Disillusioned

Sometimes life just isn’t fair. After the tentative joy we felt after receiving some “good” news at the last ultrasound (the possibility that Eli had no heart defect) today we are feeling the exact opposite. We were told that Eli does have a small hole in his heart and something called Tetralogy of Fallot. As I do not completely understand what this defect is (yet) I have pulled some information from the Mayo Clinic website (www.mayoclinic.com):
The four abnormalities that make up the tetralogy of Fallot include:

Pulmonary valve stenosis: This is a narrowing of the pulmonary valve, the flap that separates the right ventricle of the heart from the pulmonary artery, the main blood vessel leading to the lungs. Constriction of the pulmonary valve reduces blood flow to the lungs. The narrowing may also affect the muscle beneath the pulmonary valve.

Ventricular septal defect: This is a hole in the wall that separates the two lower chambers (ventricles) of the heart. The hole allows deoxygenated blood in the right ventricle — blood that has circulated through the body and is en route to the lungs to replenish its oxygen supply — to flow into the left ventricle and mix with oxygenated blood fresh from the lungs. Blood from the left ventricle also flows back to the right ventricle in an inefficient manner. This ability for blood to flow through the ventricular septal defect dilutes the supply of oxygenated blood to the body and eventually can weaken the heart.

Overriding aorta:
Normally the aorta, the main artery leading out to the body, branches off the left ventricle. In tetralogy of Fallot, the aorta is shifted slightly to the right and lies directly above the ventricular septal defect. In this position the aorta receives blood from both the right and left ventricles, mixing the oxygen-poor blood from the right ventricle with the oxygen-rich blood from the left ventricle.

Right ventricular hypertrophy:
When the heart’s pumping action is overworked, it causes the muscular wall of the right ventricle to enlarge and thicken. Over time this may cause the heart to stiffen, become weak and eventually fail.

What does this all mean? Honestly, I’m not sure. This is still very, very new information that I’m trying to digest. Tomorrow I should get a call from the pediatric cardiology department at Children’s Hospital in Seattle to schedule an appointment. That appointment will focus on the echocardiogram (ultrasound of the heart) and should provide us with some answers as to what all this means. As it turns out, the cardiologist that our ultrasound doctor referred happens to be one of Chuck’s customers. Small world.

Our emotions are very raw today. We are once again asking, ‘why us?’, ‘why Eli?’. He didn’t do anything to deserve the challenges he’ll face in his young life. Either did we. My faith has wavered a bit again. I don’t understand why God doesn’t answer our prayers. I know He must have a different plan for us and baby Eli but, for once, I was hoping we’d be on the same page. I am angry. Our hearts have carried a heavy burden since this journey started. I sometimes wish we had a rewind button and could start all over. I’d also settle for the pause button. But, as we’ve been shown, life is not that easy. It’s not a horror movie. You can’t fast forward through the gory stuff. In real life you fight like hell to just get through it. And we will. Eli will. I know it. In this I do have faith.

The love and support we’ve received from family, friends, and strangers has been overwhelming and humbling. I am so very grateful to those that have prayed for us, thought about us, laughed with us, and cried with us. Thank you from the bottom of my heart for loving us and most of all, for loving Eli.
xoxo

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One comment on “Disillusioned

  1. I feel your pain! It’s like a roller coaster for us too, happily rumbling along then one day you get another scary drop into oblivion. Latest on ours was a blocked bowel; needs op within days of birth: poor mite.
    Hope the heart problem is fixable xx

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