July 07, 2014

Open Heart Surgery

   Today Sadie will be getting her sweet, little heart fixed.  They will be closing up the hole (ASD) and also repairing her mitral valve.

   What a roller coaster ride this heart has been.   3 yrs ago in July ( a little ironic I think) I went in for a fetal ultrasound with a specialist.   I knew that my baby was small, but I really didn't think much of it.  I am a petite person and so is my mom, I figured she was going to be taking after my side of the family.  I left that US in tears.  Not only was I having a small baby, but my baby had a hole in her heart and a 2 vessel umbilical cord.  My husband and I were in shock. We had to completely typical developing pregnancy.  Why was this one going to be any different?  We left that appt devastated.  They told us at that point they were not sure how big the hole was, but it was very large and in a difficult spot.  We had no idea what that meant.
   As the next months went by and we had more US and a fetal echo of her heart done.  The Dr's changed their story many of times.  First they said they were not sure if she "would make it to her birthday". Then they changed it to "she will be born alive, but she will need surgery within hours of birth.  Again devastated!  After she was born they did an echo right away and said "we were completely wrong. The hole is very big, but it's in a stable place and her body is handling it. It won't need to get fixed any time soon".  Huge sigh of relief!  How, they were that wrong, I have no idea, but I wasn't questioning anything.
  At her next couple of cardiology appt's the Dr said that the hole was on the larger side and would never close on it's own like some holes do, but as long as her body was handling it (she wasn't turning blue, heart rate never dropped) then it wouldn't need to get fixed until she was like 7-9 YEARS old.  Even bigger sigh of relief.  How we went from possibly not surviving child birth, to not having it fixed for years from now was amazing to me.  We jumped off the roller coaster.
  However, this is Sadie we are talking about.  The ride was not over.  We went to her 18 mo cardiology appt and he said that it still looked good and stable, but he wants to have it fixed sooner rather then later.  Didn't really give me a good explanation on why the sudden change.  Ok. Lets jump back on the roller coaster.
   Next we saw the cardiothorasic surgeon.  He says yes, he agrees, in her case the sooner the better.  However, he wants all her genetic testing back and real answers about her health before he will do it.  He wanted to make sure it was going to benefit her life.  At that point the risks out weighed the benefits and he wasn't sure she would be strong enough to come off of the vent.  "No, no surgery right now".  Jumped off the ride.
   6 months later we get the genetic testing back.  Game changer!  Dr's see her completely differently now.  She has Cornelia de Lange syndrome and pontine tegmental cap dysplasia, "she can live a long time".  Yes, lets fix that heart now!  Back on that damn roller coaster.
   So here I am, the morning of her big surgery, not able to sleep.  Please keep Sadie in your thoughts and prayers.  She is a strong little girl.  She has come a long way.  The surgery itself is scary, but I'm more worried about the recovery.  I will keep you all updated on the ups and downs.  Please pray for her.

My happy baby girl last night before she went to bed.  Last picture without a scar on her chest.

1 comment:

  1. We are praying for Sadie Jo!! She is one tough cookie and will do fine in God's hands. Big hugs and lots of love to you all!!!