Did you know that congenital heart defects are the #1 birth defect?! I didn't! I did not know much about CHD at all until we were blessed with our heart baby, Aaron. We would not change ONE thing about him. Not even his precious heart. Aaron was born on 7/8/11. They said he was small for his age and called him a "wimpy white boy" which is common in small white males born under the expected weight or early. Aaron was sent to the NICU because his oxygen levels were good but he was working too hard to keep them there. We stayed in the NICU for two weeks before they did an echo to look for other causes of his breathing difficulty. That is when they found his CHD, coarctation of his aorta. Aaron was immediately airlifted to Batson Children's Hospital in Jackson, Mississippi. We were rushed into the NICU where he had another echo. We were told the diagnosis at that time and that surgery would be needed. They said the heart team would meet and decide when. They wanted to balance giving Aaron time to put on more weight with not letting him get too sick. We got a call early the next morning to say they were doing surgery THAT day! He had surgery on 7/21/11. We were sent to PICU for several days and then to the cardiac floor. We FINALLY took him home on 7/30/11 at only 4 lb 3 oz.
Once we were home the name of the game was weight gaining for Aaron. We switched to formula September 1 and he took off! Still small on the growth chart but he is doing so well! We went for checkups to the cardiologist every few weeks. On one visit we were told they were not happy with Aaron's aorta. They thought he may need a heart catherization to make the aorta wider. It was not growing with his body like they thought it would. It was still too small to provide proper circulation. We were devastated. We thought we were done with hosptials. The worst was that we were sent home to wait not knowing if the procedure would be in a week or 10 weeks from that day. We had to constantly watch him for any signs of poor circulation. It was exhausting and so nerve racking. Finally, the heart team decided to schedule the heart cath of November 1. We went in that morning and had to walk Aaron into the procedure room. Then I had to hold him down as they started his IV. The procedure was a success!! They were able to triple the size of his aorta! We were release the next day and took Aaron home. He took off from that day! He started eating much more! He really started progressing as far as his physical milestones.
Snuggling with dad after his heart cath:
We still go to the cardiologist for regular echos and check ups. By the way, any advice on getting a 6 month old to be still for an echo?! We still travel to Jackson for those appointments. We hope after a few more good visits, we can transfer to a doctor closer to home. But right now, Im just not ready to not use Dr. A. He knows us and know Aaron inside and out.
I read a quote on Pinterest recently that said "You don't know how brave you are until you have to be." That pretty much describes our last 6 months. I asked my mom the other day, "How did we do that?" It blows my mind that we lived through that experience. Our journey has not been what we expected but we would not change anything about it. We love our baby boy and are so happy that he is healthy now. I know that blogs of other heart mommies really helped me at time. Hope that this pinterest link up can help others find some comfort as they start their CHD journeys and remind them that they are not alone.
To see other blog post from CHD mommies click here:
