Thursday, August 18, 2011

An Update on the new baby

I've been kind of MIA from posting because we have a LOT going on, but here is a small update on our baby girl.
I am 5 months pregnant and last month I was diagnosed with low amniotic fluid.
Yesterday I went in to see a Maternal Fetal Medicine Specialist.

Please bear with me, I am still trying to figure out how to feel/think/respond. This will probably be pretty long.

I went in yesterday at 3:00, filled out a bunch of papers for about 30 minutes on my previous birth and my health history (which they obviously didn't read), and then was called back by the tech.
The tech scanned me for about 45 minutes. I knew SOMETHING was wrong because she kept looking and double checking the same spots. She then left the room to to talk to the doctor. About 10 minutes later they both came back in. The doctor had horrible bedside manner. I realized it while I was there, but couldn't really react to it or call him out on it because of the nature of what he was saying. Afterwards, I was furious that anyone could treat a patient the way he did.

The doctor came in with the tech and they both scanned me together again. They were focused on the heart. They were zooming in and out, doing all kinds of "tests", looking at all different perspectives. The doctor was making little sighs under his breath and muttering things I couldn't hear. I knew he was going to give me bad news.
He then asked if I had any other children and I said, "Yes, an 11 month old boy". He asked if I had any complications with Eli and I said "No". When I said that he said, "Really? Wow!" WHAT IS THAT SUPPOSED TO MEAN!?

He scanned me for a long time without saying anything; occasionally making sounds like "Whew!" or "Huh?" and whispering to the tech. Then he finally addressed me. He told me that my fluid is definitely low, but there are a few other concerns that he has that he "can't believe" no one else saw.
He said that the baby has fluid around her heart, a pericardial effusion. This could be an indicator of heart failure, a heart defect, or it is in association with a genetic disorder (I later researched that it can also resolve on it's own, but he didn't tell me that). He also said the baby has a "bright" (echogenic) bowel. This is usually indicative of a genetic disorder as well (but THIS can also resolve on it's own as I later researched). He also said that it was hard to visualize the stomach. I don't know whether its because the fluid was low so it was hard to see or because he thinks there is an issue with the stomach.
He said "all of these things are concrete and I have seen them".

Then he said that if you take all of these into account together (the pericardial effusion, echogenic bowel, low fluid, and stomach) then my chances of having a baby with a genetic disease are, and I quote, "through the roof". He asked if I had any genetic testing and I told him my quad screen was negative.
The rest was pretty much a blur, but THIS is what he was saying. He thinks that I have a baby with a "lethal" genetic disorder and basically wants me to get an amniocentesis so that we can "prepare". He also wants to do an amnio infusion (they put saline into the amniotic sac to better visualize the fetus on the u/s because low fluid levels cause the u/s to be hard to read). He made it VERY clear that an infusion will not help the baby whatsoever and my fluid levels will go back down after a couple days.
He highly encouraged the amnio and then got an "emergency" call, so he had to leave the room.
As he was walking out I asked him if there was ANY way that I could still have a healthy baby....
He said "Well... the chances are very small and even if all of this means nothing we will have to monitor the baby very closely because it is probably something to do with the placenta. We'd have to find a way to help the baby survive." Nice.

He basically left me crying in the room with the awkward tech.

So, the doctor gave me basically no hope whatsoever. However, when I researched it I still found that there IS a CHANCE all of this could resolve and the low fluids could be a fluke. I just don't know what to think. I'm mad that no one is giving me a realistic view or even a chance at hope.

My feelings on this news are so complicated. Of course I would love my baby no matter what, but part of me would rather have her pass on inside of me than her have a rare genetic disorder that would cause her to have a very rough, sad, painful life. No mother wants to see their baby face hardships. If she DOES have some kind of disorder, you better believe I will give her all of the hope and opportunities to live a full life filled with love that she could ever have.

At this point, I think we are planning to do the amnio. Part of me doesn't want to because I won't be able to change her or do anything. However I do think it would be good to have time to "prepare" ourselves for whatever we are facing, whether it be a disorder not compatible with life or a baby with special needs. I just need to schedule it and get it over with.

We are asking you to pray for us and our little girl.

7 comments:

  1. Kelli, I stumbled across this post from facebook, but I want you to know I'm praying! God can do amazing things. Don't ever give up on hope. Psalm 27:1

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  2. I love you...sent you a text... Sorry it was sooooo long :)

    Love
    Jenn Ellis

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  3. I came across this on Facebook. I'm praying for you and your baby. I'd definitely get another opinion if that's an option. I've seen so many people get told news like this and go to someone else a few weeks later and find the worry was all for nothing. I don't understand why these doctors so often don't realize that what they say is devastating to their patient. I pray that all these things resolve and you have a healthy little girl. *hugs*

    Nenna

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  4. Kelli,

    So sorry to hear this—I'll definitely be praying for you and Daniel and the baby.

    I'd also agree about getting a second opinion if that's possible.

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  5. You are all in my prayers.

    Jenny Gwinn

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  6. God is with you! He will never leave you, nor forsake you and He says this to you and to your daughter. He knows exactly what both of you need and both of you are perfect for one another to supply those needs. Even when we don't understand, we can still trust. I am praying, hoping and believing.

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  7. I Love you and God Loves You! He will take care of you and your family.

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