Saving Little Hearts

On July 4, 2005 at 8:32am Addison Jacob arrived in the world; our own little firecracker. The next morning the doctor heard a slight heart murmur and sent the baby for an EKG and an x ray. Later on that day he phoned us to explain that from the results of the tests he thought Addison had a Ventricular Septal Defect (VSD). We were told that this is better known as a hole in his heart. The next day we discussed the things that we needed to watch for that could mean Addison was having complications. We let everything sink in and took our “little man” home on July 6, 2005. He was watched closely by our pediatrician for 5 days until he could be seen by a Pediatric Cardiologist (PC). On July 12, 2005 the VSD was confirmed by an echocardiogram. Addison had a moderate size hole in his heart and possible stenosis in his pulmonary valve caused by the heart working harder due to the hole. However we were told that the outlook is good; most holes close on their own over time. The PC discussed with us once again all the things to watch for, trouble eating, sudden falling asleep while eating, trouble breathing, and trouble gaining weight. We returned to the PC in August when Addison was 6 weeks old. Addison was doing great he had gained a good amount of weight and had no blue spells or trouble breathing. Our next visit wasn’t going to be until November; when Addison was 4 months old. The last 2 visits had gone so well if this visit goes the same; we wouldn’t have to go back until Addison was a year old. November 3, 2005, a day we will never forget. Going to this appointment hoping for the best turned into a new diagnosis and upcoming surgery. During the echocardiogram the PC discovered that not only was there a hole in his heart and the stenosis of the pulmonary valve. He also discovered that there was a blockage and a muscle build up from the heart working so hard. It was explained to us that these four things make up Tetralogy of Fallot. A CHD that needs to be repaired with open heart surgery. We were very lucky though because Addison was considered a “pink tet” and never had any complications before his repair. The problem we had was that with no complications, looking healthy and gaining lots of weight the concept of open heart surgery was hard to digest but….
Addison’s repair took place on January 3, 2006; everything was a great success with a great outlook for the rest of his life. A wonderful out come for our “special little man!”

UPDATE March 2nd 2006 – At his follow up they found another hole in between the bottom 2 chambers of his heart. This is a hole that would have been left alone during his surgery. We are now just waiting and hoping that it closes on its own. Our next appt. is in Sept. when we will see what else Addison has in store for us!

UPDATE September 28, 2006 – Addison had a sedated echo today to get some good pictures of his heart. The small hole they found at his post op appt is closed; the Dr could not find any signs of it today!!!!!! His gradient (the pressure in his pulmonary valve) is basically unchanged. 8 weeks post op it was at 18% and today he said it was about 30%. He explained to us though that on the echo the gradient is always higher and if the were to do a heart catheterization it would probably only be around 20%. There is NO leakage around his pulmonary valve, yes I said NO leakage and that is such a wonderful thing to hear!!!!! The only concern Dr. Lapuk had was that right ventricle is larger that he thought it should be. He however is going to compare this echo to older ones and see if this is just the normal for Addison. And the best news of our day!!! We do not have to go back until next September. Yes a whole year away!!!!!

UPDATE October 01, 2007 -- Addison did great today and came out with flying colors! Everything is just about the same as it was a year ago!!!!! Mommy and Daddy were so proud of Addison! He sat great for everything ...well as great as an active toddler can! No tears, no telling the Dr no!! We go back again in Oct of 2008.