Wednesday, August 31, 2011

A Heart that is Much Too Big

You'd think that having a big heart is a good thing, but of course that is figuratively speaking.
A heart that is too big means more love. More joy. More goodness.

It also means more burdens to bear. More weight to carry. More sorrow.

This of course is not what the doctor was referring to when we met with him this morning.
We were told that Finley's heart is much too big. It takes up over half of her tiny chest; it is supposed to be about 1/3 of that area. She is in heart failure.

Finley's heart is working extra hard to pump and she is slowly letting go. Her heart rate, which should be between 130 to 160, is only 101.
We were told that it could be a matter of days, weeks, or months. She might even make it to term. Even still, I should prepare for her "demise".

I was given the option to have an amniocentesis. This would allow for the doctors to know exactly what caused this and the chances of it happening in subsequent pregnancies. We could wait til the autopsy, but then we won't have "living cells" and the diagnosis would not be as accurate.

How am I supposed to decide what I want to do when you just told me that I should expect "fetal demise"?

I have so many questions, but they aren't questions that the doctor wants or expects to be asked. So who am I supposed to ask? Who knows how to get through something like this?

Will the nurses know that I am coming to labor and delivery to give birth to my dead child?
How am I supposed to get through the labor and recovery knowing that I won't be bringing her home?
Who will watch Eli and am I supposed to tell him one day about the sister he never had? Will he understand?
Where do you bury a baby?

If I think too much about it I get lost, so I try not to.

We will have to take it one day at a time. We will have to "wait and see".
We WILL keep praying.

Maybe I should be praying for peace now. I don't know.
I just know she is still alive right now. I hope she isn't suffering - is that possible in the womb?

Please continue to pray for us. The support and love that we have received is evidence of His hand working through this.

Tuesday, August 30, 2011

A Test of Faith

I always knew Finley would be special. I don't know how or why I knew, I just knew.

We've had her name picked out since before Eli was even born. It has always had the perfect ring to it. I've pictured her over the years as being a little firecracker - spunky, stubborn, and strong-willed.

Today at my OB appointment, I was told that Finley probably won't make it. Her heartbeat has become abnormal, a significant change from weeks passed. Taking this into account with the fact that she has fluid around her heart and that it is too big for her little chest, I was told that I should prepare myself for a stillbirth.

How do you prepare for that?
How do you ease your heart when the passing of your child is (statistically) imminent?

I wonder if maybe I should have been better about taking my prenatals or drinking less caffeine... though the rational side of me knows that it wouldn't have changed anything.
I was told that this is not my fault, there is nothing that I have done to cause this and that we will have clearer answers with an amniocentesis and/or an autopsy.

I feel guilty for not getting excited when I saw that the pregnancy test was positive, for not knowing if I was ready for another child, for not bonding with her right away.

I'm sorry I'm rambling.

Tomorrow I go to the specialist again (yes, the same one). We tried to set up an appointment with a different MFM, but for a couple of reasons it didn't work out.
I will have another sonogram, but I honestly don't know what else they will do...
They want to know what is going on so that we have a better idea of what "we are dealing with".

All I have been told so far is that she probably won't make it. She will probably never get to see how amazing her big brother is and Eli will probably never get to snuggle with her like he does with me and Daniel. I won't stay up late watching her breath after we get home from the hospital. I won't see that first smile....

Despite constantly thinking about these moments I will never have with her, I know that if there is any chance for her it is through prayer. We are NOT giving up on her. Even if in this world we would be considered fools for thinking that she has a chance of making it... we have a reason for our hope.

I know that God has a plan for us and for her. Maybe He just thought she was too special to stay here with us. Maybe this is a test of my faith. I don't know. But I DO know that I have faith that His hand is working in all of this, no matter the outcome.

Please keep praying for us and sweet Finley.

(And please excuse my rambling... this is the only way I know how to work through my feelings.)

In the meantime, I will rub my belly and cherish those little kicks that she aims perfectly at my bladder....

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.