Typically, I share little moments of learning and fun in my children's lives and other important topics on play and development through this blog, nothing too personal or big. Well, something big blindsided us recently, a big hole. I wasn't going to share this at first, but then realized I might be able to get some help filling this "hole" by sharing.
My four and a half month old son Devin has a big hole in his heart that needs to be fixed. Fixed means an invasive open heart surgery. No one was aware there was a problem; he doesn't look or act sick. He's a very engaged and typical developing baby.
Last month, I noticed some congestion I was feeling and hearing in his chest. I thought he was getting a cold. A friend mentioned something the following day while she was holding him and said, "You might want to get it checked out." I'm not one to run to the doctor for what I thought was a cold, but her prompting made that little voice inside of me say, just go, he's fine, it won't hurt anything. So I called my pediatrician and took Devin to see her the next day. She listened to his chest, told me the congestion was fine, but then dropped..."I hear a bit of a murmur." WHAT? Apparently congestion can pronounce the sound of a murmur. I was referred to a local pediatric cardiologist that we were scheduled to see the following day. Oh, did I mention my husband was on the other side of the country for work while this was going on?
With baby and four year old in tow, by myself, I braved the inside of an office I thought I'd never see. We were there for hours. The staff was wonderful, Devin was in a great mood during the testing, and Aidan was extremely well behaved. I had convinced myself nothing significant was going to come of this visit while I waited for the doctor to look at his results. When he returned to the exam room he pulled out a few forms and began explaining to me that Devin has "a pretty large hole in his heart, about one centimeter big." A ventricular septal defect, as well as a gerbode defect. Everything he said to me that afternoon is burned into my memory as he showed me pictures of the ultrasound. I was very quiet, I held back tears so I could think clearly, so Aidan wouldn't see how upset I was becoming inside. I had to remember everything, so I could call my husband and tell him what had snowballed in the whirlwind of the past two days.
As soon as I left the office and got into the car, I dialed my husband's cell phone number. I somehow managed to not cry until after I told him everything. His enlarged heart, little clues that were actually symptoms of the defect. Afterwards, he asked if I needed anything...I needed to cry. I hated that I had to tell him over the phone, I hated that I never noticed how tired Devin had been getting, I hated that I never realized the way he panted was not about being excited, but because he was trying to get more air in his lungs and oxygen to the blood in his heart. I couldn't believe I didn't "see" these things.
Aidan quietly asked why I was crying. "Do you remember hearing what the doctor told mommy? Devin has a hole in his heart that needs to be fixed, and it's something that scares mommy a little." Aidan looked at me and simply said, "When we get home mom, I will take care of you. I will get you a blanket so you can take a nap." Those words felt like a warm hug to me. When we finally did get home, I was fortunate to have a friend over to talk with. I was up late talking to my parents on the phone after she left. I listened to the static on the monitor in Devin's room, straining to make sure I heard him breathing. I was tired, and I didn't sleep well.
I cried the next morning as he fell asleep while I nursed him, now knowing it's his precious little heart that was causing his eyes to close. As my friend kept repeating over and over to me the day before, I had to remind myself, he's not any different right now than he was before you knew. The more I talk about the defect, the easier it is to relax a little as my husband and I share the news with other family and friends.
Devin is on a medicine that is helping to relieve some of the stress on his heart for now, so the rest of his body can work on growing like it should until the surgery. We are fortunate to live not too far from a great surgeon, at a very good children's hospital, that will close the hole next week.
As we get closer to the surgery date, I think about how he will go on to live a normal healthy life, but I also think about how nervous I am for when I will have to hand him over. I know in my own heart that he will be okay, and I know there is a lot of love out there that can help fill this "hole" in his heart. So please, keep our little Devin in your thoughts and prayers as we work on making him whole again.