She's got it :-( Congenital Heart Defect

Rachel Sonnier

I posted a few weeks ago that our ped was sending us to see a cardio for our new baby girl. Turns out that she does have the heart defect they were concerned about (pulmonary valve stenosis). They want us to go in every week for an echo and EKG from now on. He just said that he wants to watch her very closely and that we will see where it stands when she stops growing so rapidly, and that if at any point it crosses the line from moderate to severe, they will send us to New Orleans for surgery. The cardio is also sending us to see a geneticist, because he suspects that she may have some kind of syndrome that is associated with this particular type of congenital defect when it runs in families. Bummer. :-(

I swear, my 2 kids, who have a combined age of 4 and some change, see more specialists than my husband's 80 year old grandparents. This news is not making my holidays merry and bright. We are praying that the genetic testing comes back clean and that the only thing we have to worry about is the heart defect...and I hope that stays on the moderate end and doesn't get any worse. 

However, she is such a little doll and her big brother just adores her. What more could I ask for right?

typeset

Oh, hon. I'm sorry it's not the news you were hoping for. Keeping a good thought about the genetic testing. Please keep us posted.

realisticdreams

Can it resolve on its own? I think a coworkers baby had this and at 6 months it was fixed for the most part.
Big hugs. Im glad she will be monitored closely.

ToastieSimons

I know your pain. I remember feeling so defeated when learning ds2 was also affected by the same genetic issue as ds1. I'm hoping its *just* a heart defect, not that it isn't a big deal on its own.

GopherBaby13

I'm sorry Im a FTM and my daughter was diagnosed with left aortic stenosis at less than 24 hours old, almost a month ago now. Getting a heart diagnosis is so scary. I'm glad the doctor is keeping a close eye her.

CaptainSerious

Oh, Rachel, I'm so sorry.  Big hugs and lots of love coming your way.  You can always come here to vent or for support; we totally understand the way you can be both, mourning for your child's health and over the moon in love at the same time.  There is no contradiction there.

macchiatto

I'm so sorry!

mommy0411

I'm so sorry! Sending you big hugs!

Rachel Sonnier

Thank you for the support and well wishes! Its so nice to have a place like this to come, where people understand. We go back for the second echo on Thursday, so I will keep you guys posted. 

Assembly_Reqd

hugs.

Good Luck on Thursday. I hope you get some positive news!

babylimas

I'm sorry. We were diagnosed with tetralogy of fallot in our unborn son, which includes pulmonary valve stenosis. I hope your second echo goes smoothly.