HOORAY!

Mary Clare’s impromptu cardiology visit was a blessing in disguise!   Driving down to Charleston, Mel and I were so nervous about the results of her visit.   We just couldn’t shake that stomach sickening feeling that you get when you know your baby is sick.   Very sick.  Although Mary Clare’s Oxygen saturation levels are dropping and she is turning bluer as the months roll along, her heart function/squeeze is great!  (For a single ventricle heart, that is.)   Her echo looked great and her EKG was perfect!  Her little heart is doing fine and now we know that for sure.  Whew!  In fact, we have been cleared for an “official” clinic visit until Spring 2010!  We will, at that point, schedule a heart catheterization to get detailed and very specific heart pressures.  Dr. Bradley typically operates within a month after a heart catheterization…so we have a tentative plan and until then, my little blueberry will be at home safe and sound!

Here is Mary Clare getting her echo with Ms. Karen, one of our favorite echo technicians!!

She is such a big girl during her echos and never fusses.

Her oxygen levels will continue to drop as her Fontan approaches, which is to be expected.  It’s kind-of a “catch 22.”   She needs to be a certain weight for the surgery, but at the same time, as time progresses and she gains weight, it places more stress on her heart and her function may decline.  So, although I want her to gain weight for her Fontan, I also know that it means that her levels will continue to drop with the added weight.

I think there must be  a fine line as to when the Fontan needs to take place, and I’m sure it varies for each child.  Many other hospitals perform the Fontan at much earlier ages, but I have complete confidence in Dr. Bradley and the  cardiology team at MUSC.   We know that because Dr. Bradley will use synthetic (man made) materials in this final surgery,  they will not “grow” with her heart.  They must be with her lifelong.  So, in layman’s terms, her heart cannot be too small because the materials used will be too big-they must be a certain size to last her throughout her life.  Also, we must wait for her to gain weight, but we can’t wait too long because her levels will continue to drop as she gets bigger.  (I know, very oxymoronish.)

After our 2 hour long visit at MUSC, we headed to our favorite lunch destination in Charleston, Fleet Landing!  It couldn’t have been a more beautiful day!

I didn’t notice this at all today during lunch, but as I was deleting photos, I stopped to wonder what in the world my lens focused on in this particular photo above.

After zooming in I saw the cross on the beach behind Mary Clare, which is exactly what I tried to focus on all day.

Refresher course on the Total Fontan procedure:  In a normal heart each ventricle does a separate job. The right ventricle pumps blood to the lungs, the left ventricle pumps blood to the body. In a single ventricle heart, like Mary Clare’s, there is only one ventricle large enough to do the normal job of pumping blood.  Cardiothoracic surgeons configure the circulation to maximize the efficiency of this single ventricle. This ultimately requires committing the single ventricle to doing the harder work of the heart, pumping blood to the body. The job of getting blood to the lungs must be done without a pump.  Whenever there is only one ventricle large enough to do a normal job of pumping blood, we need to configure the circulation to maximize the efficiency of this single ventricle without overworking it.  The “Fontan circulation” refers to this configuration where the single ventricle pumps blood returning from the lungs to the body, and the blood returning from the body travels to the lungs via direct blood vessel connections without a pumping chamber. In any individual child there may be different procedures needed to achieve this goal. – MUSC Children’s Hospital/Cardiology

Ultrasound, normal fetus – ventricles of brain
Ultrasound, normal fetus- ventricles of brainUltrasound, normal fetus – ventricles of brain
Ultrasound, normal fetus- ventricles of brainUltrasound, normal fetus – ventricles of brain
Ultrasound, normal fetus- ventricles of brain

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