Ugh.

Well I guess my baby couldn’t stay a baby forever.  I think he’s officially toddling.  

I have mixed emotions.  On one hand, I’m proud (and glad) that he is progressing normally.  He gets so excited when he does it, so that makes me happy too.  But it also means that he’s growing up faster than I’d like.  Some lady in Whole Foods one day told me (when I was lamenting him growing up too fast) that every stage would be my favorite.  So far she’s been right, but I still don’t have to like leaving the last one behind.  

Like everything else, he is awesome at it.  It’s pretty clear that he walks better than any other toddler, ever.  As a compromise, he does still let me hold him, so that’s good.  I can also still beat him in a footrace, which is important.  I do, however, need to start planning for when he can outrun me.  I’m sure he will get into a lot more stuff now, but luckily I’m not the stay-at-home mom.  But you should all say a prayer for Christy.  She will need it.

Smartest. Baby. Ever.

One of the odd quirks about having surgery done at a world class hospital is that those hospitals tend to be teaching hospitals.  Which also means that the doctors are simultaneously awesome doctors and medical faculty.  In order to be an academic, one has to publish research.  And who better to do research on than your patients!  I think it’s standard at teaching hospitals for the patients to be asked to be a part of like a kabillion studies.  We were approached about participating in 3 of them (I think), 2 of which I remember, and 1 of which we decided to participate in.  And when it’s 24 hours before your 3-day old has open heart surgery, 3 is a pretty good approximation for infinity.

The winner of our particular study lottery is researching how being on a heart-lung bypass machine at less than a week old can affect future brain development.  As it turns out, stopping a heart can lead to oxygen deprivation in the brain (who’d have thought?), and having oxygen deprivation in your brain at 3 days old can cause developmental issues down the road.  So they gave him their drug (some existing drug that’s supposed to stimulate red blood cell production) or a placebo (don’t know which), did a brain MRI before surgery, a brain MRI after surgery, monitored blood oxygen saturation during surgery and did a developmental test in his first month of life.  Rinse and repeat for surgery #2.  Then the plan was to do more developmental tests at 1 year old, at 3 years old, and at 5 years old.

This past Monday was the 1 year developmental checkup.  Basically, they gave him some standard baby things to do, and he did them.  Then they gave him some basic reading and arithmetic.  Then more advanced reading, basic differential calculus, and an IQ test (his resulting IQ was about 270).  Then they just gave him a pencil and some paper and he went ahead and proved Fermat’s last theorem. (He later told me that he thought Fermat’s birthday was the August 15th and that he was trying to be funny.  Turns out Fermat’s birthday is the 17th.  Oops.  I don’t think the tester caught the joke.)  When it was over the tester said, “well I certainly don’t see any developmental issues.”  I guess she was being sarcastic.  I’m sure she meant to say that he’s the smartest baby she had ever encountered.

Winning!

One Year Checkup, Part Deux

I’m sure after reading about the cardiology one year checkup a couple weeks ago, you were all wondering, “OMG WHAT ABOUT THE PEDIATRICIAN?  SURELY THERE’S ANOTHER DOCTOR UPDATE!!”  Well never fear, we have plenty of doctor’s appointments and I am happy to post a report on each one.  The truth is, good defined milestones for posting these things aren’t always obvious (I mean, if I posted every time David did something cute, Google would run out of storage), but I know that when there’s a doctor’s appointment, I should post.

This past Tuesday was the 12 month pediatric checkup.  After David had finished running some game on the nurses and thoroughly exploring the room we were in, the doctor came in.  He looked at the chart, and basically the first thing he says is, “Looks like his growth has slowed a little more than we’d like.”  I didn’t need to look over at Christy to know that she was having the same internal reaction that I was.  Namely, “If we have to have another knock down fight with a doctor about feeding David, I’m going to hit someone.”

You see, at TCH after the first surgery, they were VERY paranoid about him not growing fast enough.  So paranoid, in fact, that they presumed a massive problem would be there even before it happened.  And I mean, I understand that his heart is less efficient than normal, and that he’s going to burn more calories than normal.  I really understand.  But after we’ve told one doctor, “no, we’re not going to add formula to his breast milk, Christy is just going to nurse him unless we actually SEE a growth problem,” I’d hope that they’d write that down and that would be the end.  Of course, people are stupid, so they never do things that make sense.  It literally took Christy telling one of them, “GFY, I’m nursing him.” before they just left it alone at the hospital.  And then, of course, every time we went back for a checkup they would AGAIN inform us that we needed to be fortifying his milk EVEN THOUGH HIS GROWTH WAS NORMAL.  So, needless to say, we are somewhat touchy about this particular issue.

Back to Tuesday.  So the doctor is worried about his growth.  He asks what we’re feeding him.  We tell him.  He says, “well you’re going to think this sounds a little crazy (Paul and Christy brace for impact), but I need you to add some heavy cream to his oatmeal in the morning.  Or butter, if you feed him grits.”  That's it? Really?  He just wants us to make sure we’re feeding David enough.  He did ask for us (read: Christy) to keep a log of what David eats and to bring it back in 2 weeks.  I was shocked at the level of sanity.  From the way he talked, it sounded like he has the same opinion of dietetics that we do - basically that it’s junk science.  Seriously, these are the people who have made America the most obese and unhealthy place in the world, why the hell should we listen to anything they say?  But I digress.

The nutshell version of all of that is that David should be 20 lbs instead of 18.5 (he’s basically been on the 5% growth curve since he was born), that we need to supplement some of his meals with butter and/or cream, and that we have to keep a log of his food for 2 weeks.  The logging isn’t particularly exciting (we have done enough logging, thank you very much), but I guess it could be worse.  For his part, David is enjoying the new diet.  He gets oatmeal with coconut milk (delicious btw) or cheese grits in the mornings, he had indian food swimming in butter on tuesday evening, and today he had grilled wild coho salmon with a side of creamed spinach for lunch.  The docs always said that he’d be skinny.  I guess we will see.

Obligatory David Picture

1 year, and all is well

These posts are always weird.  I mean, on one hand, the whole purpose of this blog is to facilitate people who want to follow the life and times of a modern medical marvel, with the medical marvel part being pretty front and center.  And one of my favorite bloggers says that in order to be a good writer, you have to bleed.  But at the same time, I’m not a sad guy.  Plus, I hate whiners.  And people who do the very things that they claim to hate.  A lot of times, when I’m writing these posts, I feel like I’m whining.  “Woe is me, my baby has a heart defect.”  I mean seriously, who wants to read that?  On the other hand, I’m not sure I can write a “first year of life” update without it.

366 days ago, Christy gave birth to a beautiful baby boy.  Then I followed the doctors as they took him out to the hallway, put him on a warming bed, and stuck an IV in him.  It was a strange swirl of emotions - complete awe that this little person was my son, complete terror that he might die.  If on that afternoon, someone had showed me the pictures and videos that we’ve taken over the last year, I think I would have called them a liar.  Then they would have said, “are you serious?  That kid could be your clone.”  I would have responded, “maybe it’s my sister’s baby, the Vicknair genes are pretty strong.”  They would have replied, “Yes, but your sister’s baby will be half mexican.  Does that baby look mexican to you?”  To which I’d have said, “Touche.”

Paul as a baby

David at 4 weeks old

3 days later, there was heart surgery.  Then recovery.  Then lots of home care.  Then another surgery.  Then another recovery.  On the plus side, though, we were home by Christmas.  And through it all, David has been the awesomest baby that any parent could ever hope for.  Seriously, I think God gave him the heart defect because he is otherwise perfect.  The existence of perfect people isn’t allowed, so he had to throw in something to counterbalance how awesome David would turn out to be.  He’s well behaved, he’s smart, and he constantly makes me laugh.  All in all, totally worth it.


Today, we have a near-toddler on our hands.  (As an aside, I think we can all agree that a child is a baby until he actually toddles.  So, until he learns to walk, David is a baby, not a toddler.)  He turbo crawls everywhere, he knows baby signs, he loves food, he loves women, and he’s just generally about the smartest and funnest baby that I can conceive of.  The idea that he can get any better baffles me, but it seems to happen every day.  And here’s hoping we have a lot more days.

Happy Birthday, David.

Still kickin...

Unlike the previous phase of this adventure when it seemed like we visited the cardiologist every other day, we are currently on a once every 3-months schedule.  This way is a lot better.  

Today was the 12 month visit, only the third since we got back from surgery #2.  David’s gotten a lot better about all of the poking and prodding, and is a complete pimp with the nurses.  I wish there had been light in the room where they did the echocardiogram, because he was flirting like crazy with the technician.  For the first several months of his life, he absolutely hated things like EKGs and having his blood pressure taken. Today he was more concerned with adding a nurse to his harem than he was with the stickers all over him.

As for the doctor visit part, the cardiologist seemed quite happy with how David is progressing.  David is still right on or around the 5% growth curve (bigger than only 5% of babies his age), which I think is ok as long as he’s staying on that curve.  Which he has.  His blood oxygen saturation is still good (low 90%, normal is 100%), his blood pressure is good, and all of the things that they looked for in his echo were what they wanted to see.  The doctor even told us that David has a really nice head of hair - apparently one of the indicators that a person’s heart is having trouble is that the hair on his head will get thin and brittle.  Which David’s is not.

Everything else is still going quite well.  David has a couple more teeth coming in, front two on the top this time.  He’s chattering nonsense all the time.  I think I’m going to need some of those fancy Bose noise cancelling headphones once he actually starts talking.  He will stand and walk as long as he’s got something to hold on to.  We’re pretty sure he can stand by himself, but any time we manage to let go of him so that he’s on his own, he realizes that he’s standing on his own and sits down.  He’s eating pretty much anything that we do and seems to have finally figured out how to work a sippy cup.
One year old is coming pretty quickly.  I can’t believe that my baby is almost a toddler!  Next thing I know he will be leaving for college.  Oh well, I guess nothing lasts forever.  I wonder when I should start nagging him about grandbabies...