Updated: Jun 27, 2018
By now you are probably wondering when our sweet boy is going to catch a break, we were too. Little did we know it was going to be a few more weeks, a lot more doctor appointments, and a whole lot of stress and tears before we all caught a break. However, no matter how long or hard a day was, we always got to come home and love on our sweet Nolan. It makes everything okay.
The ears, heart, and kidneys all develop at the same time. Because of this, we were given referrals to see a urologist for a renal ultrasound, and a cardiologist for an EKG. These appointments were precautionary to make sure these organs were functioning properly. We knew that both the kidneys and heart would check out fine since nothing had been seen on any of my ultrasounds during my pregnancy.
We made an appointment for week 3 to see by Dr. S. a pediatric urologist. He was a laid-back doctor that had the top 3 buttons of his shirt undone and treated you like you were at a backyard barbecue and not in a doctors office. He was great. He helped us relax while we explained while we were there. He agreed that the renal ultrasound should be done to get a good look at the kidneys.
He began the ultrasound, and as quickly as he started, he was finished. He told us that everything looked normal and that one of Nolan's kidneys was slightly bigger than the other, but it was no cause for concern. Thank you Lord! We knew everything would check out fine, but it is a relief to have the doctor say, "All clear."
One more specialist to check off the list. One more vital organ checked out healthy. We were on our way to only good news.
By the time week 4 came we were anxious to be seen by the cardiologist. We knew that it was routine for Microtia kids to have EKGs but it was the most critical organ we were getting checked. We sat quietly in the waiting room. We were nervous but kept telling each other that just like the kidneys we would be leaving that office with another, "All clear."
We got called back to get his vitals checked and have the EKG completed. Did you know the EKG only takes seconds to be done? Yeah, me either. The nurse did it so quickly I actually asked her two times if it was really already over. They moved us to the next room and before she left to get the doctor she mentioned that the Dr. might want us to go ahead and do an Echocardiogram while we were there. Hmm... Why?
Our cardiologist Dr. V. came in to speak with us. He examined Nolan and listened to his heart for what seems like 5 minutes before saying anything. He told us he heard a murmur. He asked us if we ever noticed Nolan's labored breathing. He then showed us the look of tugging on Nolan's chest and mentioned that was abnormal and could be a sign of a hole in the heart. We froze.
We were taken down the hall to have an Echocardiogram. It was going to take about 45-minutes and would require over 100 images. We laid him on the table. Joel at his feet. Me at his head... The tech started.
The room was silent. Joel and I were both praying over him and couldn't even look up at each other.
As she took the images, she would mark a measurement on the screen. I kept telling myself that she wasn't measuring a hole, but deep down I knew she was. She didn't speak until it was over. She complimented us on what a great baby he was and then moved us back down the hall to wait for Dr. V.
Dr. V. came into the room and began going over what he saw. Nolan had two holes in his heart. One is a small Atrial Septal Defect (ASD), and the other is a large Ventricular Septal Defect (VSD). We froze again.
He explained to us how these holes impact the heart and the body. Nolan had too much good blood, mixing with old blood and it was causing his labored breathing. He also had fluid on his lungs because his heart was unable to pump it off. He was likely going to need open heart surgery around six months of age.
These holes were the reason he had a hard time eating. He was using so much energy to breathe he didn't have much energy left to be able to suck on a bottle to eat. Our hearts broke.
Nolan was going to have to start a diuretic to help remove the excess fluid around his lungs. We would have to watch his weight much closer since he would be peeing more often, but we should see a significant improvement in his eating since he will be able to breathe better.
Dr. V assured us that after the surgery Nolan would live a normal life, and the operation itself has over a 99% success rate. He also told us that this is the most common heart defect and it is not one that is life-threatening.
To be honest, we didn't hear any of the positives that day. All we heard was "holes in the heart," and "surgery."
We left feeling defeated. How could this happen? How could they not see THIS on any of my ultrasounds? How did we keep taking one step forward and two steps back? WHY?
We got the diuretic and measured out his first dose. 0.36 milliliters. I gave it to him while bawling. I hated that my tiny infant had to take this medication. I hated that I couldn't take all of this from him.
He looked up at me, opened his mouth, sucked the medication out of the syringe and fell asleep.
There is some peace in knowing that he won't remember any of this. This is his normal, and it was becoming our new normal.