Wednesday, June 22, 2011

Lonely

So if you are a mom reading this who is about to face a simlar or same situation, let me give you some words of advice. Haha, that is pretty much what this blog is about anyway.
So when you are here you will meet alot of great familes. You feel like you end up bonding with them almost more than your own close friends and family. This I feel is because they know the pain you are going through. The thing to remember is that you may make friends that will last a life time, but some you will never hear from again. And if you are in a sitiuation like ours, you will be there longer than any of them. You will see many familes come and go. Sometimes it is best not to get that close. It only makes it harder when they leave and you are still there, alone!

Monday, June 20, 2011

Sorry for the over due update!

So let me start by saying it has been too long! Grace ended up about 5 weeks ago having a decline. She keep dropping. We decided to move foward with the surgery. Grace came out a whole new baby! It was definately the best descion we could have made. We even for a little while we attemping to wen off of the IV drips and switch her to oral medications in the hope of maybe being able to wait from home. After three weeks of trying this, we relized this was not going to work. She kept throwing up and could keep anything down. We ending up going back on a drug called Milirone that helps her with her function, unfortanely her heart is just to damaged to be able to wait from home. She has had her up and down's since. She is still not up to full feeds. For a baby it is alot of work to eat and digest, and her heart is just not strong enough to eat full feeds and digest. We have since switched to continous feeds, and will stay this way till we get a heart. For the most part we started doing well again till about last Sunday, we had another morning full of de stats.
Grace's body is slowly starting to shut down, we just have to hope it stays in a slow process. They say the stomach is the first thing to give out then the Kidneys. After you get a heart they say they should kick back in if to much damage is not caused.
We are in a waiting game right know, and pray for a heart every day! Now we also pray for everything to stay in slow of a decline as posible!!