M and I are expecting our fifth child. This summer, when the ultrasound to check for various health problems with the baby was taken, the technician couldn’t see her heart very well. Another five ultrasounds were taken over the next couple months.
We found out last Friday that our daughter has a heart defect. From what the doctor said during the appointment, it could be either coarctation or an interrupted aortic arch.
Let me point out that while both diagnoses call for invasive surgery, they also have a 90-98% survivability rate. We’re grateful to live in a day and age where these things are detectable– thank God for science, in other words. We’re also grateful to know now rather than having it thrust on us shortly after birth. Forewarned is forearmed, they say.
An amniocentesis was performed on M while she was at the doctor’s office on Friday; the results of that test showed that the baby doesn’t have Down’s syndrome, or other extra-chomosomal abnormalities; but they still haven’t ruled out things like DiGeorges. More waiting.
We’re obviously pretty worried. Inkling was in the NICU for a week and a half with pulmonary stress after his birth, and while I’m grateful for the outstanding doctors and nurses that brought him back to health, the NICU is one of the scariest places on the planet. Yes, it’s safe; but it’s also very scary to face your impotence and inability so baldly. From a certain point of view, I created this little being; I’m planning on taking care of it, imparting myself along with my genes to it; to have it thrust into my face that no, there’s nothing I can do to stop it from hurting is…not a pleasant thing, for me. It’s not like having them break a leg, or face bullies, or normal childhood problems. The NICU represents the OTHER, in a way.
Like I said, I’m grateful for it, but it scares the beejebus out of me.
Some other worries– recovery time from the surgeries is anywhere from a few weeks to a few months. Because of the delicacy of the operations, she’ll have to stay in UVa’s hospital, in Charlottesville, VA, which is about an hour and a half from our house. The good news is that the pediatric cardio wing there is one of the best on the East Coast, apparently; the bad news is that it’s far away from home. And there’s the other big concern– medical bills.
I mentioned we’re grateful to know now about this. Unlike other families who face the same problems, we’ve been blessed with foreknowledge. We have a little bit of time to construct buffers for ourselves and our family. We’ve committed to watching our finances and saving for the operation. I’ve got a great day job with health insurance.
It’s scary, but we can do this. We’re hopeful, right now; this weekend was difficult to get through, but as we’ve informed ourselves about what the situation is, or what it might entail, we’ve become acclimated to what it’s going to require of us.
Thus, the new category for this blog– like Jay Lake did for his cancer, I’m planning to do for our daughter’s pre-arrival, arrival, and post-arrival.
Her name is Tiptoe.