Friday, June 30, 2006

Dreams that mean something.

I know there are several people looking here to see what's going to happen next, but there isn't a lot more to say.

As amnio results start trickling in, the results are just as bad or worse than the last news. Our Jacob is a very broken little guy, who down to his genetic make-up can't survive in this world. As the genetics counselor said yesterday when I told her how Brian and I were wrestling with the issue of whether to say goodbye early, she said "It's hard, I know, just because there is so much wrong."

I know he's not growing quickly because I'm not either. Clearly, our little guy isn't thriving even in the warm place he is now. There's a part of me that wonders if he's even still with me, as I don't feel any kicks, and I don't "feel" pregnant. Or maybe it's just a defense mechanism. Who knows.

My Mom and sister are coming soon to help us through our next steps. This is the time to have family close, and fortunately they can come so Brian and I are not alone through this.

I probably won't post much here for a while. Just know that the things that I hang onto are things like the dream I had last night where I asked Jacob (who was perfect, whole, grown-up and able to speak to me) why God would let us go through losing him, and he said to me "You learned how to love like a real Mommy. Isn't that enough?"

And I said "Yes, my beautiful boy. Yes it is."

It is amazing what the mind can do to try and work things out in your heart, isn't it?

Wednesday, June 28, 2006

I'm painting my living room

I got a wild hair to paint my living room while we wait this week for our final amnio results.

I find it rather therapeutic, but it's a rather dangerous job. Dangerous in that I'm going to have to live with this for a long time, and when I dribble paint somewhere, I keep thinking things like "It doesn't matter, there's a so much more important than this." I can just see 6 months or a year from now, me looking at the crappy paint job and thinking "Man, I should NOT have been doing that." Ha.

The thing is, it's keeping my hands busy while my mind can still work on other things, like talk to Jacob or just consider some more all the things we face.

I found a support group online for those considering ending a pregnancy due to medical reasons, and I find it very helpful to look at all the different options & ideas. Not that there's a lot of options, mind you, but hearing different perspectives is probably a better description.

There's nothing easy about this, so I just keep moving. Like Winston Churchill's great quote says "If you're going through hell, keep going."

So, we keep going.

Tuesday, June 27, 2006

The USA Just Doesn't Get It.



Let's take a break from our recent tragedy, and talk about something happy and good.

Like World Cup Soccer.

While I was on vacation at my brother's place in Oregon, I slept on the family room futon, and frequently woke up to the sound of the TV being clicked on at 6 or 7 a.m.

It was my brother Jeff, local sociologist and sports maniac, clicking on the tube to watch World Cup Soccer.

My brother's sports addiction is quite bad. I swear the guy would watch just about anything if there was a tournament for it, like some obscure sport like bloody knuckles.

But by the middle of the week, I was hooked on soccer myself. I started wondering why people in the US take no interest, while the rest of the world treats soccer like it's more important than life and death itself.

You see, you have to sit down and watch a game, then watch another one, and another one, and see the stark-raving mania of the fans, and it gets in you.

It's not just the beauty and pace of the sport itself, the it's absolutely crazy fans that are fun to watch.

My brother said that while the British sing "God Save The Queen" during their rallies for the team, the Swedes are much less well, formal. They sing a little tune that basically translates to "We've traveled a long way. We're here, and we're drunk."

That's just plain funny.

Then there's the soccer players themselves. It's fun to see how different people from different countries look. It's somehow comforting to see that even with the globalization of business that include a McDonald's and Starbucks in every country, we haven't all been homogenized to look alike. It's also fun to try and pronounce the exotic names of the players from Namibia. Or better yet, hear the announcers try to do it.

And let's just face it, David Beckham is just plain HOT.

This morning, the team of my country of birth, Brazil, plays against Ghana. I can't wait to see them play, and hopefully win.

At any rate, we don't have the coolest flag, Brazil does.

And by the way, it's actually spelled "Brasil".

Viva' Brasil!

Monday, June 26, 2006

We have an initial diagnosis.

This is the news from today:

I got a call late this afternoon from the genetics counselor. God bless that woman, she said she was refreshing the lab reports all afternoon to see if ours was coming in..

The FISH results (early amniocentesis reports) show our Jacob has confirmed presence of Trisomy 18. When I asked about the spina bifida, she said that is one of the outcomes of Trisomy 18, and that that will be confirmed on the final amnio report, which we expect next Monday. The bad news is, Trisomy 18 is considered fatal in more than 99% of all cases, and it's worse in boys than girls.

The counselor also said Jacob's heart has "one of the most severe development problems" It's called hypoplastic left heart -- the left side of the heart is much less developed (including a missing valve), and the right side is overcompensating for it. She said he could theoretically make it to term, but that he would likely die soon after due to the fact that all four chambers must be working at birth in order for the baby to continue living. Right now, he gets his nutrients and oxygen from me, but later, when the heart has to do all the work, it would invariably fail in a matter of minutes or hours, regardless of whether he was born at 22 weeks or 40.

My Mom and sister have already said they'll come out if we decide to induce and end the pregnancy due to medical reasons. We have about a week to think about it (we want to see the final amnio results), then due to the law and needing to get "permission" (God, I hate that word, how dare they), from the hospital and hospital staff that would attend us before proceeding, we would need to move ahead fairly soon after the amnio report comes in. At the earliest, we would proceed late next week.

In the meantime, we have a week to do some serious soul-searching about what to do. We're meeting with the pastor of our church tomorrow afternoon as well, and our church has an on-staff clinical psychologist and former minister who can help us both. They are very supportive of us and will just help us through whichever decision we make -- whether to end the pregnancy now, or let it end on its own. There's a part of me that believes there's a special ring of hell being parents who have to decide whether to give up on a child who was so very much wanted, but whose situation is so hopeless.

Please continue to pray for us during this difficult time. Thanks for all the well wishes and prayers.

Just an update on today so far

I'm doing all right.

I stayed home from work and made some phone calls today. I called Human Resources for paperwork for a leave of absence, my boss to let her know I'd be out at least a couple-few weeks, and my doctor (my super-kind NP John), and a few other calls to get the ball rolling. John said he'd be happy to sign whatever we need to to get me out of work until this is over. What an incredibly kind man. He said again how sad he was to read the ultrasound report before he called (he took such good care of us those first 12 weeks). He said how sorry he was to hear this was happening to us. I told him about the great treatment we'd gotten from the perinatologist & the genetics counselor, and said how I appreciated him too.

In between the obvious, I'm at home considering painting my living and dining room. I went to Lowe's yesterday and got paint samples and have them taped up all over the place. Since we bought new furniture, I wanted to paint, then get new carpet later this summer before the baby came. I was going to hold off painting but now don't feel like it'll harm anything really, and it'll give me something to do while this waiting games lasts. It's so amazing how I just can't face leaving the house for more than a quick trip here or there to buy something like milk. Actually, I haven't even done that, but asked Brian to do it.

This morning I also worked on a baby quilt for a very special little boy from my online support group board, and I worked on pinning the layers together so I can close it up, talking to Jacob when the mood strikes me, and taking whatever phone calls I get and talking to family.

Brian and I talked some more last night and decided not to rush into anything, that we'll take this a day and a test at a time, and hopefully come up with a plan that will help Jacob suffer the very least, and give our hearts time to come to terms with it. Even though I think that was the plan before, I think it helped us both to know that we're not going to jump to action, but make this the most thoughtful thing we've ever entered into in our lives, whatever it may be. For some reason that makes me feel peaceful, and peaceful is good.

Thanks to everyone who has posted here, e-mailed and called in your support. This has to be a special ring of hell -- one of being a parent having to face giving up a very beloved child. I don't know what I'd do without you all.

Saturday, June 24, 2006

Sometimes Friends Just Do The Right Thing at The Right Time

Tammy, a friend of mine from an online support group for miscarriage that I've belonged to for years, wrote the most wonderful entry on her blog about our son.

Never in my life have I been so touched by the kindness of a friend, whose words just comfort my soul during this difficult time.

Please take a moment to read the entry she made for us.

http://canonlyimagine.blogspot.com/

Thank you, Tammy.

Friday, June 23, 2006

Today was just plain tragic.

Today was the hardest day of my life I think.

I'm sorry to have to post it here since this will be news to a few out there, but I just can't e-mail everybody right now.

Our little boy is much worse off than we thought last night after our first ultrasound. It's bad news, in that it looks like we will lose our son.

I am so sorry to have to blog this, but I have to.

At this point, we would have been happy to "just" have spina bifida to contend with as they first thought during yesterday's ultrasound, but it's much, much worse than that.

We talked with the genetics counselor this morning, then went to an ultrasound with the specialist and a tech there and the biggest, baddest ultrasound machine that took up part of a whole room.

We looked at the markers for spina bifida -- the slight misshapen skull, the excess fluid in the brain, and the spine that doesn't look like the straight little railroad track it's supposed to.

Then we moved on to the worst of it. There is a hernia at the point where the 2-cord umbilical goes into our baby. The fact that there is only 2 threads instead of 3 to the cord itself is an indicator of chromosomal problems, but a hernia at that point is the bellweather.

Then, there was the fact that both his feet are clubbed, and one of his arms is not developing with a normal hand.

And finally, the worst news -- his little heart, while beating away -- is abnormal in its symmetry and there's a valve that looks like it has not developed.

We gave in to an amniocentesis, which I had resisted before due to fears of it triggering a miscarriage.

In the end, it looks like our baby boy has two problems, which intertwine but aren't necessarily related. One is the spina bifida, and the other more serious problem, a chromosomal one. They are looking at the amniotic fluid to determine if it's the worst of our fears -- Trisomy 13 or 18, both of which are incompatible with life.

The statistics I got were that with Trisomy 13 or 18, the baby has a 90% chance of not making it to term, and of the 10% who survive to birth, another 90% die in the first year due to heart problems.

We have to wait til Wednesday to hear what the diagnosis is on the chromosomal testing. In the end, we may be forced into the worst possible decision parents have to make: to end a pregnancy before it ends on its own.

The heartbreak in our lives just continues. But like everything else so far, Brian and I are resolved to get through this too.

Thanks for your thoughts & prayers.

I still love this picture. I will treasure it always.

Monday, June 19, 2006

This Should Tick Off The Natives



All right, Colorado Natives. This one's for you.

I've lived in Colorado for 5 years, 1 month and 19 days. I love it here. I love it that it snows in the late spring and it can be 80 degrees the next day. I love it that traffic is "bad" when it slows down a little. I love it that the people are, for the most part, so darn nice. And they mean it too.

But the one thing that gets me (and I know this happens elsewhere too) is the "I was here first so you should leave" syndrome that locals get after they've been somewhere a generation or two.

I am, by birth, a wanderer. I was born in Brazil to wandering parents, who were from Michigan and Oregon. They brought me "home" to the States when I was five, and I went to several schools before I graduated from college -- but not as many as the average Army brat.

Nonetheless, I moved a lot. I lived in Oregon, Washington (3 different places), then moved here to Colorado at the request of my spouse, who had come here years earlier for grad school and fell in love with Colorado, and Denver in particular.

But today, as my stuffy head and I were driving on a quick errand, I noticed another one of those blasted bumper stickers:

I know this started back in the 1980s, and now there are several cutesie responses to this, but this "Native" thing is a bit provincial, dontcha think? WHO really is a native? Not me. And I'm betting, not you either. Unless you are Native American (and by that I mean 100% Native American, not some fraction), you can't complain, in my book.

I have a co-worker who honestly believes that somehow, she's more deserving of living here and breathing the rarified Colorado air, simply because she was born in some hick town outside of Grand Junction. And I know there are many like her.

This particular person complains about the traffic, says things about the snowstorm of 1981 that can't possibly be true, and in a not-so-subtle way, thinks that most of us non-local, non-"native" types should leave her alone so traffic wasn't so bad. But then, she has never lived in another big city, so her comparisons are often just plain wrong -- since she really doesn't have a clue what it's like in other cities, and how much worse off it is in other places. Yes, traffic continues to get thicker. It's a big city. In Denver, I can only say you're lucky it isn't worse, and that it didn't happen sooner.

But the bottom line to me is this: You can't have stagnation and growth at the same time, and you can't have growth and not have growing pains. The planet is getting more crowded, and being one of the most pleasant places I've landed so far, I can see why people would choose Denver. Whether I landed today or 20 years ago is irrelevant as to whether I have a right to be here and take up space. We ALL take up space, and we ALL have a right in this country (and the world for that matter) to do it where we please.

At least that's what I believe.

Saturday, June 17, 2006

The Sickies Found Me

I'm on vacation this week in Oregon -- visiting most of my family.

Last night my throat started hurting...by this morning I had been reduced to violent sneezes and a stuffy head that can't be unstuffed.

I've spent time trying to figure out what I can take that won't leave my baby cross-eyed, and the list is short, and I'm on a farm where it's a special trip to the store to get some stuff. I got some Tylenol cold stuff that looked reasonably safe to sleep tonight, but who knows. I've always been a double-dose NyQuil kinda gal, and now I can't really do much. It just feels like throwing a small Band-Aid on a gusher.

I have to say I'm glad I haven't been sick up til now, but boy howdy, is this miserable.

The worst part is I have to fly to go home tomorrow. I hope my head doesn't explode.

The good news for this week is that I'm 19 weeks pregnant today. The kid is sounding fine, and our 20-week ultrasound is next Thursday. I can't wait to see how he/she is doing.

I'll write more next week when I get back home...just wanted to give a quick update.

Wednesday, June 07, 2006

No Soliciting.



A young woman came to my door tonight. Solicitors at our house are usually teenagers selling something, or the Greenpeace volunteer, but tonight it was the other kind of solicitor -- the religious one.

I asked her what she needed and she said her "church" was inviting people to come to a "gathering", as she handed me a colorful flyer.

I saw the words "Jehovah Witness" on it, and just as she was trying to turn away from me (like now that it's delivered, she could run), I pushed it back to her and said "No thanks. I already go to my own church."

Once back in the house, I thought how much I don't like uninvited salespeople knocking on my door, but even more, I really don't like those "No Solicitor" signs. Some people in my neighborhood have them, and I always see them as so darn unfriendly. Not to mention the fact that in today's declining society, there are probably plenty of solicitors who, in fact, don't know that word is THEM.

So, I looked for something friendlier that says "Please don't go away mad. Just go away". This was the mat I found online for just a few bucks.

I hope it works, and sends them away with at least a chuckle, but without having rung my doorbell during dinner.

Tuesday, June 06, 2006

Progress That Can Be Measured in Inches & Pounds

There's a lot of random stuff that goes through a pregnant woman's mind...at least my pregnant mind.

One of them is how odd it is to feel like I'm "not that pregnant" most of the time. Then, I try to bend over to pick something up from the floor, and I don't bend where I used to -- in fact there's outright resistance from the middle where the baby says "HEY, DON'T DO THAT! I'M IN HERE!"

I don't feel that big most of the time, then I catch a glimpse in a reflection, or try on a pair of pants I haven't worn in over a week, and I realize yes -- I'm growing -- and fast.

My waist has swelled, disappeared and grown at least 8 inches (I didn't measure before I got PG, but I'm assuming a certain number)...tonight as I put on my favorite shorts with the elastic to hold it together, I found even that gimmick doesn't work. They're just plain too tight to wear and close at all. Goodbye, my last pair of non-maternity pants. They're a thing of the past until after I'm a Mom.

Yes, at 17 weeks, I'm "popping out all over" just like the book says I will.

Here comes Bruiser!

Sunday, June 04, 2006

Quote of The Day

"Today you are You, that is truer than true. There is no one alive who is Youer than You."
- Dr. Seuss. American Writer and Cartoonist best known for his collection of children's books. 1904-1991


I love Dr. Seuss. I love the Who's of Whoville, the Sneetches who had Stars Upon Thars, and Sam I am, who Does Not Like Green Eggs & Ham...

Dr. Seuss had a way of saying things that not only made a statement about how we should try something new (Green Eggs & Ham) or treat each other well("A person is a person no matter how small"), but through quotes like this he can still make a 39-year-old like me feel special.

No one alive is Youer than You.

Maybe it's better for the world that no one is "Me-er than Me", but it made me smile today anyway. :)

Saturday, June 03, 2006

Tumbling Blocks for Bruiser




This is a quilt I have planned for Bruiser. I just started it today, getting the design put together and finding fabric for it.

It's in one of my favorite quilt books ever -- I've made nearly all of the quilts in it at one time or another...but it's hard to choose. I like this one because it's difficult (you can only sew one small seam at a time, not in a continuous seam from one end of the quilt to the other), and the optical illusion of tumbling blocks is one of my all-time favorites.

I bought a bunch of material on sale at Hancock Fabrics last week, and a bunch of it's going into it. I just LOVE bright colors. I hope Bruiser does too!

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