My head is hurting. My eyes are bloodshot and hurting. But more than anything else, my heart is heavy and hurting and we are asking once again that you keep our family in your prayers.
We got some pretty bad news at the doctor yesterday. At a routine sonogram, it was discovered that our sweet little girl has a congenital heart defect. It's hard to write those words and I'm still trying to process exactly what this means for us.
The most devastating part for me is not how it directly effects me right now or in the near future. The hardest part for both Dustin and myself is how we will certainly watch our sweet baby suffer and struggle for her life. I just can't stand the thought.
The exact condition she has is called Hypoplastic Right Ventricle (or Hypoplastic Right Heart). It means that the lower right chamber of the heart is very underdeveloped...almost not even there in her case. Our doctor said that normally, when you see an underdeveloped part of the heart, it is usually on the left side. I believe the statistics on that are just 1 in 5,000 babies. For the right side to be underdeveloped is even more rare.
The very best case scenario is this:
* We monitor the baby's heart very closely. The more information they can gather before she is born, the more prepared they will be to take care of her when she arrives. Lord willing, everything else in the pregnancy goes well and we deliver under very controlled circumstances with every doctor and specialist we need in place, waiting to take very good care of our little girl.
* The baby will immediately be put on medicine to keep a part of her heart open that naturally closes after birth. As long as this is working, we can allow the baby to stabilize and get just a little bigger and stronger.
* Within the first week of her life (from what I understand), she will have the first of three open heart surgeries to help correct this problem. The second will take place between 3-6 months and the third is done several years later.
* Our sweet girl lives a normal, healthy life (normal only to the extent that her parents aren't completely crazy and overprotective).
There are so many other scenarios that are much, much worse than this, but we aren't going to focus on that unless the time comes when have to.
What this immediately means for us is that I am once again considered a very high-risk pregnancy. I'll be monitored every week and they will watch the baby's heart very closely. We will prepare for an earlier than ideal birth with steroid shots.We will also be making some very difficult decisions and we pray for wisdom as we face these things.
The very best place for this baby to have these surgeries is at Texas Children's Hospital in Houston...nine hours away from here. Because of the risks involved in transporting the baby after birth, it has been recommended that if we decide to go with pediatric cardiologists down there, that I go ahead and deliver there as well. This will mean a lot of time away from Dustin and my sweet boys.
To be completely honest...I'm not handling it all very well. I'm really just crushed. My dreams of a normal and healthy pregnancy are crushed. The picture in my head of delivering my baby and getting to hold her in my arms right away is crushed. The hope of never having to walk into a NICU again is gone. All my visions of Eli and Landon showering their new "sister baby" with love and kisses just can't be. I feel defeated and scared.
But I know that God's love is all around me. I know there are friends and family who are going to help us through this. I know I have a husband who is ready to fight this battle right by my side. It's just going to be a really long road and I pray for strength as we start down it and adjust to our new "normal."
Thank you for your interest in our family. We received so much love and support when we were facing tough times with Eli and Landon. You all have been such a blessing to us. Eli and Landon's health is a constant reminder of the power of prayer. The way God worked in our lives that year was so evident, it was almost tangible. I have faith that God has big plans for this sweet girl inside of me. We'll do the best we can to take care of her and just pray that His will be done. He will certainly see us through this.