It’s officially September. Until last month, we could not wait for September. I even toyed with the idea of abolishing August so that we could get to September sooner. But then everybody objected because of birthdays and back-to-school for their kids and strange obsessions with the hottest month of the year…so I let August stay. Big mistake. Huge.
Since Monday’s post, I’ve had a meeting with the psychologist (Tuesday) and ultrasound/OB/lactation consult (today). Overall, things went well.
The psychologist asked if I was having problems with my appetite, concentration, and sleeping. She asked if I was tired most of the time, to which I replied, “Well, yes, but I’m 8 1/2 months pregnant…so I think that’s pretty normal.” Still, she thinks that I am experiencing adjustment anxiety (seems about right) and the beginning stages of depression. She’s concerned that I am also at an elevated risk for postpartum depression. It all makes sense.
Today we went in for our bi-weekly appointments: Ultrasound and midwife checkup. Then we also had a lactation consultation and meeting with Dr. B, apparently just to say hello (?).
Good news alert: The amniotic fluid is still elevated, but less so! We might get another two weeks.
I was able to obtain a copy of the five-page summary Dr. B at CHOP sent to Dr. S at UVA. It was pretty detailed.
We’ve been warned that as parents of a baby with CDH, we’re in for quite a ride. The odd thing about hearing that is that it is almost comforting…I’d rather have a lot of ups and downs that lead to something good than one massive drop. And it’s easy to get really carried away with finding other blogs about CDH babies who have similar (or even worse) cases of CDH and see that they’ve made it, then assume that Benjamin will too. But that’s one of the many “things” about CDH: there’s no way to know what’s going to happen. There are mild cases of CDH where things don’t go well at all for a variety of reasons. I’ve read prognosis figures ranging from 40-80%.
However, it’s impossible to brace yourself for reading a report that puts a percentage on your baby’s chance of survival…and having that number be ANYTHING less than 100%. And then to read phrases like, “This is certainly a complex case of CDH,” and, “This prognosis is dependent upon the results of the amniocentesis, which may drastically reduce the chance of survival.”
His prognosis, specific to his perceived situation, is 65%.
That’s assuming the amniocentesis results are perfect. And while my first thought was (and probably others’ as well), “That’s not TERRIBLE,” it’s still so much less than than I can be at peace with.
Ben’s chance of developing a congenital diaphragmatic hernia was 0.04%. The chance of developing a right-sided CDH is 0.004%. But it happened anyway.
Call me crazy, but statistics aren’t exactly comforting these days.
But then we have to go back to the idea that there are very few facts when it comes to CDH, and babies who are very sick surprise doctors every single day. So there’s a balance between anxiety and hope that comes with not knowing what’s going to happen.
So I guess the roller coaster ride has already begun.
PS – Yesterday, I was this close —–> | | <—– to heading to L&D due to some crazy, regular, somewhat painful contractions. Fortunately, they went away after a while and Ben is still in utero. Phew.