3 YEARS HEART-STRONG!
June 19, 2020 will forever be the day that my sweet, 4 year old first born had open heart surgery. Today is a day that I will forever and ever be grateful for the gift of life.
Prior to having a child with a congenital heart defect (CHD), I had no idea that it is something that approximately 1 in 100 babies are born with. Of those, 1 in 4 are critical CHD’s. Continued advances in prenatal ultrasound screening make it possible to identify approximately 30-60% of congenital heart defects early on (the percentage varies depending on the heart defect), but there are still a large percentage that are not seen or missed until birth. In our case, symptoms did not begin to present themselves until Jack was around 6 months old and was misdiagnosed for 3.5 years.
I shared our FULL Congenital Heart Defect journey in a 4 part series last year. You can read those here:
Part 1: Early Signs and Misdiagnosis
Part 3: We Had a Plan, Then March 2020 Came in Like a Wrecking Ball
Part 4: Surgery Day and Recovery
Here’s a few pictures of my brave boy in PICU right after surgery. While he looks so peaceful laying on me, he was anything but.
He was starting to wake up from the anesthesia and was not responding well. When I came into his room, there were several nurses around him, gently holding him down because he was thrashing around so much and they didn’t want him to twist or pull and the chest tube come out. They were so calm and said this reaction is very common, especially for young children coming out of such heavy anesthesia.
They suggested that I sit in the recliner and get him into my lap/on my chest, almost like a newborn. The next 30 minutes were so hard, he was so disoriented and continued to thrash, scream, and cry. The nurses were so precious, they helped me hold him tight when he was thrashing around and one noticed that tears were streaming down my face and just came behind the chair and wrapped her arms around me. The Lord never stopped showing us that He was going to carry us through every single step, just as He had for the past 4 years.
Thankfully days 2-4 were much better. Of course we dealt with small setbacks, pain control, nausea and even a few night terrors, but by day 5 our doctor was so pleased with his progress that he was ready to send us home. While this seemed SO fast to my mama heart, I knew that home would absolutely be the best medicine, and remember, this was June 2020. The last place anyone wanted us to be was a hospital where covid was being treated.
We were sent home with pain meds and oxygen for when he was sleeping. Home is always the best medicine, there’s just nothing better than sleeping in your own bed.
When people ask how Jack is today, there is only one word to describe him…THRIVING!
Since surgery, he’s dealt with typical kid illnesses, colds, the flu, an occasional upper respiratory infection, etc. With anything upper respiratory, we were warned that he would probably deal with wheezy breathing and a prolonged cough for several years as his trachea continued to grow and learn how to work correctly. I’ve noticed that each time he’s been sick, the lingering cough and labored breathing has resolved in shorter amounts of time each time.
Jack is a normal, happy 7 year old boy with ENDLESS energy! He plays soccer, swims, plays outside from dawn to dark and just loves life. I wrote these words a few years ago and they still ring true today.
“We can do nothing but give the praise to Jesus. I truly believe that it was the Lord that kept that still small voice in the back of my head to continue to push for answers, it was the Lord who led us to our amazing Pediatric Cardiovascular Surgeon and it was the Lord who paved the way for Jack to have this much needed, but not emergent surgery in the beginning of a global pandemic.”