I have a heart baby.

It is probably something lots of people don’t know about me and my family.  It isn’t something that we broadcast or that defines us or him.  Watching Avery you would never know about all that he has been through.  He was born with a congenital heart defect called Tetrology of Fallot with Pulmonary Atresia.  It was something that wasn’t diagnosed before birth so it was a huge shock to us.  Here is the story of how we found out.

Our first son, Blake, was born early at 36.5 weeks.  Because of this things were watched closely with our second pregnancy.  At 32 weeks I was already dilated to 1 cm and was put on bedrest.  For 6 weeks I laid on the couch and took it easy (which isn’t easy with an almost 2 year old running around).  I was scheduled for induction at 39 weeks so that my doctor would be there to deliver.  Labor progressed normally and Avery was born on November 28, 2005 weighing in at 8 lbs 1.5 oz.  Everything looked great but he was looking a little blue when he tried to eat so the nurses took him down to the nursery for a little oxygen.  This wasn’t alarming as the same thing had happened with our firstborn.  We expected him to be back in a couple hours but every time they got him up to 100% oxygen saturations and took him out of the oxygen bubble his saturations would dip down again.  They left him in the nursery overnight.  The next morning while our pediatrician, Dr. Lon Knudson, made his rounds he decided that it was probably best to send him to a hospital more equipped to deal with any problems that might be going on, although he wasn’t exactly sure there was a problem.

We made the decision to ship him to Children’s Hospital in Minneapolis.  Word was that the ambulance was coming to get him but they decided to send the helicopter.  While we waited for the team from Children’s to arrive we made arrangements for myself to be discharged and called family to arrange care for Blake.  When the team arrived the neonatal nurse came to talk to us.  She told us that there ‘might’ be something going on with his heart but that they would figure it all out when he got to Children’s.  They wheeled our baby off in the little incubator up to the landing pad.  As we waited at the elevator to go down to our car we watched the helicopter take off with our precious cargo.  That is the most heartbreaking moment in my life…I can barely hold back the tears now as I write this.

We drove home to get a few things before we made our way to the hospital.  Let me just say that was the longest hour and a half ever!  Not knowing what is going on with Avery, wondering if they got there safely, hoping our baby is okay.  When we got up to the NICU we were escorted to his area.  He didn’t have his own room then and the doctors had done their job to figure out what was going on.  We were introduced to his doctor but not told he was a cardiologist.  This whole time is really a blur and I’m not sure what we expected.  As we walked into this tiny consultation room with a couch for us and a chair for the doctor the doctor said ‘There’s a heart problem, you know that right?’.  After that I don’t think Mike and I heard much of anything.  We had no clue that there was a heart problem.  I vaguely remember the doctor explaining what was wrong with his heart and him drawing us a picture on the little pad with the picture of an anotomical heart on it.  He explained that his pulmonary arteries were not fully developed and that there was a hole in his tiny little heart.  At that point they were unsure as to which kind of hole (as if we knew there were different types) he had.  They would have to run more tests and those tests would determine if he would need surgery immediately or not.

This is where we began our journey with a heart baby (as they call them in the hospital).  It has been a journey that we will never forget.  Stay tuned and I’ll share more of our journey with you.




3 thoughts on “I have a heart baby.

  1. Oh Misty I can’t imagine having to part with my baby, EVER, but to be in a Helicopter and not know what was going on??? I don’t know how you did it – I get teary reading your story.

  2. Pingback: CHD Awareness « Miss Multitasker

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