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

Super Hero's UNITE!!!

Two years old...its almost too much for me to wrap my mind around.  Our little miracle, our blessing is two!  There was a time when I begged God for two minutes with him..I just wanted to see him and tell him how much I loved him and how hard I fought for him.  Then I begged for two days, two weeks, two months....but I never imagined on that cold day in January, 2011 that we would be blessed with two years.  And now I want two lifetimes with Xavier...I have become very very greedy!  

In the weeks leading up to his second birthday, Xavier had a developmental spurt.  He can now sign 10 words, including thank you, dog and bubbles.  He is walking much better, thanks to him sure step braces that he wears on his ankles.  He is so close to walking without support.  He has been standing independently, coloring everyday, using his magna doodle and clapping at EVERYTHING!!!  He is such a joy and a pleasure to send the day with.  His new favorite thing to do is to draw with sidewalk chalk.

We are doing our best to make the most of what little summer Xavier will have.  After his surgery, which will be on June 19th...(I can't be 100% sure, but I heard that he will be first case that morning), he will have many restrictions that will limit his activity.  He will not be able to be out in the heat and humidity, he will not be able to be submerged in water for 6-8 weeks and we will not be able to pick him up under the arms for 6-8 (that will be near impossible).  We are asking everyone who loves and supports Xavier to wear their Team Xavier T shirts on the day of surgery...OR if you do not have a Team X shirt (shame on you..LOL) then please wear RED and BLACK that day to show your support.  PLEASE send your pictures to my email (jackielynnj@hotmail.com) OR post them on my facebook page:  https://www.facebook.com/jlynn.ross.1  or Xavier's facebook page:  https://www.facebook.com/TeamXtremeFriendsFamilyAndFansOfXavierThomasRoss

Thank you all for the love and support you have shown us.  We need all the love and positive energy we can get.

 Heart Mom and Heart Kids!!