why can't I be as positive as everyone else

EVERYONE is being positive. They're either just hiding their true feelings and fears from me, or they honestly believe that we're out of the woods and Bug will be a perfectly healthy baby girl.

WHY?!

Why can't they see that we aren't in the clear?
Why can't they see all that can go wrong?
Why can't they see all that we still don't know?

I feel like the worst mother-to-be in the world.
I am hopeful that Bug will be here in November. I'm praying that she'll be as healthy as she can be. I can't get past the cystic hygroma though. She has this and there's no way to change that right now. She may need surgery as soon as she's born, if she's born healthy enough for surgery.
There is still a 50% chance that she won't be here and no one seems to see that. I can't forget that.
I love Bug. I want to run out and buy her cute little outfits for next summer (clearance sales are the best!) and a new pack n' play (we have no need for one, but *I* want it for her) and a bedding set and pick the colors for her room. I know it's still early, and most people don't know what they're having this soon, but I do and I want to spoil her.
But I can't.
I bought a bug toy. I was so hopeful when I bought it, and I smile so big my face hurts when I see it, but I can't bring myself to buy anything else. I want to bring the bug to the hospital and play it for her when she's born and for her to have it always, but that's something small and something I can do. I can't buy clothes because I can't guarantee that she'll wear them (the few clothes I bought before May 12 are gender neutral and can be given as gifts) and, knowing she's a she, I can't buy her something and picture her in it and then not be able to see that picture in person. Even the thought of not seeing the picture in person hurts. I keep thinking of my favorite outfits that Belle wore and then I think of Bug in them and I cry.

I want to be as positive as everyone else. What's wrong with me that I can't?

today I'm hopeful

Just because.
I was at Target wandering the baby aisles as usual (I still have a toddler that needs things!) and I saw a pull toy. A pink elephant. I love elephants. LOVE.THEM. It's an obsession. Belle had 2 of these pull toys on her car seat (2, b/c one died and we HAD to replace it), and I thought to myself 'it's only 6 bucks, why can't you buy it?'
When I picked it up, there was a pink bug behind it.
I'm not really sure the woman in the aisle with her kids appreciated my excitement when I said 'fuck it! I'm hopeful today and my baby will be here this year!' She left the aisle pretty quickly. You know what though, I don't care. Sorry to upset you lady and expose your children to my vulgarity, but stumbling upon that bug toy means more to me than your comfort.

sometimes it's the little things that make you smile the biggest.

so why can't I relax?

I got my Tay-Sachs results today, negative. I didn't get Nick's back yet, but my negative result rules out a Tay-Sachs risk.

So. Why can't I relax?
Why do I keep running scenarios in my mind that end badly. Why can't I just enjoy the good fortune we've been given?

God has blessed us in more ways that I could ever imagine. He's listened to me cry and rant and plead, all before I realized that I couldn't tell him what outcome I expected.
I remember kneeling in the Chapel at MRH while waiting for the transport team from MassGen to come get Belle (btw, they didn't come b/c of weather) and I was sobbing and praying and over and over again I kept saying 'I know you won't give me anything I can't handle. I know there's a reason for this, but I don't like it.'
It took waiting for a NICU team to come and get my baby for me to realize that. I remember saying it over and over again over the next few days as well - every time I didn't like something. Somehow, I must have thought if God knew I was upset with His plan, He'd stop giving me obstacles.
Boy was I wrong! All the little hurdles He's sent my way since then completely lulled me into a false sense of security. In my wildest dreams, I couldn't imagine the situation we're in right now.

I'm afraid.
I'm afraid that I only find my faith when I'm in a time of crisis. I'll be the first person to tell you I'm a piss-poor Catholic. I can't remember the last time I went to confession, or regularly attended Mass. Since I was 4 years old (that's over 23 years now), I've never lived more than a quarter mile from a church - most of that time, I was right across the street. I talk to God every day, but can't take the time to visit in His house. Yep, I'm a sucky Catholic.
I'm afraid that I can't handle all that's being given to me. Maybe that's a poor choice of words. I KNOW He won't give me something I can't handle, but I'm afraid I won't handle it correctly.
I'm afraid of the other shoe. I feel like I'm just waiting for it to drop. How much good news can we get before. Before it's not good anymore.

Nick was the one who asked what would happen when I went to term, not if. He asked what would happen when the baby was chromosomally normal with a cystic hygroma. I ask the if questions. I scour the interwebz for any piece of information I can find that might be helpful. I look up which children's hospital has the best program for lymphatic malformations.
Nick has faith in us and our ability to succeed as Bugs parents. Nick has faith that Bug will be everything we dreamed she'd be before May 12th - it may take a few extra steps to get her here, but she'll be here.

I don't know. I don't have much left to say that I haven't already. I'm still so excited about our good news, I just wish I could enjoy it more. I need to relax!

Belly monster was awesome tonight!

Seriously, I'm so happy about it, that I'm reposting it to the blog.

She's never really happy on Nick's first scheduled night and throws a giant fit.
Tonight she took a 5 minute bath and I thought I was in for it (she takes a 30+minute bath for Nick). She chugged down her sippy and then was just so happy and funny. It was a very pleasant surprise!
She was bouncing around on the couch with me and then grabbing my face and giving me kisses. She'd watch tv for a minute and then make a silly face and put it in front of my face so that I'd laugh. Once we got upstairs, we read 3 books, then she gave me a good night kiss and went into her crib without protest. She only danced around for a few minutes (instead of her typical 1/2 hour) and is laying down now all snuggled up with a blanket.

----

I'm sure she senses that a lot of the tension of the past week has subsided. It's like Nick & I can breathe again. Not deep breaths, but we're no longer struggling to take shallow ones and that's an amazing feeling.

TODAY IS AWESOME!

answers (some anyway)

I'm on cloud 9 right now!
Negative for Down syndrome.
Negative for trisomies 13 & 18.
Negative for Turner syndrome.
There are still other chromosomes that are being tested, but right now, things are looking up.
Our little girl had a 10% chance of survival and now has a 40-50% chance.
yep. Belle is going to have a little sister. I'm tired of surprises so I found out.
She's not out of the woods yet. There are other chromosomes and genes being checked and if those come back ok, we can opt for a microarray analysis, but we'll cross that bridge when we get to it. We'll have another (or several other) level 2 ultrasounds to monitor the cystic hygroma.

Nick's optimism has really helped pull me through to this point. He was the one who only asked questions about what we'd do when/after Bug was born. He refused to talk about there not being a Bug or to talk about how the odds were stacked against a live birth. He asked what happens for delivery and after birth when I couldn't see past making it to the next appointment. I love my husband, and wouldn't have been able to handle this without him.

waiting sucks.

I'm in limbo.
I don't have any answers.
I don't know how to feel.
I cling to moments of normalcy.
I hope and pray and cry and research and it all boils down to one thing right now... I haven't any answers yet so it's all for naught. For every success story I find, there are 3 that end badly. For every happy thought, there's a sad one. I go from imagining Bug having a first birthday and being able to tell the doctors that they were wrong, to trying to decide what type of funeral you have for a baby. I even came up with some cockamamie reason for the septations in the cystic hygroma that made me so hopeful I nearly bought the form for Bug's first birthday cake.
I want answers. I need to know how to feel. I'm terrified of the answers though. All the success stories seem to either be to chromosomally abnormal children or the CH didn't present until after birth. I don't understand if that means I should be hoping the CVS finds something or that it doesn't. There are better success rates when it presents after birth, but we don't have that luxury. There are so many stories about finding CHs and then, in later ultrasounds it's shrinking or gone... but none of those stories say that the CH had septations. There are so many stories about loss in utero due to CH complications/chromosomal abnormalities discovered b/c of the CH and all those stories say their child had CH with septations.

I'm lost right now. I think that's the best way to put it. I'm lost in my life. I need to be Belle's mother and show her that everything is ok, but I don't feel like everything is ok. I feel like everything is crumbling and I need to hold up the pieces that haven't fallen yet.

I just need to hold on a few more days. I'll get the FISH results and Bug will get their forever name and we'll do everything we can to make sure Bug knows how loved they are. Just a few more days.

CVS. No, not the pharmacy

Today I had a CVS test done. CVS, or Chorionic Villus Sampling, is a procedure were they take some cells from the edge of the developing placenta to test for chromosomal abnormalities. I had it done abdominally which means that a 20 gauge need was inserted into my abdomen, through my uterine wall and into the placenta where it was "bounced" until a large enough sample was obtained. I made it through with less pain than I was expecting, but I highly doubt I'll be making shoving needles into my ute a habit any time soon.

I also got some early results from my sequential screen. My original risks, as a 27 yo healthy woman were 1 in 660 for Down's Syndrome and 1 in 6600 for Trisomies 13,18. My actual risks, based on blood work, are 1 in 25 for Down's and 1 in 2500 for Trisomies 13,18.

I have to have another blood draw in the morning to screen for Tay-Sachs, again. I had 2 draws done while carrying Belle and were both in-conclusive. I could have sworn the 2nd was negative, but I guess I was wrong. (SEE THAT DH?!? I ADMITTED BEING WRONG. ON THE INTERWEBZ. WHERE ANYONE CAN SEE IT)

So that's where we are right now. Waiting for test results and hoping and praying and carrying on.

all is not well

Bug has a very slim chance of survival.
I feel like if I say it enough, I'll stop crying over it. Hasn't worked yet, but that doesn't mean it won't.
I'm heartbroken. I failed my baby. I know there's nothing I could have done to prevent this, but there's nothing I can do to fix it either. It's my fucking job as a mother to make it better and I'm a failure at my job.
I'm not giving up hope until Bugs heart stops beating, but I'm trying to be realistic. The odds of me seeing my child take a breath are slim to non. The odds of Belle teaching Bug to be gentle to the dog and cat are even slimmer.
I want to hope and be positive, I do. I just can't right now. I can't keep thinking about the future like I was. I can't keep envisioning Jordan as a big sister to this baby. I can't keep envisioning this baby as a big sibling to the next phantom baby.
Right now, there doesn't seem to be much I can do. Just keep on keeping on I guess. Hope for the best, prepare for the worst. I just don't know. No, I do know. Right now, I am pregnant. Right now, Bug is still growing and has a strong heartbeat. Right now, I need to be grateful for what I do have.

the latest news around here

Belle scratched her cornea last week and was miserable. She DID NOT like the ophthalmologist at all. She liked her even less when we went back a few days later for the follow up. It's healed up very well though and she's back to her happy self.

We went to the zoo Tuesday the 11th and had a good family day. We were only able to feed one deer in the deer forest, but that was enough. At the petting zoo, a turkey decided to come up behind Belle and gobbled and scared her. We did have fun petting the goats though. It was just like being home, one tried to sit on my lap and another decided it couldn't leave my side -- just like having Cooper around.

News of the Bug.
I'm still sick. I got a prescription though so hopefully that helps. The cyst is still on my right ovary, but it's seems to be shrinking a little (down .6mm in 6 weeks). The NT scan did reveal a thickened nuchal fold so I'll have another screening with a specialist next week.

Here's hoping all is well :)