Exclamation Points

I just re-read the last post and it seemed weird to me. Over analyzing? I probably am. I wrote, her growth is back on track and then put an exclamation point. And at the time the exclamation point just seemed so... odd.

I mean I guess it's--positive--, but sometimes I struggle with positivity. I mean I guess I am hopeful? But then I feel like hopeful for what?

I think I could definitively feel hopeful if, say, I was hoping for her to be healed and get better. But this in between, this half hope is awkward at best and devastating at worst.

It's just like, I feel hopeful that she is growing again so that she will what? Make it full term and then die?

I think the real problem here is the uncertainty. At the growth appointment what really happened was the doctor told me that we need to figure out a plan. If she survives to birth and is stable enough we have to decide whether or not we are going to begin the processes of surgeries... or not.

The obvious risk with the surgery is that she will not be strong enough and die on the table. Which I HATE. I know that I do not want her to die all alone like that. But if we don't do the surgeries, with her heart problem she won't last more than a few days.

So I feel like I am making the choice of actively killing her, or passively killing her. And it makes me sick to my stomach ALL the time. It's a paralyzing weight on my heart.

And then there is that little piece of hope that always lingers in the back of my head that she will be a miracle baby. She will be the one that shocks the doctors and pulls through but I don't know. I don't know how to hold to that.

This whole experience has pretty much rocked my world in that everything I thought I knew and understood about life is suddenly in shambles. Everything seems so shiny and bright and simple before. That's what life has become, a before and after.

And I sit there and think, is this that moment? Is this the moment, the struggle, the event that I will measure the rest of my life by? Before Gracie and after Gracie? I'll have my own timeline of BG and AG.

I married young while most of my friends stayed single and lived it up in college. I had two kids and put the distance between us even more. I always felt a little older, a little more worn, (I guess having kids does that to you).
And then my friends started getting married and having kids and I felt like we were on the same plane again.

And then this happened. And I feel ancient. I feel like I've aged 100 years and that there were so many things that bothered me or worried me BG and now I just brush them aside. Things as simple as fridges.
My husband wants side-by-side doors and I wanted the one with the freezer drawer. BG I would have fought TOOTH AND NAIL to prove my choice was better. Now I don't care. It's a fridge. It will be cold. Done and done.

I'm not saying I take no pleasure out of life anymore or that I give into my husband's opinions every time... I'm sure he is reading this scratching his head and thinking, has she EVER given into my opinions? (love you honey).

I guess I'm just saying I just feel tired and I use up most of my fight on Gracie.

The bottom line is, we won't know anything until she is born so really I shouldn't borrow trouble, but it's true we have to plan. There has to be plans. If she does pass quickly what will we do? Where will we bury her? Will we hold a service? You don't like to think about these things, but these things, these foreign things are suddenly creeping onto the stage of my life and there is nothing left to do but deal with them.

Googling for pricing on little caskets is a strange experience let me tell you. I think even Google, hesitated and didn't know what to put into the auto-fill function. And maybe she won't die. Maybe she will survive, but if she doesn't, I need to have a plan. I don't want to have to be making all of those decisions in the middle of total grief.

Sorry. This post was heavy. For the record, I am STILL okay. It comes with the territory I guess. But I want to remember. I need to remember it all.

Growth Update

Went to the perinatal doc today and had an ultrasound. Her growth is back on track! So that's good news. She is still little in the 6th percentile and measuring small by about two weeks, but at least she is increasing again.

We got to do a 3-d ultrasound which was fun to see really see her facial features though Kendall thinks it makes her look a little weird, but I am only 26 weeks so she hasn't really accumulated all the baby fat yet that helps. I will try and scan them and post them soon. (but I hate scanning so we will see HOW soon.)

Anyway. Just wanted to let you know.

Also wanted to let you know I've developed a new fear that they are going to tell me whoops we were wrong and she is actually a he. That would throw me for a loop I think. ;) Oh how I love my irrational fears.

Girls in White Dresses

This is the beauty my mom's friend made for Gracie. It's teeny right now since we don't really know when she will be born or how big she will be. I think she is making one in a slightly bigger size as well.

The neck and arms are velcro because, worst case, she is still born, their limbs aren't flexible so it's difficult to dress them. The velcro solves this because she could just be laid onto the dress and velcro'd in.

I know it's been a while since my last post which was mostly a bleak version of my perspective but I assure all of you we are doing all right.

I have an appointment with the perinatal doc tomorrow which will tell us a bit more about her growth trend so that will be good, or at least informative.

I am about 25 weeks right now which is incredible because this has literally been the longest pregnancy of my life and I am STILL not in the 30's but oh well.

I have been trying to enjoy it though. I'm trying to just really savor the time right now that I have with Gracie. She is very very active and so I lay in bed at night and just feel her bouncing around and it's comforting. It's our girl time.

We are going to be moving in a couple weeks to a new house which is exciting!!! AND the bonus is it will keep me EXTREMELY busy as there are MANY projects to be done.

The problem with moving to a new hosue is we will also be moving to a new ward (moving to a new ward is kind of like moving to a new school district for my church, you go to whatever building and time based on where you live). ANYWAY, the dilemma is what do I say?

I'm clearly pregnant and will clearly get questions, but saying Hi, I'm Emma and yes I'm pregnant with a girl and she will probably not survive, is kind of a conversation killer.

Case in point. I went to a birthday party for my second born and I was chatting with all the moms. I basically pretended everything was fine with the baby et cetera, but there was this one lady who went on and on about how great it was to finally be having a girl after three boys and all the milestones in a girl's life and how great her wedding would be. (SERIOUSLY? She was very adept at adding salt to the wound). And finally I said, yeah she has all these problems and might not ever leave the hospital.

That shut her up and she tried to discretely avoid me the rest of the party. So, I don't want people to avoid me because they don't know what to say so I think I might just not say anything???

Would you be offended if you were friends with someone for a few months, she had her baby, and then you found out all along that she knew the bad news? I don't know. Maybe it will just come out naturally.

Anyway. I'll try to update tomorrow about the appointment. Until then...;) (see the smile on my face? I'm doing just fine.)

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.

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'.

No news is...

We got the amnio results today. It isn't good.

She has trisomy 9. Full trisomy 9 which is worse than partial or mosaic. I don't know much about it. We are meeting with the doctor on Thursday to discuss it.

The thing about it is, neither the doctor nor the genetic counselor have ever seen a Trisomy 9 baby make it past 8 weeks in the pregnancy. I'm 20 weeks. Everyone is puzzled as to what to expect.

The chances of her surviving the pregnancy are slim, the outcome of life if she is born is probably slimmer. Needless to say we are heartbroken and we find ourselves in yet another situation where we just have to wait and see.

We are okay. Really we are. We are just having to process the news and well... wait. If anything becomes clearer after meeting with the doctors who have no experience with a case like ours I will keep everyone posted.

Thanks for the prayers.

I Heart Gracie

Just wanting to jot down real quick. We saw the heart doctor this afternoon and things looked the same... which is good. Though her heart has a ventricle problem it is still growing proportionately and if it keeps doing that, the heart surgery would be minimally invasive (they would go through her thigh and use a balloon to stretch a part of the heart or something as opposed to open heart surgery...)

I am probably describing all of these things so wrong and medical aficionados all over the world are cringing but oh well.

Anyway so doctor's appointment today=good news so far. ;)