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Heart Warrior

When Jana was born she had two defects in her heart.  One PDA (In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. Before birth, the two major arteries—the aorta and the pulmonary (PULL-mun-ary) artery—are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation)  The second was a ASD (A “hole” in the wall that separates the top two chambers of the heart.  This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. ASD is a defect in the septum between the heart’s two upper chambers (atria). The septum is a wall that separates the heart’s left and right sides.)   Last year she had a full ECHO and EKG done to monitor these defects because surgery was not needed at birth.img_8755

Yesterday we had to do the ECHO and EKG once again…

First of all, whoever thinks getting a toddler to lay still for over an hour to do the ECHO is CRAZY!!!  Seriously, I can’t keep this child still for anything!  Except…yesterday 🙂  We had to leave our house at 5:30 am in order to take the 2 hour drive to Rady Children’s Hospital.  This meant, Jana got taken out of bed, and put straight in her car seat.  She stayed asleep till about 6:30…normally she is up around 8:00.  So that right there messed her whole schedule up.  We arrived with her favorite move (HOME) downloaded on our IPad, as well as a few episodes of her favorite show (Kazoops!)  We img_8750got checked in and they put the monitors on her chest and tummy.  Then, asked us to keep her still for the duration of the test!  For the most part she did stay img_8747still…even fell asleep for about 30 min!!  It was probably the most I’ve snuggled with her in a long time!  But around the 50 min mark, not just Jana, but mama and daddy were fed up and ready to move around!  Luckily they were able to view her heart as well as main arteries in her neck and lower chest area.  How she did it, I img_8757have no idea!!

It was now 10:00, and time for the EKG.  This LUCKILY is a very quick procedure and she is allowed to at least sit up.  They hooked her up to what img_8756seemed like a hundred wires and the test itself took about 2 min!  Our girl was going strong.  She hadn’t thrown a single fit and was still being her adorable self.

Finally it was time to see our Cardiologist.  The last time Jana saw him, she was smitten 🙂  We’ve said he is her favorite doctor because he is the only one img_8751she has ever flirted with.  Unfortunately, by the time she got to see her McDreamy , she was sound asleep 😦  But that just meant, mama and daddy could talk to him a little less interrupted.

img_8758 So what did the test show?  Well, her PDA has completely fixed itself.  That means, that is no longer an issue and can now be left alone.  Then came the pause…..  Her ASD is currently open about 6mm, that means it is letting blood flow into the right side of her heart.  Meaning, the right side is slightly larger than the left.  If left untreated, this can cause serious health issues.  So a surgical procedure will be done next summer to fix this issue.  They will be going through her main artery in her leg and hopefully be able to fix it without fully cutting her open.  He feels waiting one year will help her vessels grow a little.  Currently they are roughly the size of her pinky, and the instruments he needs to use are just about the same size.  Obviously that is an issue!

So this summer she will have a tonsillectomy and adenoidectomy then next summer her heart surgery.  Which means, I have a full year to stress and freak about my daughter having heart surgery!!  Ugh!!  I am honestly trying to stay positive about it.  Our situation could be much much worse!  We are very grateful for our babies health but it does not make surgery any easier.  It is scary, it is stressful, but it is needed!  Our girl is a warrior and I have no doubt she will amaze all of us during these surgeries.  I trust that God’s had is watching over her, giving her the best doctor’s for the job, and will see her through it all.  I just need His help a little more to deal with the extra worries.       

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With an Aching Heart

FullSizeRender-2Yesterday heaven received a warrior.

I’d like to introduce you to Walt.  He was born with Down Syndrome and a congenital heart defect.  He underwent countless surgeries and procedures to keep his heart and organs working. He spent way too much time in the hospital and not enough time being able to just be the precious little boy that he was.  He endured so much pain and struggles but with his loving family by his side, he kept fighting.

Yesterday, just 3 months short of his first birthday, Walt went to his eternal home. This past weekend he was sent home to pass in peace. Yesterday morning he FullSizeRender-3let go in safe in his mamas arms and ended his pain.  Now instead of pain and struggles, he is joyously in the arms of our Lord. No more pain, no more tears, no more surgeries, little Walt is finally at peace.

Since I read the news yesterday on Walt’s Instagram page, my heart has truly ached  for his family.  Today they awoke with a part of their heart missing.  Though they are at peace because they know his pain is over, it doesn’t mend the hole that I’m sure they are feeling.

I’m not just sharing this with you to break your heart. Many kids face these same struggles Walt faced each day. Jana was born with a congenital heart defect. By Gods grace she has not needed any surgeries, but that doesn’t mean she is forever in the clear. So many tiny lives are taken away sooner than their parents were wanting, but that doesn’t mean their lives weren’t worth it!  Some people feel that this is reason enough to abort Down Syndrome babies. BecauseFullSizeRender-1their lives might not be as “fulfilling” as typical children. I can pretty much guarantee that Walt’s family wouldn’t trade a second of his life to insure they had a “healthy typical child”. I’m sure they will cherish ever smile, every snuggle, every tear that they shared with their little warrior. Even though his life was short, it was worth it!!

For the past year Walt’s family have set up a fund to help other kids facing the same struggles as Walt. They’ve helped other families who are watching their little ones struggle.  They made sure Walt’s life had a purpose and that they were able to share Gods love with others. I encourage you to visit their site. Take a look at more photos of little Walt and see how much God has blessed this family.

Warriors For Walt

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Sleep in peace sweet little Walt