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



Saturday, January 28, 2012

My how we change..(check often for updates)

Look at how far our little peanut has come!!

 I was 5 weeks pregnant at Auntie Shayna's wedding!
 13 weeks
 26 weeks
 29 weeks
30 weeks

 38 weeks
 BIRTHDAY
1 day old
4 days old (headed into surgery)
2 weeks old
 3 weeks old
 1  month old
 2 months old
3 months old
 4 months old
5 months old
6 months old
7 months old
8 months old

And the story continue....

Tuesday, January 24, 2012

This is the day that the Lord has made!

2012 has been good to us so far.  Xavier has been spending Wednesday afternoons with his physical therapist.  She is amazing.  She took one look at him and said, "well its obvious to me that his delay in fine and gross motor skills are completely related to his hospital stays and restrictions."  That made this Mamma feel better.  I spend almost all day on the floor with him, playing and exposing him to new things.  I was afraid that I wasn't doing enough.  I had to stop comparing him to other babies his age because well lets face it, he is much different from them.  He has been through so much and after each surgery he has so many restrictions put on him because of the incision site.  So Kate, our PT spent one hour with him and he was was rolling on his own from his back to his belly.  She came back and spent another hour with him and he was rolling both ways.  She feels confident that he will be "caught up" by spring.
Things were a little rough on me post Glen, mainly because his stats were up and down and he had a hard time sleeping.  It took about two and a half months for him to level out, but now at 3 1/2 months post Glen he is a different kid.  He is sleeping much better, super happy and his heart rate is starting to come down.  He is eating solid foods.  He loves his oatmeal and sweet potatoes.  The only thing he doesn't like is peas, so I have been mixing them in with the carrots.  He loves it when Nate and I eat at the same time as him...and with every bit he gives us a "mmmmmm."
Xavier is so close to sitting up on his own.  We have been working hard to help to build the muscles in his belly and around his incision site.  Kate seems to think he will be sitting and crawling by the end of February.  She said that he is very advanced cognitively and socially.  She was impressed by how aware he is and how interested  he is in things around him.  If it sounds like I am bragging, I am.  I am so proud of him.  He is an amazing little guy.  I hear often of little ones who are struggling or who are still in the hospital.  I hear daily of families who have to say goodbye to their warriors.  Babies earn their angle wings way too often in our community.  I get on my knees every day and thank God that he picked me to be Xavier's mommy and that he gave us all this time with him.  I will not waste a single minute.  I write this blog for many reasons.  I write it for myself, as a way to get what I am feeling out.  I write it for X, so that he has something to help him understand how strong he is.  I write it for all our friends and family who are away from us, so they can know all the amazing things that X-man is doing.  I write it to help new heart mommies.  I write to give others hope for the future.  I write it so that people will be inspired to live better lives.  I hope that this blog and Xavier are an inspiration to all of you who follow our story!!  May God bless all of you!  This is the day that the Lord has made, we will rejoice and be glad in it!




Sunday, January 15, 2012

Bring it 2012

Happy New Year!!  What a crazy wild ride 2011 was.  I want to take a moment to personally thank all of you who prayed for us and walked along with us during this trying year.  I can't believe that I am saying this, but I am thankful for 2011.  It brought me my heart and soul, Xavier.  It brought so many wonderful woman who were kind enough to share their journey as a heart mom with me.  It brought me some amazing new friends, Stacie Jackley, Stacey Lihn, Melissa Murphy, Pauliana Catarina Cristao, Britt Duchene and all my Sisters By Heart.  It made me a brand new person, a stronger person.  I have done things that I never thought I could have done.  I am sure that I am a better mommy because of the strength and fight I got to witness in Xavier.  I fell more in love with my husband as I watched him sit next to Xavier's bed.  Every time that I see him with Xavier, I just melt.  You can't even imagine the look on Xavier's face when Nate walks into the room. Nathan has had to work so hard to supplement me not working, and he does so willingly without complaining.  What an amazing man I married.

2011 was the year of the hospital.  We spent so many hours in doctor's offices.  Before X was born we were at Columbia and CHOP.  My regular OB, the high risk OB and the special delivery unit at CHOP.  We spent a week or so at the Holiday Inn in Cherry Hill and a month at Ronald McDonald house.  Xavier  spent the first month of his life at CHOP and another week when he was 3 months old.  And again he was there for another week for his Glen.

During 2011 Xavier had one heart catheterization, 2 sets of PICC lines, three visit to the heart clinic, 15 echo's, one emergency room visit, one general surgery, was admitted to the hospital three times, 25 blood draws, 15 EKG's, three blood transfusions, 4 tube's inserted and 4 tube's removed, was on a ventilator for a week, had two open heart surgeries, had 2 MRI's, countless lovenox injections, a feeding tube inserted and removed more times then he should have had to, 2 rounds of RSV vaccinations, 2 rounds of flu vaccinations, his 2 month, 4 month and 6 month shots and had his O2 stats taken more then I can remember.
That is enough for a few lifetimes, yet he continues to laugh and smile.  And that is all that really matters, right. That he enjoys the life that we all fought so hard to give him.  I take ZERO credit.  God, CHOP and of course our little warrior X-man get all the credit.  I am just thankful that he loves me and lets me be his mommy.  Here's to a hospital free year...BRING IT ON 2012!

Tis the season to be Jolly...





What a wonderful holiday season we had.  It was picture perfect.  I would have been happy with a little more snow, but we had such an amazing time with our family.  We started off heading to Rhode Island.  We left at night so that Xavier could sleep and that is just what he did.  It was so great to spend time with Nate's parents who we have not seen since after we got home from the Glen.  They are so good with Xavier.  It took all of three minutes for him to warm up to them.  We also got to spend a little time with Auntie Shayna and Uncle Charlie who are excitedly awaiting the birth of their first child in February.  Xavier got to meet tons of his extended family.  He was so good...and everyone loved seeing him.  We were blessed to be able to spend a whole week up north.  Nate was able to work from his parents house and the band took a much needed holiday break.  On Christmas Eve, I was very emotional.  Christmas was a time that I was not too sure we would get to.  Actually standing at his crib, watching him sleep on Christmas Eve took me back to the day we got his diagnosis.  I was so scared and I was not sure that I was built to deal with all this.  I remember thinking, How can I live in hospital, How can I watch my baby suffer, How can I take care of him.  I have say I have impressed myself.  But I don't do this alone.  I have so much support.  If you have to live at a hospital, CHOP is the place to be.  Great food, awesome coffer 24 hours and people who do their best to make you feel at home.  CHOP took such amazing care of him.  They kept him comfortable while he recovered.  They taught me how to check his stats, give him his shots, deal with his feeding tube, take care of his incision, taught me what to look for in order to keep safe between surgeries.  They gave me a crash course in the heart and they were there to answer all of my questions.  Our cardiologist in Livingston, Dr. Fernandes, takes my calls at all times of the day and night.  He loves X as much as we do.  Our pediatrician, Dr. Kint, took the time to get to know Xavier and us.  They see me right away if I am worried at all.  My mother who travels 4 hours one weekend a month just so I can sleep or shower or actually go get  my hair done.  She visits with us and helps me with the house work.  Plus X loves her to pieces.  Nate's parents who we skype with all the time.  They shower Xavier with love and us with support.  Even though they are far away, I know with all my  heart that they would drop everything and come up north if we needed them to.  Our extended family and friends who pray for us and Xavier every day.  Even though X is doing well, we do not stop praying that God will continue to hold him tight, that he will continue to bless him with that perfect health that God alone can provide.  We praise God for all the blessings and the miracle that we have here on Earth.





















We heading back to Jersey for just a night and then we hit the road again, this time to BTC!!!  We got to spend a few days there with my family.  It was so great to see everyone.  My grandmother just gushes all over Xavier.  She was so happy that she was feeling up to holding him.  Connor was happy to see his baby cousin.  Xavier got to meet some of my friends from high school.  It was an all around great time.  I know that I seem to be saying the same thing on every post, but I AM SO THANKFUL!!!  IT WAS THE BEST CHRISTMAS EVER!!!