Tuesday, September 20, 2011

Update... Sort of...

Went for another ultrasound yesterday. AND.......

"we'll see you in two weeks and we'll see what's happening then".

The doctors pretty much have no idea what to expect other than that this shouldn't be happening. Trisomy 9 babies should miscarry by ten weeks. And yet... here I am.

She is still in there kicking around though, she is measuring about 3 weeks behind as far as her size. Which isn't great and could mean she will be born tiny or could mean she is beginning to stop developing or could mean nothing and she will pick up growth next week. She is 11 oz. Like a medium sized steak. (steak is also the food I have craved the most this pregnancy)

I have felt unsure how much to post on this blog not sure if I should put my heart out there but I think it would be good, and I think I would like to remember, and I think I would like to be able to be real. Maybe someone somewhere will go through something similar and it might help them.

What do I feel most of the time? Nothing consistent. I feel flickers of hope. Then I feel hopeless. A lot of the time I am so ANGRY I can't see straight.

I find myself resenting every pregnant woman on the face of the planet. Why should they get to have a healthy pregnancy and I don't? Why do they get to anticipate a normal delivery and happiness and I face the uncertainty, and pain, and possibly the death of a child?

I lose myself in fiction every night. I put the baby down (sometimes insanely early), set the older boys up with video games or Legos and go to my room. I've watched the seasons of Gilmore Girls and am currently working on Castle. (and I think in another life I would have been an AWESOME detective).

I read book after book and peruse stranger's blogs about their normals lives and how they went to the fair or the first day of preschool or whatever. It doesn't matter. As long as I am not thinking about my life I am good.

I ignore phone call after phone call from friends, many of them very very dear and very very close because I just don't want to think about it or talk about it. I lie to strangers when they ask when I am due and what I am having and pretend nothing is wrong.

My husband comes home at night and we talk and I often have my 10 P.M. cry and he just holds me and says nothing because really what is there to say? It will be okay? Because neither of us know what to expect.

He has great faith and hope and is optimistic and strong, and it is a good thing because sometimes I am dead weight and he has to pull me along.

And then there are good days where I smile again and laugh and feel hopeful that maybe somehow the tests are wrong and she will be born and the doctors will scratch their heads and chock it up to miracles.

But I know. She still has a heart problem and still has spina bifida. And what phrase drives me crazy right now?
"The Lord has a plan for you".

Don't get me wrong. I KNOW that. If anyone knows that I do. And I truly truly believe that he does. But for some reason hearing that right now is not helpful. Maybe someday when I look back I will be able to see that clearly and understand but right now. Right now in the middle of it, I hate it.

It's like waking up TO a nightmare instead of waking up FROM one.

And sometimes at my low points I talk to Kendall about how I wish I could just miscarry right now so it could all be over and we could begin to heal and move on. And what does Gracie Belle do? She kicks or punches or whatever saying "hey!" which is sweet and creepy and humbling all at the same time.

But after all this. After all the pain and frustration and anger I find myself being comforted. I feel little nudges from the Spirit giving me strength to go on. To get up and take care of my darling monkeys and keep it together.
(Because when you have to remember spelling tests on Fridays, monkey number two needs a stuffed animal on Tuesday, and to wear red on Thursday and monkey number one needs slippers for Friday and he has never owned slippers in his life and you buy some but they are the wrong size so you have to go back late at night to buy more so he won't be sad that he is the only one without slippers, You have to keep going.

My kids will probably save me from deep depression because they keep my head above water and focused on other things.

I find strength in the love and support of friends and the community all praying for our little family and our little Gracie girl. I hold desperately to the Lord needing him and loathing him all at the same time.

But like everyone tells me, I know he has a plan and I have hope that we will survive this and I will be better for this. Stronger for this.

Hopefully you made it this far and didn't stop mid cynical rant because there are obviously good days and bad days and overall I REALLY AM doing okay. But that doesn't mean it doesn't paralyze me sometimes.

We love you all and thank you for your prayers and donations and support and hugs. Next week is the heart doctor, so get ready for more head scratching and waiting. ;)

Thanks for listening.

Thursday, September 1, 2011

Waiting waiting waiting

My most hated phrase in the English language?

"we'll have to wait and see"

We went to the perinatal doctor and geneticist today. It was just one of those well, she's in there so let's just 'wait and see'.

It's difficult to reconcile what we see with what we know. From the ultrasound she is just a baby. You can see her moving and wiggling and playing with her feet. But we know things are not good.

The geneticist said that the results came back full trisomy 9 but there is no way to completely rule out mosaic trisomy. (which just means only some of the cells are affected). They felt pretty confident it was full though.

Her facial features are completely normal though. Many of the trisomy 9 babies we have seen ultrasounds and pictures of are severely deformed. Gracie seems to be normal. Her feet might be clubbed though.

In researching medical journals we have only found two cases of full trisomy 9 babies born alive. There was a set of twins in the 80's that were alive for a few hours. From the findings they looked to be SO much worse off than Gracie. One didn't even have eyes.

I guess we will let her and the Lord decide what she does and love her for as long as we have her. I don't want to keep her alive unnaturally (like only able to live hooked up to machines), and we and the doctors won't opt do major surgeries if it will only extend her life by days. I don't think there is any reason for her to go through the pain.

All we can do is love her and 'wait and see'.