As a mama to a baby who has a few health problems, I walk a fine line. I strive to be educated, but not paranoid. Aware, but not obsessed. I try to live in the moment, but I know that I need to stay on top of the latest research. Be aware of signs to look out for. According to my Baby Bible, Babies With Down Syndrome: A New Parent’s Guide, approximately 40 to 60 percent of all infants with Down syndrome have some type of heart defect. We knew about Joey’s congenital heart defect at just 24 weeks in utero. At 28 weeks in utero we were told he would most likely require open heart surgery. This was confirmed a few weeks after he was born.
There are other health issues that are also more prevalent in children with Down syndrome like leukemia, gastrointestinal issues and upper respiratory infections. The heart issue is what weighs most heavy on all of our minds right now. As we get closer and closer to his surgery date I find myself thinking about it more and then I go through the process of convincing myself that it will all be fine and that Joey is going to sail through his procedure.
In the meantime, I also have to balance out the time I spend with Joey at all of his appointments and therapies with spending time with Thomas Henry. Tommy is such a precious 2 ½ year-old. He has a wonderful sense of humor and he is a kind little boy. He will do something ornery and then I will tell him to stop and he will say, “Don’t worry mommy.” He used to constantly ask “Whaazzz that?” That has evolved into “What’s that man doing?” Before we had Joey I worried about how I would love a second child as much as I love our firstborn. I worried that he would not get as much attention or one on one affection. Now, I almost worry more about how can I make sure that Tommy gets as much attention and time as Joey gets on a daily and weekly basis just based on need alone.
A few weeks ago I had two encounters where I met new people and we ended up talking about Joey and his heart. In both cases the people I met told me that they knew families where one of the kids had a heart defect and then all of the kids in the family ended up having heart defects. At first I blew it off and then in the middle of the night (when I do most of my deep thinking), I thought to myself—what if Joey’s heart defect has less to do with him having Down syndrome and more to do with him being our son. What about Tommy?
It’s hard. I don’t want Tommy to get lost in our world that sometimes seems to revolve around Joey. And at this point in Joey’s life, it has to. I try to do at least a couple of weekly one on one outings with Thomas Henry so that he gets some mommy time to himself. It’s always entertaining for me and he loves it.
I ended up calling Joey’s cardiologist in Akron (he also has one in Michigan) and making an appointment for Tommy. All I could think of are those high school athletes who die out on the basketball court or football field. What if in the midst of taking care of Joey we were missing something going on with Tommy? I would never forgive myself.
If Joey is Iron Man, then Tommy is Superman. What if Superman also has a broken heart like Iron Man’s?
This "tower" was Thomas Henry's Christmas present from One Step Ahead. He took one major fall onto our tiled floor and this was a done deal. It is his throne and he loves it and perches upon it every day.
On the day of his appointment I tried to dress Tommy in a nicer outfit, which is basically anything other than his cozy fleece pants. I tried jeans and a cool baby GAP sweater. He was not having any part of it. He was grumpy from being woken up early (this is a boy who loves his sleep—if I wake him up instead of letting him wake up on his own he says to me, “Don’t mommy!”) and Tom finally let him pick out his own shirt, so we could get to his appointment on time, which was his Superman t-shirt.
We arrived at the doctor’s office and they first did and EKG to get a baseline. Tommy was intrigued by the wires and stickers. Next we saw the cardiologist (Dr. Khan at Akron Children’s is a phenomenal cardiologist. He correctly diagnosed Joey in utero—we love him so much) and he listened to Tommy’s heart and examined him. In addition to encouraging Thomas Henry to stop sucking on his two fingers, he examined him and listened closely to his heart. He found a murmur, but said it was a “normal” murmur and that there was nothing to worry about. Whew!
Just to be on the safe side he wanted to do an echocardiogram on Tommy and take a close look before he sent us home. In the meantime, Tommy was having the time of his life. He had both parents to himself for about three hours straight while all of these new adventures were going on. If you ask him about the appointment and what the doctor said to him he says, “Doctor told me not to put my fingers in my mouth.” Yup. This was a walk in the park for Superman.
Tommy and I stretched out on the hospital bed and he watched Elmo while I fixated on the computer screen and images of his heart. It brought back so many memories from being pregnant with Joey and all of the ultrasounds and fetal echocardiograms we did. I stared and stared at the screen with my untrained eyes trying to figure out if there were any signs of a big hole in Tommy’s heart like Joey’s. At one point I went to the dark place and convinced myself that like Joey, Tommy would also have to have open heart surgery and would bear the zipper badge down the middle of his chest like Joey will. It was a scary place. At least with Joey we have had a lot (probably too much) notice about his heart surgery. We literally knew before he was born that it was probably going to be necessary. But with Tommy, I just wasn’t prepared. I could feel my stomach in my throat. Only a few minutes after these dark, dark thoughts, the cardiologist popped in and said he had to run to the OR, but that so far everything looked great. Thank. You. Lord. The sweetest words I could have heard.
If you give a boy a roll of toilet paper.....he's probably going to make a mess.
And maybe find a stale pretzel in the couch.
A body in motion, stays in motion.
Mom! There's a pretzel in the couch!
We finished the echo and Superman went back to running down the halls of the heart center and for once we were able to leave that office without making a follow up appointment. Thank you, Lord, for this free pass. It’s hard enough knowing that Iron Man has a “broken” heart and this mama probably could not have taken it if Superman had one too.