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4/7/92 (Day 143) — Preemies at Home, Day 11

April 7, 2011

Molly — 5 pounds, 2 ounces

Isaac — not weighed (they were only weighed at doctor visits, and Molly was going to the doctors much more frequently than Ike was these days)



Here’s an odd little picture of Ike with his bottle. We must have set it that way just to take his picture. It took him so long to eat, usually more than an hour. I believe that bottle held 50 ccs (about 10 teaspoons, or 1.7 ounces). I took Molly down to Lincoln Park to visit Dr. Cole and Dr. Weigel, her pediatric cardiologists. We had a lot of “-ists” on our call list. This day, they did a 2D report of her heart, examining her atrial septal defect and PDA (damn ductus still wouldn’t close, but now we knew it was because of the ASD). A summary of their diagnosis report is to the right. The gist of it was that she would require open heart surgery — soon.

Home nursing notes:

Per dad’s request: Night nurses — between 7 and 7:45 a.m., open front door. Dad will show you how to leave it slightly ajar. Day nurses — knock and come in. Please don’t ring the bell.
Also, I wrote an order for the Mylicon (Isaac) and the Lasix (time change for Molly). Parents have them for Dr. Lum to sign on Monday.
[What follows is a summarized version of a report from our visit with the pediatric cardiologists. I have omitted all references to the normal parts of her heart and only including information on the parts affected by her heart defect. See my notes and reactions below the report.
Echocardiogram Report
Clinical Diagnosis: Atrial Septal Defect and patent ducts arteriosus, premature infant.
Two-dimensional echocardiogram revealed situs solitus [normal position] of the atria and viscera. There was a large secundum artial septal defect [a hole in the middle of the wall between the upper chambers of the heart]  measuring 9.5 mm in diameter with a large amount of left-to-right shunting noted at the atrial level … The pulmonary veins were mildly dilated. There was moderate right atrial enlargement. There was moderate right ventricular enlargement with moderate right ventricular hypertrophy. The pulmonary valve annulus was mildly dilated. There was trivial pulmonary regurgitation noted by color flow. The branch pulmonary arteries were dilated. There was a small to moderate sized patent ductus arteriosus with predominate left-to-right shunting noted. Continuous wave Doppler … would suggest that there is moderate residual pulmonary arterial hypertension. There was mild hypovolemia on the left ventricle.
Final Impression
  1. Large secundum atrial septal defect.
  2. Small to moderate patent ductus arteriosus.
  3. Moderate residual pulmonary arterial hypertension.
  4. Moderate right atrial and right ventricular enlargement with moderate right ventricular hypertrophy and normal ventricular systolic function.
  5. Left ventricular hypovolemia [abnormal decrease in blood volume plasma] with normal systolic function.
[Here’s the thing about this relatively short report: The word “normal” was used eight times. Other modifiers like “”mildly” and “moderate” and “no evidence of” and “small” — these all seem like such innocuous words. But you never know in medical speak how significant even a “moderate” amount of something may be. Unless you have been to medical school or listen very closely to the explanations, you could think things weren’t so bad. But we knew they were, because Molly was clearly compromised. Her chest was retracting, especially while she ate, which she struggled to do. And then there was that whole turning blue thing. As I have mentioned before, blue is not a good color for people. When someone turns blue, there is definitely something wrong.
Fortunately, Drs. Cole and Weigel were very good at explaining things, and incredibly patient with my eight billion questions. Most children with the kind of heart defect Molly had are not  troubled by them until at least toddlerhood. If surgery is required, it generally isn’t necessary until preschool age or so. But of course, Molly wasn’t most children. She was a micropreemie and her heart condition was interfering with her ability to grow and develop. So, we were sent to see the surgeons at Children’s Memorial Hospital in Chicago.]
2 Comments leave one →
  1. April 7, 2011 10:00 pm

    I usually just stalk your blog… I’ve been following ever since you were freshly pressed. Of course, I had to go back and read about your ordeal from the beginning.

    Just thought I’d take a moment to say hi, and that I love reading about Mike and Ollie and knowing that despite everything that was stacked against them, they were able to thrive. I look forward to reading all your stories about them 🙂

    • April 8, 2011 7:47 am

      Thank you so much. I love when a “stalker” comes forth with a comment. It’s been amazing to relive these days, and has taught me some important lessons all over again. (I guess some of us need to learn them more than once 😉

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