How We Got Here...contemplating a novel artery stretching surgery.

What Does that Mean?

At Kalvin's three month old check up, his pediatrician, Dr. Cloherty (best pediatrician ever), noticed that the pulse in his left leg was non-existent and sent us directly over to Kalvin's cardiologist, Dr. Oscar Benavidez at Children's Hospital Boston.  I was alarmed and nervous, but really kind of numb to it all...I had become accustomed to expecting the unexpected.  This was life with a CHD baby. It was a roller coaster ride and every doctor appointment made me a nervous wreck.  You never knew what the doctor was going to uncover.  The time in between doctor visits became somewhat relaxing...in a way.  I can relate it to is taking a big exam. You head in to take the test as prepared as possible,  but still get butterflies in your stomach nonetheless.  As you sit in your seat, you realize it is now out of your control. You take the test and do the best you can with whatever questions you are given.  And after you complete the exam and begin to head home, you feel the weight lift. You feel a sense of freedom. A sense of relief.  You take a deep breath and enjoy the moment. You are done.  It is over.  For now.  You feel free until the next exam is scheduled. That is how I felt in between Kalvin's doctor appointments for the first five years of his life.  Five years. That is a lot of exams.

Kalvin 3 months old.

Kalvin's leg was not receiving enough oxygenated blood flow as a result of his coarctation.  Dr. Benavidez scheduled Kalvin for a catherization to try and widen his coarc. It was hard to fathom going back into the hospital for another procedure so soon. He was three months old. He was a real little person now. A huge part of our family. When Kalvin was born we knew he was headed for open heart surgery in five days. We had twenty weeks to prepare.  Prepare...I say prepare; when in reality, nothing can prepare you for handing your five day old baby over to have open heart surgery.  Nothing...

When Kalvin was born he was immediately whisked away to the NICU and then transported over to Children's Hospital Boston.  I had to stay behind. I was in my room at the adjoining hospital, Brigham & Women's, where I had given birth, until the nurses deemed me well enough to be mobile. I felt like a prisoner. I was determined to get up and see my baby as soon as possible.  It was pure torture.  My mom stayed behind with me while Lars and my dad followed Kalvin over to Children's.  It was comforting having my mom there with me; but for the first time, she couldn’t make things all better. There wasn't much either one of us could say.

Within a few hours, before I had even seen Kalvin again, I authorized (over the phone) a catheterization procedure that was needed to make a small  hole in his heart. It was necessary to make an opening in the wall between the upper filling chambers of his heart so that the oxygenated blood could mix and flow to the rest of his body. So he could survive until his surgery.

Once his procedure was complete and he was resting,  I was wheeled over to Children's to visit with my precious baby boy.  He was just hours old.  I remember coming back from my "first visit" with Kalvin that evening.  He had stolen my heart. Touched parts of my soul I didn't even know existed.  I was head over heels in love.  A love like I had never felt before.  I was also furious with myself.  I felt so naive.  I actually had no idea I would fall that in love and become that attached to another person in such a short amount of time. I didn't know it was possible.

I had really convinced myself in the time between my twenty week ultra sound and his delivery that it would all work out one way or another. That having his by-pass surgery right away was so much better than waiting a few months, as some mother's have to, because I wouldn't really know him.  I wouldn't really know him yet?  How had I tricked myself into believing this?  How?  The truth is I had all ready spent forty weeks with him. I knew him long before his delivery. I am embarrassed to even admit that I thought that. But that is the story I told myself that helped get me through those twenty weeks. That was my tiny shred of security. I clung to that security blanket to survive;  and then just like that,  it was taken from me after seeing Kalvin...and I hadn't even held him yet.

Now, we were once again getting ready to hand our three month old baby over to a surgeon.  This baby was now such an important part of our family.  I knew this procedure would be much easier on Kalvin than by-pass surgery.  I knew he was a fighter. Both of which provided some comfort. We signed the waivers and kissed him good-bye.  It was heart wrenching.  It is a feeling I can't even begin to describe.  You really feel like you could just collapse right there on the floor as you kiss him goodbye.



Kalvin held his binkie in his mouth or it would shoot out.

 Dr. Benavidez came and gave us the update that Dr. Lock had gotten the wire up and through his coarc and ballooned it open, but that it wasn’t as successful as they had hoped. They weren't able to widen the coarc as much as they hoped.  And they had trouble getting the wire up his left leg.  Trouble with the femoral artery.  But he was fine.  My baby was fine and we could take him to the Step Down Unit and stay with him overnight.  That is really all I heard. We were going to the Step Down Unit...my baby was fine.  We weren't even heading to the ICU.  This was fabulous news to my ears.

I stayed overnight on the cot beside Kalvin's crib. I awoke at two am to a team of doctors surrounding his crib. "What is the matter? " I asked.

"Oh, we are having a little trouble getting a pulse in his foot," one of the nurses replied.

"What does that mean?? What does that mean..." I wondered.

Who would have thought that would lead us to this day.  Here we are,  eight years later facing the decision of whether or not to undergo a novel artery stretching surgery.  Transplanting vessels Kalvin will grow in his own body to replace that piece of damaged artery in his left leg.