What's up ahead....

 As we look up ahead at what is to come, I have mixed emotions.  As any pregnant mom, I'm excited to meet our little one, but at the same time I am fearful.  Right now our daughter is safe.  Her heart doesn't have to work as hard while in utero.  The placenta and umbilical cord are her life line right now.  It is difficult feeling her move and knowing she is growing stronger each day inside me, just as our other two kiddos did, but also knowing that she only has half of a working heart.  As each day passes, I know that we are that much closer to the inevitable.  Knowing that our daughter has to have medicine (prostaglandins) right after birth to keep her ductus arteriousis open.  Although you want this to close in a heart healthy baby, in a child with HLHS, it can be fatal if it closes.  Because the left side of her heart is unable to pump blood to the body, this duct is the only way for the rest of her body to receive any blood.  Unfortunately it just buys as a little time to get her lungs stronger and hopefully her a little more stable while they prepare for her Norwood.  Generally within 4-10 days of birth, sooner if needed, our daughter will have her first of at least 3 open heart surgeries.  The Norwood is the most complex and highest risk of the 3 surgeries she will have to endure.  Survival rates are around 70-75% percent for the Norwood.  Not the best, but much better than close to 20 years ago when they were just coming out with these surgeries and survival rate was 15% or less.  After the Norwood, the survival rate goes up to close to 90% for the Hemi-Fontan and the Fontan.  Of course we are preparing ourselves for the many obstacles and complications that we are sure to come, but we are holding out hope that our little girl will be strong and able to make it through each of her surgeries and recoveries with flying colors.  She has so many people rooting for her.  Until my next post, here is a link that explains HLHS and the 3 stage surgeries better than I can do.  Hopefully the link works, I'm still new to all this.  Until next time.....

http://www.chop.edu/service/cardiac-center/heart-conditions/hypoplastic-left-heart-syndrome-hlhs.html