Meet My Heart Hero – #CHDAware

Meet My Heart Hero

Meet my heart hero – my son!

February is a very important month for our family, because we celebrate a very special hero.  During the week of Feb 7-14 we are celebrating my son’s courage and strength, as my son is a Heart Hero!

Jacob after heart surgery

During this coming week I will share with you different stats about congenital heart defects.  My son was diagnosed with Tetralogy of Fallot.

Listed below are examples of different types of CHDs from the website. The types marked with a star (*) are considered critical CHDs.

If you are looking for more information about congenital heart defects, check out this list from the CDC website of other organizations committed to understanding more about congenital heart defects.

You can find out more of my son’s journey in my book at “Jacob’s Journal – My Journey Home.”

Jacob's Journal

This book is a recount of what Jacob went through the first 6 months of his young life, and the unique thing is I wrote it as if Jacob was telling the story, because in fact it is his story. I also created a glossary of terms so if families hear those words, they have a better understanding of what they mean.


If your child is a “Heart Hero”, please comment below what their diagnosis is.


Total Heart Repair for Tetralogy of Fallot

 It’s the morning of September 21, 2006 at 5:45a.m.  We are awaiting the nurses to check Jacob in for his total heart repair at Advocate Hope Children’s Hospital in Oaklawn, IL with Dr. Michel Ilbawi (ranked among the nation’s top 1 percent in his field as a Pediatric Heart Surgeon – see press release.)

As we sat in the room looking at how brave our little boy was, it was getting harder and harder to wait.  He looked like such a big boy in his “big boy” hospital gown.  We went through the normal procedures of answering questions for admittance, they took his weight, height etc., and then a chaplain came to say a blessing with us and blessed him with holy water.

Dr. Ilbawi’s nurse had come in to talk to us before the surgery to see if there were any questions we had, and as she was talking to us she was informed of a concern that arose that the 2 bags of frozen platelettes they ordered for the surgery, only one arrived.  She excused herself as she was very upset that this happened.  She came back to inform us that they were going to continue with the surgery and she was expediting a bag from another hospital over immediately.

It was around 7:30a.m. when a nurse came for him.  As I handed my little baby off to a complete stranger, all I can think about was “is he scared“, “does he know what’s going to happen” and of course, I was quietly praying to God to watch over him during the surgery, and keep him safe. I was trying to fight back the tears that started building up in my eyes as I watched them walk through the door to the operating room. He’s so little to be going through such a big surgery.

It would be about 5 hours before we would see him again. Of course it felt like days, until I could hold my precious little baby again.  We were fortunate that as we waited anxiously in the waiting room, his nurse kept informing us of how the surgery was progressing. How does ones keep themselves busy for that period of time when your baby is laying on a surgery table, getting a major operation. No books, or magazines, could keep my mind off of what was happening behind that door. I won’t lie thoughts good and bad entered my mind, but I needed to stay positive, so I pushed those bad thoughts out of my head and felt good knowing that he had one of the best surgeons working on him.

The Surgery

It was over! The surgery was done and Jacob was recovering in the PSHU (pediatric surgical heart unit) where we found Jacob hooked up to a lot more monitors and tubes then his first surgery at 16 days old. He had a large tube draining from his chest from the surgery and was so heavily medicated. Even though we had been here before, it doesn’t get any easier. I mean how could it? You see your tiny baby laying there lifeless and in pain, with tubes and monitors strapped all over him.

So we hunkered down for our stay. We wanted to make this stay a little more normal for him, so brought his favorite elmo puppet, his blanket, clothes, books, we had some of his Barney DVD’s and his favorite bedtime music.

As he started getting better and some of the tubes and monitors we being taken away we asked the nurses if there was a way he could sit up a little to make him a little more comfortable.  They were so nice they found this little swing which he obviously loved.

My husband I took turns staying with him at night.  I can still hear the alarms go off when his heart rate would go too fast or the oxygen levels would go to low.  I remember my heart stopping as I saw the nurses come in to evaluate him.   It’s strange because when I listen to the same bedtime music while putting him to sleep years later, I can still envision myself sitting in his hospital room. It’s weird how that music soothes me and brings me back to that time when I would sit there staring out the window next to his bed, as I watched him sleep, recovering from major surgery. That time is so engraved in my head because it was such a traumatic time for us.

The nurses were fabulous.  They were so good with him and with us, they really made the time in the hospital easy considering we were away from home.  At the time of his open heart we lived in IN, so we were in the hospital all day and night since we had no other place to go except to our hotel.  It was nice because the nurses would beg for us to go out and get something to eat, just so we could get some fresh air and take care of ourselves.  They knew that we weren’t doing ourselves any good by just sitting in the hospital room.


We would get a blanket from the car and go to the park with our dog, who was staying in the hotel and have a little picnic.  Just to give us all a little break.  It was comforting to know we had such loving and caring people taking care of our son.

Jacob was making a tremendous recovery and even though we weren’t in the hospital for a long time we tried to make ourselves more at home.  We all all wore our Notre Dame shirts as we would watch the football game on the t.v., even baby Jacob wore his #1 Notre Dame football jersey.  But really I wanted to share this photo more to show you how proud we are of our little champion.  He really is the strongest person I know, for all that he went through at such a young age.


The doctor’s were all impressed at what a strong boy he was and how well he was recovering.  However, don’t get me wrong, we did hit some bumps in the road.  Because Jacob had to be taken off of the Propranolol (beta-blocker) for his Wolff Parkinson White a few days before the surgery I was getting very nervous that they had not put him back on it, but they wanted to see how his heart was going to react without it.  Well as I expected he had a few SVT (supraventricular tachycardia) episodes that made them have to intervene with Adenosine. This medicine scared me because of what it was indicated to do, basically slow down or stop the heart from an abnormal rhythm.  This medicine would make Jacob very sick.

But after a few days of trying to get everything under control we were told that we were going to the “step down” unit.  Yeah, I loved hearing that.  Here is my little man heading to the step down unit.

We are ready to head home and have fun watching our son grow and learn as he begins to reach more milestones.

Our faith held my husband and I together during this tough time. We believed he was in good hands and because we were there for each other made this experience easier to handle. This definitely brought my husband and I closer together and that’s really what Jacob needed. Loving, caring, supportive parents working together to care for him.