Wednesday, July 18, 2012


The call finally came.  I was in the driveway of the beach house, rushing off to a lady's lunch with the Linda and Mother Hale, Olivia in tow and fussy in the back seat.  The car was literally on and I took the call with the window down and Michael standing right there.

"Good news!  No 22q!!"

I think that poor genetics counselor was as happy as we were!  A boulder was lifted off my shoulders immediately.  It was not the result I expected.  Not at all, but certainly the one we wanted.  Now we only had to focus on his heart and getting him healthy.  No scary genetics issue.  Music to my ears.

Suddenly -- and in the week that's followed since we heard -- things started feeling more manageable.  Sure, there are my moments when I can't sleep and sit on the bed for an hour bawling my eyes out from fear and concern.  But those moments aren't every day and, I'm guessing, are to be expected.

Two weeks to go until our next consult at the hospital.  For all the questions we have shared with the program team, they really haven't been forthcoming at all.  "That's something we'll cover on the 30th."  Seems that we'll cover everything on the 30th!  I remain in the dark on what life will look like for our family in the next year.  Will there be complications?  How long will he be in the ICU?  Will I be working?  Will Little Man be in daycare or at home with me?  How in the world will Olivia adjust and how will we feel like we're balancing the two of them fairly?

There's a lot to understand and so little out there on the internet.  I've found a couple Facebook groups that have been helpful and desperately combed existing blogs to read their posts about the months following similar surgeries.  But there seems to be so few out there who have truncus AND an older sibling AND both parents working AND blahblahblah.  I miss having people to "talk" to online, like I did while weathering the two IVFs.  We're sharing this diagnosis more publicly in a couple weeks, so hopefully folks will come out of the woodwork with "my cousin went through that" and "let me send you my neighbor's email."

In the mean time, I'm waiting (not so patiently) for our consult in 12 days (but who's counting?) and making the plans that I can make.  Yesterday I requested a case manager through Aetna and started the process of requesting statements of medical payments already made this tax year, anticipating the possibility of getting a deduction on our federal taxes.  My conversation with the Aetna person was encouraging yesterday, as she thinks that we will be 100% covered for the birth and surgery because we're already hitting our maximum out of pocket (thank you, oh Mr. IVF).  I guess, if you had the chance to plan it, having an IVF, a c-section, and open heart surgery all in one year is the way to go!  I'm not holding my breath until the new case manager confirms this, but it's a step in the right direction.

Otherwise, putting one foot in front of the other.  Watching my sugars and insulin, worrying a tad about weight gain (more this pregnancy than last), and trying to get the fun stuff done (O's big girl room).  There's lots of calls, doctor's appointments, bills, work balancing, and plain ole' tasks to get through...enough to keep anyone busy.  We can do it, but thank goodness for a flexible employer and weekends!

Onward and upward!

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