Friday, June 23, 2006

Smelker family heart story.

Our little miracle, Caden, was born on July 18, 2005 at 3:35 p.m. He weighed 10 pounds ½ ounce, and was 22 inches long. Previously in 1995 I had a miscarriage and then I suffered two back to back miscarriages prior to becoming pregnant with Caden. Naturally, I feared I would lose him too. As I held Caden, my ten pound bundle of joy, I remember thinking that I could finally relax. At birth he had a heart murmur but the doctor said it was probably “just a valve that had not closed yet and would do so on it’s own.” She informed us and that all looked well and reassured us that there was nothing to worry about. Just to ease our minds the pediatrician set us up with an appointment to see a pediatric cardiologist for the day we would be discharged. When Caden was about twenty four hours old he went into respiratory distress, his breathing became very labored and his jaundice levels rapidly rose. The pediatrician was called in at 4:30 am. That morning, we were supposed to be discharged home but instead we followed the ambulance to Devos Children’s Hospital. It was only a forty five minute drive, but it seemed to take forever. After arriving at Devos, the pediatric cardiologist did an echo and CT scan. Caden was diagnosed with a Congenital Heart Defect (CHD) known as a Coarctation of the Aorta (COA) and a valve issue. A COA is a condition of the main artery (aorta) that carries blood from the heart to the body. The aorta is pinched or constricted and obstructs blood flow. We were told he would have to have surgery. Later the surgeon came in and surgery was set for 7:30 a.m. the next morning. Talk about shock! No sleep the night before, learning our baby had a serious heart defect, and we now had 12 hours to accept everything and prepare for surgery. Not to mention deciding what to tell our three other children, since we were not coming home right away with their baby brother. The next day, Caden was already sedated in the OR, but surgery was cancelled because he suddenly sounded a bit “strange”. The surgery was cancelled and he was returned to the Pediatric Intensive Care Unit so the doctors could find out what was going on. Soon we then found out he had pneumonia too. After getting over the pneumonia and jaundice, Caden was discharged home at 12 days old. His heart condition was now stable enough to hold off on the surgery. The doctors hoped to wait as long as possible so he would be stronger, maybe hopefully they could even wait until he was about a year old. Rapidly his narrowing became worse. We were told the surgery would have to be done sooner than hoped and without the surgery then Caden might have three months before having MAJOR heart problems. So in August at 5 weeks of age Caden had his COA repaired. He did really well with surgery. In November his COA reappeared and was once again causing blood pressure problems. Most repaired COA’s never reappear, but Caden’s was one of the few the doctors had warned us about. In February, he had a balloon angioplasty to re-open the narrowed area. They immediately saw improvement with the previously operated COA but also found another narrowed area in the arch of the aorta, and checked the previously diagnosed valve issue. At this time, they are not causing any functional problems so they will continue to monitor all three of his heart defects. Currently, he has no pending procedures and since his angioplasty he is doing wonderfully. He is now off all meds and he is a very happy and energetic little boy with no developmental delays or growth issues. He will always have to be closely monitored by a cardiologist and though we do not know what his future holds or if he will need more surgeries or procedures in the future, we praise God as we prepare to celebrate Caden’s first birthday in less than a month. He is our Miracle, our joy, and our strength. I write Caden’s story as his first birthday approaches, because it is my goal to spread the awareness of Congenital Heart Defects.

1 comment:

Cassie said...

This is a great way for everyone to completely understand our heart baby's issues! Carepages are wonderful but this gives us a chance to see exactly what the issue is without completely reading the entire update!

Thanks for sharing! You've done a great job! :)