Wednesday, October 04, 2006

This is our heart "story". When I was pregnant with our third child, I went in for my routine 18 week ultrasound and discovered that our little boy had several issues going on. He had what looked like cyst on both sides of his neck and also enlarged kidneys. His heartbeat was nice and strong and looked healthy. I thought "OK, his heart is ok the other things we can handle when he is born. I had an amnio done that day to check for any chromosomal defects. This test came back perfect! I continued to see my specialist and every ultrasound looked better and better. I was so excited to finally meet this little guy and hold him and see for myself that he was ok. On July 9Th we welcomed Samuel Jason Bocanegra weighing in at 9 pounds and 1 ounce, 20 inches long. He was born at 37 weeks and boy was I glad since he was such a big boy. Right after he was born I had to kiss him and let the nurses take him over to the nursery to get evaluated because he "grunting" alot. My husband stayed right with him. My husband then came back (with tears in his eyes) and stated that Samuel had a heart murmur. My mom has had a heart murmur all her life I knew this wasn't a big deal. A pediatric heart specialist was called in to give our son a total heart evaluation. After waiting all day we were finally able to speak with the cardiologist about my son's condition. He was on oxygen had iv's in him, he had a PDA and what looked like a bicuspid valve. He informed us that he would give medication for the PDA (to get it to close) and as far as the bicuspid valve it is fairly common and usually doesn't require anything at the time. He let us know that Arnold Schwarzenegger had surgery for this when he was around 40 years old. I thought "man, Arnold looks good!" I felt at peace with all of this. Samuel was in the hospital the first 12 days of his life and then we finally got to bring him home. He had oxygen at home for 5 days and then followed up with his cardiologist, he was able to discharge the oxygen and would do follow-ups with Samuel to check on him. After seeing him several time the first month it was decided that a heart catherization would be best to get a better look at Samuel's heart. (All the echo cardiograms he had kept getting worse and worse.) So on October 5th 2004 Samuel went in for his heart cath to take care of some stenosising and get some good pictures of his heart. That evening the surgeons informed us that everything went well but they had found multiple heart defects and he would require open heart surgery and soon. On Oct 11th Samuel went in for his surgery. It was so hard to let him go. I just wanted to take him home and for everything to be OK. Samuel had made it through a long and difficult surgery and we were finally able to see him. It was heartbreaking to see our little boy like that. I didn't want to leave his side for a moment. The nurse finally convinced me to go home get a good nights rest and get ready for the long healing process. (They promised they wouldn't leave side for a second.) After a surgery like that they require constant attention. We were blessed with wonderful nurses. At 5:00 am we received a call saying we need to get to the hospital fast. My son was not staying stable and the surgeon didn't know if he was going to pull through. We were not able to stay in his room until he got a little more stable. Finally we were able to go be with him. Then around 11:00 that morning everything fell apart again we had to leave his room and the next several hours were Hell. We were told numerous time he wasn't going to make it that we would have to come and say goodbye. How do you say goodbye to your 3 month old son? That evening he suddenly became stable and we were able to see Samuel and to stay in his room. The next 3 weeks were a total roller coaster ride with many ups and downs. Samuel's body started slowly shutting down and he was never able to recover from his open heart surgery. He passed away on November 6. 2004 just 3 days short of 4 months old. This is a very edited version of our story. We are forever changed. We feel so blessed and honored that God trusted us with Samuel. You can read more about him at We hope to raise awareness to Congenital Heart Defects (CHD). Thanks for letting me share one of the most beautiful and sad times of our lives.
Susan Bocanegra

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