We were very thrilled to find out we were pregnant with our 4th child.  They did the first trimester screen and the results came back that something might be wrong.  So at that point they decided to do another test called a CVS to check to see if the baby had any chromosome isssues.  We were very thankful at that point to find out that everything was normal and that we were having a baby girl!!!  We thought everything was good until they did our 20 week ultrasound and noticed something "wasn’t quite right with her heart".  They then sent us to a pediatric cardiologist to have them take a look at her heart with ultrasound.  At this point they told us that our baby had a serious heart condition called critical aortic stenosis and they suggested to us that we go to Boston MA to have fetal intervention done on the baby.  They said if we didn’t do this, our baby probably wouldn’t make it until birth or if she did, she probably wouldn’t live to see the age of 1 because she would have HLHS.  We decided we were going to do everything we could for our baby girl and give her the best chance of life possible.  We didn’t know how we were going to do this.  

We, like a lot of people, dont just have money sitting around for things like this.  The social worker in Boston put us in touch with the Fetal Hope Foundation and they helped us by paying for me and my husband to fly out to Boston to have this done and paid for the flight to get us home.  We went out there when I was 27 weeks pregnant and it was a success.  We really thought we were out of trouble after we got back until a few weeks later when they told us that the left side of her heart was not growing like they had hoped.  They then suggested we go to Boston to deliver her "just in case she needed something done right away after birth".  

Once again we were stuck and didn’t know what to do.  We again contacted the Fetal Hope Foundation for help knowing they may not be able to do anything considering all the help we received from them in the past.  They did let us know that they would pay for my plane ticket to Boston.  At that point that is all we cared about.  I was ready to go out there by myself just for the life of my baby.  It did work out that my husband was able to go with me.  

We went to Boston on 12-07-10 to wait for our daughter to come.  When we got there, we went through all the appts and just waited for me to go into labor or until 12-28-10 when they planned on doing a C-section.  It just so happened Zoie didn’t want to wait that long to arrive so we went into the hospital on 12-23 because I was in labor and they did the C-section that day.  

Zoie was beautiful.....you would never know anything was wrong with her.  They told us that they were going to try balloon dilation on her aortic valve when she was a day old.  When they did this, she was doing great for about 24 hours after and then the next morning we came to see our baby and she had a breathing tube in and they told us that she crashed in the middle of the night and her lung had collapsed.  They then decided after doing an echo that they needed to do open heart surgery.  They did the Ross procedure on her on 12-30-10.  She did wonderful after that.  The only thing we had to deal with was feeding issues which they did tell us was the hardest part to overcome.  

It was very hard to send our daughter off to surgery knowing they were going to stop her heart and put her on life support and then hope that her heart with start again on its own was the hardest thing a parent can ever go through.  As I said though, she did great and we just had the issue of feeding.  It did take a while and for a few days we actually had talked about taking our baby home with a feeding tube.  

Thank god we got to go home on 01-28-11 without any tubes or monitors or anything hooked up to her.  We were so blessed!!!!!

She is doing well to this day.  We are still dealing with weight gain issues but hope that once they get her reflux under control that will correct things.  

They say the left side of her heart is almost back to normal size now!!!!  I really don’t know what we would have done had it not been for the help we received from everyone.  If we would have not been able to get the fetal intervention done, our baby may not be with us today so for that I owe everyone my life.  We are so thankful for ALL the help we received from everyone.