Happy 18 Months XAVIER!!

A forever ache!!!

Jeremiah 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.


I have a forever ache.  A feeling that is hard to explain.  Its a combination of anxiety, panic, fear, joy and peace wrapped up in pretty paper.  I have done my best to find it a place...deep in my gut.  I have become an expert at hiding it..like an actor on a stage, convincing my audience that I am this carefree, fun loving person who prances through a perfect life.  I can feel my ache..in my stomach, in my throat, even in my fingertips...There are a few people who can look into my eyes and see my ache, some who can hear it in my voice.  I often wonder what others would say if they heard my internal dialogue.

 "Does he look blue..wait is he breathing faster today.  No he isn't blue its the horrible lighting in here.  Why do I continue to dress him in blue?  Those purple feet are going to send me over the edge.  Why is he so fussy?  COME ON, EAT!!!  Why isn't he eating..is he in heart failure?  Was that a cough?  That was a cough..oh no he has RSV. Is he gagging? I REALLY need a pulse OX machine!!! OH NO..does MY throat hurt..I can't be sick.  Did the OT just SNEEZE??????  A birthday party at a little gym..I wish!?  Did they really all get their flu shots? "  

And that was just this morning.

Nate has learned to manage my anxiety.  He says it so gently..."Xavier just threw up".  Those words took my breath away.  He NEVER throws up...what could be wrong.  "Is he sick, is their something wrong with his heart..WAIT..did he just giggle???  WHAT IS GOING ON!!!"  He just lets me go off, naming every possible thing that could have caused his vomiting...TWICE on Thanksgiving night. "Could it be the flu again?  His numbers were high, could it be a heart issue?  Maybe the milk was bad...I did leave it out a little long."  Oh GREAT...now I can add more guilt to my aching box of emotions.

I am still coming to terms with the fact that I don't know Xavier's future.  The cold slap of reality is I often lay in bed and wonder "How long will he live".  I don't say it out loud.  It is not a discussion I have with Nate or with my mom.  I have never spoken those words out loud..not even when he was at his sickest.  But that questions is what keeps me up at night, what makes me cry when I am rocking him to sleep.  It is a question that I present to God in my prayers at night..begging for mercy for my child and my family.

I often wonder if he will be happy despite the pain he will live with.  "Will he be resentful that his life will be harder then most.  Will he cry when the other boys are playing football and he just can't keep up.  Will he fall in love...is there a woman who would commit to loving someone who is living on borrowed time.  Will his heart be whole again someday.  Will God bless us yet again with a cure, a way to grow his left heart...Will he need a transplant..Is that the answer?  Are stem cells the answer?  Are we doing enough to bring awareness.  Are we fighting for research that could save him and millions like him?" Why is it that everyone knows what leukemia is, but no one has heard of HLHS or TOF..or the 33 other CHD's.."what is a chd?"  is a question that I hear way to often...More children die each year from CHD's then from all childhood cancers combined..yet pediatric cancer research gets 5 times the funding..does that seem right to you??????

In the end, my ache will never leave me.  No matter what the outcome.  Transplant, miracle treatment, post fontan heart..I will always feel this pain.  Xavier will never be "fixed"..because their are always complication with how his heart was made.  His entire body is compromised because of his heart..his other organs.  He is on medication to help his heart, but it could hurt his kidneys, his bones...so we monitor them.  Post Fontan circulation could have an adverse effect on his liver..so as he grows we will be watching that.  His circulation is what makes it hard for him to eat, to go to the bathroom..his development is delayed because of the extended hospital stays, the timing of his second stage and his exposure to bypass and anesthesia at only 4 days old....so much stacked against one little person.  Its almost too much for a mom to take...I feel like I might be crushed by the weight of it all,

BUT THEN......

Xavier with his cousin Jackson!

Things just don't seem so bad when he smiles..cause I have my baby boy..he is happy.  His body is a beautifully flawed, perfect machine that continues to amaze us all!!!  In the end that is all that matters!!!

Handsome Men at Thanksgiving!  Xavier and his cousin Dan

 A play date with Lily and Violet (Lily is 6 living with HLHS)

 Fun and HOPE all in the same day!!

 "This play room is HUGE!!"

 Xavier and Violet

Some members of Team X sent in pictures of them wearing their shirts!!! SUPER CUTE!!

Happy Halloween!!

Xavier was hoping to finally trick or treat for the first time this year..however, Sandy had a different idea.  Our trick or treat was moved to today...the day of the snow storm..so we decided to dress him up and show him off via the blog.

Xavier is in a HLHS baby costume contest.  If you are on facebook, please click the link below and like his picture..and while you are there, check out the other HLHS cuties.


Other Xavier news...our little warrior has just started swimming lessons.  I was so worried that he would not like it, but we decided that we needed to start exposing him to other kids and other activities in a controlled environment.  So with the blessings of his cardiologist, we started Aqua Tots at the Newtown Athletic Club!!  He loved it, and we are excited to go back this week.  Please enjoy the pictures below!!

Confessions of a TERRIFIED heart mom...

As heart moms, we look to each other for guidance, advise, encouragement and hope.  We look to those that have come before us to light the path that we walk.  The world of CHD really is like a country road at night...in the distance you can see tiny specks of light..of hope...but most of the time we walk in the darkness.  Just when we think that we will be consumed by the darkness  a car drives by and lights the way.  Those that came before come to our aide...lifting us up, relating to how we are feeling and knowing just what to say to help us adapt to this life.  

When I first learned about Xavier's heart, I was introduced to some amazing moms and babies who were living with and beating HLHS.  I clung to their stories like a person lost at sea, clinging to a piece of wood.  Almost drowning them in my desire to just keep my head above water.  I asked a ton of questions, called them crying and prayed that their story would be our story.  I did all I could to stay away from the stories of those sweet babies that did not make it to the Glen.  To tell the truth, for the first year of Xavier's life, I had myself convinced that all we needed to worry about was making it to the Glen (stage 2 of Xavier's repairs).  Once we were past that "critical" stage, we would be okay.  

But in past few months, reality has smacked me hard.  We are losing babies and children well past their stage 2.  They are doing well and amazing us one day...and gone the next.  Some are getting their special gifts of a new hearts...living years with that gift, only to be gone...with little or no warning.  

People always say to me "your so strong" or "I don't know how you do it".  But they don't see me when I am alone with my thoughts.  They don't know the debilitating fear I feel on a daily basis.  I know that you can't have faith and live in fear...but to be honest, in this life of a heart mom..it is just impossible to live without fear.  I don't want to lose my baby.  I don't want to see him sick or in pain.  Horrible and terrifying thoughts of what life might be without him hit me at the strangest times.  I get physically sick when I think that right now, what I consider my worst nightmare, is someone else's reality.  I go to bed every night begging God to just take me first...I can't live in a world without Xavier.

I have learned to cope..learned to live life, enjoy myself, be happy.  But I always carry that terrified  woman with me.  For so long I was ashamed that I was so afraid...but a heart mom who has walked this road ahead of me and for much longer told me to "live with my fear and stop running from it...you can't fight it unless your looking it right in the face"

NO FEAR..yeah right!

"No one ever told me that grief felt so like fear" - C. S. Lewis

I almost don't remember that life anymore.  The one where I could run out the door at a moments notice.  The one where I could stay out till the sun came up and sleep till dusk.  The one where I had NO FEAR, because I had complete control of my life, or so I thought.

Now I look back on it and realize that I was living in a bubble.  In this bubble, old people who had lived long, fulling lives were the ones that I mourned.  Death seemed like the last stop on a very long train ride...the one that you were ready for.  God was the spiritual figure that I spoke to when I was in need of something.  Friends were people who I had fun with.  Life was simple and easy and smooth.  I lived life with NO FEAR, because I did everything right.  I went to college, went to grad school, got a job, met a great guy and was on my way to a long, happy, fulfilling, easy life where I controlled everything and felt NO FEAR.

Please don't get me wrong...my life is very fulfilling...and much happier then even I imagined.  Of course my life is very different. I fall asleep when the sun is still out, but that is the PM sun, not the AM sun.  I can't remember the last time I dropped everything and ran out the door.    My perceptive of death has changed by leaps and bounds...and I understand deep inside my heart what it really means to grieve.  God is the spiritual figure who I praise more, then I seek (but don't be mistaken, I still seek him out plenty).  Many of my dearest friends are women who I have never met, or whom share the common bond of being a heart mom.  And every day, no matter how hard I try, I carry FEAR with me.

For a while now, I have been trying to get rid of that FEAR.  Telling myself I needed to enjoy every second with Xavier and not to dwell on what I can't change.  But I am a mother, a damn good one, and so I need that FEAR.  It is that FEAR that keeps me on top of HLHS.  That FEAR keeps me asking questions, reading medical journals, talking with other mom's who came before me.  The FEAR keeps me pushing for the right direction for Xavier's heart.  The FEAR keeps me motivated, pissed off just enough to stay one step ahead.  In my life I grieve almost a loss a day.  I grieve the loss of babies I never met, and the ones I held close to my heart.  I grieve with Xavier when he cries so hard because of his FEAR...fear of the blood pressure cuff, the pulse ox, the ECHO, those people who crowd around him and invade his space.  So for me and millions of mother's like me GRIEF and FEAR are interchangeable ..and even if we don't want to admit it GRIEF and FEAR live side by side with LOVE, FAITH, STRENGTH and JOY.

So do "WE" live with FEAR and GRIEF...of course we do.  We have been handed a very difficult deck of cards.  But don't be mistaken..we have learned to channel that FEAR, that GRIEF and make it work for us. Make it work for our children and our families.  I will embrace my FEAR and become a mighty warrior, just life Xavier,  because of it..not in spite of it!!! 

We don't fight the same battle but we fight the same war!

Sunday is the big day.  Friends, family and strangers will join together...We will join with other people...fighting.  We are not all fighting the same battle..but we are fighting the same war.  We will come together under one organization..and we will share in the struggle that is a fight against the unfair and unjust things that life can throw at any of us at any time.  We will fight HLHS, breast cancer, brain cancer, and the struggles of being a wounded veteran.   We fight hospital bills, insurance companies, and pharmacies.  We understand what it means to live in a hospital, to see our child, husband, wife or family member suffer.  We know what it means to get on our knees and BEG God for just one more day, just one more minute, one more second with our loved one.  We know what it is like to hold our breaths when the phone rings and its the doctor..will it be good news, bad news???  We don't know each other..but we understand each other.  We are mothers, father, grandparents, siblings, aunts, uncles, co-workers, bosses, next door neighbors, friends and strangers.  And on Sunday we will join together to fight...but no one should have to fight this war or this battle alone.  And we don't and never will...I have found strength , conviction and inspiration from the other beneficiaries of steps-together.  I have found kindness, support and love in Courtney and Mike Newman, the angels sent from heaven who are steps together.  I have found renewed faith, light and generosity in the people who donated to or joined our team.  We hope that you will join us...and that Sunday and for years to come that you will support steps together...

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

Life is never to busy for the rhinovirus!!!!

So our lives have been GO,GO,GO!!!  We made the big move from NJ to PA at 11:00pm on Labor Day.  We had closed days before, but with the big weekend and Nate playing four gigs, we were unable to move right after.  We spent the week cleaning, painting (well ok, my father-in law did the painting, but I picked the colors) and just settling in.  I had the horrible task of making sure our insurance was switched and effective, filling out the medicaid application and making sure we were all set up with Xavier's doctors and CHOP.  The first week flew by and our new home was feeling like just that, HOME.

Xavier enjoying his chair in our new family room!

 We packed up early Monday morning and headed to CHOP for Xavier's cath.  It is never easy to kiss him goodbye and watch the doctors  in their scrubs and gowns wheel him away.  I just kept telling myself, at least this is not an open heart surgery...but then I was quickly remembered that we will in fact be having another OHS in the near future.

Xavier's cath was LONG.  They ended up coiling 6 collateral veins in his heart.  That is a long, tedious process.  Following his cath, he had an MRI scan.  Altogether he was sedated and on the vent for 6 hours.  He came back sleeping...and slept for most of his flat time.  When he woke up he was fussy and sounded a bit congested.  We just assumed that it was from the vent, but the cath doctors did say they needed to suction his throat and nose a few times during the cath.

Waking up...

After Xavier had a chest X-ray we were moved to a private recovery room.  We expected that we would be staying the night, since the cath required intervention on Xavier's heart.  Things were going well.  He was mainly sleeping and started to drink some clear liquids.  Around 8:00 pm we started to hear more congestion in Xavier's throat and nose.  He seemed off.  He started throwing up his feeds and meds.  He threw up for most of the night and was very fussy and warm.  He had a fever, needed suctioned a few times, and was just not feeling well.  I made the mistake of packing for one day and night.  By midnight all the clothes I had packed had been thrown up on.  I was in scrubs!  By 3:00 the scrub top was thrown up on and I was in a hospital gown!! You would think a veteran heart mom would be more prepared..wishful thinking, I guess.

He woke up the next morning feeling a bit better.  He ate a little and was able to keep it down, so at around 2:30 PM on Tuesday we were discharged from the hospital. 

OK..TAKE ME HOME!!

When we got home, he seemed ok.  He went for a walk, had a little pedilite and went to bed.  So did mommy!!!  He slept for almost 3 hours, and woke up burning up!!!  He was so hot.  His temp was 102 and he was noticeably uncomfortable.  We tired to feed him, but he was unable to keep anything down including Tylenol.  We finally decided to call the hospital and after watching him for a few hours with no change, we were off to the hospital, six hours after we were discharged.  

We got to the ER and they took us right away.  He was still so hot, and his oxygen was low..70.  He needed suctioned again, but we were able to get him to keep down some Tylenol.  The final decision was to give him IV fluids and admit him.  

In the ER, and not all that happy about it!

We got into a room around 12:30 am.  Xavier was exhausted and slept most of the night.  He coughed quite a bit in his sleep, so needless to say that mommy did not sleep.  He woke feeling better.  His fever finally broke around 11:00 am.  He started being able to eat and keep it down, but we are going slow.  We are still here, but the plan is to give him a blood transfusion to "fill up his tank" (the words of the cath doctor, not me) and get an evening discharge.  His blood labs came back positive for the rhinovirus...so a common cold really knocked him for a loop..this is why we kept him inside and really ask that sick people not be around him.  A common cold for some could be days in the hospital for X.  Thank God he didn't get sick with this last year at this time...it could have been fatal!  We have had a ton of get well messages, prayers and positive thoughts for X.  We are so blessed.  The cath results were positive.  Xavier's heart function is good, pressures are good, Glen is working great.  He does have a leaky valve and a dilated right side, but Dr. Glatz feels that getting rid of those collateral veins will result in both of those things improving.  We are thankful that his heart is doing so well and that he is on the mend.  Thinking of all my heart mom friends who are still in the hospital with their sick kids.  I hope you all get out very soon!!!

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