Our life with a congenitial heart defect

After 6 years of trying to get pregnant and 2 miscarriges, we were soo excited to finally hold our little son. He weighed 5 lbs. 15 oz. and was 19 in. long. Right from the beginning he had such a hard time nursing. He would fall asleep nurse a little and have to be given a bottle, and just not eat enough. At the hospital he slept for 5 hours without waking for food!!!!!! I had the nurse wake me every 2 hours so that I could feed him. He lost alot of weight before we went home and they only discharged us because we promised to bottle feed him at home. The first 6 weeks we thought we were going to die from lack of sleep. I would set the alarm to wake up and feed him becasue he would only take about 1 oz. of formula at a time. I made several sick calls to the doctor to find out what was wrong and why he was soo screamy all the time. He would scream all of the time. We now know he was hungry but didn't have then energy to eat. So he screamed because he didn't realize why he wasn't getting full. Every time we went to the doctor she assured us that he was fine, he didn't eat a lot because he was small in size therefore his stomach couldn't hold a lot of food. So we kept trying to get him to eat well.

I know he is our first, but we had been around my neices and nephews a lot so I knew about how much he should be eating. We knew that when he would only take 3/4 of an ounce that he needed to eat again with in the hour. I kept meticulous logs so that I would know what he ate and when so that I could make sure he was getting enough. We were feeding him 13-14 times per day just to get him to take in 15 ounces total!!!!!

In late November our doctor heard what she thought was a harmless heart murmur. When the murmur is heard in the front and the back it is normally harmless, she could hear his in the front and back. We didn't know it at the time but his hole was soo large you could hear it in the front and the back and later feel it with your fingers. We were sent to our local children's hospital to have an EKG and echocardiogram done. After the EKG the doctor came to talk to us and wanted to know how well he ate. boy were we ready to talk about that. He did not give us the results of the EKG and said he would be back after the echo. We knew something was wrong. After it was all said and done he had a significantly large hole in his lower right ventrical. Later we were told by the surgeon that his hole was about 1/2 inch big. He had Ventricular Septal Defect (VSD). VSD's are normally not caught until the child is 6 weeks old. We were devestated. I remember being told by him that this was a very common heart defect and was easy to "fix". On the way out of the hospital to our car my husband asked if I was okay and that the doctor had said it was common. I remeber telling him "Nothing is common when it involves your child" with tears just streaming down my face.  I couldn't even put him down until I had to at the car to go home.

The month of December was very long, his eating got worse by the day. We constantly had a bottle in his mouth trying to get him to eat to gain weight. We could tell by looking at him that he was not gaining enough. We had a ped. visit late in the month and he had only gained 9 oz.!!!!!! We went to that visit knowing we would ask for a feeding tube if he had not gained enough. The tube has been a blessing and a curse in the same. Just because we could feed him didn't mean we should feed him. His stomach had to learn to have food in it!!!!!!  We spent many many days in "pukesville" from overfeeding. We eventually got it down and he gained so much more weight.

In Feb. 07 we were told he was being presented for surgery at their next meeting with all the cardiologist and the surgery staff. He was approved and his surgery was set for May 19th. On the 18th we got a call that we were eing bumped for an emergency surgery!!! Our surgery was re-scheduled for the 24th. The night before we didn't sleep at all. We cried for the first hour while laying in bed. We soo wanted to go throught the surgery for him to spare him this ordeal. At midnight I had to cut off his feeding machine and flush his feeding tube and he was not allowed anything else to eat. By 1:00a.m. he was fussing for food and had me up all night long. He would only sleep if I was sitting up holding him and patting his bottom (which he likes a lot as a comfort).

He came through surgery with flying colors!!!!!!!!!! Every stage of surgery went off without any problems at all. When he was taken off the by-pass machine his heart did not miss a single beat.  We asked the doctor is there was any leftover leakage and he said it was completely patched with no leakage when they restarted his heart. He is home now and finishing up recovery. His breastbone will take 6 weeks to heal completely. We have a new child, he has more energy and for the first time I was able to hold him and give him a bottle without a war!!!!!!!!!! He took 2 and 1/4 oz. at once. Hopefully he will continue to progress well.

My final piece of advice is this, MOTHERS AND FATHERS DO KNOW WHEN SOMETHING IS WRONG. I knew from the beginning that something was wrong but was always reassured he was okay. Don't be afraid to be pushy to get the best for your child. It was hard to hear that he had a hole in his heart but a relief to know we weren't crazy, something was wrong.

mom2jedd