why i canceled my heart appointment.

Yesterday, March 14th was my follow-up pediatric cardiology appointment at Children’s Hospital.  It was a date we had scheduled upon leaving our initial appointment with them more than six weeks ago.  It’s often easier to see certain parts of the heart anatomy as the baby gets bigger, and the cardiologist wanted to make sure that everything still looked the same.  Same thing as we’re used to by now with Gabriel — things aren’t going to look any better, medically-speaking, but they could look worse.

 

So at 1 o’clock yesterday afternoon, instead of sitting in the waiting room for my appointment, I was sitting in the parking lot at Chick-fil-a.  We didn’t go.

 

One week ago I called to canceled the appointment.  The woman who does the scheduling was confused and asked me to hold while she got someone else.  The nurse who got on the phone asked if I wanted to reschedule.  I told her no.  Then I simply told her that our baby has a fatal genetic syndrome and we had decided not to come to the follow-up appointment.  As quickly as I’d finished that sentence she’d said “Ok” and hung up the phone.  Maybe she was really busy…  but I doubt that was the reason.  It doesn’t matter.  We’re learning through this that it’s up to us.  It’s all up to us.

 

People have been really surprised at the options or choices we have.  How much/how little care we want.  Birth choices… up to us.  Gabriel’s care choices… up to us.  Seeing specialists… up to us.  I think it’s because we have great doctors.  Fabulous OBs taking care of us who allow us, actually encourage us, to make these decisions.

 

So Tommy and I scheduled the follow-up appointment with the pediatric cardiologist back in January.  At that time I really wasn’t sure that we would make it to March.  I was doubtful that we would still be able to look at Gabriel’s heart in March.  But as the weeks went on, and I’ve been encouraged and increasingly hopeful in the Lord, I knew we’d get to see this appointment.  We thought about it off and on, and as the date of it approached sat down to talk about it.  We found we were both on the same page — not to go.  We’re at peace with Gabriel’s sydnrome.  Do I like it?  No.  But it’s not going to change by going to another appointment.  I needed that first appointment with the cardiologist.  Needed to know how bad his heart was and if it would keep him from having a fighting chance at life.  But during that appointment my heart changed.  I realized the uncertainty of what we’re dealing with and no doctor, no specialist, no surgeon could fix our Gabriel.

 

So yesterday, instead of spending my entire afternoon laying on a table and talking to a doctor we’ve met once, I spent my afternoon eating lunch with my sweet Jack and some sweet friends.  Then I laid on the couch, enjoyed Gabriel’s movements, and took a nap.  And Tommy worked so that he could spend his days off with Gabriel once he arrives, rather than at an appointment before-hand.  Just what my heart needed.  And I’m going to guess, Gabriel’s, too.  For the work of the Lord is far greater than what any cardiologist could do for my baby.

 

 

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One thought on “why i canceled my heart appointment.

  1. Good for you… We have a very different situation but one that involves a medically fragile child. At one point when my son was very very sick, and all the doctors had nothing positive to say, I literally went on strike. I avoided our doctors at Vanderbilt Children’s and left the room during rounds… I asked our nurses to only tell me the positives and to sugar coat everything. Sometimes, when things are too bad and too much, all you can do is be there and love on your baby. Talking and testing doesn’t help.

    Anyways, I admire your strength in this decision, and as a Mama who has sat through way too many heart exams and echos with my baby boy, I admire you even more. You are a wonderful mama to sweet Gabriel…

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