The Journey of a Sweet Little Boy and His Special Heart

Sunday, October 3, 2010

The Start to Logan's Heart Journey

When Logan was born he appeared to be an extremely healthy baby (scoring a 9 on the APGAR test).  We had a perfect hospital stay with absolutely no problems, so we were discharged after 2 days with a big thumbs up!  The only concern was he was borderline jaundice so his pediatrician asked us to bring him in to have that checked out when he was 4 days old (I am thankful EVERY day for a cautious pediatrician).  It was at that check that we first heard the words, "Your baby has a heart murmur."
We left that appointment concerned, but not freaking out because after all up to 50% of babies are born with mild heart murmurs.  We just assumed Logan would be one of those.  It was 2 days before we could get an appointment for an Echo so Dr. Lei (his pediatrician) asked to see us back the next day.  It was at that appointment I think we all realized it was more than just a mild heart murmur.  I could see the concern written across the doctor's face.  The murmur was even louder than it was the day before and he could hear it in the right side of his body and in his back.  I cried, Brad stayed composed... we didn't have all the facts yet- that is for sure.  I don't think anything could have prepared us for what was to come. 
The next day we spend 7 long, emotional hours at Primary Children's Medical Center.  The Echo itself was 2 hours of unbearable silence.  We had NO idea what was about to hit us.  I think Dr. Mack tried to soften the blow when he explained what they found in the Echo.  He asked a million questions about symptoms Logan might be showing- the answer was "No" to everything- he was a perfectly healthy baby, so I was feeling pretty confident that things were okay.  Then he drew a picture and started explaining what was wrong with my baby's heart.  This is where our world as we knew it was tipped upside down and we entered into the reality of Congenital Heart Defects.  Life hasn't been the same since.
Logan was diagnosed with Hypoplastic Right Heart Syndrome, VSD, and an Overriding Tricuspid Valve with an enlarged Left Heart. 
The next week was a blur.  It was hard to grasp the reality that my prefect looking baby had so much going on inside his little body.  He had his first surgery, Pulmonary Artery Banding, when he was 2 1/2 weeks old.  We look at this surgery as a kind of "band aid" to give his body time to grow and get strong enough for the surgeries he will need down the road.  (To read about our experience with this surgery click here.)  The next surgery will be the Glenn (in the next few months). 

It is time to update Logan's story as much has happened in the last 6 months.  At Logan's routine cardiologist appointment in Sept. Dr. Mack was concerned the pressure going across his PA band was too high and he needed to have a heart cath to measure the real pressures.  He had a heart cath in October and this is where life got a little crazy.  We had a lot of doctors with difference's of opinion after the cath.  Some said he had months before needing the next surgery while others said he needed surgery immediately.  Brad and I were so confused and frustrated.  We aren't doctors and won't ever claim to be, but we needed to feel confident in Logan's care and we weren't getting that.  His doctor suggested maybe we start asking for a second opinion.  We sent his records out to CHOP (Children's Hospital of Philadelphia), Stanford, and a cardiologist at John Hopkins.  After getting back all the information  they all agreed that Logan was a candidate for a 1 1/2 ventricle repair, possibly a full repair. 
We traveled to Philadelphia in December 2010 for Logan's 2nd surgery.  Dr. Spray operated on him and did a complete 2 ventricle repair.  He felt fairly confident in the surgery- he said Logan did great, but he was concerned that his Tricuspid Valve was deformed and a lot smaller than they had anticipated.  Logan seemed to be doing great at first, but 3 days post-op Brad and I noticed something was not right.  Logan was refusing to eat, seemed extremely agitated and uncomfortable, and looked miserable.  Logan had gone into acute, severe heart failure.  The right side of his heart was backing up so much with blood that the atrium wall was bending the wrong direction and he had major pleural effusions (fluid) on his lungs.  We were moved back to the ICU to get him stabilized and they worked to get the fluid off his lungs.  After a few days another heart cath was done to determine the next step.  During the cath they popped open the atrium to try to alleviate the pressure building up in his heart, but it still wasn't enough.  Just 10 days after having a major open heart surgery Logan was going back for another major open heart surgery.  Dr. Spray tried every possible repair to at least make him a 1 1/2 ventricle heart, but his tricuspid valve was so unreliable and small that he had to patch over the valve and take him to a single ventricle.  We were devastated at the outcome, but realized that we tried EVERYTHING we could.  We traveled across the country to the best surgeon in the U.S. and Logan was given the best care possible so we have to trust that this is God's will and His plan for Logan.
Logan had a rough recovery from these 2 surgeries back to back and we ended up being in Philadelphia for 4 weeks before we finally said we needed to bring him home for him to recover.  We had been away from home too long.  After returning home his recovery went so much better.  He loved being back with his sister and brother, and so did Brad and I.  He came home on oxygen and was on oxygen full time until April 1st where we have been able to just have him on oxygen at night now.  He is doing so well now.  He is growing and developing like a healthy kid.  So the plan is to watch him carefully, and again let him grow until he is at least 30 lbs where he will then need another surgery to complete the single ventricle anatomy called the Fontann.  
He is our little Superman and a true warrior.  He is such a blessing in our lives and has taught us so much.  Through his heart journey we as his family have found strength we didn't know we had, faith beyond anything we have known, and a love that grows exponentially every day.  This is definitely not the journey any parent would have chosen for their child to have to endure, but we will continue taking this journey with him every step of the way.

1 comment:

  1. Thank you so much for sharing your journey like this with us! You really are a strong wonderful woman and mother! Take care and know that my faith and prayers are with your family, sweet Logan and his amazing doctors! We love and miss you. Can't wait to see Logan's sweet smiles in class again soon!