Sunday, May 27, 2012

An update: what it's like having a child with congenital defects

On the right hand side of my blog, it displays popular posts.  The "what it's like to have a child with congenital heart defects" is the most popular one.  I noticed it this morning, and thought I should update it.  Surgery was hard, as were the times leading up to it.  However, repairing the VSD did not make all right in the world.  There are still worries and concerns that David and I face.  Right now the most common one is developmental delays.  Presently, it's putting weight on her feet.  She has finally started putting some weight on her feet, with legs straight but up until last week she absolutely refused to do it.  A few months ago, it was her low weight and the fact that she didn't sit up.  These delays always seem to hit that point where it's like "ok, if she doesn't start doing this in the next month, we're going to have to get her outside help."  Although the consensus is that it is a result of having the defects and heart surgery at such a young age, I still worry about these delays.  I don't know if I'm more aware because of her past, which causes me to worry before I should.  However, I don't want to be the parent that refuses to believe that something is wrong, and thus put off correcting the delay for a long time.  I talked about it with a girlfriend last weekend and cried.  It's hard.  For me, it is a reminder of how surgery was not the end of it.

So we're working with her, always.  I feel like, from a realistic point of view, that she's months behind.  I am reminded of how she acted like a newborn right after surgery.  And I worry.  But then she does something like this, something like is displayed in these photos.  And I'm reminded that she's a happy, healthy baby.  She loves to eat, and gets into eating more than Hannah ever did.  She tries shoving food in her mouth by the fistful, both of them at the same time!  She loves attention and is not overwhelmed by being overcrowded.  I think that last one has something to do with the fact that Hannah is always THISCLOSE to her face, normally shrieking.  She kicks her legs all the time.  No really, all the time; when I'm holding her, when she's in her high chair, laying in her crib.  So for now, we'll work through the minor stuff as it comes.  And remind myself, that over the course of the next few years, any delays should balance out.  

1 comment:

Jennifer said...

Hey, I know it's hard dealing with a child with special health needs. It can be hard sometimes and there are lots of ups and downs. Remember to keep praying and enjoy the precious blessing you have. You and David are just the parents she needed to get through this!
(pics from Jhet's hospital stay