Thursday, December 29, 2011

Alliteration Appointment

So delivery is scheduled for the ninth at noon. I was sitting there at my doctor's desk while he was on the phone with the hospital and he puts his hand over the mouthpiece and says "How about the ninth at noon?"

First I want to explain that at all of these many appointments it has been all I can do to only be halfway there. While doctors have been describing horrible procedueres or outcomes or facts, my husband listens intently and asks questions and I just nod but find myself staring out the window at a pair of hawks chasing each other through the city. Or as a doctor is talking to me I start wondering what type of eye shadow she has because I really like the color but she has much lighter skin so would it look as good on me?

It's either that or I have to pinch my arm to keep from crying. I switch back and forth. I have the bruises on my arm to prove it.

Anyway. Back to the story, my doctor covers the mouth piece and says, "the ninth at noon?"

The thoughts that go through my head are as follows:
- I like the way the n's sound together. 'N'inth at 'N'oon.
-My cell phone minutes roll over on the ninth which is kind of irrelevant because I ignore most phone calls these days.
-Doesn't it feel strange to be scheduling the death of your child? The ninth at noon? Sounds good. Let me just pencil it in my calendar.

Anyway. That's the plan unless Gracie Belle has her own plan.

We did have a good Christmas. The boys were so much fun. And we had our own little Christmas miracle for Gracie.

We (and when I say we, I mean my mom), has been tirelessly going to cemetaries to find a place for little Belles. No matter what day she went it always rained. Appropriately I guess. All of the cemeteries were too big, or too expensive, or on a busy busy road, or just wrong. And then we found this little cemetary close to us. It's really old and a little overgrown but on a hill on a quiet country road and it feels just like a cemetary should feel.

My mom inquired about it and the owner said the cemetary was full and he apologized but there was nothing to do about it.

He clearly didn't know my mom. She hand wrote him a letter explaining the situation and I kid you not said, "She is just a little thing, we promise she will be no trouble at all." Wasn't there a tiny little spot we could fit her in?

On Christmas Eve he called and said they found a little place for her with this really old family (1800's) who had five infants that died at birth and they could put her with them.

I know this might sound morbid but it truly was our Christmas miracle to have the peace that she would have a place to lay and not only that but she would have five little friends to be with.

My dad is building her a little coffin with her name engraved on it and beneath it is the phrase, "Sleep in Heavenly Peace". For Kendall and I "Silent Night" has kind of become her song and though we can't really sing it right now without tears it brings us peace and is more like a lullaby than anything.

The coffin is lined with the softest softest material and we are going to fill the bottom with pink rose heads so she can lay on a bed of roses.

I think we will have a little funeral at our church before, but the burial is probably just going to be immediate family.

Another interesting thing about the cemetary is you have the option to dig the grave yourself.
Kendall wants to. And while I thought it was odd at first, it is more meaningful now to be able to prepare a little place for her with his own hands and heart.

Thanks to everyone for prayers and kind notes and thoughts. Everyone has hard things and I appreciate those who take the time to think of us while we are going through one of ours.

Thursday, December 15, 2011

Heart Follow Up

Well we had the appointment with the other cardiac doctor and at this point things aren't good. She has developed hypoplastic or hyperplastic (I can't remember which way it is), left heart syndrome. (at least I think this is what the doctor said though honestly, it was pretty much a blur of words)

That is something that even in the healthiest of healthy kids with no other problems but that, people often still opt for comfort care (hospice), because the survival is just so low.

That being said, we are obviously heartbroken. I mean, it isn't anything new or something we weren't expecting, but it is somehow still shocking. It just feels heavier. More final.

She still might not even make it to term but if she does we should be delivering somewhere between Jan 5-9 at which point, we will just spend whatever time we have loving her and then give her back to her Father.

There is a certain amount of peace having some of the uncertainty wiped away but it isn't much of a consolation. It was liberating to cancel appointments with other doctors though. Maybe now we can enjoy the holidays a little more and just appreciate the time with her inside and the little time we have with her outside.

I'm sure I'll post again with more thoughts and things but I just wanted to let those who have cared and prayed and worried with us know.

Sunday, December 11, 2011

Santa's Beard of Doom

December is flying by isn't it? My boys have a Santa face minus the beard and each day that glue on a cotton ball so by Christmas he will have a beard. They love it.

As each day passes and we glue on cotton balls or rip links off our paper chain or turn our countdown blocks (yes we like counting down apparently) I am feeling more and more apprehensive because Christmas ending means Gracie coming and the end of the pregnancy and we all know what that means.

In some ways it will be a relief to be done, in others it is terrifying to think of.

Surprisingly and unsurprisingly we still have lots of doctor's appointments. This week we are actually getting a second cardiac opinion which I think will really (and hopefully) help us feel settled. The first cardiologist says it's open heart surgery or nothing which we know we don't want to do.

This other cardiologist says he isn't sure it needs to be open heart and we could possibly do a balloon procedure. (which is just up through the thigh). We will have a fetal echo just to see the heart. We've filled our deductible for this year so I guess I am just like what they hay? Bring on the "free" expensive procedures.

We are really just feeling our way through the dark. We are kind of an anomaly in that there are no other cases of live Trisomy 9 births to date other than the 80's. (which in medical world is like a million years ago). So any decisions we make or things we do are guesses at best. All of the doctors shrug their shoulders and scratch their heads.

It's all very reassuring.

Hope for the best. Plan for the worst. I guess that's where we are. What else is there to do?