Monday, September 26, 2011

Matters of the Heart

Last night Mr. Fantastic and I watched a movie, and as the main character's flashbacks started, I thought, "I know flashbacks are a great tool for movies, but it just doesn't happen that way in real life." I don't think I've ever relived a moment in my past so vividly just by thinking about it. I have memories that can be triggered by certain sights, smells, words, etc, but that doesn't mean that I relive them, I just... well, remember them.

And then today I took Roo to the cardiologist, and as I pulled up to Children's Hospital I had a vivid memory of arriving at the ER there with our 3-day-old baby, who had jaundice--and then issue after issue, which we now know were just signs trying to point us to the ultimate diagnosis of Down syndrome. And I truly did relive the moment. And as I walked in and saw all the same sights, I could almost audibly hear the words I said to my husband over a year ago, "This all seems huge right now, but I know that someday we'll look back on this and laugh. We'll drive past Children's and say, 'Remember when we had to go there? Gosh, which kid was it? And was it for... jaundice or something?' In the long run, this will be nothing." (Ha. God must have had a little chuckle over that one.)

And now the murals at Children's are familiar to me. I know how to get everywhere I need to go. My big kids (when they're with me--and thankfully they were not today) know where the big ball maze is. It's part of our lives. And as much as I am growing and changing and accepting--and even embracing--our new life, there's a part of me that hurts every time we walk through those doors. It's a love-hate relationship--I am so thankful that we have a Children's Hospital just 20 minutes away, but I really wish we didn't need it.

But we do.  We do need it, and today we were there for a quick check of Roo's ticker. And by quick, I mean it took roughly half of an eternity longer than I had anticipated.

If you're not keeping close tabs on Roo's heart issues (which of course you all are, I'm certain), here's a quick recap. He was diagnosed at his first appointment last year with two holes in his heart, an Atrial Septal Defect (ASD) and a Ventricular Septal Defect (VSD). The VSD was very small, and the doctor actually thought it may close up on its own. The ASD was "moderate" in size--one step above small--and would likely require a small procedure to repair it. The procedure wouldn't be done until Roo was around age 5, and it would  not require open heart surgery, thank goodness. There was a chance it could also repair itself, but most likely it wouldn't because of its size. For a child with Down syndrome, the doctor told us, Roo's heart issues were very minor. He just asked that we follow up about once a year to keep an eye on the ASD until it could be repaired.

So it was the annual checkup that took us back to the doctor's office today. Next year I will remember when I call to schedule our appointment to ask for an echocardiogram. Both times we've gone, the doctor has wanted one but it wasn't on the schedule, so our appointment took much longer than necessary because we had to wait for a chance to be squeezed in for the echo. By "longer than necessary", I mean that we spent approximately 15 minutes with the doctor, 30 minutes getting the echo, and an hour and forty-five minutes waiting. Did I mention that Roo's appointment was at 12:30, and that his naptime is at 1:00?  He did fall asleep while we were waiting for the echo, but woke up about 20 minutes later when I laid him down for the test. By the time we were done, the poor kid was toast.  (And then he went to bed for the night at 6:00--he was exhausted!)

ANYWAY, we finally got the echo and all of the waiting out of the way, and here's what we heard: GOOD NEWS. It looks like the VSD pretty much has closed itself up!  The doctor said there's a chance that there's still a pinhole leak, but he really thinks it is closed and is completely unconcerned about it either way. And the ASD has shrunk by over 50%!! This is HUGE, especially since Roo has been growing--and his heart along with him.  :-) Last year one side of his heart was enlarged because of the extra blood flow (due to the hole), but thanks to the shrinking of the hole that is no longer the case either!  And the cardiologist even said there's a good chance that Roo won't need the procedure to repair this hole!!! That is a huge relief for me.  HUGE.

There was one other defect that he hadn't seen last year. It's called a cleft mitral valve leafleft.Yeah, I only remember because I had him write it down for me. Basically there's a little divet out of the tissue of one half of a valve, so every time the valve closes, a tiny little bit of blood seeps back through. But did you notice the key word there? Tiny. He said it is very minor and should not require any intervention. This is, however, probably my biggest prayer request coming out of this appointment. This is the only of Roo's defects that could worsen on its own--and while it is repairable, this particular defect would require open heart surgery to fix. Again, the cardiologist really didn't seem concerned, so I am not going to lose sleep over it, but you'd better believe I'm going to be praying that it doesn't progress into anything bigger!

But all-in-all, GREAT news from our appointment today. It was definitely good for my heart. And by the way, I do know that it seems a little melodramatic for me to feel so strongly about being at Children's Hospital. The truth is, Roo has been blessed with amazingly good health for a child with Down's and almost all of our appointments there have been "just in case" checks--not sick visits. And I am so, so thankful for that. But I just remember how... blissfully ignorant I was in that first week we spent at Children's when Roo was born. Don't get me wrong, I was unbelievably--and perhaps disproportionately--worried about my baby (I had, after all, just given birth, and was very sleep-deprived and maybe just a tad hormonal...); but I was also certain that once Roo got released, we'd never see the inside of that building again. We wouldn't have to be one of those families who is at Children's all the time because... well... that just wouldn't happen to us.

I remember being that person. But I'm not her anymore. I miss her sometimes--I mean, it's called blissfully ignorant for a reason--but I wouldn't want to be her again. She might not have known as much about Children's Hospital as I do, but she also didn't know sweet baby Roo like I do either. And I wouldn't trade that for the world.

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