(one post-op picture included at bottom of post)
We found out about Ethan’s heart defect while he was recovering from his surgery for duodenal atresia. I don’t think we understood at the time what the nurses were telling us ( or I didn’t) because I was just so overwhelmed from all the information we already had been bombarded with, from waiting on Ethan’s blood work for the final Down syndrome diagnosis to him being med-flighted to the Children’s Hospital.
When we had more time to digest it all, however, a cardiologist rounded while I was with Ethan in NICU and gave me a pamphlet on the type of heart defect she thought he had at the time based on his echocardiogram. As soon as the word “surgery” was mentioned, I clued into the fact that this was a big deal. I called Ryan, who had to go back to work at that point, and we were all flustered again. We calmed down soon, however, as we were told they would probably wait about a year to see if the hole closed on its own.
We celebrated getting to take our little one home and set aside worries about his heart.
Ethan had to have increased calories in his formula/breast milk mix, and he had to be on a diuretic twice per day. This was our little routine for quite some time.
Fast-forward to his cardiology follow-up in October, just before his first Buddy Walk. We knew on this day, a decision would be made based on his echo whether the surgery could wait, or if he would need surgery sooner, before the onset of flu season. We were disappointed (at the time) to hear that he was going to have open heart surgery because the hole was so large, it was unlikely to close on its own and waiting for flu season to inflict its ravaging toll upon Ethan’s poor little heart would be far too risky. Before this appointment, we discussed how the weekend’s Buddy Walk would either be a celebration of the hole in his heart having closed, or it would be a time of much-needed support from friends and family. It ended up being the latter.
So then we found out the surgery wouldn’t be until the first week in December and were told to protect Ethan from germs so he wouldn’t catch an early flu bug. Thus began another stint of germophobic parenthood!
We went the day before the surgery for a day-long pre-op visit, where we signed consents, discussed scary, albeit unlikely, scenarios that could occur and end in death. I remember the anesthesiologist asking if I “needed a minute” because I started crying while he was talking-I just couldn’t help it. Ethan went through so much that day-getting blood drawn twice, an echo, and getting an X-Ray (which he hated even more than the blood draws!) We were all so emotionally and physically worn out at this point and just ready to get this surgery OVER with!
December 6, the long-awaited, and also dreaded day
The week leading up to Ethan’s surgery, I would hold him in the rocker and cry because as much as i trust that God would see him through this surgery, it was scary to think about. Furthermore, I knew at the very least, Ethan would be sedated and unable to be held for a while after his surgery. Ryan and I both were in knots. Thankfully, Ethan wasn’t old enough to know at all what was coming. We woke up around 4 am to get packed up and to leave to the hospital.
The long wait once we were there made our nerves even more raw, and Ethan was growing hungrier by the minute. (He couldn’t eat prior to the surgery.) Finally, it was time to walk down the hall with the anesthesiologist. Up to this point, Ryan and I had taken turns holding him, but on this walk through the halls before handing Ethan off to the doctor, Ryan wanted me to get to carry him. I was so reluctant to hand him over, yet I knew Ethan needed this for his health.
It was a very sobering moment for me, and it really felt a lot like handing Ethan over to God Himself, because I was entrusting Ethan to be taken care of by someone else for something that was a very fragile procedure-open heart surgery. I prayed, “God, I am handing him over to the anesthesiologist, but really, I am handing him over to You.” Ethan was asleep at this point, which I was thankful for. The man nodded respectfully, turned, and then the door closed.
I was relieved in a way, that we were getting this process moving forward.
Next, our four parents (Jim, Melody, Mom (Carol), and Dad (Vic) ) accompanied us in a small surgery waiting room where a nurse would come give us updates throughout the procedure. I’m so thankful they do this at the hospital. Our siblings waited in the main waiting room, and we texted them and sometimes ran out to tell them throughout the procedure. I knitted to keep my hands busy and to keep from going crazy! I highly recommend some sort of activity like this for anyone expecting an experience like this! It was such an emotional rollercoaster, waiting to hear how Ethan was handling the anesthesia, then how the surgical procedure was going. When they told us they were at the stage of “it (the heart) being completely open” I wanted to faint. It was incredibly stressful knowing my baby’s heart was stopped and on a bypass machine. I was so thankful for the friends and family who donated their blood for Ethan so I could at least feel good about knowing where that came from for his transfusion. One less thing to worry about.
We prayed, we read Scripture, we updated friends via Facebook. We waited. And waited. For more updates from the staff. When we didn’t get one right on the hour, we squirmed a bit in our seats. The nurse came in and breathlessly apologized for the delay and said the doctor was having a little bump in the procedure. He said the heart defect was “more complex than we had thought based on the echos.” He told us that there were two holes, one a very sizable hole that needed a space to create two valves. Instead, he told us, it was one large valve and was causing mixing of blood. He said the mitral valve was leaking “severely” as the surgery was in progress, but he was going to get it “as close as possible to not leaking”. He could not tell us if this would mean future surgeries, and this made us feel sick at our stomachs. I couldn’t imagine another gut-wrenching few hours, not to mention the months prior to this day.
Finally, we received word that he has “fixed it enough to be satisfied and not be concerned about fooling with it too much.” (These might not be exact quotes, by the way. I’m sure he sounded more professional than that. Haha!) We breathed a sigh of relief when the surgeon himself came in and said a “moderately leaking mitral valve” is considered a big deal. It may need surgery over time, it may not. It could get better, it could get worse.
I was so relieved when his little fixed heart was beating on its own again and we were told to come on back and have a look!
Our boy and our God once again blew all the staff out of the water at how fast he recovered-7 days is all he spent in CVICU, and we were outta there! It was time to celebrate Christmas!
I have even heard of a family who celebrates the day their daughter’s heart defect was repaired. They make a cake and everything, like on a birthday. Very cool. We are thinking about taking on that tradition. Because December 6th will always mean something to us. ❤
By: Natalie aka Ethan’s Mommy