I promise I won't title all my posts in the superlative comic book guy style, but really, this was the longest week of my life.
Of course, it was the only week of my life, so far, so maybe I just need some perspective.
You know that surprise birthday present I promised Mommy? Well, I gave it to her a little early, and it wasn't what either one of us expected.
Saturday morning, less than 8 hours after I was born, I got to meet my first doctor (not counting Mommy's doctor who caught me Friday night). My first doctor was also Mommy's first doctor when she was born (he must be the oldest person in the world)! He examined me and found not all was well. After running some tests and seeing my oxygen saturation was low, he sent me to the Newborn Intensive Care Unit (NICU, or "knee - Q") for a more thorough checkup by a cardiologist.
After a bunch of cold, slimy tests, the cardiologist told Mommy and Daddy that I have a congenital heart defect called "Tetralogy of Fallot" with "Pulmonary Atresia." Basically, this means my heart didn't form right, so I don't get blood to my lungs, so I don't get oxygen through my body. Had this not been caught so early, I would have turned blue, like that annoying detective doggy on the tv.
Normal:
Tetralogy of Fallot:
(Images from this article)
Pulmonary Atresia (I don't have the atrial septal defect shown below, because I have the ventricular septal defect shown above):
So, the doctor put me on some IV medicine called "prostaglandin E1" (PGE1) that kept my ductus arteriosus (DA) open, which simulates another heart defect called "PDA," where the DA doesn't close after birth, like it's supposed to. This allowed for some circulation to my lungs, and kept me alive.
Then I was transferred in a cool ambulance from St. Vincent's to Legacy Emanuel Children's Hospital, without Mommy (who was still a patient at St. Vincent's) or Daddy, who had to drive himself over later.
Daddy showed up a few hours later, and Mommy showed up a few hours after that. I was now in the Pediatric ICU (PICU, or "P - Q"), where I had my own room all to myself and nurses to feed me, change me, burp me, shine lights in my eyes, and stick thermometers in my butt.
Unfortunately, needing an IV drip to keep me alive wasn't very fun, so the doctors decided to perform open heart surgery on me.
On Tuesday, September 30th, the doctors installed a "Modified Blaylock-Taussig Shunt" and they closed off my ductus arteriosus, so this is what my heart looks like now (except my pulmonary valve is missing):
The development of the Blaylock-Taussig (and Thomas) Shunt procedure was the subject of a 2004 HBO movie called "Something the Lord Made" with Mos Def, Alan Rickman, Kyra Sedgwick, Gabrielle Union, Charles S. Dutton, and Mary Stuart Masterson. I haven't seen it yet, and neither have my parents, but Grandma Carolyn and Grandpa Greg say it's a very good movie.
Anyways, back to my heart, which is what you probably really care about. This surgery is palliative, so it is only temporary. I'm still not getting as much oxygen in my blood as I should, so I won't be running in any marathons any time soon. A corrective surgical repair of my heart (by sealing the ventricular septal defect -- the hole between my ventricles -- and installing a new pulmonary valve) will be done when I get bigger -- like a year from now -- because it won't grow with me, so if I can wait a year, then it will last longer and I will need fewer open heart surgeries in the future. Also, because I need my lungs at full function, it'd be bad if I got sick, so I can't go to daycare any time soon and hang out with smelly, snotty, coughing kids, and if you're sick, I won't get to meet you face to face until you're better.
As you can probably guess by now, the surgery on Tuesday went well. The doctors said I might be in the PICU for about a week after surgery, then in the normal infant/toddler unit for another week or so.
I was intubated during the surgery, and I was taken off the ventilator on Wednesday.
Thursday, I was moved out of the PICU into the infant/toddler unit, where I had to share a room again, with some kid named Joseph (I shared a room in the PICU with a girl named Baylee for only 1 night, before she moved on to another room).
Today, only 4 days after open heart surgery, at age 7 days, I got to go home!
Mommy and Daddy were very happy to take me home, but I miss all the nurses taking care of me, and I don't really like my car seat or my crib.
Anything else you want to know? Oh yeah, all the nurses and my pediatrician say I have really long toes! I'll get some pictures up here soon, so you can see how long they are.
Finally, feel free to post comments or email Mommy and Daddy with any other questions. They have a ton more pictures of me in the PICU but they're pretty graphic to post online. They'd be happy to share them if you ask.
Oh, but I should let you know that the most FAQ asked of Mommy and Daddy, asked by every doctor and nurse that saw me, is: "Did you get any prenatal care? The 20-week ultrasound should have caught this." Answer: "Yes. I guess they missed it. But, there is nothing they could have done during the pregnancy and the diagnosis would have just stressed us, so maybe it's a good thing."
Hopefully next week will be shorter!
☺
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