in the Waiting Room

it's finally time... time to schedule the surgery... time to write about D's heart condition... time to let people know the details of what has been/will be happening.

See the little heart sticker on his chest? That's an EKG lead. 

24 hours after D was born, he failed his newborn heart screening so he had to spend a whole day in the NICU. His pulse ox (oxygen saturation) level was less than 90%. (It's supposed to be 98-100%.) But nobody could figure out why. He stumped all the doctors... he passed every other test... he wasn't showing signs of oxygen distress (turning blue, coughing)... but he just couldn't pass that pulse ox screen. Finally, they had an ultrasound tech come over from Children's to give him an EKG... and she was very surprised by what she found... D has two superior vena cava.

A normal heart looks like this...

All the blood from the body dumps into the Right side, then goes to the lungs where it picks up oxygen, then gets dumped back into the left side where it gets pumped to the rest of the body. 

D's heart looks like this...

D has an extra Superior Vena Cava that carries blood from his head and left arm to his heart. It attaches to the Left atrium so it immediately gets pumped back out to his body, bypassing the lungs.

Since he has a small percentage of his blood that dumps into the left side of his heart, that blood never gets pumped to the lungs, so never picks up the oxygen it needs. As a result, D's heart is pumping a mixture of oxygenated and deoxygenated blood to his body. The result? A low pulse ox number. (Yes, M. and I have needed to recall all of our biology lectures concerning the circulatory system of the human body. In fact, the day that this was diagnosed my friend L. had come to the hospital to visit us and meet D. She has a background in and used to teach human anatomy. I don't know if I will ever be able to explain to her the comfort that it was having her there to help explain some of these terms when we first started hearing them. Thank you, L!)

At first, we celebrated because the pediatrician in the hospital so "no worries, it won't effect him, he's fine. But maybe follow up with a cardiologist just in case." A week later, the cardiologist said, "Um, yeah... we're pretty sure this is going to be a problem." and a one hour follow up appointment became a four hour ordeal that involved D being strapped to a table with an echocardiogram and an IV that didn't work right away. (Thank goodness my mom was up to help with the baby and my recovery... when we got home from the appointment, I lost it... she grabbed the baby and M. grabbed me.)

So first, the good news... D is a ground-breaker and history maker! The cardiologist was only "pretty sure" this would be a problem because there is "no history/record of anyone ever having this problem ever before in the history of the whole US." In fact, when M and I looked it up, there are medical journals which include this Double Superior Vena Cava issue occurring in tandem with many other heart problems (usually a complete right/left reversal) but they specifically state "there is no evidence that this problem (two vena cava) occurs in isolation." Now they have evidence... which means they want to publish the case for medical journals... which means he sees the same ultrasound tech every time, the same cardiologist and nurses every time, and they have consulted with a team of top surgeons to determine the best path for D's surgery. (good news!)

More good news... It's also quite a blessing that D didn't have any of the other very serious heart conditions that usually accompany this issue. (M feels that it's like the first chapter of Job when Satan comes to God and says, "Let me strike Job" and God says "This far, but no farther.")

Family time right before D's hernia surgery.

The "feels-not-so-good-but-still-trying-to-trust-the-goodness-of-God" news... D's pulse ox will get lower as he gets bigger and his heart needs to pump more blood. This will become a problem if he ever wants to do anything like, you know, run around and play. If his body can't get enough oxygen, he will pass out. If his brain can't get enough oxygen, he will have a stroke. (There is a small percentage of both of these possibilities happening now; but because he is little and his play-time encompasses mostly rolling over, it's not as serious now as it will be in the future.) This means that his heart will have to be fixed.

Because D is growing well, and shows all signs of good, normal health, his doctors think it's a great time for surgery. They are also considering the fact that his recovery won't take as long now because his body repairs itself so quickly and he will want to move and play as soon as possible so he won't be limited by the "I just had surgery mindset." Plus, since the newborn hole between his right and left aorta has closed, there is now a possibility that they won't have to stop his heart to do the surgery...

Surgery options: The doctors want to clip the LEFT vena cava and attach it to the right side of his heart. They can do this one of two ways...
       1. Clip the vein, run it under the "Aorta" arch (see picture above) and attach it to the RIGHT vena cava. Pros: they won't have to stop his heart and put him on bypass (yes, please!!). Cons: The veins have to be in close proximity for there to be enough material to stretch and attach.
       2. Leave the LEFT vena cava attached to the left side of the heart, create a new hole between the two atria, create a shunt/tunnel/path from the vena cava to the RIGHT atrium to reroute the blood. Pros: the size of D's heart and chest won't matter. Cons: They will have to stop his heart and put him on bypass for this surgery (what? did you say stop my 6 month olds heart? Excuse me, I have to sit down while you repeat that.)

The tricky part? They won't know which procedure they will need to do until the day of surgery. As my husband says, "It will be a game day call."

So that's what where we've been for six months and where we'll be going in six weeks. Surgery is scheduled for May 29th. We still pray everyday for healing, we still hope every moment that God will intervene and we won't have to face an operating room, and we still pray everyday for the strength to trust God's heart and purposes for our Little Man... even if that means we have to hand him over to a surgical team.

Three weeks ago... Another trip to the Cardiology wing at Children's for a sedated echocardiogram. 

*I had wanted to write more about how our family is processing all of this, but it turned out to be a lot of facts and figures and now my Little Man is singing over the monitor, ready to get up from his nap. I'll try to post again over the next few days, answering the question, "So really, how are you feeeeeeling?" Right now, I'm just going to go hug my smiley baby.