We are forever connected...forever family!

It never gets easy..when we in the heart community have to say goodbye to one of our own.  A baby and family who we have laughed with and cried with.  A journey that we have all taken, together.   We celebrate each others victories and give advise about the difficulties our children are facing.  We cry together when the fear and anxiety gets to be too much. Some we never meet, yet we feel so close.  Some we do meet and because instant friends.  That was my experience with Ady.  From the moment we met, we were connected, we were family.

Today, we celebrated the life of Hayden Jeter Dorsett.  I sat in the back of the service, alone and quite.  I promised myself that I would not break down, not allow my fear and sadness for myself or  for my dear friend to break the walls that I had spent days building up.  I ache when I think that I made many promises to Ady that I was unable to keep.  I promised her that Hayden would survive this.  That our boys would be the success stories that other families would cling to.  I promised they would grow up together, leaning on each other.  I promised that they would be kindred spirits...brought together by fate and a special heart.

I wish I could have kept these promises..

The services was breathtaking.  The room was filled with Hayden's smiling face.  A beautiful slide show playing.  Flowers and keepsakes that belong to Hayden about the room.  You could feel Hayden in that room.  When someone is loved that much, they are never far from us.  Just a memory away.  I have many memories of Hayden that I will carry with me.  Ady, Rob and Jackson will always be family to us.  We have walked the same road, felt the same feelings...and although our paths have taken different directions, we are forever connected...forever family.

As I held my dear friend today..I made her more promises that I know I will keep.  Xavier will grow up knowing Hayden.  We will talk of him with love and pride daily.  We will speak to him in our prayers.  We will send him birthday balloons every year.  We will remain close with the Ady, Rob and Jackson.  Jackson and Xavier will be friend.  We will spend time together.  We will cry...but we will laugh again.  Xavier and Hayden brought us together...and together we shall remain.

Thank you Hayden for bringing me to your mommy.  Thank you for opening up my heart a little more.  Thank you Ady for allowing me to know Hayden and for loving Xavier....Thank you for being my friend and for loving me.  As heart moms we are connected in a way that few will understand.  We are forever connected...forever family!

"It is not the length of life, but the depth of life which matters."

Hayden Jeter Dorsett

March 12, 2012- August 16, 2012

A union built on strength and courage..

Three years ago today, I stood in front of my family and friends and promised to to love and stand next to Nathan through good times and bad...and we had no clue how bad it would get.  But now I can honestly say that we also had no idea how GOOD it could be.

Our wedding was a perfect day.  It was so us.  It was a party..live music, great food, drinks for everyone and all the people we loved in one room.  We have been standing strong ever since.  Our marriage was put to the ultimate test when we found out about Xavier's heart.  I can honestly say that  I saw what a real man Nathan is the day we got the diagnosis.  He allowed me to fall apart and stood ready to pick up the pieces, never mind that his world was crashing around him.  He never left my side during labor and stayed with Xavier late into the night while I got some sleep.  He is an amazing father..Xavier just lights up when he walks into a room.  He balances my crazy just right...allowing me to be the super overprotective mother that I need to be while calming the storm that rages inside me when I get the "feeling" that something might be wrong with Xavier.  He works so hard so that I can stay home with Xavier and keep him germ free.  He holds me close when I need to cry and always knows what to say to make me smile.  This heart parent journey is not an easy one.  It is not for the weak at heart or weak of spirit.  It took our marriage and our faith to the edge..and here we stand solid on such rocky ground.  I would have never been able to make it though the storm or find the courage to dance in the rain without him.

Thank you Nate for holding my hand and never letting go...

"Being deeply loved by someone gives you strength, while loving someone deeply gives you courage" - Lao Tuz

We are the brokenhearted..

" The Lord is near to the brokenhearted and saves the crushed in spirit" Psalm 34:18

We often use the term brokenhearted to describe our babies.  However, having a baby with a broken heart, is a domino effect...Xavier's broken heart, broke my heart, broke Nate's heart, broke the hearts of our parents and families...and when we meet another family of the brokenhearted, our hearts break all over again.

Today my heart breaks in that all too familiar way for a heart baby whom has become very special to me and for his family who I am come to call my friends.  I just saw Hayden, who I lovingly refer to as my boyfriend, because I am convinced that the first time we met at the park he winked at me!  I have been madly in love ever since!!  We all spent some time together last week...walking, playing, talking about how well our boys did with their Glen, how much they smile and how strong they are.  We made plans for a BBQ  and for the family to visit us in our new house.  I left Hayden and his mommy that day with a hug and a promise to "see ya soon!"

Now Hayden is fighting for his life.  And I sit at home wishing I could just do something...fighting the urge to get in the car and drive to CHOP to be there for my friend.  I sit by the phone, praying that we get a call or text with good news...news that our prayers have been heard and that Hayden got his miracle in time.

I just wish I would have held Ady a little closer, done more to let her know how much she means to me.  I wish I could have made an effort to spend more time with Hayden.  I wish the boys could have spent more time together.  I wish we would have thought to take a picture of them together.  I have not given up on Hayden...his spirit is unbelievable.  His light shines so bright.  If ever there was a spirit, a light that can overcome..it is his.  

Please pray for our friend, for his family, for his doctors.  We will fight hard, because our children fight harder!  There are other, like my friends, who are fighting today.  Please pray for the brokenhearted!

The heART of preparedness

"The most prepared are the most dedicated"  Raymond Berry

If there were a masters class on the art of being prepared, a heart mom would most defiantly be the professor.  From the moment you hear those words "there is something wrong with your babies heart" you go into super prepare mode.  At first you do the one thing they tell you not to do...you Google..and then you fall apart at the seams...  You start looking at all the post op pictures you can find.  You talk with all the heart moms that you connect with via facebook and other organizations, your heart skips a beat as your read a blog about a warrior turned angle and say a silent prayer of praise when you read a success story.  You start to build your thick skin, playing a scene over and over again in your head that you have not yet lived..handing your tiny, only days old baby, over to faceless figures in scrubs and masks.  You prepare for the worse and can't bare to hope for the best.

As your laying in that hospital bed, waiting on the next shot of pain to take over, your preparing your mind and heart..."don't get attached, don't get attached"  although you know it is hopeless and the second they lay that tiny body on your chest, all that work you have done to prepare goes the window.     You spend a few beautiful days holding and loving your new child, enjoying every second together.  However, in the back of your mind you know you must prepare.  Prepare for the day when your worse nightmare becomes your reality and they take him.  You prepare yourself for "the talk" with the surgeon...when risks of the procedure are discussed:  cardiac arrest, seizure, stroke, infection....death.  The waiting is the worst part, all you can do is pray and prepare.  Finally they take him away and you spend 6 long hours preparing for the next time the phone rings..what will they say, how will I handle bad news, can I really go home without him.

Finally you talk to the surgeon..."things when well...the next few days will be the most critical..." You prepare yourself, your husband, your family for what your baby will look like...motionless, tubes, wires, beeps, wounds.....plead with yourself not to cry...not now...wait till the sun goes down...wait till your pumping..alone with your fear.  You prepared for the battle...but now the real war begins.

In the hospital you prepare to take him home.  You attend classes, CPR, how to insert the feeding tube, how to give your 6 pound baby shots in his legs, how to use the feeding pump, the scale.  You prepare to recognize the signs of distress, heart failure, stroke, seizure...you write down every word, make notes over notes, beg the nurse to please go over it just once more time with you.  You recite the medicine schedule over and over till you are saying it in your sleep...You prepare so that you can keep your child alive...if we can just make it to stage two!!!.....

Then you get the call...its time to come back.  Prepare yourself to do it all over again.  Prepare for the headaches, the crying out, the bulging eyes, the low O2.....prepare for battle yet again!!

Home again...now we must prepare him...milestones have come and gone...he is still so far behind.  It's time to prepare his little body for things that should come naturally.  He isn't rolling over...why isn't he sitting on his own...he will not bear weight on his legs..."what am I doing wrong...I didn't prepare him enough..I failed him..I am strong enough for this."

I think as heart moms we are always in the act of preparing...but we are never really prepared.  We hold our breath each time they place our child on the scale...praying that they didn't lose any weight.  We hold our breaths each time we sit our child down to eat...will he eat anything today?  We hold our breaths each time we wrap the pulse ox monitor around their little finger...what if its too low?  We hold our breaths during each ECHO...just hoping the cardiologist smiles and says "see ya in 6 months"...we prepare for the worse; he lost weight, he will not eat, O2 is too low, he needs an MRI, Cath, we prepare ourselves to hear words like heart failure, transplant, valve replacement....

And so we prepare.  We prepare for the worse, for the best and for the unexpected.  We study, we learn, we share and we fight.  Our skins are thick, our hearts are full and our bonds are strong.  We prepare ourselves and we prepare each other.  It is the heart of preparedness that makes us HEART MOMS!!!

With my fellow heart moms, at CHOP's heart and mind education day...we are preparing for Fontan!!

Super X:  Preparing to take over the world

And now the rest of the world knows....

We all know how awesome Xavier is...and now the rest of the world knows too.  CHOP has used X to promote the Cardiac Center...click the links to see!!!

http://www.chop.edu/service/cardiac-center/home.html
Click on the MEET XAVIER section, or the part labeled patient stories

https://www.facebook.com/TheCardiacCenteratCHOP
Have facebook???  X is the cover photo for the Cardiac Center's facebook page.

http://giving.chop.edu/site/PageNavigator/Gift_of_Childhood/Publications/Childrens_View/childrens_view.html

Here is the online version of The Children's View Magazine, use the right side tab to scroll to page 16 to read the story about Xavier!

Summer Fun, Cardiac Catherications and BLESSINGS!

We have been ENJOYING our summer!!!  Last year, we all held down the fort at home.  Only family and our nurse came in, and we only left for doctor appointments and visits to CHOP.  We wrote down every last  detail of Xavier's life.  How much he weighted, how many times he went to the bathroom, how much he ate, how much he slept, his meds....we did everything we could to keep him healthy leading up to his Glen.  This summer we are much more relaxed.  I still write down how much he eats and goes to the bathroom, but he only take two meds and instead we spend the day playing and learning new things.

We just recently got back from a wonderful visit to Rhode Island.  We had the opportunity to see family members that X had never met, we got to spend time with Auntie Shayna and Uncle Charlie, who just bought a beautiful new home and threw Xavier a HUGE birthday bash!!  We spent time with Grammy and Grampy in Rhode Island, laying on the beach, eating great food and SLEEPING IN!!!  Xavier sleeps very well on vacation!!!!!!

 Xavier's first pony ride...Aunt Shayna had a petting zoo at his party!

 Birthday Boy!

 Playing with his friend Charlie and Auntie Sue!

 Xavier LOVES Olivia!

 We love the beach!

  Playing with Grampy!

 Beach Baby!!

 This is the LIFE!!

I am ready for some fun in the sun!!

We got back from Rhode Island just in time to head to CHOP for Xavier's one year Neuro-Cardiac Care Program visit.  I always feel so nervous and worried before any visit, but this visit had me really on edge, because Xavier's favorite Cardiologist and the man who saved his life the night after the Norwood when he had his internal bleeding episode, was not going to be there because of a personal leave from the hospital.  When I see Dr. Wernovsky, I defiantly calm down a little so knowing that he was not going to be there, I spend some time with my old friend ANXIETY!  All in all the appointment went well.  Speech saw Xavier and they were happy with his progress.  We met with a developmental ped. who feels that he is pretty much where he needs to be, but that he is slow to warm up (you think????  He had two open heart surgeries and more pokes and probes then anyone should have their entire life...plus he is one!), PT told us what we already know...Xavier is delayed in gross motor skills, he will continue to see his physical therapist and now he wears shoes when he practices his standing.  He likes to "sit on air" when you try to get him to stand.  When you put heavy shoes on  him, it pulls his legs down and allows him to stand with a little bit of help.  He is getting there!!  We saw our friend and Neurologist Dr. Licht!  Of course he suggests that Xavier stay on the blood thinner Lovenox at least until his next surgery...I feel in my gut that he doesn't need it, but at this point, it is not hurting him and I would never be able to live with myself if we took him off of it and something happened to him!  And finally we saw Dr. Ravishankar, a cardiologist at CHOP.  She was Xavier's attending cardiologist last summer when we were in for a few days because of his blood transfusion.  It was amazing that she remembered everything about him, even the reaction that he had to a certain type of medicine that was giving to during that time.  I felt much better having her look over Xavier's most recent MRI results, because there was some questions as to weather or not he needed a cath to coil some collateral veins that had grown in his heart.  

Clinic visits can be long...so we came armed with Xavier's favorite toys!

She sat down at the computer to look at the film and there is was again...that feeling of Anxiety in my stomach, affecting my breathing.  I kept a smile on my face, but all I wanted to do was grab Xavier and run out of the room!!  She spun her chair around and started talking about the collateral veins and how she was concerned with the amount that he has (based on his age) and that she is recommending a cath to our surgeon, Dr. Gaynor.  She was going to meet with him on Thursday to come up with a plan.  There is also a tiny bit of narrowing at the Glen site, but she isn't sure if it will need any intervention.  She does feel that coiling the collaterials will help with the leak, because there will be less flow in that valve.

Mid-day nap, while waiting to see more doctors!

So last night (Friday) we got the call that he will be having a cath.  She is going to call me on Monday and give us more details.  Usually a cath means an overnight stay...so nothing major, but he will be under sedation and most likely get a breathing tube during the procedure, because he usually needs one under sedation.  Of course a cath is less invasive then his open heart surgeries, but their are risks.  Major risks are rare, but can include heart attack, stroke, damage to the tissue in the heart, and infection.  Please continue to pray for Xavier, his team at CHOP and for Nate and I.  Xavier is doing well...Dr. Ravishankar said that he looks great and is showing no symptoms of the leak (many times there will be a noticeable difference in color between the top half and bottom half of the body, shortness of breath, leg swelling) collateral veins are not affecting heart function, which is when they usually like to get rid of them..but because of the amount, she does not want to wait till his heart is compromised.  We want to do what we can to protect that right side, it is all he has left!!!  It is also possible that having this cath will buy us some more time before the Fontan, the last in the three steps.  We want him to be big enough and really the older the better for this last one, but the leaky valve made him an earlier candidate.  

HERE ARE JUST A FEW OF THE PICTURES FROM XAVIER'S CHOP PHOTO SHOOT!!!

So again, we play the waiting game..we wait for a date, we wait for the cath, we wait for them to take him back, we wait for them to finish, we wait for word on how great he did, we wait for him to recover.  Xavier has taught me so  many things...what unconditional love looks like, what it really means to have faith, that miracles really do happen, that God can help us through the darkest of nights and that being a heart  mom means having patience and being comfortable with waiting.  What a blessing it is to be Xavier's mommy. What a blessing it is when he throws his arms around my neck and hugs me close.  What a blessing to have such an amazing, supportive husband to help navigate this journey.  What a blessing to have such a supportive family.  What a blessing to be a part of the CHD community, one where we laugh and cry together.  What a blessing to have new and old friends support us.  What a blessing to be a CHOP family.  What a blessing to have strangers who go out of their way to help us!  As worried as I can get, as sad as I feel at times, and even though Anxiety and Grief are now old friends, I am surrounded by blessings.  I see the world in a way that I never did before X.  Every day, every hour, every minute, every second is a blessing and now those blessings do not go unnoticed.  

 Playing with Jackson!

  We are family!!

 This is fun!

 Xavier loves his Grammy!

Xavier loves the feel of grass on his feet!

TEAM XTREME

As you well know, Nate and I are not the type to ask for help.  But to be 100% honest with you, paying Xavier's medical bills is not easy.  Somehow through faith, prayer, hard work and supportive families we are always able to make it each month and for that we are so grateful!!  Last month we were approached by a "friend of a friend" who runs an organization called Steps Together...As per their website they are an organization who:

lets you directly help families and non-profits in our community while participating in a local road race as part of a team. 

We endorse a number of worthy local beneficiaries. You decide which you would like to support.  

This fall, STEPS TOGETHER has selected to participate in The Steelplechase Distance Walk/Run on September 30th, 2012.  The race, which supports the nearby Steeplechase Cancer Center, is based in Hillsborough and is one of the fastest growing road races in New Jersey.  The race offers a variety of events, including a 5K Walk, 5K Run, 25K Run and Children's Sprints.

Those wishing to join the STEPS TOGETHER team should first register for The Steeplechase Distance Walk/Run, then mail your donation to support the beneficiary of your choice.

As a team member of STEPS TOGETHER, you will receive guided training via email with training tips and suggested workouts, invitations to attend group training sessions, and fundraising advice should you choose to expand your donation network.   You will also receive a team shirt to wear on race day which will highlight both team sponsors and participating beneficiaries.  

We are super excited and honored to join them this year.  We really want all of our families and friends to come out and join us.  It is very easy to register with Steps Together...you simply go to the website and follow the three easy steps.  Xavier, Nate and I will be doing the 5K walk, but their is also a 5K run and a marathon.  The race itself is for a cancer treatment center so your race registration will go to them, but your Steps Together registration and all the money your raise will go to Xavier.  Our team, called TEAM XTREME, is also able to take business donations as well..so if you company or business is interested in helping, that would be great.  You can get all the info needed from the Steps Together website:

http://www.steps-together.com/

Click here to find our team and sign up!

http://www.steps-together.com/register-top/

Click here to go right to the registration!

http://www.steps-together.com/group-faq-top/

Click here for business!

Please let us know when you join!!!  We are super excited and hope to build a huge team..If you are unable to attend the race, but would like to sponsor us, you can contact me at www.jackielynnj@hotmail.com

Heart Hugs!!!!

Xavier send kisses for all the help!!