God is here--each moment, each hurtle, each victory.

Thursday, August 2, 2012

Post-Op Day 1, Final Thoughts

Well I think it is safe to say that the prayers for Viv's heart rate to lower and stay steady and her blood pressure to remain steady.  Our nurse just walked in and said, "She's Fantastic!!"  It is crazy, I have felt so peaceful all day--what a grace God has given me.  It's exciting that each moment that goes by that she is doing well is one more moment we are closer to going home with her! 

Our next step in recovery is Vivi to start peeing.  We need her to get rid of the rest of the fluid so her chest can be closed, hopefully Saturday.  I know it is a weird prayer request, but please ask Jesus that she pees us a river tomorrow :)

Today as Rod and I have been supporting Viv together, I realized I have fallen in love with him in a whole new way.  I always have known that the love that I have for him would change, but I never knew it would be more.  Although its a bummer we are in the hospital spending all this time together, it has been so awesome to see him as such a wonderful daddy, a supportive spouse and just so fun to be with.  I am so blessed to have such a great guy to go through this with.

Tomorrow is going to be another day full of Victories and Challenges, and we are ready to celebrate every moment together. 

Update Post-Op Day 1

When Rod is getting texts demanding updates, I know its time to take a minute and share :)

Vivi is doing great--better than this morning.  Her heart rate is gradually slowing down, and becoming more steady.  We are still praying that her heart rate remains lower and steady and that her blood pressure remains steady so we can begin taking out some lines.

The line that was going through her belly button is out, but that was something that was a bit over-due :)  She has a cute little outtie, that might turn innie with time....we'll see!

Rod and I were standing over her talking to her and she opened her eyes wide at us.  I know she knows we are here.  The doctor has been insisting I go home tonight (i slept great last night, and just woke up from a 3 hour nap) so I get some "good sleep" and that I take a spa day tomorrow.  I looked at him and said "No way.  I'm not leaving her!"  His response everytime is 'don't you trust me? don't you trust me?'  Obviously I completely trust the doctors, I just promised her I would be here and I know she knows we're here, so I this momma ain't leavin' :)

August 2, Post-Op Day 1

We made it through the night!  It is all little victories that we will be celebrating to the big celebration of bringing her home.  Viv's body is reacting different than other little bodies.  Her blood vessels are to relaxed--a sign that her vascular system isn't quite up to working on their own.  Her adreinal glands aren't letting off any steroids, so she is having them put into her body to hopefully jump start the reaction.  She is also going to have some new blood pumped into her which will hopefully livin' up her color and perhaps get her body the kick-start it needs to get a move on.

I prayed last night as I went to sleep that I would wake up when she needed me.  I woke up this morning at 5, and went over to talk to her.  It was perfect timing, her little eyeballs were opening up.  The night-nurse told me that was the first time that happened since she had returned from surgery.  In my heart I knew that was an answer to my prayer--even if she wasn't awake, if she could focus she saw me.  I promised her before she went back I would be here when she woke up.  Opening your eyes still groggy counts too.

I honestly don't know how I am feeling.  I still have a deep peace that it's all good--it is because God's hand is evidently in all of this.  Today is the 5 year anniversary of my grandpa's entrance into heaven.  I have been telling him all day to love on her, to keep rooting for her and I know he is. 

There is a little guy down the hall who has been screaming all morning...although the doctors keep trying to get him to be quiet, I can't help but think about how happy I will be when I hear her scream again.  It's so weird in here without hearing her little 'coos' and cat or goat noises.  I know its only a matter of days before we hear that again but it kinda breaks your heart...I just miss it.

"You are my sunshine, my only sunshine
You make me happy when skies are gray
You'll never know dear, how much I love you
Please don't take my sunshine away"

I find myself singing "You are My Sunshine" to Viv so often.  It's one of my favorites, perhaps because it was sung to me so often, but as I sang it to her this morning, the words really stamped my heart.  Vivi is my sunshine--she has made my heart so happy.  Even these days of being in the hospital, this morning with not so perfect report, these "skies seem gray" scenarios, just being with her makes me happy.  The love I have for her is something that she won't understand, can't understnad until she is a mom herself and even then I'm not sure. She's my girl, my sunshine.

We need prayers that her body catches up and decides to work without the meds so we can start removing lines.  I will give another update tonight as we continue to fight through this day!

Wednesday, August 1, 2012

Family Photos, 7/31

The ladies of 1heart2souls surprised us yesterday with a gift we want to share with you.  If you get a minute, check out these pics! :)

http://www.loft3pd.com/blog/?p=8741

August 1, Post Surgery

My soul proclaims the greatness of the Lord,
my spirit rejoices in God my Savior
for he has looked with favor on his lowly servant.
From this day all generations will call me blessed:
the Almighty has done great things for me,
and holy is his Name.

He has mercy on those who fear him
in every generation.
He has shown the strength of his arm,
he has scattered the proud in their conceit.

He has cast down the mighty from their thrones,
and has lifted up the lowly.
He has filled the hungry with good things,
and the rich he has sent away empty.

He has come to the help of his servant Israel
for he remembered his promise of mercy,
the promise he made to our fathers,
to Abraham and his children forever.

(Lk 1:46-55)


Read more: http://www.ewtn.com/Devotionals/prayers/magnificat.htm#ixzz22KmJrzs3

Before I get started, I want everyone who reads this to know that I attached pictures of Viv to this post surgery.  It may be hard for some people to see her with all her tubes.  In my eyes, she looks more beautiful! The pictures showcases her strength and the hope we have in her to fight through this.  I can't stop telling Viv how proud I am of her. :)

At 10:34 this morning we were told that the first incisions had been made on Vivian.  I was still in shock after wheeling my baby down from the room I had been holding her in just hours before to hand her off to the doctors.  No one can explain to you the love you have for your child until you are living it.  My heart has literally been outside of my chest since we welcomed Vivian into this world last week, and it will be this way now until FOR-EV-ER.  Giving her away to the doctors was a moment I will never forget--and it is one we will experience a few more times with her.  My mom always says 'you don't get the ticket until you arrive to the station' and I lived that today.  Although tears poured down my face and I could barely get out the words, "I love you" a peace fell over me and took over my body and I felt no fear.  I felt this same way the day we found out about Vivi's heart--I knew that peace was God speaking to me securing me to the truth, "it is all going to be ok" because He is here.  Sitting in the waiting room praying with Rod, I knew with every being in my body my baby was ok.  She is a fighter, and has such a strong soul that I knew she was going to come out of this surgery as a Champ.  An hour and a half went by and the surgeon's assistant walked in.  "Vivian is a Rock Star back there.  She is doing so great, we couldn't ask for better"  Exhaling for the first time, I sat on Rod's knee and snuggled in close--I knew it!  I knew she could do it.  I knew she has the strength to do so well.  Another couple hours and the nurse came in--the surgery was finished.  Viv did awesome, but the hardest part was yet to come.  She had to ease off the heart and lung bypass machine to "living" on her own.  Another hour went by and when the nurse opened the door smiling, I knew we were finished.  She did it--she did all of it perfectly.  I smiled a smile I never have smiled before.  She did it.  The anticipation was over.  My insides were singing praise to God "My soul proclaims the greatness of your love oh Lord and my spirit rejoices in God my Savior!"  The words of Mary reverberated inside--our hearts had been linked all day and the joy I was feeling she was feeling with me.

Like I have mentioned many times, Mary has been so close to me, especially Our Lady of Sorrows.  This morning I woke up curled up on the Lazboy Vivi sleeping soundly in my arms and they had changed the time we were going to send her back.  I was thankful, but anxious at the same time.  I knew what was coming, and I knew I couldn't stop it.  I knew Viv knew too....poor thing cried a cry I have not heard throughout the night and there was no consoling her.  It was as if her little soul knew what was on the agenda for today.  I kept thinking about Mary--how she had to wait and watch Jesus suffer.  As a mom, as much as I wanted to take her place and take away all the pain she would be going through, I couldn't.  She had to do it.  I felt Mary standing with me, hugging me, crying with me because she felt the same with Jesus dying for all humanity.  Obviously I don't know what God's plan is for Viv.  I do know that although it seems that there wasn't "the miracle" of her heart being healed, I know there are miracles that are happening that I see, but the ones I love the most are the ones I don't see and I know they are happening.

Two very interesting things happened today that were little smooches from God saying he is here!  Tomorrow is the anniversary of my grandpa's death.  He had a great devotion to St. Therese of Liseux.  He called her "his girlfriend" and rightfully so after she would grow roses in his backyard in the winter :)  I told him after he died that he would have to find me a husband.  Rod is not only similar to my grandpa, but he is also related on his mom's side to St. Therese.  Coincidence?  I think not at all!  Hand picked, more likely ;)  My mom received a phone call from my dad today while we were waiting for Vivi to complete her surgery.  He has just received a card from a family friend that offered masses for Vivian from St. Therese of the Little Flower Society.  What an affirmation that grandpa is rootin' for Viv, but that he is also roping St. Therese in as well.

A few weeks ago I had a dream that Rod and I were driving in a van with our 5 daughters.  For some reason there were 2 of the girls that stood out more--one was a sandy blonde hair girl and the other was a dark haired firecracker.  The blondie was Vivian and the dark haired one was named Audrey,  When Vivi was born and had all the dark hair she has, I thought about this dream and thought maybe Audrey was Vivi's guardian angel, and I got the physical appearance messed up in my dream.  Today a family friend's sister who works at Children's stopped by to visit us while we were waiting.  She brought with her a very special gift, a rosary that was her mom's.  Recently, her mom passed away and this rosary was the rosary she was using while she prayed as she died.  Touched by this selfless gesture, I asked her what her mom's name was so I could always tell Vivi about her special angel in heaven that she would have close to her with this rosary.  Much to my surprise, the answer was Audrey.

We are so blessed by all the prayers that have been storming heaven in our behalf.  Viv definitely jumped a HUGE hurtle today by getting through the surgery.  The next 48 hours are crucial in the recovery process so don't give up the prayer intensity yet :)  My prayer is that the doctors are wise as they assess each situation, that the nurses are compassionate and well trained, the Vivi continues to fight hard, and that her liver redirects itself and is a non-issue.  From the bottom of my heart, thank you for all the prayers and all the love.  I am floating on them.





August 1, Surgery Prayer

Lord God, I praise you for the gift of this new day.  Lord, I praise you for how you have fearfully and wonderfully knit Vivian together inside me.  Thank you for the priveledge of being able to carry her close to my heart for 9 months.  Thank you for the week we have had to hold her close to us, to watch her grow and to love her every moment.  Today Lord Jesus, you know is a big day for our Vivi.  I know your every plan is perfect, and that this is a part of a bigger plan.  Thank you for asking us to be Viv's parents.  Thank you for including us in this awesome plan for her life, and for the world.

Lord, I ask you to be in the OR with the surgeons,doctors, nurses and especially Viv.  Work through the surgeon's hands.  Keep his mind sharp, and his work precise and steady.  Be with the other doctors and nurses. Allow them to know their role, and to be on their A-game.  Allow the whole medical team to work united as one to help Viv.  And of course Lord, be with Vivi.  Send her angel to keep her calm and safe.  Keep her heart strong, and agreeable to working with the equipment keeping her body working.  Allow her to feel all the prayers and love that are surrounding her.  Allow her to know she is so loved, she is strong, she is brave and that her life has such a wonderful message and purpose.

Lord, give strength to Rod and I to handle this day gracefully.  To surrender our hearts and lives to you fully.  We trust in you.  We believe in you.  We hope in you.  Our faith is completely in you.  Lord I thank you in advance for the success of this surgery.  I thank you for a safe and full recovery.  I thank you for being with us in the midst of this heartache.  You are holy, wonderful, awesome God and I love you, praise you and thank you.

Amen.

Today is the Day

Good Morning!  There are so mnay things I want to write, and the time is coming for that.  Vivi is scheduled for surgery today, August 1 at 11 am.  Please start the prayers, and keep them coming!  We are just beginning the journey.