Monday, October 15, 2012

One year ago (part II)

I felt such a mix of emotions hearing that Jensen would have to fight for his life. Anger. Hope. Anger. Denial. Anger. Sadness. Anger. Did I mention how mad I was that this happened to MY baby. I was infuriated. I did everything right. I took vitamins, ate well, exercised, planned for this baby for months, and he has to suffer? How is that fair? 
Graduation @ 29 weeks
Between my moments of fury, I would have times when I felt totally calm. It was almost peaceful knowing that yes, our baby has this terrible diagnosis. Now, what are we going to do about it? I sometimes felt lost thinking of all the possibilities. Other times I felt total clarity and knew exactly what we had to do. 

Waiting on baby boy in Philly

After our appointment with the maternal-fetal specialist I really didn’t know what we were up against. I just knew something was wrong with his heart. I was so scared and anxious to learn more. 

Exploring the campus at 67,000 weeks pregnant (well, maybe not but it sure felt like it!!)

After a grueling wait, Monday finally arrived and I went to the fetal echo armed with a notebook full of questions. I am so grateful for Dr. Robinson. He not only gave us peace of mind about Jensen's prognosis, he answered every question we had and was so patient with us. I  learned so much at that appointment. I learned exactly what was wrong with his heart and that Jensen had a chance at life. He would have a rough road with many surgeries and hospitalizations, but he could LIVE. He would be able to play sports and be rough like a typical little boy. The information we received from Dr. Robinson was dramatically different than the grim diagnosis from the high-risk OB. 

Our hero finally arrived <3

Dr. Robinson assured us that although a difficult defect to deal with, it was manageable. Kids walk around all the time with half a heart. Wait...what?? Half a heart? It was about half-way through my long list of questions when I could finally picture Jensen’s heart. It was only half of what it was supposed to be. That thought was amazing to me because this little boy kung-fu kicked me all the time! He seemed so strong for only having half of a heart. 

Post-Norwood. One of the ECMO techs took this for us.
 For the remainder of my pregnancy I became obsessed with researching everything I could on HLHS. Although I bordered on the psychotic, I amassed some serious data about hospitals, survival rates, surgeons, surgical options, post-surgical care, long-term health risks...etc. I knew the numbers, I knew the risks, I (thought I) knew the heartache that would go along with this diagnosis. I just refused to accept this heart defect as a death sentence. My boy deserved to have parents that would give him the world. It didn’t matter if I was scared out of my mind at times, he needed me to be there and be strong. So until he arrived I was determined to be as positive as possible. Some days that plan didn’t work and I was consumed with guilt and anger. But most days I was able to put my boxing gloves on and fight for my kid. 
This perfectly sums up how wonderful Dr.Fuller is.
I knew that if we wanted to give our baby boy the best chance at life, we had to go to the best hospital in the country. CHOP. There was never a doubt about where we should go. We even interviewed at other hospitals just to make sure I was not missing any detail. No one could put my mind at ease more than the staff at CHOP. From the moment I called the Center for Fetal Diagnosis and Treatment, I knew it was the place. Stepping through those doors felt like a huge weight being lifted off my shoulders. I can’t even describe the confidence I had in Jensen’s team  in the weeks prior to his arrival. 
Leaving post-Glenn!
Although it has only been one year, it feels like an eternity. Jensen is now almost 8 months old. He is not just living, but thriving. He is making me realize every single day that the diagnosis does not matter. Half of a heart or not, this kid has more life and love than anyone I know. I still put my gloves on and fight for him every day. But now, I fight even harder because he gives me a reason to be better and stronger. I thought my world was shattered October 14, 2011, but it was just beginning. He’s opened my eyes to some of the most beautiful, resilient kids who also happen to have “defective” hearts. I’ve met many amazing heart moms with incredible strength. My world is now a heart world. That means that we spend a lot of time in hospitals and doctor’s appointments, that also means we cherish every moment. Jensen has taught me life is even more precious than I imagined. The life of a heart mom is far more rewarding than I ever hoped. 



  1. We have followed Jensen's progress since his birth. Aunt Sandi keeps us posted and we go to the blog spot alot! I don't know who is the most amazing, Jensen or you, his parents. He is a beautiful child and while following his progress I have cried and rejoiced along with you. Now when I say, "Oh honey,come look!" My husband will say "What's Jensen up to today?" He is a precious little boy and we are continuing to pray for all of you!!