Heart Renderings, cont.
Three months into my pregnancy and wanting to be prepared for a baby with Marfan syndrome, I had genetic testing done on myself first, then we would test the baby. We were going to have our baby whether or not he had Marfans, but we just wanted to know.
Several weeks after my testing, I got a surprising and unsettling call saying a gene mutation for Marfan could not be found and that they would continue to look for other gene changes. I didn't understand it at the time – I didn't know other connective tissue disorders even existed!
Another month went by as I enjoyed all the pregnancy ups and downs... morning sickness (woohoo!), cravings, my cute little growing belly. I finally got a call letting me know a mutation for something called Loeys-Dietz Syndrome had been found. The lady on the phone had to spell it for me so I could look it up on my own. At the time I really didn't react, more accurately, I didn't know better to react.
It wasn't until my first high-risk OB appointment after my diagnosis that the red flags went up. The high-risk team previously thought I had Marfan syndrome, but suddenly the entire team was on high alert. Their solution was to "strongly recommend" terminating the pregnancy. I could then have my aortic root repaired, and get pregnant again.
They told us that legally we had until the 24th week of pregnancy to make the decision to terminate. Our baby was 20 weeks old, and we had already become very familiar and attached to our little guy. Emotionally, physically, psychologically... in every way possible, he was already our son. We visited him regularly through ultrasounds, he had a name, he had a personality, he joined in our everyday conversations, we read to him every night, we played our favorite music and danced with him. There was never any question as to whether we were going to keep our baby boy. But, the reality was, I was risking my life to save his.
The rest of the pregnancy was as bumpy as you can imagine. Aside from the baby possibly having LDS (which we decided after all that trouble to wait until after he was born to find out), I was a walking, ticking time bomb. With ultrasounds twice a week and echos monthly, my doctor debated each time which was the bigger risk... delivering or waiting until the next ultrasound.
My aortic root was growing rapidly. How much further can they push me? 4.3 cm... 4.6 cm... Then at the 34th week, my blood pressure was through the roof. I saw a moment of panic in my OB's eyes, then relief, as if to say, "Phew! You're going to make it! You're going to survive!"
"We're not going to do the ultrasound. It's time. We're admitting you right now," she said. The tears started flowing. A sense of calm came over me, then excitement. Calm because I was safe at the hospital and my aortic root wasn't going to randomly explode. Excited because, well, because I was about to have a baby! All of the worries I had during my entire pregnancy about my aortic root and about the possibility of having a premature baby with LDS went away for the moment, and I just enjoyed all the preparation and excitement. Once admitted, I was diagnosed with preeclampsia (which was not unexpected), and a C-section was scheduled for the next morning.
On December 22, 2009, 6 weeks before he was due to meet us, at 8:02 a.m., a 3 1/2 pound Bodhi Oliver Swindle popped his little head over the sheet to say a confused hello, and then he was whisked away.
I was so happy in that moment (and totally drugged up) that I didn't think about the fact that I didn't get to introduce myself to him, I didn't get to hold him against me, he didn't get to lay on my chest and hear my reassuring heartbeat. For reasons I still don't understand today, I wasn't able to meet Bodhi until two days after he was born. And even though he was in an incubator hooked up to a dozen tubes and half a dozen machines, I could relive that moment over and over again.
Diagnosed with LDS upon physical exam, the doctors were worried about the stability of Bodhi's cervical spine so, aside from when I got to meet him, we were not allowed to hold him for two weeks. With a plethora of problems and a rare diagnosis of LDS that peaked the interest of just about every pediatric doctor in the hospital, Bodhi would spend a total of 6 weeks in the NICU. We brought him home three days after his due date, on February 2, 2010. Then it was my turn. A week later, we packed up and headed to Northwestern Hospital in Chicago from our home in Kansas City. I was scheduled to have a valve sparing aortic root repair on February 12th. We were assured that we had come to the right place, that this would be a routine open heart surgery, and that I would be home within a week. We had already been through so much that I wasn't really nervous at all. I had been constantly nervous about having an aortic dissection for so long and the root repair would lift that weight right off my shoulders for good. I knew it would be a long recovery, but then we could put all this behind us and just enjoy being a family. Well, things didn't quite go as planned.
I woke up from surgery still intubated, assuming it was the next day. For several days my family and the doctors avoided cluing me in on what had actually happened. Then finally, Ryan got up the nerve to tell me that it had been two weeks since the surgery. He told me that at first, the doctors declared the surgery a success. But late that night I went into cardiac arrest. I died for 5 minutes before doctors revived me. I was rushed back into surgery where doctors performed a right coronary artery bypass. Several more complications occurred that are too numerous to mention, but the doctors did not expect me to pull through and told my family on numerous occasions to prepare for the worst. But, I am a strong willed, stubborn, determined person, and when I have my heart set on something, I do it. So heck yeah, I survived. I would spend an entire month of being away from my precious new baby. And it was almost a year before I felt fully recovered. My last check up with my cardiologist revealed that I am fully recovered from heart failure.
So here we are, finally. We call ourselves The Awesome Family, well, because we're pretty awesome! Whatever adversities we face we always come out each time stronger and more ready fight the next one.
We watch Bodhi grow right before our eyes every single day, and still we are shocked that he's now two and a half. His name tells us to live life in the best way possible, in order to make the world a better place, because we are all connected. And despite all he's been through so far he lives up to that name. He is always joyful, spreading smiles to everyone around him, and he is a daily reminder for us to do the same. LDS isn't just something we have, it's something we live, every single day. Bodhi currently has six therapies to help him develop. He no longer has a g-tube (for now), but he gets all of his nutrition from formula. He getting an endoscopy this spring to confirm eosinophilic esophogitis and he will most likely need an aortic root repair as a child, but we'll jump that hurdle and whatever else comes along when we come to it. For now, he's just enjoying being a kid, and we're just enjoying being Awesome Mom and Dad.