There’s something wrong with this baby’s heart

Those were some of the worst words I’ve ever heard.  In August of 2004, K and I were at our 18 week sonogram.  We thought the day’s biggest news would be learning the sexes of our twins.  The sonogram technician had just told us that we were going to have a boy (Baby A) and a girl (Baby B).  We even had my dad come in from the waiting room to show him his newest granddaughter and his first grandson.

Then the radiologist came in.

Look, I know doctors have a hard job.  I know they see all sorts of bad things that could harden them to the unique sufferings of an individual patient.  But when the radiologist so matter-of-factly informed us “There’s something wrong with this baby’s heart,” it sounded no more significant than if he had just told us our car’s suspension needed to be aligned.

He then proceeded to diagnose the problem (funny, I didn’t know he was also a cardiologist), spewing out the “most likely” causes and their impacts on Baby A’s future, some involving untreatable cysts that would most likely ravage Baby A’s body over his much-shortened life.

Needless to say, we would classify this doctor’s bedside manner as less than ideal.

So, we had just gone from the highest of points (finding out we were having a boy and a girl) to the lowest of points (our boy had serious health problems) within a matter of minutes.  To say we were in a state of shock would be putting it mildly.

I can remember sitting in the Wendy’s next door to the radiologist’s office, praying a lot, and going into task mode.  Those who know me can attest to the fact that I am task oriented (straddling the line between ESTP and ISTP on Meyers-Briggs).  I had a problem to solve and I was going to figure out how to fix it.  I guess “defense mechanism” would be the best way to put it.  I needed to strategize a plan of attack, try to comfort my shaken wife, and keep myself from bursting into tears all at the same time.

Over the next several months, we had many trips to the pediatric cardiologist.  Since the best in utero diagnostic tool the cardiologist has is the sonogram, we averaged about one sonogram every other week for the first couple of months.  I saw so many sonograms that I think I could run the machine.  Shoot, I was ready to buy a home sonogram machine  so I could peek in on the kids at any time.  Control issues much?

The cardiologist called Baby A’s issue hypoplastic right heart syndrome, meaning, for some reason, the right ventricle was much smaller than it needed to be.  There are several causes for this condition, but the real cause would be tough to diagnose in utero.

There is a range of treatments for this type of issue, from simple to complex.  They said chances were good that his right ventricle would not be viable, meaning he would need a complex corrective surgery,  called a Fontan Procedure, essentially bypassing and re-plumbing the right side of his heart.

Complicating matters was the fact that, around 23 weeks, K started to have contractions.  To combat this, she was given anti-contraction medication and put on strict bedrest.  And by strict, I don’t mean “spend most of the day in bed,  get up to get some food, go get the mail, maybe do a little laundry, then saunter back to bed.”  She could get up to take a shower once a day and to go to the bathroom whenever needed.  That’s it.

Bedrest_setup (Custom)K’s bedrest setup.  Notice the essentials.
Refrigerator.  Microwave.  Water.
Swiss Cake Rolls.

Now to any men out there, you may be thinking this sounds like nirvana …  Three days. That’s how long you’d last before going crazy.

Fast forward 101 days (that’s how long she spent on bedrest, with the last 27 days being in the hospital’s High Risk Pregnancy ward … shout out to room W645, CPQ!).  We made it to 37 weeks, so the doctors didn’t expect any other issues.

Checking_Email_HRP (Custom)One must keep up with email, even in the HRP

Aunt CPQ
revisits her old room at HRP
(K had the exact same room)
CPQ_Boys_HRP (Custom)The CPQ Boys’ picture on the HRP Wall of Fame

There were approximately a dozen doctors and nurses in the delivery room, most who were from cardiology and the NICU, ready to wisk Baby A away.

KandJK greets Baby A (notice his purple fingers)

JtoNICUBaby A heads to the NICU

I think that’s enough drama for one post.  Come back Monday for part 2.  Same bat time, same bat channel.

Explore posts in the same categories: heart, Kids

3 Comments on “There’s something wrong with this baby’s heart”

  1. quotation marks Says:

    Never forget. Good to see your thought process. Continue to pray. Blue fingers, not good. Praise the Lord for miracles.

    Love their long “tongues.” Wonder who they got them from? Bad grammar, but you get my drift. Ha.

  2. carpoolqueen Says:

    I remember that room well. Notice I didn’t say “fondly”.

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