I’m beginning to think that no one knows what’s going on anymore including people who have 12-16 years of education.
After this week’s fetal echo, we’re left with a whole bunch of questions and no answers.
I rubbed his feet and knees while the doc and nurse hurt (at least) me. God knows what this is doing to our 3.5 pound baby.
This damned probing has to stop.
Dr. S said: “It’s not HLHS it’s more like Hypoplastic Left Ventricle. You all have been on my mind for the past four weeks since I saw you. I waited on sending out the letter…so now you’ll get two…”
During the delayed consult (another emergency in the hospital), Dr. S gave us a diagram with connotations of five other defects/disorders. The first of which is a Right Dominant Unbalanced AV Septal Defect. He mentioned three other patients in his practice with the same condition/s who lived without surgery for 20, almost 30, and 44 years. He said it was likely the fetus (god forbid Marshall is acknowledged as a person by using his name) may need a shut but not the Norwood.
As he has developed, his unique anatomy worked around the defects and made new connections (to paraphrase).
“If there are other anomalies he may not survive at all.”
“But I’m asking you, Dr. S, what would you do if this were your child?”
“Go to Boston, get the second opinion. Let me know how you make out.”
I felt like I stepped off a carousel after that appointment. I just wanted to throw up. My head spun. My belly hurt. I was so hungry. And so tired of all of this.
And it was in the car after that appointment that I decided to just check out. Detach. Let go.
I researched what I could make sense of.
I couldn’t bear the thoughts in my head so I just slipped into zombie mode.
And lucky for me, the wild boys have a thing for zombies…
I don’t even like plans but all I hear in my mind, like a radio on repeat, is :
“So what is the plan?”
“So what is the plan?”
“So what is the plan?”
“So what is the plan?”
“So what is the plan?”
“There is no plan. We wait until he is born.”
themiracleofmarshall 