Hello everyone!
We are Nikole and John, parents to our wonderful heart warrior Jettler! John and I were both born and raised in Williston North Dakota, and we can never see ourselves leaving this place, for many reasons! In the summertime you will see us at the racetrack! When you don’t see John at work during the summertime he is on the racetrack, doing what he loves! And I, Nikole, used to work full time at the Pharmacy here in our town until it was the best decision to stay home with our son, Jettler when he was finally discharged from his long hospital stay, and I love every minute! Jettler is our only kid at this time, just turned a year old in December, and he sure keeps us busy and on our toes!
Jettler CHD Journey:
Jettler’s first year of life has been busy, scary, and full of unknowns, but one of the
greatest years of all! Jettler has a Complex Congenital Heart Disease called Tricuspid Atresia with the Transposition of the Great Arteries. This heart disease requires multiple surgeries, and his first main open-heart surgery just days after he was born, called the Norwood.
A little fun fact that I tell people, is I didn’t know I was pregnant with him until I was 5 months along. I know, crazy! After finding out so late and seeing something different with the heart during an ultrasound, they referred us to MFM (Maternal Fetal Medicine), and they confirmed his heart disease at the first appointment with them. From then on, we then got referred to a pediatric cardiologist that continues to see Jettler now while out of the hospital. Doctor Thompson the cardiologist then referred us to Childrens Minnesota in Minneapolis, and we would have to move there to prepare from the birth of our baby, with the neonatal team there ready to take him to get him to the CVICU to prepare and stabilize him for his first upcoming
surgery.
December 20th, 2022 was the best day of our lives, but one of the worst days of mine. When going in to have Jettler, I tested positive for COVID. With the results of that, I was not able to be with my son after he was born for 10 days. Still makes me upset thinking about it, but glad he at least had John, and his grandparents at his side the whole time until I got to see him and be with him.
I wish I could tell you great stories when it comes to Jettler with his surgeries and his hospital stays, but Jettler just hasn’t had an easy life so far, easy surgeries, or experiences with life. Everything that could happen, did happen. Jettler has been through 6 open heart surgeries, 4 times on ECMO, and many Cath Lab procedures.
Just 3 days old Jettler underwent his first open heart surgery, and when finishing the surgery, they stated that they needed to place him on VA ECMO (life support- supporting the heart andlungs at the same time) to let him rest after the surgery. Being first-time parents and all new to this it was so emotional and scary. But our strong little guy did great and was getting better by each day and then after days on ECMO came off, and we started the new year with getting his chest closed! Then a couple days after chest closure John and I were woken up in the early hours of the morning to an emergency situation, and we were then informed he was in respiratory distress, and they were needing to place him on VV ECMO (life support- supporting just the lungs). After this emergency, it brought up many conversations on how we can figure out what the next plans are for Jettler. That Friday of that week was the scheduled OR date to do a revision to up size his shunt that was placed during his first surgery. Early Friday morning we were woken up again, to a nurse yelling for help, and about to start compressions on Jettler. This Year many miracles happened, and that morning after prayer so hard during all of it, a miracle happened, and they got him stable enough to get him to the OR that day. I wish I could stop there but he was needing another revision after revision for his first hospital stay, and we were there every day, bed side, by his side every step of the way, praying so hard until the day we got to leave with our at the time 3 month old to go home for 3 weeks until his next scheduled surgery the Glenn.
April came and going back was full of emotions, because it seemed too soon to be going through yet again another surgery and hospital stay full of unknowns. We had the mind set that this surgery would be the best one yet! We were told chest closed the same day, get the breathing tube out as well the same day and less recovery time. Well, that is not what happened to Jettler. We were told that he was a high-risk patient going into the Glenn but needed it, so that was the only option. There were yet again complications during surgery with bleeding and trying to get that under control. They got him as stable as possible and placed him on VV ECMO to give his lungs some rest due to his saturations in the OR being lower. When Jettler got out of the OR late that night, his surgeon stayed around to watch him closely as his bleeding output was not stopping, and due to that they ended up taking him for a wash out and seeing where the bleeding was coming from. After that it seemed like the days were getting better but then yet again Jettler needed another revision surgery. The days seemed very long. Infection after infection, and all the awful things that you would hate your child to go through. There were a couple of attempts at extubating and the two times that happened it was a failure.
The second extubation was a turn for the worst. One of the worst things a parent can go through, and what your child goes through. There are many things that were said to us during this time that will never leave my mind, and the decisions we were making for our son.
The third day after getting the breathing tube out, it was alright, but not good. Everytime he was awake he would cry and cry, and his saturations would get so low they were very worried. It was one morning we walked back into his room from showering and saw him crying, a different cry. Then all of a sudden the staff assist button was pressed and there were doctors, nurses, and surgeons in his room. They intubated him again thinking that it would help his oxygen saturation, but that is not what happened. It actually got worse, the lowest his oxygen saturations were 2%. They were all surprised that he even had a heartbeat and a blood pressure and pulse during all of this. We had to make the decision of putting him on ECMO again, but this time they would cannulate him like they never have before and didn’t even know if that would keep him alive. Then yet again after praying so hard, a miracle happened and his oxygen saturations got better, still lower but a number that they were comfortable with, and they decided not to place him on ECMO but had everything outside him room for a good day.
It was another unknown scary moment of why did that even happen? They did tests and all the things. He was transported down for a CT scan, and they found the answer. He clotted off his whole Glenn, and the Glenn is what is keeping him alive. They then had to place a big sheath in his neck and run TPN (strong blood thinner) straight to his Glenn. There were many trips to the Cath Lab to suck all the clots out, and with being on TPN there is a high risk of having a brain bleed. As all of us would be doing is praying that doesn’t happen, and that is exactly what we were all doing. But, like I said what could have happened did happen to Jettler, and they found a small brain bleed in the back of his head. So, with that they stop all blood thinners, which is scary because he will always be on one, but that is where they were stuck. We finally just trusted the process while watching Jettler go through all that he did, and there was finally a time he just got better. All the doctors were at this time scared of Jettler and moved very slowly with weaning medication and things.
We finally came to a point of recovery for Jettler, and he was doing so good! Got off oxygen and was finally on room air at the age of 8 months, and finally we heard the word “home”. That word can be one of the greatest words being said to you, but also a very scary word. Jettler is so complex and has gone through so much that home is the place for him but being so far away from the cities is what’s scary in case of an emergency. Like I said he is now a year old, has been home for months now, and working with PT/OT and trying to catch him up and get his strength he was never able to get with being so sedated and on so many precautions for so long.
When these babies can smile with what they have been through I wonder what is wrong with the rest of us sometimes. Thank you for reading about Jettler’s story. There are many other things that I have missed or did not mention, because every day there was something, there were good and bad days, and the overall thing was Jettler was fighting for his life every day, and still is! He really is our miracle baby, and I would not trade him and his life for nothing! He is the strongest person I know, and he has shown us that!
We are #JettlerStrong every day!!