Yesterday Nate and I had another doctors appt. in Topeka. It was pretty long, but it went well. We talked to genetics and honestly didn't learn much. They want to draw more blood from Kaden to look into more options. So far they haven't found anything with him to say that it is genetic. When I was pregnant with him they did an amniocentesis and it came back that Kaden's chromosomes are normal. We went ahead and decided with Ava that we would do the same thing. The main reason we did one with her is because if she happens to have a defect that is basically fatal we would not want to put her through all the surgeries. That may sound harsh, and I think if you haven't been in a similar situation it may be hard to understand for some. The sonotech did say that the fluid around her lungs looks better and we talked to the pediactric cardiologist. He honestly made me feel better about the whole situation. If there is nothing else "wrong" with Ava, it seems she has pretty good odds. He explained that she would have to go through the first surgery shortly after birth and hopefully only be in the hospital for 3-4 weeks. She then would do the second surgery at about 6months and then again at about 3 years. They would have to keep a close eye on her, possibly having appts every week or so. I feel less anxious about the whole ordeal now that we have been more informed about it all. Now we just have to wait for the results from the amnio. I do feel that all of the prayers have been helping.
We got more sonogram pictures. I really think that she is smiling in one. I will try to post it soon. It was really cute, because yet again she moved the entire time during the sonogram. She also had the hiccups during half of the time. I didn't realize that babies could have the hiccups in-utero. I thought it was such a neat experience to see that. Oh, I almost forgot about Kaden's experience really getting to feel his sister move. It was before he was going to bed and she was dancing away so I put his hand on my belly. She moved and he just looked at me with wide eyes. I told him that his baby sister kicked him and he started smiling. He then placed his hand on my belly again (by himself) and she kicked him again. He started smiling again. He then grabbed his toothbrush and began using it on my belly. He told me (using sign) that he was brushing the baby's teeth. What a great big brother!!! Well, we are at my parents house right now and Kaden is saying he wants to go home and go to sleep. We thank you all for the continuous prayers!!!
Do Not Worry
15 years ago
1 comment:
You don't know me, but we both know Megan & Matt. I've been reading your blog and, though my daughter was born with a brain defect (called Dandy-Walker) & has had global delays, I don't pretend to know what you are going through. I want to share, though, that I've read many posts in my Dandy-Walker group that tell how doctors diagnosed severe Dandy-Walker in utero, but when the baby was born, no defect existed or the defect was MUCH less than predicted. I don't want to knock the doctors (I've had my share of experience with them--mostly good), but keep in mind...they are human and can make mistakes. I will pray for you and your family, prayers that this is, indeed, a mistake...or at least an exaggerated diagnosis.
--Angela
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