4 years ago today, my life was irrevocably changed forever.
It was on July 28, 2009, that I officially became a “Heart Mom.”
It’s a small club and one that I pray everyday that friends, family, and strangers never have to join. But, if you do find yourself joining the “Heart Parents Club”, well, it’s a pretty great club to be in. It’s filled with strong, loving, supportive people who can help you with things you would never be able to face alone.
But this post is not about that, it’s about the miracle that is my 4 year old. My baby boy, who should not be alive, but he IS and he’s thriving, thanks to today’s amazing technology, Dr’s, surgeons, and nurses who are dedicated and determined, Faith, and one strong-willed little man who WANTS to live.
This post is to say, “Happy 4th Birthday to my Miracle Man, Tristyn!”
About 9 years ago, I was diagnosed with a rare form of Endometrial cancer where my body produces non-cancerous cancer cells, but they multiply rapidly. I was also told that though the cells were non-cancerous, that they would have to be checked every 6 months to make sure they stayed that way, and that my best chances for children would be in the next 5 years.
When I married my husband, there was never a guarantee that we could have children, so we started trying immediately. Within about 6 months, I was pregnant with my daughter. I was put on bedrest towards the end of my pregnancy because of my health issues, but she was born perfect and healthy!
When my daughter was 9 months old, I went for a check of my cancer cells and received some upsetting news. My pregnancy with my daughter had fed my cells and they had reproduced very rapidly, faster than expected, and my tubes were about 75% blocked by the cells.
My Dr’s told me that if we wanted more children, medically speaking, we had about 6 months to get pregnant before it was “medically” impossible.
As you can imagine, we freaked out a bit. Our daughter was only 9 months old, so we were thinking… “Can we do this? Is it too soon? Can we afford this?” But then we realized that again there was no guarantee and in fact, there was a very high possibility that we wouldn’t even be able to conceive again. We again put it in God’s hands and said, “if it’s meant to happen, it will happen.”
Well, it happened, and within 5 months, I was pregnant with Tristyn.
Because of my medical conditions, I was a high risk pregnancy again, so I was closely monitored. I saw a Fetal Maternal Specialist every 4 weeks and at my 18 week appt, we got the news… we were having a boy, BUT, he thought he saw an issue with our babies heart, a VSD (ventricular septal defect).
Our hearts stopped, but he told us not to panic and that he wanted us to see a Pediatric Cardiologist. At 24 weeks I saw the Pediatric Cardiologist and the issue was confirmed.
At that time, he saw a VSD and a Coarctation of the Aorta (CoA). We were told that we would have to be monitored every 4 weeks for the duration of the pregnancy and that there was a strong possibility that Tristyn would need heart surgery pretty early on. We were given our options, but all 3 of my Dr’s are Christians and never did they pressure me to abort. They just gave us the options and answered our many questions. (Unfortunately, this is not the case with a lot of Dr’s. They see a serious issue and immediately recommend terminating the pregnancy. **In my case, it was never even brought up, and I would not have considered it if it had been.)
Of course we wanted to know if Tristyn had a chance, how serious the heart issues were, etc… They assured us that medicine had made HUGE advances in the past few years and that he would get the best care available. They were fairly certain he could be “treated”. But they also let us know that since they were not God, they could not promise anything, but that they were fairly certain that he would be ok. (We were told they were 75% certain.)
We saw 3 Dr’s throughout the pregnancy every 4 weeks and then as it got closer every 2 weeks. I also has 3 times a week stress tests from 32 weeks on. Because of Tristyn’s heart and my high risk, I was scheduled to be induced at 38 weeks.
At my 37 week appt, my blood pressure was very elevated and I was already effaced and dilated a good bit, so the Dr’s decided to induce that day for Tristyn’s safety.
A flight transport team was in the NICU OR Delivery Room. Tristyn ended up being too large for me to deliver naturally, and after 2-3 pushes, he was in distress and time was now an issue. He needed OUT, immediately. An emergency c-section was performed, and a short time later, he was here, and he was beautiful!
Miraculously, he was also stable, so I got to hold him for about a minute, then he was whisked to the NICU. He stayed in the NICU for 6 days and was on no medicines the entire time.
After 6 days, we were released and told to go on home, but to come back in 3 days to have his PDA (the blood vessel that pumps the blood from Mommy when babies are in utero) checked, since this is what was allowing his heart to work. It normally closes after the baby is born, allowing their heart to take over.
That appointment sent our world into a tail spin. We were told that the PDA was almost entirely closed and that Tristyn was in heart failure. This was on a Friday. We were told explicitly, that if we were not in the hospital that night, by Monday, he would be critical.
We were given 2 options, we could go to the Cardiologist’s first choice, Boston Children’s Hospital or go to Ochsner Hospital in New Orleans. Well, we live in Louisiana and I was not able to travel really (I was basically gutted with no meds kicked in, because Tris was in so much distress, and he needed to be OUT of me so quickly), so we went to Ochsner. It’s one of the top 50 Heart Hospital’s in the country.
We left the appt, went home, packed a bag, and got onto the road (We live about an hour and a half from NOLA). That night, we checked Tristyn into the PICU… and spent the next 30 days there.
The next day, a Saturday, we met with the Cardiologists on staff there and also one of the Surgeons. That’s when we were told that Tristyn had a few more issues than they’d previously thought. They had discovered that he had a condition called Shone’s Complex. This is the rarest form of Hypoplastic Left Heart Syndrome. Instead of just having the VSD and CoA, he also had a very small left ventricle, an ASD, a small mitral valve, bicuspid aortic valve, and his blood flowed in both directions in his heart.
At 20 days old, Tristyn had his first open heart surgery to repair the CoA (it narrowed in 3 spots) and he received a pulmonary band. (Basically a band was placed around his Pulmonary Artery to force the blood to flow through the newly repaired Aorta.)
He developed a few issues after his surgery and for basically the first 6 weeks of his life, we lived in the ICU.
At 4 months old, he had his 2nd open heart surgery to remove the PA band and repair the damage to the PA that the band caused. That hospital stay was a total of 5 days! We spent Tristyn’s first Thanksgiving in the hospital! But it was smooth sailing!
In January 2010, Tris was hospitalized for 7 days with a collapsed lung.
In June 2010, Tristyn’s had his 3rd Heart Surgery. His VSD (26 of them actually) was closed with a very large plug via a heart cath.
A week after that surgery, he was again hospitalized for a week and no one could figure out what exactly was wrong with him. He was breathing very rapidly and his blood pressure was very low, and his Tricuspid Valve was now leaking. But after 5 days, his Cardiologist figured it out; the plug was the issue.
It was so large and Tris had so many VSD’s that it did not close all of them and of the 2 that were left, one was directly on top of the plug and the blood was flowing through it, using the plug as a ramp, and shooting the blood directly into the Tricuspid Valve, causing the leak.
Tristyn spent his first birthday at home and we had a huge celebration where about 70 people showed up!
Tristyn will need his valves replaced in the next few years. We are hoping to be able to wait until he is around 6-7 years old. If we can wait that long, he can get adult sized valves and “hopefully” he won’t need any additional surgeries. However, this may not be realistic.
But, he’s 4 today and has NOT had any surgeries or hospital stays in 2 years!
Since having his surgeries, he has developed Mitral, Aortic, and Sub-Aortic Stenosis, but he’s so healthy!
Looking at him, you wouldn’t know that he’s a heart baby! He is happy all the time and just really a miracle.
He’s a typical 4 year old in most ways and he has no idea he’s “sick”. His life is as normal as it can be and we thank God every single day for blessing us with him!
1 in 100 babies is born with some sort of heart defect. A lot of them self correct, but in cases like ours, serious intervention is needed.
Tristyn is our 1 in 100 and he’s such a blessing!
Happy 4th Birthday Baby Boy!
This life is NOT what we expected when we decided we wanted to be parents, but we grow, we learn, we teach, and we educate and it’s everything we could ever hope it would be!
I’ve thrown a lot of “heart terms” out there, so here’s a diagram of a “normal heart.”