Time marches on

Time doesn't care what your plans are, what you want to do, what you dream of doing, how stressed out you are or how you don't know if you can deal with this again...Time marches on...consistent, with a beat and a cadence..tick, tock, tick, tock....

Time doesn't care that we have a routine, that Xavier has fallen in love with his baby sister.  Time doesn't care that Xavier loves going to his play group or is ready to move up to a new swim class.  It doesn't care that going to the park is important to X....it just keeps marching on...tick, tock, tick, tock....

Each day seems to go faster then the next, sweeping us off to the fontan..brining us closer to long days and longer nights in the ICU listening to the beeping of machines.  Time keeps brining us closer to being separated as a family, Nate and I splitting up time at the hospital, time at home with Elliott, grandparents stepping in to do our jobs as parents,

bringing us closer to the constant rotation of bedside watchers.  Tick, tock, tick, tock

But when that call came in...TIME STOPPED.  All I could hear was my heartbeat and the voice on the other line rattling off a list of dates....September 24 th it is....the final scheduled surgical repair for Xavier's special heart.  

So with the remaining time till we fight the next battle in this war we will be free.  We will swing at the park and swim in the pool.  We will go to the beach and spend time with family.  We will pray and cry and curse CHDs.  We will live in the moment and thank God for all our blessings.  

As we get closer we ask for your prayers.  We ask that you keep not only Xavier, but our family in your thoughts.  And we thank you for supporting us in this journey.  

I mourn....

Three years later and I find that I am still in mourning...

 In labor with Xavier!

 I mourn the loss of stillness in my life.  From the moment that we received Xavier's diagnosis I lost all stillness.  I remember sitting on my fathers lap, sobbing because I knew that I would never have a moment of stillness again.  I would always from that point on have some form of worry in my mind for this child.  I knew that I would never again soak in the tub and have peace.  I would never be able to lose myself in a book, completely relax in the sun...there will always, for the rest of my time on earth be worry in my mind.  I have accepted that, I have learned to live with it and fight against it....but I miss being carefree, worry free...if only for a moment of stillness.

He is finally here!

I mourn the loss of other children walking the journey with us.  Some I have known, held, hugged, laughed with.  Others I only know by a picture but it does not make the loss any less painful, any less real.  To see my friends mourn the loss of their child...it leaves a scar on my soul.  And it reminds my heart of how fragile our "healthy looking" kids really are.

Recovering from his Norwood

I mourn the loss of ignorance.  I long for the days when HLHS, PLE, ECMO meant nothing to me.  I wish I had no clue what plastic bronchitis was.  I wish I didn't have to research the fontan, liver biopsies, tricuspid valve replacements....I wish I didn't know what it feels like to sign a consent where the number one risk is death.  I wish I wasn't a pro at giving my three year old a shot or testing his pacemaker.  I wish Xavier wasn't a pro at laying still for an ECHO or facing the dreaded blood draw.  I could go the rest of my life not worrying about heart failure, exposure to toxic medications that are keeping him alive.  I wish I didn't have to wonder what prolonged lovenox injections are doing to his bones, prolong lasix is doing to his kidneys and for the love of God, do not google the side effects of amiodarone...the drug that helped him recover from his last surgery.  There was a time I had no clue what oxygen saturations were, what the normal heart rate was for a two year old or what sensory processing disorder was.  I know and have seen too much for my own good.

Recovering from his Glen

I mourn for my parents, my in laws, my husband, my brother and sister in law and for my daughter.  All of those people who are affected by this awful disease.  They were thrown into this journey just as we were.  They worry about not only Xavier but us as well.  I can't image how my mother must feel seeing her daughter stress and worry so much about her child.  She not only worries for Xavier but for me as well.  Our family "holds down the fort" while we are gone for weeks at a time.  Keep things in working order.  They analyze every sneeze and cough...wondering if they should come visit...they wash their hands raw worrying about getting him sick...they watch their sweet grandson struggle with development and watch us work so hard to help him catch up.  They celebrate wholeheartedly as he reaches little milestones a year later than his peers..reminding us that he will do things in his own time.  I mourn for my sweet baby Elliott who has no idea that her beloved big brother is sick.  At 5 months old she simply adores him and loves to watch him walk around and play.  The way they look at each other is priceless.  She will one day come to learn that he has a sick heart.  She will visit him in the hospital and will carry her own burden that goes along with being a heart sibling.  She will make trips to the hospital to cheer him up and have so many questions that I hope to be equipped to answer.

Recovering from his valve repair/pacemaker

I mourn.....

daily, hourly but I also celebrate and all I have to do is to look at him and I smile....I thank God that he is here with me TODAY.  I take a deep breath and remind myself that tomorrow is not promised and that I need to live in the moment.  I treasure every hug, smile, laugh, and temper tantrum.  We celebrate three years with our miracle on the 28th...the baby that we could only hope to have three minutes with....WHAT A BLESSING.

TODAY!!!

Xavier goes in for a heart cath next Monday, June 2nd.  This is the first step toward finishing his repair.  Your well wishes, prayers, and positive thoughts are appreciated today and always.  Thank you all for taking this journey with us.  May God bless you today and all the days of your life!

Dear Xavier

Dear Xavier,


My strong warrior...do you know how amazing you are?  How strong and how special?  You've had such a huge impact on our lives..you made me better!!!!

I can't believe I waited so long to do this for you. Your life has been such a journey in the 2 1/2 years we have had you.  Your so strong!  From the moment you were born you kicked serious butt!  We were scared when we found out about your heart, but we prayed and found faith that together we would not just get through this journey but that we would laugh, play, run, jump and sing our way through it.

I am sure by now you have noticed that scar on your chest.  The ones on your side.  I bet you can feel your pacemaker and your have figured out that we go to the doctor and hospital A LOT.  Well dear boy you were made with a special heart.  You were made by God, perfectly imperfect.  You are exactly the way you were meant to be.  Mommy and Daddy have found  you the worlds best cardiac team to take care of you and together we will concur this and rejoice in the miracle that is your life.

But enough about your heart....let's talk about you.  Your a fantastic little guy...Your funny, you have the best laugh and EVERYONE talks about how amazing your smile is.  Lately you love trains, cars, the IPAD and hanging out with me.  I hope it's like that forever. We make a great team.  You worked very hard to learn to walk and baby you should see you now!!!  Your running!  Your still working on learning to talk but it's coming.  Your so smart.  You know all your colors and letters...you follow directions well (most of the time)  and you have 65 signs!!!  Some things are a struggle for you, but you never give up...you follow your own path and do things in your own time and I totally dig that about you.  You learn something new everyday..it's pretty cool to watch.  What a blessing that I get to be a part of who you are.

Now that your a big brother your learning about patience and waiting your turn.  I know it's hard but you do your best and that's really all we can ask.  You watch over Elliott and your such a good helper with her.  I know you will grow to be best friends.  The thought of that makes me happy.

Life isn't easy or fair Xavier!  Your life will be painful at times, scary at times and you may ask why me...but I promise you that your life will always be blessed and full.  Mommy has created a network of support for you.  You will always have someone in our life who will understand.  You are and will continue to change people, to have an impact.  So very many adore you!!

Together as a family we will tackle the obstacles in life.  Surgeries, procedures, illness, heart break (the kind you will feel when some girl can't see how amazing you are), bullies, that horrible algebra class and  the time you didn't win.  We will celebrate all the amazing times to come.  First days, that A+ you worked so hard for, discharges from CHOP, graduations, first love, dancing at your wedding.....

Your future is so bright!!!!!!  I'm excited for this ride...I'm blessed to be your mommy, your best friend and your biggest fan!!!  ROCK ON X-MAN!!!

Our year in review...

"Out of suffering has emerged the strongest souls; the most massive characters are seared with scars" - Kahlil Gibran

When the year comes to a close, it is part of human nature to reflect on those moments during the year that changed us, tested us, made us laugh, cry, and pray like we never have before.  We reflect on those times we never thought we could get through with wonder and we take time to thank God for the miracles we were witness too.

This year tested our family like never before and brought us unexplainable joy.  We spoke with our cardiac team about Fontan ( Xavier's third stage repair) only to discover that a valve repair would come first.  We lived in the hospital for a month, watched our boy suffer and cry.  We saw him as sick as he has ever been and spent many nights, mornings, afternoon crying out to God to help him, to heal him, to give us a clear path to recovery.  We signed papers stating we understood the risks for surgery, the risks of a pacemaker, the risks of a transfusion or two.  We crawled into a hospital bed with our baby and held him tight to try our best to take away the fear and pain.  We held on with white knuckles to our parents, our family, our friends as X battled irregular hear rhythms, low saturations, plural effusions, an inability to eat, poop, sit up, breath.  He got CPAP, oxygen, Chest PT, an NG tube....we added a EP doctor to our team and had to leave him while his heart was shocked back into rhythm....4 times... 

We were overjoyed as we watch him slowly but surely come back to us.  Our spirits were lifted as we walked out of the hospital with our child...fragile, skinny, in pain but ALIVE!!  As the weeks ticked away we watched him get bigger, stronger, happier....as my belly grew bigger with our daughter.  We rejoiced as we got the news that our fetus had a whole, healthy heart and as we got the report that Xavier's heart looked "beautiful" and better then ever.  His repair was perfect, his saturations were higher then ever, his function was great and he was rockin recovery.  

We worked hard on walking, talking, eating, sleeping...we had therapy four times a week, started a play group, took swimming lessons, went on vacation to the beach and took trips to visit family.  We went to the zoo, the aquarium, the museum....we had fun!!!!

We cheered him on and cried out in praise as we watch him take his first steps, which soon turned into full blown walking....

Xavier enjoyed his first time trick or treating, thanksgiving with his great grandma, great aunt, nana and pap pap.  He played in the snow, decorated the tree, made homemade ornaments, baked cookies and went to look at the lights...

And on Christmas Eve he became a big brother to baby Elliott..a heart healthy baby girl.  

Our family was blessed to be supported and lifted up by many people over the year.  It was a blessing

to be honored by Hayden's Heart Inc in February, we were showered by gifts and cards while X was in the hospital, we were blessed to be a part of the steps together race again this year and we rocked the roof off the joint at the X rocks the spot fundraiser hosted by 107 media and Bar A.  

I had the opportunity to give back a little this year by attending the Hayden's Heart 5k, working on Philly Hearts with the Children's Heart Foundation, delivering care packages to CHOP for Hayden's Heart and working with dear friends to start a Philadelphia Regional Chapter of Mended Little Hearts. 

2013 was a year that will forever define us as a family, as members of the heart community and as individuals.  It has tested our resolve, strengthened our relationships, made us better people and opened our eyes to all the miracles, big and small, that surround us everyday.  We ask that you continue to pray for Xavier and for our family.  

Here's to 2014 and all the hope and promise it brings.  We know that we are surrounded by love and that makes taking on a new year of unknowns much easier......keep on rockin team Xavier!!

The worlds worse blogger!!!

Please, please, please forgive me...soooo very very much has happened since my last post of June 27 th...and it just hit me today that we have many followers who are not on Facebook...so...here we go....

The cardio version that took place at the last post was only successful for a few days. Xavier's heart went back into the flutter and he just continued to get sicker and sicker. His heart rate just kept getting slower and his resting heart rate would fall below 40, which is considered a pause in the beat. And his oxygen saturations were in the 50's...Very scary when your ICU room floods with doctors and nurses...

 

Finally on July 10th, after dealing with an infection, we decided that the best plan of action for Xavier was a pace maker...so in a whirl wind and an hour after the decision was made my sweet boy was wheeled back into the OR, less then week after his valve repair to have a pacemaker placed. It was scary and no fun, but three days later, he was starting to feel better. He was laughing, playing, sitting up and getting better by the minute!!!

After 31 days in the hospital, Xavier was discharged. The first two weeks were rough. He struggled to eat, sleep and manage his pain...however, slowly but surely he began to feel better, eat better, sleep better and get his spirit back. Before we knew it he was getting stronger and happier and we were getting our baby back.

Since coming home, we have been unstoppable! We have had to make a few trips to CHOP for pacemaker clinic and cardiology, went peach picking, we went to the aquarium, flew to Rhode Island for vacation with Grammy and Grampy, spent Labor Day weekend with Nana and Pap Pap and have trips to the zoo and pumpkin patch in our future!! Xavier is doing better then ever! His heart has never looked so good, his repair is great, his breathing has slowed, his O2 is higher and he seems to just feel better all around. He has learn 20 new signs, has started to say some words and is working really hard on walking and climbing. He has begun to go to a play group and is back at swimming lessons. He is also preparing to become a big brother. His little sister, Elliott, will be born in early January and has a healthy heart.

For us, this has been our most difficult summer. We have never seen Xavier so sick or struggle so much..but in the darkness his light always shined. God has been so good to us and we have never been alone. We can't thank our friends, family and heart community enough for the prayers, well wishes, gifts, phone calls, emails, text messages and hospital visits! We hope to pay it forward some day!

Its' a GIRL!!

The perfect patient!

Everyday is filled with fun!!

A world class traveler!

Fun at the aquarium!  

Peach Picking

Family Fun Day

The Beach is the place to be!!

X loves Rhode Island!!

Fun during play time

Fun with Cousin Sue

Visiting with Connor

With his friend Molly after their first day of "school"

At play school!

And the beat goes on...

180......the number of hours I went without being able to hold my child. But when they put him in my arms today, it was like not a second had passed. The scars are fresh, the pain in his eyes is still very clear, but once we found the perfect position, the perfect RHYTHM, we both melted into each other. For one perfect hour the world faded away, the beeps were gone, no wire separated us and we were one.... for the very first time in 180 hours, all was right with the world.

That word has a different meaning to me now...rhythm. How rhythmic the heart is. How perfect the conditions must be in order for a healthy heart to beat in sync....so all must be right with a special heart for it to find its perfect rhythm.

I sat in a chair for days watching a wavy green line on a screen, willing it to calm its pattern and pick up its pace. Watching Xavier wiggle in discomfort. His heart was literally in a flutter. An uncomfortable flutter that caused his atrium to beat at 400 beats per minute, while his ventricle was going at a snails pace of 80 beats. Highly train doctors who specialize in the hearts rhythm were able to tell me why this was happening ( the atrium was cut, stitches were placed, scar tissue was causing a interruption of the heart electrical current) however they were unable to give me a perfect plan to help him. It was a ton of trial and error and the whole team was getting very frustrated that the cardio version wasn't working. We added and subtracted different medications in order to find the perfect cocktail. Everyone looked so defeated as they gathered that last time to shock his tiny, tired heart. I was at home, getting ready to head to the hospital when Nate texted me that they were about to do it. All I could do was hit my knees and literally beg God to allow it to work this time. I knew that doing a cath to break up the node that formed in his atrium was risky on someone so young and little...I knew that Xavier was strong enough, but I was positive that I was not. As I prayed a sense of calm overtook me and I knew that this time it would be successful.

The EP docs are so happy with how well his rhythm is. He found his beat and seems at this hour to be holding steady...but the battles continue in this war. His blood pressure has been raising all night. Could be withdraw, could be pain, could be depression. He still struggles to eat and to go to the bathroom. He has a fever and an inflammation marker in his blood has jumped from 2 to 24. He is very restless tonight and almost seems to panic....but in the chaos, I rub his head and sing to him. And together we find our rhythm.

This hospital has a beat of its own. Together, each person playing their different part, we will make some beautiful music together. In time, we will help Xavier heal...and he will leave this hospital better than when he came in. God is the conductor of this symphony. He keeps us in tune, in time and helps us always find our beat. Your prayers for healing are heard and answered. I can only pray that Xavier's story, his strength and the miracle that is his life is a testament to the power of God and that our story will bring others to the kingdom of God.

So here we sit, at CHOP doing all we can to heal our mighty warrior...working hard to stay in rhythm and to stay in sync....AND THE BEAT GOES ON.....

I WILL NOT be shaken...

The air is thick in our house today. Tears fall through fits of laughter. I can't speak for anyone else, but I almost feel manic. My moods shift with the clicking of the clock. One minutes I feel peace, the next panic and the times in between sad, blessed, worried, exhausted, full of faith. We are blessed to have my mom, Xavier's Nana here with us. Nate's parents are driving down from Rhode Island. Wednesday morning, my dad will meet us at the hospital. We will be a strong, united front. We will pace the floor, cry, laugh, drink way too much coffee and make phone calls to our friends and family following every update.

Xavier was a champ at pre-op today. We have walked this path before..but each times feels like the first. By far the most challenging part for Nate and I is the talk with the surgical fellow...the risk facing Xavier. There is no beating around the bush. They are blunt and tell you every horrible thing that can go wrong. It's their job and quit frankly it sucks!!! But today, while I was doing my best to listen without passing out, it hit me. God was giving us a specific run down of what to pray for. So here it is:

We come to The Lord our God, begging for healing and mercy for Xavier. We specifically ask that 1. The Lord will be the surgeon tomorrow. Dr. Gaynor is a skilled and talented surgeon, but he is merely a vessel for the Lords work. We ask the great healer to have his hands on Xavier's heart and engulf the OR with the Holy Spirit. May the whole team feel the presence of God.
2. We are praying for an easy hand off from us to the team. That Xavier experience no fear or anxiety. That he only feel peace.
3. Getting through the scar tissue is by far the hardest and most dangerous part of surgery. He has a huge risk of bleeding. In order to cut other risks, we need a smooth entry, with minimal bleeding. We know that The Lord can grant us this miracle.
4. Xavier will be put on bypass and his heart will be stopped for surgery. We pray that his time on bypass is short and his heart has no problem coming off bypass and beating normally on its own.
5. The goal is to repair the valve successfully. It is possible that if they will have to replace the valve which is not something we want. Success with the actual repair is so important.
6. We ask The Lord that Xavier's heart function return to its normal state, or even ( dare I dream) better then before.
7. Infection is always a risk. Please pray for an infection free hospital stay.
8. We ask that Xavier have a smooth, pain free recovery and that he is feeling like himself in no time.

The next 24 will just be the start of a roller coaster ride, I keep trying to focus on just bringing Xavier home. Prayers, well wishes, positive thoughts, good vibes...all are appreciated. Many of you have been asking where gifts and cards can be sent. We will not know till we get a room number. I will post a link as soon as we get an assignment. I will do my best to keep updating Facebook and the blog.

We are to arrive at CHOP at 5:30 am.  MRI will begin at 7:00 am.  Surgery is schedule to begin at 8:00 and should take about 4 hours.

Below are some pictures from today.  Please stand firm with us...we will not be shaken!

"Truly He is rock and my salvation; He is my fortress, I WILL NOT be shaken." ~Psalms 62:6