Long before Tyson was born, he was loved so much by our entire family. We found out we were pregnant in December 2010, and we were overjoyed! We had a blast telling our entire family by giving them framed pictures of us holding the pregnancy test for Christmas. From the very beginning, Tyson's life was pure joy and with a healthy pregnancy with absolutely no reason for concern, we went into Tyson's birth day with that same joy and anticipation to meet our beautiful baby boy.
At 3:11 pm Tyson was welcomed into the world at a healthy 6 lbs. 13 oz. and 20 inches long. He was given a clean bill of health by the doctors and we were left to enjoy our sweet newborn in our hospital room. The next morning, sometime after 6:00 am, I said goodbye to Tyson as he was scheduled for his circumcision later that morning. During the procedure, Tyson turned blue and it was immediately apparent to the doctors that something was wrong. The next time I saw him he was intubated and in the NICU at our local hospital.
At less than 24 hours old, Tyson was transported by ambulance to Vanderbilt Children's Hospital in Nashville, TN, which is about 45 minutes from our house. After discharging myself out of the hospital early, Justin and I were right behind them. We would spend the next 4 days in the Vandy NICU, and it was during this time that Tyson was diagnosed with Shone's Complex, a serious type of congenital heart disease. Click on the Shone's + CHD link for more about what it all means. The doctors decided to treat Tyson with an open heart surgery known as the Norwood Procedure, which would be the first of a three phase plan needed to keep Tyson alive. The first needed to be performed immediately, the second (Glenn) at 4-5 months, and the third (Fontan) at 18-24 months. The Norwood was set for three days later, on August 22nd, 2011.
In the days leading up to Tyson’s first and most risky surgery, our family and friends came from far and wide to come see our sweet bundle of joy. On the day of his surgery, Tyson had more than 15 people anxiously waiting in the Vanderbilt Children’s Hospital waiting room for the completion of his six hour procedure.
Our surgeon initially thought the surgery had gone really well, but shortly after Tyson's heart stopped beating, and the doctors had to use CPR to resuscitate him. During the course of the evening, Tyson's condition got worse and worse, and things just really weren't looking good. By the morning, our surgeon made the decision to put Tyson on a life support machine called ECMO, which would hopefully give his tiny body some time to rest. Later in the day, he was taken back to the operating room in hopes that they could find out why he wasn't getting any better, and they worked on his aortic valve which was leaking quite a bit. This was Tyson’s second open-heart surgery in his short, 6-day life. At this point, his heart was the size of a strawberry.
After 5 days on ECMO, Tyson's brain began to bleed and, without knowing whether or not his heart was ready to work on its own, Tyson had to be taken off ECMO in order to save his brain. This was a huge test, and it was one of our many miracles that Tyson came off successfully! His heart was working on its own, and he seemed to be stable, although his kidneys were still not working very well. He was in renal failure and we just needed to give him time for that to heal so he could finally pee off all the fluid he was retaining. Poor Tyson looked like a baby sumo wrestler!
On Sept. 6, our surgeon made the decision to close Tyson's chest. His chest had been opened since August 22, and this was because he was too swollen and if they had closed it his heart would have no room. At this time Tyson's kidneys had slowly started to work a bit and he had lost enough fluid that our surgeon thought he was ready. The procedure was done in the morning and it seemed that Tyson was adjusting to his closed chest and his body was performing like it should. At around 9:30 pm though, Tyson's heart started to slow and quickly stopped all together. The only way to keep Tyson alive at this point was to perform CPR until his surgeon could get to the hospital to open his chest again and put him back on ECMO. After 30 minutes of chest compressions, his surgeon was able to get Tyson stable and back on the ECMO machine. The team in the PCICU that night had saved his life.
The next few days were horrible, and many of our doctors were not hopeful. We kept hearing about statistics, and although we never asked what exactly they thought Tyson's chance at living was, we knew it was not good. We knew that Tyson could not stay on ECMO forever, and the day came very quickly that they said we had to try and take him off. If Tyson's heart could not work on it's own, we knew that we would have to make some really hard decisions as they had exhausted all medical options. Thankfully, we never had to have that talk...
Tyson successfully came off his second run on ECMO on the first try and surprised everyone. Our little fighter showed everyone how strong he was and we were thrilled! But just because he was amazingly strong, does not mean he was fast. :) It was a running joke in the PCICU that once we thought Tyson was ready for something, we would wait a couple more days just to be sure.
After coming off ECMO, and in his own (SLOW) time, Tyson overcame it all. Renal failure, seizures, strokes, failed extubations, chronic malnourishment, collapsed lungs and infections were all bumps along the road, but Tyson overcame them and he slowly but surely got better. He was finally extubated after almost 3 months, on his third try, and talks of leaving the PCICU began to be brought up in rounds. It was impossible for all of us not to smile at the thought.
Tyson was transferred to the cardiac step down unit on our 89th day at Vanderbilt. We would spend about another month there dealing with feeding issues. On Dec. 13th, Tyson went to surgery yet again, but this time to place a G-Tube and to perform a Nissen Fundoplication procedure. This is very normal for a child with Tyson's cardiac issues, because they typically struggle with eating. He did great in this surgery and in only 7 short days, they told us we were ready to go home... home?!
Four days before Christmas, after 125 days at Vanderbilt and 18 weeks since Tyson was born, we took our baby boy home. Home for Christmas... the most wonderful gift in the world!
After a wonderful four weeks at home, we took Tyson back to Vanderbilt Children's for the Glenn, which is the second stage of the series of surgeries required to keep him alive. Sending him off for surgery was brutal, especially with what happened the last time he went away for heart surgery. We were prepared for the worst, but Tyson did amazingly well and we were discharged after only 8 days! We think Tyson figured out that being home is way better than in the hospital. He once again surprised us all... little goober.
Tyson continues to deal with many complications from his rough start to life. He suffers from severe developmental delays from being in the hospital for so much of his life and we are in therapy four days a week to help him catch up. He is in physical, occupational and speech/feeding therapy. He is doing very well in everything (well not feeding, but I'll explain that in a second), and we have every hope of him catching up in all areas. We aren't totally out of the woods with his brain stuff, but so far we haven't seen anything that seems to be from his strokes in the ECMO days. This is such a miracle!
Tyson also has complex GI issues, which have resulted in him getting a GJ Tube that feeds directly into his intestines through a feeding port in his stomach. We have him on special formula that goes into the feeding tube using a pump system. He won't eat anything by mouth at all, which we think is because of a combination of having an oral aversion from being intubated so long as well as because his stomach and digestive system aren't working correctly yet. As it was explained to us, this is because his body is still learning to work with just half his heart pumping blood to the body. For now his gut isn't getting what it needs, but we hope that it will in time, and then we hope he will show more interest in food and eating. Until then we will continue to work with him and expose him to food as much as possible. If you would like more information on feeding tubes and feeding intolernces go to the Feeding Tube Awareness page.
Our daily lives are as normal as they possibly can be. Although we have to be careful around infection risks, we go to the grocery store and out to eat (well I still won't take him to Walmart). We try to expose Tyson to different places and people as much as we can, and we really just try and give him the best quality of life possible. We continue to see all of our doctors at Vanderbilt Children's regularly, and we still have that third stage surgery, the Fontan, in our future (probably in the fall of 2013), but for now we are just enjoying everyday life with our little fighter. Tyson is really just the happiest baby ever... almost like he is just happy to be alive. He is a pure joy, and although this definitely isn't the path we thought we would take, a happy, joyful baby is exactly what we dreamed of. We are happy and thankful and we count our blessings every single day.
For more current updates you can check out Tyson's facebook page called Help Tyson Fight.