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February is Congenital Heart Defect Awareness Month

February is Congenital Heart Defect Awareness Month

The month of February is Congenital Heart Defect awareness month. I would like to share with you a little bit about our family and why this month is so important to us.

About a year and a half ago our sweet baby Harvey was born. He is our second born, we have another son who is two years older. For both boys, I had a healthy pregnancy, normal check ups and everything. My husband and I chose to be surprised on the gender each pregnancy. This drove a lot of people crazy, but I think that made it all the more fun.

The day Harvey was born was a long and emotional day. He came out crying, then stopped crying. I had a repeat c-section, so I was behind a big blue drape not really knowing what was going on. I was scared, but trusted the NICU nurse and respiratory therapist that were taking care of him. They knew something was wrong when they could not get his toes pink. His oxygen saturations were low, but not super critical. I got to kiss him fast and then he was off to the NICU. He had a breathing tube placed and on a ventilator. A cardiologist came and performed an echocardiogram ( an ultrasound of the heart) to identify what was wrong. She was able to tell us that he had a congenital heart defect. His defect is moderate mitral stenosis- which basically means his mitral valve within his heart wasn’t formed correctly affecting the ability for his heart to push oxygenated blood through his system.

He would then get his breathing tube out when he was four days old, I was able to hold him that day. He then got worse and was transferred to a large children’s hospital to the Cardiac Intensive Care Unit. It was scary. We would be there for nine weeks total. He would have a breathing tube placed two other times. He would have an bacterial infection in his blood from his PICC line and get really sick. Some nights the attending physician would be at Harvey’s bedside watching him closely. We even met with the surgeon twice in case he need surgery to repair his mitral valve. It was so scary.

I remember around week five his medical to see if he could grow, gain weight and try to hold off on surgery. Well, Harvey did it! He got on a good medication regimen. His heart function was stable. He was not taking much if any milk from a bottle, so he had a NG tube for his formula. That was something we would be okay with. We really just wanted to go home. To bring Harvey home to his house.

He was 8 weeks old when he got to go outside for the first time. He went on a walk in his double BOB stroller with Stanley right next to him. As I am typing this up, I have tears in my eyes. One would never think that I would be tearing up over having your baby go outside for the first time. Well, it was a great moment for him. He got to see the sunshine, feel the fresh air and we all got to be together as a family. The most important part of the walk was being together as one. Our weeks in the Cardiac ICU were so hard on everyone. I was staying in a sleep room every other night. I would leave the hospital in the afternoon, pick up Stanley from daycare and head home. Then I would make dinner, Jared would come home and we would eat and get Stanley ready for bed. We would hurry up and put him in bed, then duck out. My mom would watch him when we drove to the hospital to see him at night. On the nights I would spend the night, I would head there right at bedtime. That was so hard leaving Stanley and Jared. So many tears.

I know we had many hard days in the past, but the road is good ahead. We have some many wonderful days together. He is doing so well. We all say that he just needed to get home. He did, he just needed to get home. Since being home, Harvey has surpassed everyone’s expectations.

He is 1 in 100 with a congenital heart defect. He is a fighter and one of the strongest kids I know. We love him very much.

Harvey holding my hand in the NICU

Harvey holding my hand in the NICU

Harvey home for over a year and doing great!

Harvey home for over a year and doing great!

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