Calvin was born on a warm fall day in September 2013. It was a very unremarkable pregnancy, and a rather unremarkable delivery. Everything seemed fine with our 9 lb. 14 oz. bundle of joy. He wasn’t eating right away, but no one seemed concerned. However, after 6 hours passed and he still wasn’t able to latch, they started to get concerned. A resourceful nurse decided to check Calvin’s oxygen levels and determined that “something’s not right”. Exhausted after a long labor, I stayed in the room and dad went with Calvin to the nursery. I’m not entirely sure how long they stayed there, but eventually they told me he’d been sent to the NICU and that I should join them there.
By the time I arrived, the room was full of specialists trying to determine what was wrong. Finally, we got some answers. A cardiologist, who later introduced himself as Dr. L, told us Calvin had a heart defect called Pulmonary Valve Atresia. Of course, we hadn’t heard of this heart defect, nor were we prepared at all for this news.
We decided to have Calvin transferred to another hospital, for a diagnostic catheterization, and an attempt to open the pulmonary valve.
The catheterization was unsuccessful, so the next few days were spent trying to determine next steps. When Calvin was five days old, he underwent a hybrid open heart/catheterization surgery that was able to successfully open the pulmonary valve. Yay! He spent three weeks in the hospital, and we brought him home.
We thought that’d be it, and we’d be done with the hospital. But, as many heart families eventually learn, that just isn’t the case. After some issues with feeding, he was back in the hospital with failure to thrive. We came home just after New Year’s 2014 with an NG feeding tube. Little trooper did a good job working on feeding for the next two months and was finally able to ditch the NG tube – nice work, Calvin!
We saw cardiology again in February 2014 when Calvin was 4 ½ months old, and Dr. L decided to take Calvin back into the cath lab to balloon the pulmonary valve again, since it was showing some stenosis. Because of Calvin’s past weight-gain issues, and since Calvin was still underweight, he decided to have us admitted overnight following the cath lab, just for observation. This ended up being a good thing, because, as the catheterization went well, Calvin had some issues waking up from anesthesia. After several hours of waiting and getting progressively more concerned, the doctor in the PICU took his blood sugar and found that it was extremely low (below 20).
I honestly don’t remember the next sequence of events, but I think a CT scan discovered brain swelling due to the hypoglycemia, which led the doctors to put him in a medically-induced coma. A week later he finally woke up again, but this Calvin was a different Calvin from the one we’d sent into the cath lab. An MRI discovered that Calvin had a severe brain injury because of the hypoglycemia.
He spent five weeks in the hospital recovering: a g-tube feeding tube was placed, he received lots of physical, occupational, and feeding therapies, he developed seizures, which resulted in an EEG and being placed on seizure medications. We then went to ChildServe for three weeks of focused inpatient therapies and learning how to take care of our new Calvin. We finally took him home eight weeks after the initial catheterization in February 2014.
Calvin turned 6 years old in September 2019. Even though he has a lot of challenges, he’s the happiest, sweetest, and strongest little boy you’ll ever meet. Here’s some of the things you should know about him:
- Even though he doesn’t talk, he’s quick to smile and vocalize when he’s happy
- He loves going to school; he just started kindergarten, and also got to attend three years of preschool
- He loves music and being read to
- He loves to have his head rubbed
- Even though he doesn’t eat with his mouth, he loves taking tastes of fruit and cotton candy
- He loves getting in his stander (a device that helps him stand up and works to improve bone density)
- He loves his two little brothers and one little sister so much – he especially loves it when they cry or get in trouble
- He gets to use a wheelchair to get around, and his siblings love pushing him around the house
- He gets to spend his weekdays with our wonderful home-care nurse – thank you UnityPoint at Home!
- He plays on the Yankees for the Kiwanis Miracle League baseball team in downtown Des Moines
- He likes to run 5K races with me (mom)
- He loves going to the movies
- Even though he gets pneumonia a lot and has multiple seizures every day, it doesn’t get him down. Once he’s better, he’s back to his happy, smiling self.
So far, Calvin’s heart defect is one of the lower-priority health issues for him. Eventually he’ll need other cardiac procedures, but for now we’re focusing on his other health concerns and having him live the best life he can. We just moved to an accessible home for him, and we all love having a home that is finally appropriate for his needs. If you ever get to meet Calvin, consider yourself lucky. He’s a sweet, loving boy.