Let me take you through one of the worse events in my life. I was single at that time and was taking my son for a routine visit to his primary care physician and he heard a heart murmur. He told me that some children just have them, but wanted us to follow up with a cardiologist. So, right after leaving I called the cardiologist to get in and the wait was almost over 8-9 months! I called his primary care back and told him. The next thing I knew we had an appointment a couple days later. My mother decided to go with me, just in case. I am forever grateful for her being there for both of us!
The cardiologist office was at our local children’s hospital in the city. When we arrived we checked in and waited at least about 45 mintues before being asking back by one of nurses. Once we were in the room the doctor came in and listed. He did hear the murmur and decided to do an EKG, Echo and xray on the spot. Once all of those were finished we were asked if they could do more on the echo. Yes, of course you can. I remember while walking down the hallway thinking there is something wrong with my baby. I know there is they would not ask for more photos of his heart if there was not anything wrong. They want to make sure what they see is what they see. I remember walking into the room and asking questions to the ultrasound tech and her saying that she cannot tell me and that I will have to wait for the doctor. Once the tech was finished and my mom, Ethan and I were back in the room I turned to my mom started to tear up and say, I know something is wrong with Ethan. My mom held me and told me that no matter what we will get through this and that we are a strong family. The doctor then took forever to come back in. I know for sure that it was at least about an hour before he came back into the room. When he did arrive he did tell us that Ethan has cor triatriatum. Which by deffination is: (or triatrial heart) is a congenital heart defect where the left atrium (cor triatriatum sinistrum) or right atrium (cor triatriatum dextrum) is subdivided by a thin membrane, resulting in three atrial chambers (hence the name).
Obviously I was young at the time and had no idea what he just said! I made him write it down for us and explain it in terms that we could understand. While he explained it he drew a photo and he also showed us on a diagram. When he was explaining he said there are two sides of the heart and in the middle there is tissue in between along with a hole. The blood flow is supposed to go straight down each side, but instead it is going inside the hole and around the tissue. He then said that Ethan would have to have open heart surgery to get the tissue out and close the hole. Ethan was a premature baby and was still weighing less than he should at that time, he wanted us to come back and get check out again in a month, but wanted to hear from us if there were any signs of distress or discomfort and to keep track of feedings, input and out put and/or vomiting. Ethan needed to be feed every 2/3 hours because he was spitting up some of the formula. The doctor was hoping that we could wait until about 1 year old before he does surgery on Ethan so he gave us medication and sent us on our way.
The next appointment that we went to Ethan had to have another echo and I remember walking down the hallway feeling alone and uncomfortable. Once we were in the room for the echo I sat next to Ethan looking at the screen praying that nothing has change for the worst and hoping that it either stayed the same or somehow it got better. Imaging having a baby laying on a medical bed and you holding his hand, face and torso. All while looking at the screen in front of you and the technician taking photos. Your not 100% sure on what your looking at, but you know it is off and not right because you can feel it in your gut.
So, back to the exam room we go and wait for the doctor. The doctor arrives and says that we need to do surgery sooner than we thought because one of the sides of the heart is becoming enlarged. So, we set up the surgery date for when they suggested and we are supposed to be there at 5am!
A few days before surgery I called my doctor because I was having so much anxiety and couldn’t sleep. Thankfully she gave me medication so I would be able to sleep.
The morning of the surgery we walked into the hospital and it was pretty much empty you see nurses and some doctors, that’s really it because it was so early in the morning. I remember they came in and drew blood and rubbed cleansers on his chest. I was able to walk back with Ethan and there really were double doors like they tell/show you in the movies. I kissed Ethan and told him I love him. Once they walked through the doors to the other side I could feel my whole body shut down and I backed up to the wall and squatted down and cried. I just handed my son off to the doctors to perform open heart surgery. Ethan was only 5 months old at the time! I had no idea what could/might happen. I prayed and cried! I went back out to the waiting room where my immediate family was.
The head nurse came out to check on me every few hours and give me updates. My Papa from Oklahoma came in town to be with us that day too. I was so blessed to have many of my family members and friends stop by through out the day. Many brought food for everyone and gifts for Ethan. It felt like days until I was able to see Ethan again, but it was about an 8-10 hour surgery. The hours did not go quickly! I tried to take a nap. I went outside and smoked. (I no longer smoke now!) I talked with everyone to keep my mind at ease.
Once the surgery was finished the doctor came out to talk with us and tell us that everything went as planned and that we can go in and see Ethan. I was going to go by myself, but it was suggested that I go with at least one other person. I didn’t really think it all the way through as to how he was going to look afterwards. I wanted to go with my dad. We walked into a room washed our hands and head to the area that he was in. We walked in and Ethan was laying in this big crib with wires everywhere and was still sleeping. My heart started to beat my crazy, I started to sweat and then tear up. I could not hold him to make anything and everything better. There were machines, tubes and wires everywhere. The scar was fresh you could tell. Luckily my dad was next to me and held me close and told me that Ethan will be okay and we will all be here for you and him.
Those that wanted to go back in the room were allowed and then we went home for the night. We spent a few more days in the hospital and then we were released home. I spent every minute I could there.
We went for check ups after surgery and each time has been good. The last time we were in we were released to come back in 5 years. I do know I can call at anytime if I feel like we have a problem, but hopefully we won’t!
I am still very thankful for the doctors, nurses and other staff members that helped us take care of Ethan.
Thank you for reading.
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