Yesterday we found out that Kaden is going to be a big brother to a little sister. However, we also found out some not so good news and had to see a specialist today in Topeka. We were told that she has hypoplastic left heart syndrome, her palates are not forming right in her skull, she is missing a vessel cord in her umbilical cord (which doesn't seem to be that big of a problem right now), she has bilateral pleural effusions, they did not see an aortic arch, and she has a complex heart anomaly suggestive of large AVSD. You might be wondering what all this might mean...well, we aren't too sure right now either. The doctor did talk to us, but when you are in shock, it's hard to follow along. We are going to look all of this up and put it into more understandable language later. We have decided to talk to the genetic physicians to see if it is something related to us, with having Kaden and all.
What they did tell us is that she will have a 50/50 chance for survival in the womb, and that mortality is high after birth. She will have to go through several operations. We plan on going to Children's Mercy again. I don't know how it will work out for us though, now that we have Kaden. When it was just Kaden, I was able to stay up there with him 24/7, well now Kaden will be home and I will want to be with him, but at the same time be at the hospital with her. It will be hard but I am sure we will come up with something. Living two hours away, there is no way driving back and forth will work. I jsut can not believe this is happening again. It gets very frustrating and all you can think is what the first baby went through and hope that it will be easier. The way the doctor talked, I don't think it will be. I hope she is as strong as her brother. God has his plan and we can only go by it. One good thing is that we have already gone through this so it is not new territory. We know the nurses in the NICU and feel relieved knowing that they will be taking care of her.
So.....in case any of you were wondering we are naming her....Ava Rae. Please pray for Ava. Thank you so much and I will be more specific in the next blog, I have to get over this feeling of disbelief first.
Do Not Worry
15 years ago
2 comments:
Wow, I can't believe that this is happening!! My heart goes out to you and your family. I will keep you in my daily prayers. I just don't even know what to say. I wish that little comments like "God doesn't give us more than we can handle" were true and helpful but they are not. I guess all I can say is that we will be thinking of you and your family and we will be praying and praying and praying. I will alert people on my blog to also pray.
Also thanks for the encouragement about getting out of the house. It really felt good to get out. I just didn't know if it was making me a bad parent!!
Love and Prayers
Megan
Hey Guys,
Congratulations! It's a girl :-)!
Micah and I read your blog tonight and it broke our hearts to hear about Ava. We were talking and it's like once you go through so many struggles with one child shouldn't god give you a break on your next one? He knows you can handle it because of how great you've been with Kaden so why do you need to continue to have challenges. It seems to be the story of many of our lives in this group is "WHY!" A question we'll never have answered unfortunately. You guys are always in our thoughts and prayers and please keep us updated on how things are going!
Love
Jason, Micah, Gracie, Angel Gabi, and Baby Acker
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