Today was our initial meeting with our pediatric cardiologist, Dr. Videlefsky. I asked Dr. Sermons yesterday what he thought of him.
Me: "Is he a nice man?"
Dr. Sermons: *lengthy pause and stare with his one good eye* "Um... He's... brilliant."
(Mike and I busted out laughing)
Dr: "He may not be friendly, but he is The Name. If you need help with a baby heart, that's who you go to."
In the grand scheme of things, I'll take brilliant over chatty.
We met with him today, and walked out of his office feeling approximately 100 lbs lighter! He may not be the most touchy-feely guy I have ever met, but he DEFINITELY knows his stuff. In his own way, he was extremely comforting. And in his own words, Parker has a (imagine the South African accent here) "magnificent heart."
All things are formed perfectly. CDH babies (that's what the cool kids call babies like Parker) have increased chances of heart problems of a certain nature. So far, NOT PARKER! The size is perfect- no squooshing from the stomach and intestines that have taken over the chest cavity. The heart is pushed over to the right a pretty good amount, but he feels like it's not going to move anymore. All arteries and veins are pumping good blood volume (this he called "beautiful squeeze!"). There are no holes in any places that are not supposed to be there. In short, he said that Parker's heart looks great, even by normal baby standards. (He gave us a fascinating quick tour of the cardiopulmonary system, which I will explain to all you nerds out there who care. Scroll to the bottom, after the video if you want the nitty gritty. :-)
Hurdle #3-- See ya!!
While I was laying on the table, watching him perform the fetal echo (which is just basically a really long ultrasound), I was completely overcome by what a miracle Parker is, and all babies are. I watched his little heart pounding away, with the blood flow highlighted and looking like a fireworks display. I heard the cadence of his heartbeat. I saw all four chambers working in perfect harmony at such a fast pace. It was one of those moments where, whatever you are doing, you are completely and 100% hit in the face with the glory of God's creation. I've had similar moments-- standing in the middle of Ireland, holding my first little boy, so on and so forth. Today, though, just as I felt it, Dr. V actually said, "It's amazing, isn't it, that any babies are born healthy? They really are a miracle."
Indeed.
Since he was the first doctor we've seen since the diagnosis, he did a great job of answering our initial questions and telling us what to expect in the coming months. He confirmed that the hernia is "significant." That means there has been some migration of his stomach and intestines into the chest cavity. The fewer the organs that move, the better we'll be. However, there's no real way to predict now what his organs will do in 20 weeks. CDH is primarily a pulmonary issue-- no matter how great every other part of the baby is, if the lungs can't catch up quickly after repair surgery, it can get real serious real quick. We, thanks to Dr. Google, knew all that going in today. The national average for survivability of CDH babies is only 50%.
However.
HOWEVER.
Parker has crossed off two gigantic concerns that can present themselves in CDH cases-- chromosomal defects and heart defects. The heart situation may change, and I have to go back in 10 weeks to be sure it hasn't, but Dr. V feels great about it so far. With every hurdle we've crossed so far, Parker's chances are going up and up and up. Dr. V used the phrase that is of the most comfort to any parent- "If this was my child, I would be happy with today's outcomes." he reassured us that delivering at Northside is the absolute right decision and we don't need to temporarily relocate to California or North Carolina. For this point in a CDH pregnancy, we are in the best possible shape.
On the way home, I of course got Parker a celebratory donut for good behavior. As I left the drive-thru, "How He Loves Us" by Dave Crowder Band came on. I sat at that red light, raising my hands (and consequently my Krispy Kreme) towards heaven and sang, loudly and horribly I'm sure, praises to the God who formed that tiny little heart I watched beating so beautifully today. Sure, there are afflictions... but they are most definitely eclipsed by His glory if you allow yourself to see it.
Still here for the cardio lesson? Strap on in! Please, Lord, let me remember this correctly.
Above is the sketch of Parker's heart. Well, anybody's heart. Oxygenated blood flows from lungs through left atrium and left ventricle . It leaves through some valves and goes through the aorta to the organs, where all the oxygen is used up. Blue blood goes back into the heart-- right atrium, right ventricle, then back to the lungs via the pulmonary artery to repeat the whole procedure. There aren't supposed to be any holes in the walls of the heart, except for when you are a baby. The flap between right and left ventricle, called the PFO (short for something I am not going to attempt here) closes between 6 and 12 months of life. The other joint, below the heart, called the PDA, closes between 72 hours and 2 weeks after birth. Parker has no holes in the wrong spots and the right holes in the right spots. Completely amazing.
What can I say here? Ok, I'm super happy that you received good news! Not so happy you're going to see Dr. Videlefsky. As far as I'm concerned he almost killed my daughter. At the age of 15 or so (all of her illnesses run together so the age at which one happened can get a little cloudy) she developed ectopic atrial tachycardia (her heart was beating way too fast). She was physically exhausted because her heart muscle was working so hard and because her blood wasn't getting oxygenated efficiently. Dr. V decided to just "watch" her and see how it developed. After a year of repeated visits and no change, one night her heart rate skyrocketed to over 220 beats per minute. We took her to the Scottish Rite ER at GMC where we were treated as though we were guilty of neglect and were killing our daughter. We had more than one doctor question us about why it had been over a year and nothing had been done to treat her. They definitely didn't believe us that Dr. V had recommended we not do anything. They actually called him and got him on the phone and questioned him. Before we even left the ER I decided to find another doctor to get a second opinion. I am SOOOO glad that I did!! When we went to our current pediatric cardiologist (Dr. Margaret Strieper) she saw our daughter's heart rate and said "Oh my God! How long has this been going on? We need to do tests to make sure the heart hasn't been damaged by the overwork it's been doing." At any point my daughter could've gone into sudden cardiac arrest! I was SO angry that I couldn't even talk! If I had seen Dr. V that day, Mike's counterparts in Lawrenceville would've been slapping some silver bracelets on my wrists! Ultimately, Dr. Strieper gave my daughter her life back when she performed two cardiac ablations on her heart. If you feel comfortable with Dr. V, then go for it. However I would HIGHLY recommend going for a second opinion at the Sibley Heart Center. They have offices in Snellville and at Egleston Children's Hospital. PLEASE call them. My cell phone number is posted on my FB profile and Mike is one of my friends (from when I went thru the Suwanee Citizens Police Academy). Just sayin'...
ReplyDeleteAmazing indeed! I love how He sent a friendly reminder on your drive home . . . One of my favorite songs. He is ever present even when faced with hurdles. Now that's amazing grace. *love*
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