happy bittersweet birthday, dear Owen

Not that physically being somewhere other than home really helps you outrun the grief. Yet, here we are, in San Diego. Grief isn't like some velcro patch that you can rip off & replace with some other *happier* patch. It's more like the new skin that grows over a deep wound. It looks okay from the surface, but if you touch it even lightly - boy does it hurt just like the original wound.

Yesterday Hubby, BigBro and I were at Legoland having fun from open until closing time. Today, we were at SeaWorld. Yet, only little fun was to be had. Hubby & I are really trying *so* hard to make the best of it. For BigBro's sake, it just wouldn't be fair for us to wallow. After all, everyone around us has gone on living their lives. Which, I guess, is why we are still here. To figure out how to best live our lives. Whatever that is supposed to mean. BigBro was a whiny grouch almost the entire day. Until we came home, then everything was okay. Really, so many times that I am getting on with life, or more appropriately living after a deep loss -- I feel like I'm pretending. I do a few things that I want to do and (of course) not what I most want to do -- so, I pretend. Even if it's not something you really want to do, you are supposed to do it anyway and plaster a big smile on your face (or laugh and pretend like you're having fun). That's what Dr. Laura says to do. Then (alledgedly, this still hasn't been working out for me), you one day realize that you are living life with fun and happiness again. I'm still waiting for that day. Like when I was pregnant with Owen last year, when we blissfully didn't know that anything was wrong... I remember looking carefully at the edges, outlines and depth of the trees, colors, grasses, leaves and flowers and thinking, "Life just doesn't get any better than this!". Oh, does that seem like a world away.

Oh, Owen. If only you were still here, my sweet babe. I will never forget the joy I felt when I first saw you in the hospital operating room. My heart nearly lept from my chest. I had so longed to see you and touch your soft skin. I had forgotten how impossibly soft a baby's skin can be. Would you look like mommy, daddy or your big brother? Oh, just like BigBro! And, words just don't convey the great joy at seeing you the day of your funeral. Only a few days had passed since your birth and passing -- I thought I had completely memorized your face, fingers, feet, shoulder, etc. and our time was so brief, that the edges of my memories were already starting to get fuzzy. I had that one last time to memorize your perfect little everything, before you were carefully placed in a casket. I miss you so and selfishly wish I had never heard the words Trisomy 18. Or, that you were at least still with me. No sleep, constant crying, round-the-clock feeding/diapering -- if this was the state that I was to live in for the rest of my life, I would gladly live it, with you.

where is she?

so you might have wondered... Starting in the middle of June, I was just going through the motions of life - responsibilities and such. For no apparent reason (nothing happening in my life right now), I felt anxious for about a month and a half. The anxious was to a lesser extent what I felt last year during the same time (the not knowing what might happen). I knew the anxious was just a reflection of last year, but it sunk it's teeth in deep and held on for far too long. Then, that would put you at early August... Well, some have called other concerned citizens like me showing up at tea parties, city and town hall meetings: angry mobs, brown-shirts, etc. In my free time, I've been going to these types of events here locally. I'm going to start writing again, though I'm not sure how much I'll post of my political activities.

finished the dining room

My lamps arrived and the curtains were installed...
Aren't the shades interesting?

finished the entry way

I've had most of these pieces of furniture for almost two years, but had been waiting to find just the right things to put up on the walls...

I reframed two early 1900's etchings (an inexpensive ebay find)
-- and then, Donna found this... (to go over my settee)
What is it, you ask? Well it came to me with the back side of it showing (when it was framed previously) -- which, by the way, looks like this:
And -- it badly needed new plexiglass. It is a page from a very old hymnal (ye olde page is written with a quill on an animal skin). It is written in latin and originally sat in front of the church choir and someone used a page-turner to turn the pages for the choir. We did some digging and it's a 17th century antiphonal and the latin reads:
The first three italicized words are assumed to be on the page just prior to this one. I also had it translated and it says:


Since my tribulation is at hand and there is none to help me
But you Lord do not keep your help far away from me,
look to my defence. I have been troubled in you since I was in the womb, in the very womb...


The first two lines are most probably from Psalms (which is my favorite part of the bible) 22 and I don't really know where the third line was going (or if it came from the bible), since I only have the one page.

So personal

(Gives me goose bumps, really) and -- I purchased it before I knew what exactly it was or what it said.

David

To be sent tomorrow :-)
Hope you enjoy it!

Just call it what it is...

lack of motivation? I haven't been emailing, blogging or hardly anything but our routine stuff. I wouldn't say it's overall sadness like before, but still -- this wanting of some 'alone time'. Anyway, I had started several blog entries only to scrap them because they were just not exciting (in my mind, I was saying that it was just too lame to put on a blog). Plus I am working on a couple other things that aren't done - so I can't post pictures! Today I was thinking about it and I can't say that I've ever posted much about our routine. So, here you go:

BigBro wakes up early. I am not a morning person, so by 'early' I mean between 5:30 and 6:30. He comes downstairs, climbs into our bed and is so very excited about the day. Any day. Every day. Usually a few "I'm hungry"s followed by "Come on, let's go. I really want to go." and mommy is out of bed. After bathing or changing into daytime clothes we drive to one of the main nearby shopping areas.
This is because although we are within walking distance (less than 2 miles) - it's just not conducive to walking. Busy streets, no sidewalks and many with no bike lanes - or very narrow bike lanes. It doesn't help that the bike lanes are only on the busiest of streets (which means you suck in exhaust fumes the whole time - which is not my idea of a 'nice' walk).

Anyway, we drive, park, then walk Stanley. Even though Stanley will be 11 yrs old in August, he still needs daily exercise. I feel like the mailman, "Neither rain, nor sleet, nor snow & ice will keep me from picking up dog poop". Okay, well the mailman delivers mail, he doesn't pick up poop - but you get the idea anyway. So, I combine my morning coffee with this excursion and let's just say that the ladies at Peet's Coffee and St. Honore Bakery know BigBro really well.
In fact, even though we already have more toy cars than we need, the ladies seem to find one in a cereal box or from their own grown son's retired collection and so BigBro's collection just seems to keep growing. On our walk, we go through a small park at one end of the big lake, then down a path next to the lake. About once or twice a week we bring cracked corn to feed the ducks.
Since it's spring, we've been seeing lots of ducklings and gosslings. In fact, Mother's Day was the first day that we had seen a pair of Canadian Geese with a clutch of six gosslings. And just this last weekend, one momma duck had 11 newly hatched ducklings.

sofa

Finally ordered the sofa for the living room... It took me so long because the original piece from Baker is unbelievably expensive. I discovered that I could have it custom made for much, much less. I have to admit, it's a leap of faith to have a sofa made from scratch. So, it'll be only 6-8 weeks before the perfect couch is here. I made a couple changes to the design. It's being upholstered in Beacon Hill's Plush Mohair fabric (color: Shale), which is similar in color to the original Baker photo. Here's a picture of the Baker original.
I can't wait to show you the finished sofa!

more for the living room

Between those two striped chairs, this Vanguard table
and behind the sofa (that I will be ordering soon), on the table two of these Roost lamps
locally, JD Madison carries both Roost + Vanguard

ordered our coffee table today...

On our way home from breakfast at my mom's, we stopped by EWF Modern (a local place) & they had several pieces from the line environment furniture. The online pictures don't do their pieces justice... Even though I will have to wait many months to receive my order, nothing else will do! They have the same kind of wood top on a dining table on their floor... It's stunning! I just ordered (and it will take like four months to get here)...
(yes, we usually visit Hubby's mom on Mother's Day too. This year, his parents are out of town for several weeks visiting places I've always wanted to travel to. They're going to Greece, Germany, Italy and Spain amongst many other interesting places. Maybe someday....)

grief

I haven't been nearly as mired in the muck of grief lately. No, I'm not taking any medications! If you know me, I hardly ever take Tylenol for a headache, let alone prescription anything -- unless it's absolutely necessary - like antibiotics. And even then, it has to be really really bad.

"Keeping busy" was really hard at first (and I still felt the underlying grief). Then the sun started to shine here more (literally). Then, some changes started taking place at our house -- making it more 'ours'. And, during my "keeping busy" phase - I said over and over to myself "You either get busy living or get busy dying". (a great line uttered in the old movie Shawshank Redemption. plus, I think Owen would want me to live.) Don't get me wrong, the sadness is seemingly always there, just under the surface -- but my outlook has felt sunnier, so to speak. Maybe it's the fact that I've now lost a total of 14 pounds (with about 20 more to go). Or maybe it's that I finally felt brave enough to order, frame and hang pictures of Owen. Or maybe it's that I'm feeling brave enough to start work on the headstone design.

Or maybe it's that dream. I have really wanted to have dreams about Owen (for a very long time), but none seem to come. Then the other night I had a dream. I woke up thinking it was Owen, but now I'm not so sure. In the dream I was pregnant and in the hospital to have a baby. I remember being told by the nurse that I should have come in much sooner. Almost as soon as I arrived (and was shown to the room) - it was time to push & the baby was here. This was different from my first (and last dream) of Owen. That dream was while I was near the end of my pregnancy with him. There was much more to that dream - but I'll try to keep it simple. In that dream, he didn't move, had darker hair (this latest dream the baby's hair was much lighter and with a hint of red to it.), and his eyes were closed (with bright vivid blue eyes 'pasted' over them). By pasted over, I mean it was like they were cut out of a book and pasted over another picture in the book, like a stocker's note in the movies. In this current dream the baby's eyes were more of that greyish - murky blue that a newborn's eyes usually are (no pasting). In fact this baby's body and eyes were moving in the usual way that a baby would. In the dream, as I held this baby, I cried and cried -- because of how beautiful s/he was.

it's official!

I love online coupon / promotional codes to get discounts!

I hope you might, too...

I am now a Gina Alexander representative!

Enjoy 10% off any purchase (excluding shipping) at Gina Alexander, when you enter the consultant code 9126456


PS - Did I mention that they're 'Made In USA'!

my new purse just arrived!

How could I not *love* it?

Gina Alexander

Mirror, Mirror...

Those floor mirrors arrived and are 'installed'
(You can see part of the area rug that arrived too)
PS - Restoration Hardware's vendor or supplier is Bassett Mirror...

Also, the curtains were installed in the living room...
I couldn't get the 'overall' picture to come out any brighter...I love this fabric!

Just in case

Just in case one of you are one of the *lucky* 5-10% that make it past one year with your Trisomy 13 or Trisomy 18 child...

Growth charts in both USA and Metric measurements for Trisomy 13 and Trisomy 18 children have been uploaded:

T13 Height (US, Metric)
T13 Weight (US, Metric)

T18 Height (US, Metric)
T18 Weight (US, Metric)

(Here is the original source)

I've had these for a while, but kept forgetting to upload them. (Sorry!)

chairs

I just ordered two of these chairs in a sophisticated striped fabric (it'll be like 8 wks before they arrive).
The striped fabric looks a lot like this, only with a dark brown instead of black...

Vayden and Burke

Sent today...
Hope you enjoy them ladies :-)

Last couple days

J was gracious enough to invite me up to Longbeach, Washington with her. It was the first time since Owen's birth that I've spent a night away from BigBro. (and my first time to Longbeach) I had a head cold, then towards the end of our trip, I started showing the symptoms of pink-eye. I really thought that I had dodged both, then was the last to get them. It was really nice to have some girls only time - and the weather was absolutely perfect on top of it!

My Story (part seven)

Okay, so I re-read some of the other segments of my story just before writing the next one... I try to make sure that I am all-inclusive of the events, conversations and feelings. I am honestly writing this, because I want other expectant moms (that have found themselves in the same or a similar situation) to know that what they are feeling or experiencing is normal (for a not-so-normal circumstance). I know it doesn't make the early grieving or anxieties go away, but isn't it nice to know that someone else survived this ordeal? Reading other's stories helped me feel hope. Hope that we would make it to term. Hope that I would get to see his eyes open and staring at mommy, daddy or big brother. Hope that I would get to hear his weak cry. Hope that I would get to bathe him or change diapers without getting peed on. Hope that we would get to take him home (even if only for a short while). I could go on about my hopes, but honestly this list includes so many things that I didn't get to experience, it makes me too sad.

New to My Story? You might want to start here.

********************************************
Getting back to Dr. Winkler... Because Ward referred me to him and Ward knows him, I know some things about him that I, otherwise wouldn't. (If Dr. Winkler ever reads this - Ward never uttered a word - professionalism and all. It was Sharon, his wife, that told me.) For privacy reasons, I won't get too specific, but I do know that one of his children died after battling cancer. Dr. Winkler, too, knew what it was like to grieve the loss of hopes and dreams. So, I understood all along, that as much as he tried to be cold and calculating (I imagine him going into work saying over and over to himself, "It's just a job. It's just a job. It's just a job."), it was to hide his own pain. Undoubtedly, seeing my husband and I go through the heart-breaking decisions and early grief brought out his own grief (even though he was trying to shield himself from it). That's why after all of our disagreements, I don't hold it against him. Doctors are not God. They are human too. He falls short, just like I do. I feel that Dr. Winkler turned his back on the lessons that he could have learned from Owen, BigBro, Hubby and I. But, there will most likely be other patients. Maybe one of them will break through his crispy shell. We failed. And, I will say this about him - he has a great sense of humor and a heart of gold. He probably doesn't realize that I could see through the pretense.

Then, there's Dr. Winkler's nurse Trish (Patricia Shaw)... Every appointment, she treated us like we were normal - not a 'sad cause' or freak show. And my favorite part was that she always said Owen's name over and over. She would talk about how his heart was beating well, or how he was kicking up a storm. Dr. Winkler would always just call Owen 'the baby'. The doctor is lucky to have had Trish follow him for (in my estimation) over ten years from hospital to hospital. I remember her saying that she did also moonlight in Labor & Delivery (on weekends and holidays) over at St. Vincent's.

So, while all of the last six chapters of my story were unfolding. We also had some other things running in the background. 1) I redesigned and reorganized my husband's website. No, I didn't do the techie stuff - we hired someone for that. I just took what was existing and completely overhauled it. For privacy reasons, I won't link to it here. This particular project stole countless hours from my days with BigBro in the month leading up to Owen's birth. 2) We had been looking for a new home for our business for a very long time (years, really). And the right place landed right in our lap. We were due to sign some paperwork exactly when we found out about Owen's possible condition (June 18, 2008). We delayed the big decision a bit, but ended up signing the final paperwork just two weeks after Owen was born, then passed. Oh, wait, I'm getting ahead of myself! 3) I was tired of being apathetic to our country's take-over (of the unconstitutional sorts). I had also just become more involved with politics and - was elected as a Precinct Committee Person (PCP), was a delegate to the Oregon Republican Party's State Convention (platform caucus) and attended the Congressional District Convention (where we chose Oregon's delegates to go the the Republican National Convention - which, by the way, was a complete farce / staged dog-n-pony show. And, yes, I refused to put John McCain signs in my yard.). 4) We were doing a small (which really turned out to be huge!) remodel. So, we had dirt, dust and work people everywhere. Think: paint, carpet, lighting (that's permits, electrical and drywall) and a splash of wallpaper. I don't want to get too into it, but the mini-disaster, did end up looking really beautiful. Hmmm... Mini-disaster, isn't that what all home remodels turn out to be?

There are two other short stories here:

1) (Okay, it's a little longer than I thought it would be) Now I Lay Me Down To Sleep (NILMDTS) was suggested to me (by Katie). Which, at first, YES, seemed a morbid thing to do. Take pictures of a baby after s/he might have already died. Plus, there was that whole 'stranger' thing. How could we let a perfect stranger into such a private moment in our lives? (we really are very private people - this blog is so not what I ever would have done pre-Owen). I read the stories here, here and here. After crying over these sad stories and beautiful pictures, I was convinced that, "Yes, I do want a photographer to capture our brief time with Owen". But, still, the stranger thing. Before we moved into our current house, this was our next door neighbor for many years. I'd had Joni take pictures of BigBro before, so I knew she was a really gifted photographer. I hadn't talked to Joni for a few months and couldn't tell her our situation over email, or over the phone. When we had talked over the phone, I learned that she, too, was being molded and shaped during her own trying time. Her father was very very sick and she needed to go, see him and support her family. (He ended up passing away about a month before Owen was born) After hearing that she was traveling a tough road too, I just couldn't dump mine on top of it. I thought, "Well, hey - why not contact the NILMDTS area coordinator & connect with a photographer. I can always purchase a maternity session from them and see how I feel about later inviting this person to the hospital." This is whom we ended up meeting. Denyce was wonderful. She was so caring, and sensitive to our situation. After meeting her and seeing the proofs from our maternity session, I felt good about inviting her to the hospital. Turns out, Denyce and Joni know each other. Joni had signed up to volunteer for NILMDTS and had yet to be called to her first session. Joni ended up joining Denyce and assisting her with lighting and positioning for Owen. What a small world! If, you too, are uncertain about using a NILMDTS photographer - I just can't encourage you enough. Photos are such a tangible memory to have! If you haven't already found it, here's the link to the photo slideshow that was shown at Owen's service.

2) We did scout out a couple different cemeteries in the two months before Owen was born. I was actually leaning towards cremation, but Hubby really wanted to have a place to visit (burial). If we were to have a burial, I really wanted us to all be together (purchase adjoining spots). This is where we ended up. It's the oldest public (non-profit) cemetery in the Portland, Oregon metro area. It also greatly discounts it's fees for the burial (or cremation) of any child under the age of two. We answered many of their questions about our wishes (for them to keep on file) and picked out folders (that's what they hand out at the service). I just couldn't bring myself to pick out a casket. I was tortured with thoughts and guilt over whether I was really holding out hope if I chose a casket before my son was even born. After a week in the hospital, I chose this one. It's the style on the right - only without the Noah's Ark embroidery. I also preliminarily designed (and had gotten a quote from) someone to send out special birth announcements. Since Owen didn't come home from the hospital, a few changes needed to be made - and this is the lady that did them and this is what they ended up looking like. Still, we have yet, to pick out the headstone. I've got a little time. We were planning on having the stone laid at his one-year birthday.

To be continued... (I promise, the next segment will be longer)

Megan & April

Sent today...
I hope you like them ladies!

Update -- June 14, 2009 --
I spent the better part of yesterday investigating why April's momma's blog was entirely deleted. Turns out I sent a care package (including the 'April' bracelet above) to a scam artist! I can't believe the gall of Ms. Rebeccah Rose Beushausen -- aka "B" or "Beccah" -- what on earth would compel someone to make up such an elaborate lie about such an unfortunate circumstance as losing your child? I, for one, pray that she gets the mental help that she needs.

Happy Six Months

So many times this day has come and gone.

The 13th of every month.

This sixth month anniversary hasn't been nearly as emotionally draining as the others. I wish I could explain it, but I can't. Yes, of course I miss him terribly. And, somehow I know I shouldn't be sad -- he's in a much better place. I just wish time weren't so definite. Because of the sun and moon we know exactly what a whole day is, a whole month is and because of the seasons we know what a whole year looks like too. And we are reminded how long that seems. Isn't it weird how we can look back (sometimes years later) and say to ourselves, "What was your rush?", "It may have seemed like forever, at the time, but it was almost nothing". Like, maybe someday (in a very long time), when I am together again with Owen. I will probably say those same things to myself.

What was your rush?

It may have seemed like forever, but it was the blink of an eye.

Happy Easter

Happy *bittersweet* Easter... We had planned to go (yesterday) to Heather's house to join in the fun at her big backyard Easter egg hunt. But, BigBro was sort-of showing the symptoms of pink eye Friday night. Then, sure enough, Saturday morning, when he woke up, BigBro's eye was practically glued shut with eye boogies. What followed, were multiple, "Don't touch your eyes!" and "Go wash your hands with soap and water" and "Stop rubbing your eyes. Now you have to go wash your hands again". And, we had a big long wait at the urgent care clinic. For those of you that don't know (or haven't thought about it) - anytime you go to a new doctor's office, there's always a whole lot of paperwork to fill out. And, for pediatrics - the forms almost always seem to ask for the names and date of birth of all siblings. On this form, immediately below the siblings table it asked (and I'm paraphrasing here, because the exact phrase isn't etched into my mind), "Have any of your children died?", followed by two check boxes - No or Yes. Why, do these forms ask about siblings? What is the significance? Isn't it enough to know if the patient has a history of health problems, allergies and what the present complaints (and medications taken) are?

Can you say, "ouch"? And I managed to hold it together the whole time.

On our way to pick up BigBro's prescription I called & updated our RSVP to Heather's as a "So sorry, but we can't come. I'm sure that no one else wants pink-eye."

BigBro was so disappointed.

designing a bedroom

What goes with this bed...
this armoire
this chaise (only imagine no skirt, with turned legs & chrome casters + masculine houndstooth fabric)
this nightstand
this lamp (in an oil-rubbed bronze finish)
this lamp (silver sage shade)
and a lamp w/tray, curtains and sheers that you'll have to wait until I take pictures (because Pottery Barn doesn't sell them any longer)? I would have taken pictures today, but first I have to clear the mountain of laundry off the chaise - and make our bed.

I just added this pendant (the larger one in the first pic w/ the shade color shown in the second pic)

and an antique chinese bench (not an online purchase - can you believe it?)

I am trying to decide what to do for two different art displays. I really like the idea of several of these wall plaques grouped together. I also like some of the blik wall decals, but who knows what I'll end up with. Suggestions welcome. I'll post something when I've picked out something.

odds-n-ends

Shannon- Thank you for such a wonderful 'Thank you'! I was soooo surprised, when I opened my mailbox... You made my day :-)
See, I'm using those adorable stamps already!
++++++++++

BigBro turned four and we had a big birthday celebration last Saturday. His birthday was a big hit! Literally, I suppose. We had a blue convertible-car-shaped pinata. All the kids had several big whacks and the thing just wouldn't break open. Finally, an adult had to take a couple swings at it and then, candy and toys dumped out. We also had a great magician! He entertained adults and kids alike. I'm so glad that we had nice weather, because we were able to play outside too. It took a while to recover from the festivities - I finally finished cleaning our house yesterday. (pictures coming soon)

++++++++++

I finally picked six photos out of the 100+ pictures of Owen (our NILMDTS photographer was Denyce at Something Blue Photography) to order. They came in quickly and I just picked up the frames and mats. I think we'll hang them this weekend.
++++++++++

It's so odd. The waves of grief. The last two weeks have been so much better than the previous two. Sometimes I understand and other times I can't find the reason why.

++++++++++

On to, my next 'project'... Another phase of our house. We have lived in this house for about a year and a half and we have done quite a bit to make it 'ours'. And, yet there is still so much more to do! If it'll give you any hint at all - we lived in our last house for nine years. Over that time, we slowly did things to make it 'ours'. When I look back at it, I'd say we did everything to that house. You name it, we re-did it.

Most of my friends are not really 'into' design, so - this is just me, keeping busy with something I like. I've added a different links list - 'design links'. I know Heather will enjoy them. (In case you didn't know - I don't really watch TV, but have to admit, I love Candice Olson.)

Currently, in my living room is an area rug. Yep, that's it. A few accessories we brought over from our old house on the shelves, but no furniture. It's a patchwork hair-on cow hide rug that I bought here. If you think you might want one, I have only one piece of advice - these are best for 'pet free' homes. I just can't keep our dog from laying on it. I think it's the smell.
So, here's what is coming

Some curtains that I won't be able to post a picture of until they arrive. They'll be on rods with neato square finials...
Oooohh - and this sumptuous settee will be coming soon too.
Then, there's our dining room... Oddly, it's actually much closer to being complete. For starters, here's the rug.

Here's the chandelier

My dining room table and chairs are no longer manufactured and I only have a picture of the set in my old house. After everything's put together, I'll take a picture of the finished room (it'll be at least six weeks).

These are pictures from the manufacturer's website, so these pieces are still in their product offering, but also in my current dining room are

this sideboard (ack! I wish Blogger would let me resize the image!)

and this buffet (just the bottom part - I didn't want a china hutch)
And, currently on order are some other curtains that I can't show you a picture of (until they arrive) and the same rods w/ neat-o square finials (same as the living room above) and a really great floor mirror.
more design stuff later, after I've pieced together more...

Prayers answered, more prayers needed

Prayers have allowed Kristine, Luke and big sister Kyla to have 13 wonderful days with baby Leah. Won't you please pray-- say a special prayer, right now, that she will continue to know love from her family and never know pain or suffering? That God continues to grace Leah and her family with peace, love and comfort?

Another Blogger's Goodie Give-a-way

These are made by a very talented local woman (Michelle lives in Battleground, Washington). She has a blog store, an etsy page and also sells the cutest clocks to lots of boutique-type stores. Enter her contest here! Good Luck!

And Riley

I hope you enjoy what was sent today...

My Story (part six)

First, I want to say how sorry I am that this installment of my story has taken so long to be written! I still haven't received the copy of my chart that I had requested -- and -- I have one heck-of-a train-wreck-of-a life. It's like quick sand. The harder you struggle to pull yourself out-- the deeper it sucks you in. Plus, I've been trying to keep busy - it keeps my mind focused on things other than sadness. My 'busying' is mainly getting out for play opportunities for BigBro and (finally!!!) ordering some draperies / furnishings for our house. The living room has been virtually empty since we moved in (over a year ago). So, I guess you could say it's about time! (Although, honesty, I'd give up everything and live under a bridge -- if you could make such 'trades' -- for Owen to still be here, with us.)

Drum roll, please.

New to My Story? You might want to start here.

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In between that first appointment at Dr. Winkler's and Owen's eventual birth a lot happened. We had our fair share of prenatal visits, ultrasounds and lots and lots of disagreements with the doctor. Many days BigBro and I would discuss Owen. BigBro would say the sweetest things. He wondered if we could just put the boo-boo buddy (cold pack in our fridge that looks like a puppy) on Owen and that would make him better. BigBro also surmised that any of the other myriad of things that we do for BigBro when he is hurt or not feeling well would surely work on Owen too. (think: rest / sleep, cuddling, kisses, humidifier, thermometer, band-aids, Tylenol, etc) It was heart-breaking explaining that there are different kinds of 'sick'. That, just like auntie Gail or grandpa George whom were very very sick, some things can not heal or be fixed -- inevitably leading to the person dying.

In the last two years, we have had two deaths in the family (one on my side and one on Hubby's side) and one close friend's father pass. I feel like those deaths had helped prepare BigBro a bit for what was to come with Owen. BigBro & I had several talks about those deaths and over the last 3 months before Owen came about how Owen was 'sick' and might not come home from the hospital. (Before we found out about Owen's condition, we had been telling BigBro that there was a baby growing inside mommy's tummy and he was going to have a baby brother or sister in a few months. So, we couldn't start ignoring the new baby. Owen was already a part of BigBro's life.) My hope is that BigBro will never have a fear of death & that he will see death as just a part of life. We talked about death and I tried to explain my beliefs (as best as I could) so that a 3 year old would understand. Since we moved into the house we're in now about a year ago - I talked to BigBro about how our body is like a house & we all have a soul that lives on forever and when someone dies, it's like their soul just moves out of their house and will move into another house someday. And, someday, when we die, we will see others that died before us, again. He seemed to really understand that explanation. I also tried to stress the fact that it will be a long long time before mommy & daddy die-- because we have to take care of BigBro & see BigBro grow up and have babies of his own before we go. (I didn't want him to fear us dying too).

On the front lines with the doctors... After all the discussions that Hubby & I had about our wishes and me piecing together a birth plan. I had yet to speak with our pediatrician or a neonatologist, but I had printed it out and brought it to my second prenatal appointment (with Dr. Winkler), so that we could discuss it and get some answers to our questions. He did not wish to read our birth plan and had no intention of reading it -- EVER. In fact, to this day, I honestly don't think he ever did read it. Also, on our first or second appointment (or even possibly both appointments) I had mentioned to Dr. Winkler that my attitude of having a c-section was that "it wasn't the end of the world" (even though I'd never had any sort of surgery and was very scared of what the pain and recovery might be like).

In between the second and third Dr. Winkler appointments Hubby & I talked with our pediatrician (Dr. Hadeed). We had a better idea of the challenges that our son might face and what sorts of medical interventions might be undertaken (as well as how those might feel for an adult). After our discussion with Dr. Hadeed, I was actually leaning towards not risking the amnio at all.

It was on our third or fourth Dr. Winkler appointment (when I was just over 29 weeks) that I felt ready to tell Dr. Winkler that we weren't going to do the amnio at all. Surprise, surprise -- he (Dr. Winkler) had other plans. We started the appointment in the ultrasound room (checking Owen's heart because Dr. Winkler refused to refer us to get an echocardiogram) and discovered that my amniotic fluid was starting to measure high. I officially had polyhydramnios. When the doctor came in to discuss this ultrasound finding, he pressured us into the amnio right then and there. I normally don't succumb to pressure (in fact, a cornered opposum comes to mind), but he told us that unless the doctors knew the chromosomes for sure, they (the doctors) wouldn't honor our birth plan. Remember, the birth plan that he never wanted to read and hadn't read at that point? (I know he hadn't read it because although I offered to give him a copy and discuss it, he wouldn't even take a copy to read later or put into my chart). Dr. Winkler told us that whatever we didn't want the doctors to do would be done to Owen (even to the point of futility) unless we did the amnio and knew the chromosomes for sure. I just couldn't bear the thought of the doctors making Owen suffer against our wishes. I said a little prayer and allowed the amniotic fluid to be taken. To any pregnant ladies reading this that haven't done the amnio: the doctor tells you that it feels like a little poke and then some cramping that only lasts a couple of hours... What a load! The cramping was very severe for the better part of two days. At this appointment, they never did do the things I requested (I wanted to know how Owen was measuring, how his lung mass was measuring and we were supposed to check whether he had a VSD or not). And, there is still a part of me that wonders if he was just pressuring us to do the amnio - or if he was telling the complete truth about doctors not honoring parent's wishes.

I had received a phone call from Trish (Dr. Winkler's nurse) two days after my 29 week appointment letting me know that the FISH results were: 90% of the cells were full trisomy 18 and 10% did not flouresce. They were pretty sure that the full karotype would come back full trisomy 18, but there was a small chance that Owen could be slightly mosaic. They explained that because the amnio had been done later in pregnancy that there are more cells that don't grow (like waste from the baby / cells that had already died) and acquire the floresence from the bacteria.

At my 31 week appointment it was the same story. I came in with a list of questions and they again said that we'll look at those things at the next appointment. I asked when they were going to do the random blood sugar check as well as check my blood iron level. Oh, yeah, we'll do that (they forgot). I also asked about fluid reductions (or therapeutic amnios as some doctors call them). Dr. Winkler said that the fluid comes back within 48-72 hours, so they don't usually do anything about the extra fluid unless I was in preterm labor or having trouble breathing. All they were going to do at this appointment was give us was a copy of the genetic karotype letter. Which incidentally said in one part that we were having a boy and in another a girl. It also said that the baby was full trisomy 18 in one part while showing there were 46 chromosomes (impossible with a trisomic diagnosis). Dr. Winkler obviously hadn't read the letter (and honestly didn't really care about us, the patients. We were merely a diagnosis to him). He said that they would get a corrected letter for us at the next appointment. They also scheduled us to see the neonatologist (Dr. Breton Freitag) immediately after. Dr. Winkler's office scheduled this appointment without previously informing us. Hubby had come to this appointment and was expecting to get back to work after only an hour and then this was sprung on us. Hubby was so mad. We would have arranged for BigBro to be with a friend or family member if we had known that we would need to be at the doctor's for so long. I do believe that Dr. Winkler is a good person. In fact, I would say he has a heart of gold. It's just too bad he treats patients like me like "it's just a job". Like he just works at some great big baby factory. No miracles involved. Just a job to be done. Truly, his heart just wasn't "in it". At my 31 week appointment, I remember well that when we were talking about Owen and him being a "him" (boy) -- Dr. Winkler said, "Oh. It's a boy? I don't pay attention." And, he was seriously not joking around. (Sometimes he would joke around when he first came in to see us at a prenatal visit and say, "Hey, do I know you?")

Let me interject here. Dr. Freitag was wonderful. He was able to look past our squirmy, whiny three year old and focus on us. Our wishes, our plans, our questions. He was obviously sweating bullets (when I shook his hand it was cold and clammy), but he was of the mind set that he would make sure that he completely understood our wishes and communicate those wishes to all the other NICU doctors. Absolutely all of our wishes would be honored. He also explained even more about medical interventions to us (more than our pediatrician had)... And if I had to do it all over again, this is what I would have done differently. I would have met Dr. Freitag much much sooner. He is the one that helped us finalize our birth plan. Then again, he was the only doctor that actually looked at it. I think instead of "Medical Director, NICU" the new subtitle for his business cards should be: Care and compassion served daily. Anyone that lives in the Portland, Oregon metropolitan area that might need NICU care: The drive to the Legacy Salmon Creek Hospital in Vancouver, Washington is totally worth it! Check them out! They have great doctors and each baby has their own large room in the NICU. St. V's and Emanuel don't. At those two hospitals the NICU is one great big room with (no privacy) rows and rows of babies in isolettes. (One other side note about this discussion with Dr. Freitag: I asked him not to give private information, but generally, when was the last time that they had a Trisomy 13 or Trisomy 18 baby (at the Legacy at Salmon Creek)? A year and a half ago. That explains the 'sweating bullets'.)

So, after asking and asking Dr. Winkler and not getting answers or getting blown off... Plus, he had definitely brought up the c-section thing. Oh yeah, let me tell you about that. Over the course of three or four appointments he went over (and over and over!) how a c-section is a major abdominal surgery (yes, it is and you do them everyday) and what all the possible complications could be. How he could nick my bladder and I could have bladder problems the rest of my life. How he could nick my bowels and I could have bowel problems the rest of my life. How I might have to have a hysterectomy to save my life and never have other children. Which wouldn't matter anyway, we aren't having any more. And on and on. Everytime we had this discussion, I explained that as a woman, everytime I get pregnant, I know that "this could be the time I end up with a c-section". And, all the risks to a c-section that he mentioned were the same whether the child I was carrying was normal or not normal. Dr. Winkler also tried, several times, to use the argument that, "Trisomy 18 is a lethal chromosomal abnormality and the baby is going to die anyway". As much as he tried to shove down my throat that it wasn't what he recommended or what he wanted to do (he wanted me to refuse fetal monitoring and refuse a c-section) -- I shoved down his throat: I will try for a normal delivery, but if Owen comes under stress and it means the difference between him being born alive or not -- then I would want a c-section. Also, to help him understand that I did understand what it meant to have a baby with Trisomy 18, I also explained that I was well aware that Owen could live for only a few minutes and that I would accept whatever time we were given. I even went as far as to explain that I knew that meant Hubby maybe the only person with Owen (and making all of the decisions about Owen's care) while he's alive because if he did live only a few minutes, I would still be on the operating table being sewn up and would not be able to see him until after he had passed.

Because we had argued the same argument over the course of several appointments, I finally had enough and put it bluntly: I understand that a c-section isn't what you would choose for yourself or your wife, but if that time comes -- Are we going to have this discussion again - or are you going to honor my wishes? (If I didn't receive a 'Yes' or 'No', I was ready to walk out and, yet again, find a new doctor) Finally, a reluctant YES. You'll be happy to know that at subsequent prenatal visits, this subject never came up again - yeeeeaaaahhhhhh! (Maybe it was because in my attempt to explain that I wasn't like all of his other patients - WE both discovered that we are both Republicans)

Continued...

Okay

So, it's been quiet here because my life just seems like such a train wreck. We busy ourselves everyday, but very little is joy-filled and 'fun' for me. I've started a post on my story (part six) and need to interject this open letter to the other mommies in my son's playgroup. Because I just can't seem to fall asleep until I let out how I'm feeling.

I admit, I am a basket case. The trivial superficial talk one needs to undertake in order to find things in common to, thus build a friendship upon are really really hard for me. This coupled with the fact that even the people that I thought were my friends don't call or email anymore (hardly, if ever). No one knows what to say. They don't dare mention my dead child and gee that might come up, so better not to call or write at all. I discovered that I only have one really good friend (and a really wonderful husband). It's only been almost six months since my son died. So, yes, I am lonely and sad. Then, there are things (trust me, you can't even imagine what or how many things) that I hear, see or otherwise encounter that remind me. They are sudden things that you just can't plan for (emotionally). Like I can avert my eyes from the baby section when I'm at Target -- I can even plan a whole route through a store to completely avoid such sections. But, I didn't plan to be reminded and feel sad when I saw a baby wearing the exact same outfit that Owen would have worn (if he were still alive). And I didn't plan for a handicapped child to come in to the play area at the mall. Seeing him reminded me of where I wished I would have been in five years. While I'm sure there are days that are hard raising such a child, I still wish (with all of my heart) that were me. I'm not sure you understand the gravity of losing a child. The months of anxiety and the emotional rollercoaster until finally the day you give birth. I didn't just pack my suitcase (to go to the hospital) full of clothes, there were many hopes and dreams packed in there too. They were different hopes and dreams than what one would normally "pack" when going in to the hospital to deliver a baby. And, yes, I realize that whether he had lived two hours or six months it never would have been enough. And, honestly, being prepared doesn't really prepare you.

I am in the playgroup because my happy, go-lucky and respectful living child needs to get out of the house and play. You don't have to like me, in fact I'm not asking you to like me. Heck, I don't even like me right now. I am no stepford wife, but I don't swear, yell at or hit any children. My house is safe, clean and has lots of room to play. So, I don't really understand why you won't come for playgroup at my house.

Boy, oh boy

Sent out today...