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Tuesday, March 8, 2011

Matters of the Heart

Abba getting his first up-close-and-personal glimpse of moi
When I was born, my arrival sent many professionals into a panic. Despite my cheery orange hair, the remaining lanugo (white fetal hair) effecting a halo around my cherubic face and a trademark broken cry that my parents were soon able to identify from across the preemie ward, the doctors decided to worry. They kept me hospitalized for a full week attached to all sorts of beeping instruments and an IV in my very tiny wrist. On the bright side, it was air conditioned and it spared my parents changing my most evil meconium diapers. When they did discharge me, the doctors sent my parents home with a list of scary possibilities which they should monitor: my eating or lack thereof, sweating profusely, turning blue when crying, not growing or gaining weight, sleeping more and longer, etc.

Mommy said I reminded her of sunshine

All of this was because of my heart. I was born with what is known as AV canal defect. Since I’m just a baby and not a doctor I won’t try to explain it as I might get some of the technical jargon wrong, but basically the walls of my heart are not complete and that can only be fixed surgically or miraculously, which would be a GREAT option. I guess AV canal problem presents differently in different people. That’s why my friend Hallel won't have her operation till between 1 and 3 years old while my cardiologist said mine should be before I turn 7 months. Well, that will be in exactly one week, and most likely I will not undergo an operation before then. 

I do, however, have a major appointment tomorrow morning with hospital VIPs. My cardiologist, other heart doctors and surgeons will be there to check me out and give us a date for surgery. It is a day of reckoning of sorts. Since the initial worry has worn off, it is easy to forget this big looming issue. The first days home were a bit harrowing as I recall. Well, not as much for me.

But being new parents, abba and mommy had ample opportunity to worry despite my best reassurances. Let’s go through the doctors’ list:

  1. They doctors said I’d never be able to nurse. But after eight weeks of life, I decided to prove them wrong, getting my mouth muscles up to par and pumping my heart. Now I do nothing else for food. Oh, the tastings you saw in the videos? That is for fun, not sustenance.
  2. I did sweat profusely, but the new parents realized that stemmed from the 100+ temperatures inside and out of the apartment during the hottest summer ever. And perhaps they should not have swaddled me on those sauna-like nights.
  3. Turn blue while crying? Well, at first my parents didn’t let me cry. Typical new parents they materialized out of thin air at the first hint of my stirring. And I only turn as blue as any baby trying to get their point across.
  4. I am steadily gaining weight like a champ even though I’m still relatively small. 
  5. They told my parents that I would sleep more often and longer as I “aged.” Oh that THIS were true. Instead from months 5.5 to 6.5 I had the most wakeful time of my life, ever. Approximately three times a night in fact. Plus I’m extremely physically active. I roll over like a snowball down a mountain and I am learning to swim - massive cardio events at this age.
There was one time when the panic hit a crescendo. In mid-December I wasn’t eating well at all. Mommy noticed that I winced when I would begin eating and that I would very weakly take in some milk before giving up. She thought that for sure it was my heart failing and she was ready to cancel our trip to NY and plan for emergency surgery. But as I was trying to tell her, no, it was merely thrush, a fungus that grew on my tongue and affected my eating.

So despite all the evidence to the contrary, I am on the examination table for my heart tomorrow at the hospital. Coincidentally (or ironically??) my paternal grandfather is having a procedure tomorrow for his heart. Our issues are not related, but he is also constantly under observation so that his heart continues to function properly. We will be at different hospitals at the same time, both getting our hearts checked. Warm and comforting in a way.

I appreciate your prayers and thought for tomorrow! Remember, option 2, "miracle," is our first choice :) 

Now, here is a portfolio of one of my spiffy Ralph Lauren outfits, courtesy of Mimi (maternal grandmother) who has me all ready for Long Island's Gold Coast (as if!). Mommy constantly laughed at me and called me Little Lord Fauntleroy for some reason as I wore my double-breasted, collared, finely knit attire.


  1. Will be praying. :)

  2. you are in my prayers- keep up the good work of being a cute baby!

  3. Hey Daniel, you are such a CHAMPION!! i'M ROOTING & PRAYING FOR YOU!! For your mom & dad too, in case they are worry-pots. The Lord loves you even more than they do, isn't that hard to imagine?! And He is always with you and has great plans for you! Love Rose, South Africa

  4. Praying for you Daniel! You are in God's caring and loving hands!