Can't stop the crazy train...

Sometimes I feel like I am riding on an out of control train...ripping down the tracks.  I couldn't get off even if I wanted to.  Time goes by so fast.  Whizzing past me so fast I have a hard time making out what I see around me.  We are ALWAYS on the move, even if we never leave the house.  If you factor in all the doctor visits, trips to CHOP, therapy sessions, and the play we do....we barely have time to breath.

In early January we headed back to the cardiac center at CHOP for a cardiology checkup.  Things look the same for Xavier's heart.  The doctor decided to increase a medicine that might help his leaky valve and talked about how good he looks.

She then took a deep breath and said "I think we should repair the valve ..and I think that we should just do it at the same time as his fontan (stage 3 in his surgeries).  "Okay", we said sounds good.  She then followed up with "SO how does early Summer sound, around July?"  I am a pro at holding  my emotions (with a ton of practice)  I think Nate and I were able to squeak out "If you think that's what is best...let's do it!"

So we head back in April for another ECHO and to plan things out.  He will most likely be admitted a few days early, have a cath just to make sure he is still a candidate for the repair (add that to the list of worries) and then will get his repair.  Our doctor thinks that given his history he should have a fairly easy recovery, but we all know that we never really know.  But she guesses he should be in for about a week.  It makes me very sad, anxious, excited (for it to be over) and brings on all the fears that I tucked away.  BUT we know that this is what we need for Xavier to be healthy and to be the best he can be.  So we except it and we move on.  We plan for it and try to make his life as normal as possible leading up to it.  He will only be a little over two...its going to be so hard this time cause he gets it.  He is scared of the hospital and anyone is a white coat or scrubs!  Poor pickle!!!


But on a happier note, Xavier and some of his heart brothers and sisters were part of a photo shoot a few weeks ago for CHOP.  February is pediatric heart month and February 7-14th is CHD week.  The cardiac center is doing a social media campaign to raise money for the center.  They took a ton of pictures of some super cute heart babies and kiddos and they will be posted sometimes in February.  I will be sure to provide links and pictures here when I get them!  Our X is such a rock star!!!

Also Xavier has been doing a ton in his therapy.  He can climb the stairs (hands and knees), is walking with his walker...and took a few steps to Nate, while holding onto our therapist.  I missed it cause I went back to work (part time).  :(    He is showing progress every day...and we could not be more proud of him and all his hard work!!!  We see three soon to be four different therapist a week.  It can be a lot, but we hope that he will catch up in the next year or two.

Finally, we are beyond humbled and honored to be the next family for Hayden's Heart Inc.  This amazing foundation was started by my dear friend Ady...who some of you might remember from some of my posts late summer.  Ady lost her sweet heart warrior, Hayden in August.  Hayden, Ady and their entire family are very near to my heart.  I love Hayden so much and to be a part of his name sake is such an honor.  They will be hosting a Zumbathon for Xavier in February.  I am so excited to be a part of it and I am so grateful to Ady for all she is doing.  Hayden continues to change the world...The event will be on February 23rd and will be held at the gym of the North Arlington HS in North Arlington, NJ...please message me for details!

Finally please be sure to check the blog everyday in February.  I will be posting the journey's of some of the other heart warriors that I have come to know in my time as a heart mom.  They will be from different places around the world, get treatment at different hospitals, have different CHD's, but we all share the same journey....they are amazing kids and I want to celebrate them....in honor of CHD awareness....SO PLEASE come and read their stories...and get inspired!!!

 So there you have it..our crazy train life...and I would not want it any other way...please continue to pray for my hero, my best buddy and my reason for living...my sweet Xavier...we appreciate all the love you have shown us...and we are happy that you are part of our journey!!!

All our love and heart hugs...
The Ross Family

This is a song for the brokenhearted....

January is a weird month for us.  Three years ago, on Martin Luther King Day, our regular OB was sure it was "just his face down position" that was making it hard to see the left side of his heart...I am sick to my stomach just thinking about it.  I just knew..I knew by the way the ultra sound tech kept spending so much time with his heart, how she took in a long deep breath when Nate asked if everything was okay..and the answer will forever play in my mind..."the doctor will go over everything with you"...

Our OB made up an appointment with a high risk doctor.  It would be in two days...I spent those days telling myself that everything was okay...praying and crying when I was alone..  like a blessing from heaven it snowed the next day and school was closed for two days...I could not imagine having to go to work with this unknown hanging over my head.

That Wednesday we had our high risk appointment and that was the day my sons broken heart, broke mine as well.  And just like Xavier's, my heart will never be fixed..it will never be whole again.   Please do not think that my heart is not full and blessed, because it is...its just not whole.  No mother who has to sign a paper saying they understand that a risk of what is about to happen to their newborn is death, can ever really be whole again.  No mother who has to put their 4 day old baby in the arms of a stranger, begging them to please bring him back, can ever really be whole again.  No mother who watches their child silently cry in pain over a vent, will ever be the same again.  No mother who holds their child down to have their blood taken yet again, can feel truly whole.  No mother who uses words like seizure, stroke, cardiac arrest, blood clots, heart failure and transplant when talking about their newborn, 4 month old, 10 month old, one year old, 15 years old, 20 year old child can every truly be the same.

My heart is broken, never to be made whole again...Xavier's heart is broken, never to be made whole again...but.... every time he recovers, my heart gets a band aide .. every time he is discharged, my heart is mended....every time he reaches a milestone, my heart gets a stitch...every time he giggles at me my heart is pieced back together.

SO our hearts are broken, but mended.  Our hearts are not whole, but they are full.  Our hearts are imperfectly perfect, beautifully broken, wonderfully made and artfully mended by the hands of God.  I will never be the same as I was before that appointment three years ago...I will continue to get better because of my broken heart!!

And to all a good night..sort of

On a cold, clear December afternoon, we packed up the car, packed up Xavier and all his essential items and headed over the river and through the woods to Nana's house for a good old fashion Christmas in the country.  We made great time and Xavier was great in the car.  We said our hellos, had dinner and all seemed well, except for the fact that Xavier didn't seem interested in eating, but he is never a great eater and usually struggles to eat well when we are away from home, so I thought nothing of it.  It was bath time, a time he usually loves, but he was fussy and kept trying to climb out of the tub..not himself at all.  We did our usual bedtime routine, meds, shot, lotion, PJ's, brush teeth...and I could see he was getting very sleepy.  I fixed him and bottle and he snuggled up on the rocking chair with his Nana...he was almost asleep when.....he threw up all over his Nana...Nate ran to pick him up and he continued to throw up on Nate.

Back into the tub to clean up....but it would prove to be a night of cleaning up...poor guy was very sick with a stomach bug...By Sunday afternoon, he was feeling much better...starting to keep milk down...we dodged a bullet  because he had a fever that came down and stayed down and he was able to keep little sips of water and milk down, so he never dehydrated...We stayed clear of the hospital and for that we are very grateful....

However by Sunday night, I had the flu...by Monday morning my nephew had it.  Soon to follow were my brother, mother and father....the only one to escape its wrath was Nate...he must be super human cause he got thrown up on a lot and my nephew hung on his all week!!!

But even though we were all sick for a day or two...we had a very blessed holiday.  We just spent time together.  Xavier just loves his Nana and has a new found love for his PAP PAP...  We got to spend some time with Mam MA, Xavier's great grandmother and we had a nice Christmas Eve dinner with Aunt Gerry, Michael and Uncle Ed.  Santa was very good to all of us this year...and we feel humbled that we had our special Xavier with us for yet another Christmas.  We pray that 2013 will be a year of healing, peace, love, joy and growing for Xavier.  We wish the same for all of you.  Thank you for following us on our journey, for loving and supporting Xavier, for the prayer for our family.  We feel the love and hope that you will continue to follow our blog and invite your friends to do the same.  I hope to continue to spread CHD awareness this year!

 Playing with Nana

 Christmas Eve

 Not so sure about this Santa...

 So he knocked him over!

 Thank You Aunt Gerry

 A baby in a box!

 Christmas Morning!

 Christmas is exhausting!

 Love your heart..he could have cared less..guess this one was more for me!

And as soon as we got home from Nana's....it snowed!!!!!  We had one major snowstorm last year...on HALLOWEEN..which was one week post OP from Xavier's Glen..so we could not take him outside to play.  SO here are some pictures from his first time playing in the snow!!!