Here is the story about sweet Baby John. His story is not as fortunate as some. I have yet to meet his Mommy or Daddy, but I spoke with Cortney on the phone. She is blessed with a good solid support system of friends up in her hometown of Bozeman, MT and is learning how to heal. Don’t miss the beautiful song that was created in honor of their boy. Grab your tissues though, it will bring you to tears. Here is their story:
Our Little JEM
Our story begins at our 20 week appointment when we thought we were only going to find out the gender, which was a little boy. On that same day we also learned that our little boy wasn’t in the right position for the doctor to read his heart or his spine, so we had to go back to see a different doctor that next week so they could get the readings. At that time, we learned our little boy, John, had a condition called aortic atresia. After that, we talked with the doctor about options of where to go to treat our little baby. Our options came down to either Denver Children’s or Salt Lake City’s Primary Children’s Hospital. After debating what would be best, we decided Primary Children’s Hospital would be best because it was closest to home for Tyler, John’s daddy, to drive back and forth every two weeks to work and then to come see us. Our first appointment with a cardiologist in Salt Lake City was very hard. We found out our son, John, has HLHS (Hypoplastic Left Heart Syndrome). At that time, while I was still pregnant, we were given three options:
- Terminate the pregnancy (which was neither of our choices),
- Deliver our baby and not do any surgeries (which would consist of holding him and spending all the time we were going to be given with him),
- Deliver our and do the three step procedures he would need to survive.
So, of course, as I’m sure most parents would choose is option number 3 to give our son a fighting chance at life.
Fast forward through rest of the pregnancy to December of 2017. We made our final trip down to Salt Lake City to have our final OB appointments. The delivery date was set for December 26, 2017. So, on Christmas night, I was induced to have John at some time on the next day. And after hoping and praying that everything was going to be okay, our baby arrived at 6:20 AM, screaming bloody murder, just like he should! He weighed 6 lbs 9 oz and measured 17.5 in long.
At 4 days old, John went into have his first surgery/procedure to start this whole thing off. The first procedure is called the Norwood and he got a Sano shunt placed in his heart. It went so smoothly. John was thriving after this first surgery,and after 8 days he was extubated, (which means the breathing tube was removed from his body.) Finally Mommy and Daddy were able to hold him again since before the surgery took place.
Everything went uphill from that point forward. Before we knew it, we were out of the CICU (Cardiac Intensive Care Unit) and in the CSU (Children’s Surgical Unit). Shortly after that with mom learning how to place a feeding tube, push medications thru it, a car seat trial, and everything that went with being a heart mom, we were finally getting released from the hospital. Mom was super nervous taking him home, not having the doctors and nurses there to help if something went wrong. After the first night, mom was getting used to the fact that she could do it all on her own and didn’t need the doctors and nurses there. We stayed in Salt Lake City at the Ronald McDonald House for a couple more weeks until John had a follow up appointment and we were finally cleared to go home to Montana. On February 12th, Mommy, Nanny (Cortney’s mom), and Baby John started the 6.5 hour trip home. The first night we only made it to Idaho Falls to be safe from the icy roads we would have came upon high the further north we went. The next day, February 13th, we finally made it home to Bozeman, MT.
John came home to Montana with no feeding tube or oxygen like most babies with HLHS do between the first and second surgeries. We were so happy and so relieved. Everything was going so well. We felt so lucky. After a short week home, we piled in the car and made our way to Billings, MT for the first cardiologist appointment with Dr. Lashus. After that, we continued and made our way to South Dakota for John’s great great-grandma’s funeral. When we made it back home, a week and a half later we had to go to the hospital for John because he was needing half of a liter of oxygen just to keep his stats where they needed to be. We were then Life Flighted down to Salt Lake City back to Primary Children’s Hospital. John and Mommy rode in the plane, while Daddy had to drive thru one of the biggest snow storms we had gotten that year. After a very long night, John ended up going thru a heart catheter, and a couple tests to see what was wrong. All they found was that he was simply needing some oxygen to help his system.
After a week of staying in Salt Lake City at the Ronald McDonald House again we were finally able to make it home. A week later we went to Billings again for another cardiology appointment and everything looked great. Two weeks then go by and we are back again in Billings for an appointment and John was needing oxygen before we even left Bozeman, so we knew it was getting close to the time for John to have his second surgery/procedure which was earlier then expected.
Dr. Lashus then was talking with all our doctors at Primary Children’s and they decided it was time to go back there for the Glenn (second surgery). John was an early stage Glenn because he needed oxygen. At a tiny 3 ½ months, old our boy went back to have his second surgery. Unfortunately, things did not get better after that, he was desatting right away the first night, and having a hard time coming off the high doses of medications he was on from the surgery.
Doctors tried everything they possibly could to help him get better and nothing was happening. After 5 ½ weeks of being intubated, the doctors finally felt he was doing good enough to come off the breathing tube. But, 2 ½ days later he was reintubated because he wasn’t breathing as well on his own with a little bit of support, he needed full breathing support. After 2 ½ more weeks of being intubated, John still had no improvement.
We discussed with the doctors about what our best option would be. The doctors honest opinion was they had tried everything in their power and told us they had no more to offer or our little JEM. The only thought that allowed us to accept this, was that our Heavenly Father was needing our precious baby boy back home with him for bigger better things. On June 18th, 2018, John was called home at 12:23 am. We were so heart broken, yet we knew our baby was suffering and there was a relief that our boy didn’t have to endure anymore pain. He was home for good now.
Later we found out more of what was wrong with John. The reasons he wasn’t getting better was Chronic Hypoxic Respiratory Failure, Chronic Lung Disease, Pulmonary Hypertension, HLHS (Hypoplastic Left Heart Syndrome), Chylothorax (fat build up in the lungs) and Recurrent Coarctation of the Aorta. We truly believe that the doctors had done everything they could, and our little JEM’s time here on this earth was through.
In Memory of Our Little JEM
JOHN EDWARD MCKINLEY