Caleb, 10 months

9 months 0old

After surgery, March 1, 2007

At Heart Walk with brother Ryan

At the Zoo, 11-1/2 months old

11-1/2 months old

With Daddy at the Heart Walk He loved Elmo, Zoe, and Cookie Monster

My pregnancy with Caleb was a little crazy. I had some problems during the pregnancy so I had more than the usual amount of ultrasounds. All of my testing came back negative, and ironically, since my sister has truncus I usually get a echo during pregnancy, but this time the genetic counselor forgot to put it in, and I was told as long as they see the four chambers, that I would be OK.

I never once thought or dreamed that I would have a child with another heart defect, I was only worried about truncus and my chances of that happening seemed pretty slim. It is funny because I thought that the heart looked funny during one of the exams at the end of the pregnancy and she told me it looked fine. Mother's instinct I guess. But in the end I was more worried about this being my third c-section than anything else. I was told the baby was fine.

Caleb was born 10-26-2006. He swallowed fluid during the c- section so he was brought to the NICU. My husband and I were very upset as our 2nd son, Cameron had the same problem and was whisked away kind of shattering the wonderful birth you dream about. I still was very optimistic because Cameron was released the second day and brought to me, I assumed Caleb would be the same. I was wrong.

The second day we were told he had a murmur. Then the cardiologist came to my room and said, 'your boy will be fine, he has TOF". I was devastated and I blamed myself, after all I had a sister with Truncus, I did this to Caleb, our family was going to have to deal with a heart defect again. I knew how it changed your family, I saw it first hand in 1981. I wanted to go back to the day before his birth, when I was nervous about having a c-section, not nervous about open heart surgery on your newborn.

Then I got positive. I transferred Caleb to CHOP when I left. I was told he was lucky for being unlucky in that he could wait for the surgery, they could most likely save his valve, and that TOF repair is very successful. So, after an extra 3 days in the hospital he was sent home with us.

We were so worried that first night we did not even sleep. It was such and incredible feeling to have him with us. We went back to the PC that diagnosed him, as CHOP works with him, and he is a wonderful PC. Caleb tested negative for the chromosome deletion test (the FISH test). The PC still feels that there is some genetic connection in my family, and I believe it also. They just have not found it yet.

Caleb was scheduled for surgery on March 1, which is next week. Dr. Spray is his surgeon and after reading every possible thing on him, I feel he is the best. I know Caleb will be fine, but we are nervous. I have to say that this has made me appreciate everything so much more.

I feel blessed to have the 3 sons that I have been given and I wouldn't change it for the world.

October 2007 Update

Caleb had his repair March 1st of this year. They were not able to save his valve totally so he may need a valve when he gets older. He has been doing incredibly well. He has his next check up this December I pray everything still looks good. He did have a staph infection at his incision site so his scar is a little hypertrophic, but other than that he is doing great.  

What a year this has been for us all! I know it has forever changed my family. We are all so grateful and never take anything for granted in life. Caleb has taught us so much about what is truly important. He turns one this Friday on October 26, 2007. I for one can not wait to watch him blow out his candles!