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