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.


Wednesday, April 18, 2012

Well hello there NORMAL..nice to see you again!

It use to happen a few times a day...Slowly it was only happening once day.  Until I could go weeks without it happening.  It has been since now it has been months.  Then yesterday afternoon, while I was alone in the car driving to the gym, it happened.  I had a full blown emotional meltdown.  Thank goodness the gym is only 5 minutes away.  I just sat in the parking lot, struggling to breath and crying that a crazy person.  Usually something triggers it.  A huge milestone that Xavier has reached, a family get together that we never knew would be possible, finding out about a warrior who lost their fight, finding out from another heart mom that their child got a great report at the doctor.  This time, it was the overwhelming feeling that our lives were...wait for it....NORMAL.  I admit that it may not be normal in the conventional way, but it feel pretty damn normal to me.  Even the Lovenox shots have become very routine.  Xavier has even started to pinch his legs like I do right before a shot.  We only see the cardiologist once a month, now that RSV season is over, we only go to the doctor for well visits.  I only take sats once a week.  He is only on two meds.  He eats solid foods like it is his job and loves his bottle!  Sounds pretty normal to me!!

We went to the zoo yesterday with friends and their baby.  We have been doing more and more family things without me going into full blown panic mode.  I know this road never ends and that there are plenty of bumps to come..but I feel like we are out of the tunnel.  The darkness has given way to light.  And just last week we started to plan...Xavier's first birthday parties...yes parties.  This kid is having three months worth of celebrations!!  Of course our families are so spread out, that we have decided to have a party in each state.  PA, NJ, RI!!  Before, I never let myself think about the future for X.  I only tired to get over the next major hurdle.  All I thought about when I was pregnant was getting him strong and getting him here safe.  Then it was to just get him through the Norwood.  Then I concentrated on getting him out of the hospital.  Once home, my focus was getting through interstage without any major issues.  Finally it was October and we just focused on getting the Glen over with and getting him home again.  Now I am allowing myself to focus on the fun things, and really enjoying being his mommy. I am so proud of him.  He is such a happy boy.  He is such a trooper and truly has the spirit of a fighter....who am I go give up on him?  I am so sorry that I ever doubted him.  Giving up is not in his DNA!!

A little update on the collateral veins that were discovered in Xavier's MRI:  Upon further investigation by Dr. Gaynor (Xavier's heart surgeon) and by the team, they have decided to just leave them as they are.  Dr. Gaynor does not think that they will cause any long term heart issues and that if they coil them now, they will just have to go back in and do it again before his Fontan surgery.  So the plan is to just keep an eye on his heart function and wait till before his Fontan, go in then and coil them before surgery.  These veins are less likely to come back after the final stage. They also gave us a tentative surgery date....2 1/2 to 3 years of age..depending upon how his heart looks and if these veins are giving us any no cath lab for X!!  Which is a good thing.  I am also super happy to hear that Dr. Gaynor looked at his film and is happy with his heart.  Gives me some piece of mind!!  Please continue to pray for X-man and all his heart friends.  This is a journey that never ends!!

Friday, April 13, 2012

And the results are in..back to the cath lab we go :(

We had a wonderful Easter, although the MRI results were hanging above my head like a big, dark cloud.  Xavier and I headed to PA to stay with my parents while Nate, the bread winner, went to work in Maryland.  We really missed him on Xavier's first Easter.  However, I am glad that I made the decision to go to PA and not stay home alone.  We enjoyed being with family and visiting with friends. Xavier was happy most of the time, except for at night.  His teeth were keeping him up.

 Xavier coloring eggs with Connor and Nanna

 Babies first Easter Basket
The Easter Bunny Came to PA!!

We arrived home to NJ continued the waiting game for the MRI results.  Finally after not hearing anything for a week I called.  I found out that the reason that we had not heard anything was that our cardiologist had to take a personal leave of absence and that they were waiting for someone else to read the MRI.  I was assured that I would hear something by the end of the week.  The neurologist, Dr. Licht called on Thursday with excellent news.  His brain looks great.  No clots, no damage, developing nicely.  More gray and white matter...all is well in the land of Xavier's brain.  He wants to keep him on the Lovenox for a while longer.  We will revisit going off in June.   

Finally, on Friday afternoon I got a call from Dr. Bird, whom I have never met.  He told me that he works closely with Dr. Wernovsky and that he had spent the afternoon looking at Xavier's MRI.  He said that it looks good with the exception of collateral veins that have formed in the heart.  Spider veins that people get in their legs are a form of collateral veins.  They are extra veins that the body creates when it is not getting the amount of circulation that it thinks it should get.  It is very common in HLHS babies.  These veins are causing his heart muscle to stretch a bit.  Good news first, it is not the leaky valve that is stretching out the heart.  The leak is the same if not a bit better.  Bad news:  These veins will most likely mean a trip into the cath lab to coil those veins off so the blood can not get to them.  That will mean more blood going to the body (higher sats), less volume to the heart (his heart will have to work less) and less volume mean less leaking in the after the coil the leak will be even better.  These veins can grow back after the coil, but once he has his third surgery (Fontan) these veins tend to dissipate.

SOOOOO....not 100% what I wanted to hear but not horrible.  I hate that he will be under sedation again..and that there is always a risk of stroke during a cath.  However, Xavier did well with his last cath and it is a pretty simple fix.  The cardiologist at CHOP that we spoke with said this is to be expected and that it is not something to worry too much about.  I just hope that they get him in soon.  To be honest it is the waiting that really drives me bananas.  I know that this is what needs to be done in order to help his heart function better and stay strong and get him to 3 or 4 safely in order to be a good candidate for the Fontan.  I am very happy that the valve is not the culprit.  Dr. Fernandes always says "we don't want to have to mess with those valves if we don't have to".  At the end of the day, I wish they said that it was nothing..but I guess we kinda knew going in that something was stretching out the bottom part of the heart.  I guess this is the least worrisome thing.  By the way the conversation went today, once less volume is in the heart, it should go back to normal size.  

Please keep Xavier and his doctors in your daily prayers.  I have a very strong faith and I know that God is holding Xavier's heart tenderly in his hands.  I prayed day in and day out that his valve was not getting worse.  My prayer was answered.  I know that God will hear my prayers to keep Xavier safe during the cath and that this coil procedure will be a success.  All good and wonderful things are because of the Lord, including the work being done at CHOP.  Xavier is doing well and thriving despite the veins, so I just keep telling myself that he will be even better when this procedure is done.  Once we have a date I will let you all know.  

Friday, April 6, 2012

"Near the cross of Jesus, stood his mother" John 19:25

Around Christmas time I had a post talking about how much Faith it took for Mary to not question the role that God had for her to play.  I reflected on how hard it must have been to just say "If it be your will".  Again, I find myself thinking of Mary today, this Good Friday.  I am sure that Mary knew that her submission to God's plan would cost her.  At the least, people would talk.  An unwed mother during those times?!  Did she worry that Joseph, the man she loved would divorce her or worse have her put to death by stoning..did any of that matter to Mary.  Well the bible gives us that answer.  NO..she stood strong on her faith and believed what the angel of the Lord had told her.  I find myself wondering..when did she realize that the son that she put everything on the line for, the son she loved with all her heart, her son and savior would die a criminals death on the cross.  Still through it all she willingly submitted to God's plan.  Can I willingly submite and rejoice in God's plan for me, for Xavier.

Oh, the depth of the love and strength that Mary had.  She and the other women followed the Lord to the cross.  All the men, the disciples of the Lord, fled...however the woman who loved him remained with him till the end.  I have stood by and watched my son suffer and it was the hardest thing that I had to do, however..I knew the outcome would be life.  I knew that the pain he felt was temporary and that he would soon be back in my arms.  Mary knew that her son would die on that cross.  That he would die for her.  To save her from eternal damnation.  That he would die for me, for Xavier, for YOU!! He died for those that had denied him, those that had betrayed him..he prayed and died for those that had lead him to that cross..."Forgive them Father, for they know not what they do" Luke 23:34.

So it is through Mary that I find renewed strength.  A simple girl, chosen to help save the world.  Finding strength in the Lord's plan.  Being a mother to the Lord until the end.  The bible tells us that Mary was the first to kiss Jesus' brow, she quenched his thirst and touched him tenderly.  She was a mother who never abandoned her child.  Very much like me and my fellow heart moms.  His suffering was her suffering, his pain, her pain.  His death broke her heart.  Oh the depth of a mother's love.  Oh the depth of God's love for us.  The bible tells us that while the others stood at a distance, Mary stood at the foot of the cross..the closest to Jesus in life, was the closest in death.  She did not cry out causing the Lord more pain..she cried slient tears.  In the sound of the mockery of the Lord, MARY STOOD.

So when things get hard, when I can't take the pain of worry and wondering about my son's heart and his future, I will look to Mary for inspiration...I will pray, ask God for mery and STAND TALL for my son!!

Please continue to pray for Xavier and his heart buddies:  Kellen, Zoe, Julianna, Payton, Evan, John, Baileigh, Jaxx, Cam, Stosh, Olivia, Jacob, Jilly, Lane, Jensen, Hayden, Ella...and so many others.  Those with us, those who have passed and those who have not been born yet.  Heart kiddos are very special.  They were blessed with an unbreakable spirit.

Happy Easter everyone!! God Bless!!

Xavier with is first palm...

Thursday, April 5, 2012

I am ready for my close up!!

I had just unpacked our bags from vacation, when I had to turn around and pack them again.  This time just for an overnight, but when you travel with a 10 month old heart baby, you always have a lot of bags.  We were up early packing the car on Tuesday morning.  We hit the parkway at 10 am..we had a pretty uneventful ride.  Xavier slept and Nate and I talked.  We arrived at CHOP at noon..and met with a photographer and some writers who work for the public relations department of the hospital.  CHOP puts out a magazine called The Children's View.  They contacted us about doing a story on Xavier.  They had interviewed us last month and now they needed pictures.  So Xavier smiled and charmed the pants off of everyone.  He was like a professional.  We ended up with some amazing shots of Xavier and the whole family.  The magazine is sent out to donors of the hospital.  It is so important that donations are made to CHOP and to the Cardiac Center.  I hope that Xavier's story will help people see the amazing work that the Cardiac Center is doing.  Xavier will also be a patient story on the Cardiac Center's website.  I hope that he will be a sourse of hope for new families who are researching hospitals and HLHS.  We had so many CHOP families who inspired and continue to inspire us..this is just our way of giving back.  We are going to be getting a digital copy of all the pictures they took, not just the ones they use, so be ready to look at tons of Xavier smiles!!  After the photo shoot, we headed to the intake center to just do blood pressure, O2, weight, length and go over orders for the MRI.  He was NPO (which means that he could not eat) at 11:00 pm the night before...NO FUN!!

Even after a long day..he is still all smiles!!

Off we were to the Holiday Inn in Cherry Hill.  I called the Ronald McDonald House the night before I could almost here the laugh in her voice when she said they were full with a 16 family waiting list.  It was worth a try.  Thank God for the RMH..they help so many families who just want to be near their sick children.  We just had dinner and hung out.  Xavier was a bit fussy..I just think that he knew he was not home...but we did squeeze in a little fun....

Xavier had to be at the hospital at 5:30 we were up and moving at 4:30.  Considering that he could not eat anything, he was a pretty happy guy.  We checked in and the lady realized that when he had his Glen she was out on a leave and he never got his heart pillow.  She she gave him a cute one with monkey's on it.  He loves it!!  They took him into the CPRU (cardiac patient recovery unit) and prepped him for his MRI.  They hooked up his leads, pulse ox, blood pressure and put his hospital gown on him (in pretty purple).  He was flirting with the nurse and getting tons of oohh..and ahhhs.  We sat him up and started to put his arms through the gown when...he just threw his arms around my neck in a bear hug...I think that was his first real hug...he made his mamma cry (and I think I saw a little tear in daddy's eyes too).  He actually hugged me a few more times..I think that he knew something was up.  Finally he was all ready and he just watch some Mickey Mouse and was pretty mellow.  

Finally they gave him some medicine so he would not fight the mask as much and the team came to get him.  We walked together down the horrible hall that we have walked way too many has a smell that you will never forget.  We went into a room, shook hands with the anesthesiologist and talked to Xavier while they gave him gas.  We kissed his chubby cheeks, whispered how much we loved him into his ear and walked out of the room with that all too familiar lump in our throats.  The nurse could tell that I was about to lose it and asked us  "show off your baby"  questions like who does he look like and is he sitting up on his own yet?  I pulled it together quick and Nate and I went for some coffee and attempted to eat.  

After breakfast, we just sat on the bridge that connects the CICU to the CCU and read.  Of course we called our parents to update them on how things were going.  We were told that it would take 2-3 hours.  
The staff often decorates the window of the bridge to reflect things that are going on at the hospital.  It is siblings week this week and they rocked out the window!!

Finally we got the call that everything had gone great and he was in recovery.  We rushed back to be with him and he was not a happy camper.  He just looked at me like "really mom??"  They ended up needing to give him a breathing tube toward the end, but that was to be expected.  We got him a bottle and he ate right away.  Soon he was in good spirits.  We went home soon after.  We do not have results yet, but I will be sure to post when we do. I have faith that it will be all good!!!  Thank you to everyone for your daily prayers for Xavier.  He is such a special little guy and we are super proud of how much of a fighter he is!!

Still waking up...and still super cute!!