Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon


The way is not in the sky. The way is in the heart.

-Buddha



Sunday, April 28, 2013

God, please have mercy on my child...



I pray the same prayer each day when I wake up and each night before I go to sleep....God, please have mercy on my child.  Stand guard over him and continue to protect his heart.  ~Amen


For the past two weeks, I have been waiting on a phone call from Xavier's cardiologist.  She was going to have a meeting with his surgeon and make sure that he was on board for doing Xavier's fontan and valve repair late this summer.  This week she finally called, but the outcome was not at all what we expected.

"It is the teams assessment that separating the procedures is the best path for Xavier's heart and for an optimal recovery."

Breath, Jackie Breath..keep it together.  Do not fall apart yet...get off the phone first...just say thank you and hang up....

So basically, instead of having one large, two procedure open heart surgery at the end of the summer, Xavier will be having two open heart surgeries.

The first, the valve repair,  will happen soon...2-4 weeks.  We are currently waiting on the scheduling center to call with an official date.   I expect that to happen this week.  The stage three fontan has been pushed back till next summer.

We are not thrilled that little man will have to have an extra open heart procedure, but we have faith in God and in our team that this path is the best one for him.  He is expected to be in the hospital for 7-10 days following surgery.  I will update the blog during and following the surgery.

Please continue to pray for us.  For strength for the whole family.  Pray for our surgical team, that God may guide and direct their decisions and their hands while Xavier is in their care.  That God may fill the OR and place his hands upon Xavier's heart, allowing it to respond to the surgery in a positive way and that this repair will help Xavier to feel his best.   Pray for peace for Xavier while he recovers and peace for us while we hold his hand.  Prays for an infection free recovery, that is speedy.  Home is where Xavier will want to be, so I hope that we can get back to our lives quickly.

Life with a "medically fragile" child is never certain.  There will always be something on the horizon.  There will always be another upcoming appointment that has us nervous, always be an upcoming MRI, cath, procedure.  We live in the land of possible pace makers, surgeries, transplants.  Our goal is to live as normally as we can, while always living in reality.  Our goal is to make sure Xavier gets the most out of life, while still protecting him.  I hope that I can master the ability of protecting him, without him knowing it!!!

The next month will be a hard one...it is possible that X will have to spend his second birthday in the hospital.  However, my faith is strong, his will is strong and our community and support system stands strong behind us.

God, please have mercy on my child!  Stand guard over him and continue to protect his heart.  ~Amen




Friday, April 19, 2013

Birthday Ideas




Xavier will soon be turning 2!!!  I can't believe it!!  We are so blessed!  Lots of people have been sending me messages and calling me about suggestions for gifts for Xavier's birthday.  Please know that your love, support and prayers are MORE then enough.  We can not even begin to thank all of you for being a part of our journey.  However, if you insist on getting him something...gift cards are always great.  If however getting a toy is something you enjoy, I will provide some links to things that his therapist think would help aid in his development.  Thank you again so much for your support!  We are very blessed!!


http://www.amazon.com/Zip-Line-David-Humpherys/dp/1479196096  - This is a link to a book called Zip Line, about a little girl with a heart condition.  It will help us prepare X for the hospital!


http://www.walmart.com/ip/729845?wmlspartner=wlpa&adid=22222222227000000000&wl0=&wl1=g&wl2=&wl3=21486607510&wl4=&wl5=pla&veh=sem - This is another book that will help X get ready for the hospital.

http://www.toysrus.com/product/index.jsp?productId=3872808&searchURL=false


http://www1.macys.com/shop/product/melissa-and-doug-kids-toy-happy-giddy-cart?ID=675172&cm_mmc=Google_Seasonal_PLA-_-PLA_General+PLA-_-13472309675_-_-_mkwid_YE14AvJk_13472309675%7C-%7CYE14AvJk&gclid=CK_TqPrk17YCFVLNOgodmF4Aaw


http://www.walmart.com/ip/17510730?wmlspartner=wlpa&adid=22222222227000000000&wl0=&wl1=g&wl2=&wl3=21486607510&wl4=&wl5=pla&veh=sem

http://www.walmart.com/ip/Play-Doh-24-Pack-of-Colors/14689691

http://www.walmart.com/ip/Little-Tikes-Anchors-Away-Pirate-Ship/22394126

http://www.walmart.com/ip/Little-Tikes-Sandy-Lagoon-Waterpark/19398205

http://www.ebeanstalk.com/Alex/toy-product-detail/Its-A-Match.html

http://www.amazon.com/Step2-Piece-Play-Food-Assortment/dp/B0029ZAP40/ref=sr_1_18?s=toys-and-games&ie=UTF8&qid=1366411426&sr=1-18

http://www.target.com/p/animal-planet-backpack-harness-lion/-/A-13990029#?lnk=sc_qi_detaillink

http://sesamestreet.shop.pbskids.org/dvds-cds/sesame-street-elmo-s-potty-time-dvd.html

http://www.barnesandnoble.com/w/dvd-curious-george-goes-to-the-hospital-john-matthews/11200555?ean=84296406630

http://www.buybuybaby.com/product.asp?sku=17081721&utm_source=google&utm_medium=cse&utm_term=17081721&zmam=11292801&zmas=1&zmac=3&zmap=17081721&utm_term=&device={device}&network={network}&matchtype={matchtype}&gclid=CM2A2YD117YCFa5QOgodCxEA-Q

Saturday, April 13, 2013

WHAT IF?????

Last Monday night I felt ill.  I have not felt this kinda of feeling in a while.  I cried at the silliest things, felt sick all day and when I went to sleep all I could think about were the things that COULD go wrong the next day. We were leaving bright and early for CHOP to have a full cardiology appointment.

Laying in bed all I could think was..."what if his heart function got worse?  What if that valve looks worse?  What if they say he needs his fontan NOW?  What if they admit us?  We didn't go to the zoo or the aquarium yet!  We are planning a superhero birthday party...what if he isn't home to go???"  WHAT IF??????????

When I was a teacher in a classroom everyday with first graders, I use to tell them to keep their WHAT IF questions to themselves until they happened.  We would deal with them together when we needed to.  "Mrs. Ross, WHAT IF my seed doesn't grow?  WHAT IF I don't finish on time?  WHAT IF I am sick and I can't go on the field trip....."  Funny how we have such a hard time taking our own advice.  Pushing away those WHAT IF's is easier said then done!

My anxiety level was through the roof as we pulled into the parking garage at CHOP.  I was so distracted by my own worries that I left the house without a binky (very important for Xavier when he is scared) and the STROLLER of all things.   Poor Nate had to do most of the carrying our 22 pound, solid toddler through the hospital...he did it with a smile on his face!!!!

We walked into the outpatient center (which still has a huge poster of our boy in the waiting area..I had to fight the urge to take yet another picture of it) and waited to be taken back.  My anxiety is not just what will the outcome be, but just how bumpy will the road be????  Xavier is NOT a fan of doctors or nurses, or any person who might resemble one.  He likes people, but likes to be in control of the situation, going up to and playing with them when he is ready.  After 6 months, he is just now comfortable with our therapists.   So getting accurate test results are NEVER easy.  We usually have to stand on our head to just get a few good pictures of his heart, and forget about an EKG..we usually only get one when he is sedated 

The nurse called us back and as soon as X saw the pulse ox, he cried (we no longer have one at home, I really think he would get better at having it done if we had one at home...yet another point in my argument to get the doctor to write us a script for one!!!)  Blood pressure was first...NIGHTMARE!  He hates it, which I think most kiddos do.  I really don't care for it myself.  We got one in the leg, but the arm was a no go.  He also fought the pulse ox, however it was better.  We got a number of 78, but the nurse said it was not accurate, because he kept his toe bent and moving the whole time.  The doc, just by looking at him said it was at least 80-82.  That is just about where he sits normally.  We weighted him, and although he is getting longer, we can't seem to get away from 22 pounds.  That is very frustrating!!!

Finally it was echo time!  We walked back to the room and he got very tense.  I sat on the table and held him in my lap...He kept trying to struggle to sit up.  We put the Disney Channel on the TV, gave him some milk and he just laid down on my chest.  And he was perfect.  I prayed through the whole thing.  He laid there for 25 minutes and let the tech get all the pictures she needed...He didn't even make a whimper when she lowed the table so we were laying flat so she could get under his chin.  He just let her do what she needed to do.  When she was done, we praised him over and over for his good behavior.  I was so proud of him.  As we were walking out, I told Nate there is NO WAY he is gonna be so this good for the EKG...We just used up all our perfect child points!!!

We walked back to the room and broke out the i pad.   He sat so nicely and played.  When the EKG tech came in, I was happy to see she was young and cute...just how X likes his nurses!!!  She was so sweet with him.  She let him sit on my lap with the i pad and in a soft voice she talked with him about the game he was playing and lightly placed the stickers on his chest.  He watched her as she hooked up the wires, but never tired to take them off or get away.   Before we knew it, she was done and taking the wires off.  He helped her take the stickers off and put them on Daddy...He was just so perfect!!!!

The day continued to go well when he allowed not only our cardiologist, but a doctor shadowing her to examine him and listen to his heart.  Our cardiologist let us know that his heart function was still good, his valve was leaking the same and that from a clinical standpoint he looks great.  She feels we need to do the third stage now while his function is good so that we don't risk wearing his heart out.  She is not sure about the valve repair, our surgeon will make the call when Xavier is open and on the table.  He needs to look directly at his heart to decide what type of repair, if any, he needs.  The type of Fontan Xavier will have is called extra-cardiac.  I am still in the process of learning what exactly will happen during this surgery.  It is all very intense.  But our cardiologist thinks that Xavier will do well and that we should expect a 2 week stay.  She was speaking with our surgeon this week and going to submit the paper work. We are looking at a late summer, early fall surgery.  That gives us time to have a nice summer and avoid cold and flu season!

This is part of this journey that we always knew would happen, but it does not make it any easier.  Xavier is a little man, with a personality and a future that I think about often.  He is my best friend and just the thought of him being in pain or scared rocks me to my core.  SO until we the day comes that I have to hand him over to a gaggle of anesthesiologists  we are going to make the most of every second!

We have spent the last few beautiful days outside, walking, painting, blowing bubbles and eating snacks.  I know that I can't get away from that WHAT IF thinking...But I will not allow it to get in the way of being in the moment with Xavier.  I will not allow it to take away all the fun that we are planning for this summer.  I know that God has a plan for Xavier...and I have faith that plan is a long one!  Thank you all for your kind thoughts, well wishes and your continued prayers.  We are not walking this path alone, we have a lot of heart friends who will be fontaning with us this spring/summer/fall.  Please remember them in your prayers as well!!!

Walking in the park

 Xavier's healing helper, Eli the elephant!  

 Xavier and Nana!

 Having a picnic in our front yard!

 My silly boy!

 Heart Breaker!  

 Painting a masterpiece!  

 Working on walking with our PT


He is getting so close to walking on his own!

Saturday, April 6, 2013

"SPREAD YOUR WINGS, HOLD YOUR BREATH and ALWAYS TRUST YOUR CAPE"...





“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”
~ Christopher Reeve




I love sleep...I missed it when Xavier was an infant...and I miss it now, every time something MAJOR happens.  He is usually a pretty great sleeper.  But when he is sick, or after the time change or when we are inpatient, his good sleeping takes a hit.

The time changed had him all over the place.  Staying up late, getting up late and napping long.  He is finally back into a rhythm....but NOW I am all over the place.

Lately, I wake in the middle of the night.  It is no longer that panicked, something must be wrong waking that steals your breath and has your heart beating in your throat.  It is more like a thoughtful waking.  I open my eyes and listen to his deep, steady breaths.  Sometimes he "sings" in his sleep...kinda like humming and it makes me smile.  He has recently started giggling and babbling in his sleep.  It brings happy tears to my eyes...and so I lie there, awake, listening to the sounds of peace and life coming from his room.

I often find myself sitting in his rocking chair, watching his chest rise and fall.  The sign new moms and heart moms look for when we check on the well being of our motionless, sleeping child.  It's like a big neon signing that says "2:00 am and all is well".  He always look so comfy, so at ease, that I wish I were small enough to crawl in with him.

Xavier sleeping with Eli...his healing helper..he has a chest scar and a mended heart!

As we get closer to Fontan (yuck), I have been breaking the mommy code of disturbing a sleeping baby, by picking him up and sitting with him in the rocking chair.  I breath in his sweetness and match my breathing with his.  I sit and pray over my not so little man.  Begging God to get me through this.  I know that God will be with Xavier...He IS every second of everyday....the miracle that is his life cannot be explained in any other way.  God created Xavier perfectly for the path that is his to walk.  SO I have stopped worrying about God carrying him through...and much more focused on God walking with me.


When we first started talking about the F word, I prayed for God to walk with me.  Now as some of our own have just had or are day and weeks away from surgery, I am asking God to pick me up and carry me. I wonder just how I will do it this time.   Am I going to be able to find that super mom inside all of us to keep it together, to hand him over, to JUST sit and wait for word.  Am I going to be able to sit with him, see him hurt, hear him cry and not shatter into a million tiny pieces?  He is older now, and although he does not talk much, he understands everything. How will I explain to him when he looks at me with wide eyes, why I am letting all these people hurt him, hold him down... Can I, once again, find the strength inside me to except that this is what MUST happen in order for us to move forward...I CAN AND I WILL..there is no other option!

 Post Fontan is, for most, the land of milk and honey.  It is what we have been aiming for since January of 2011, when we heard the letters HLHS in relation to our unborn baby, moving, and swimming without a care inside me.  I made a promise to that little banana (the Bump says a 20 week old fetus is the size of a banana) that I would be strong for him, I would move mountains to give him a great, long life.  I was in it 100% then and I still am.

So I will be strong, I will be tough, I will put on my mask and cape and I will spread my wings and fly.  We will live in that hospital and make it Disney World for him.  We will sing and play and ignore the tube in his chest, the lines in his heart and the needles in his hands.  We will walk, although it will hurt, we will paint although all we want to do is sleep. And I will beg him to eat and drink and he will laugh at me and shake his head no.  And all will be right in OUR world.

Together, with my family, friends and heart moms, we will make it to the other side.  The light at the end of the tunnel.  Because, although he looks good to most, I see the toll that the Glen circulation is taking on his body.  He gets tired easier, he looks dusky and his breathing is faster.  His lips are getting blue now instead of just his finger and toes.  His valve needs fixed and his heart is ready for the final stage.  It is time.  And we will except this as God's plan and we will stand that edge and jump...and we will fly!!!

"SPREAD YOUR WINGS, HOLD YOUR BREATH and ALWAYS TRUST YOUR CAPE ~The Cape by Kathy Mattea