Tuesday, March 31, 2009

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!

Monday, March 30, 2009

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.

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)


Thursday, March 26, 2009


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.

Wednesday, March 18, 2009

Boy, oh boy

Sent out today...

Friday, March 13, 2009


I had a great time at Wicked last night with J. It's how the story of the Wizard of Oz should be told! The sets, lighting and costumes are grand, intricate and impressive. Please, listen to the last song (click song number 9 titled 'For Good').

Tuesday, March 10, 2009

Of courage and strength...

When I was pregnant with Owen, some people would make comments about my "courage" or "strength". I found these somewhat puzzling (not hurtful, just odd). It's not like I picked or pre-planned the exact circumstances of the situation (I mean, really, who in their right mind would choose to get pregnant with a child that would die shortly after birth?). Mostly, I responded with "Since when is the right thing to do the easy thing to do?" It's not like I'm some saint or anything. I have no doubt that there's beauty in the overall tapestry that is woven of the lives that we intermingle with... But, I wonder: If we could see the bigger picture that He sees, would we still choose to undertake the same path in life?

Earlier today, I received a phone call from my aunt: Big surprise- my cousin just gave birth to a baby boy. She's (my cousin) quite a bit younger than I and due to the circumstances of my upbringing, I chose to avoid deeply hurtful meaningful relationships with most of my family members. So, we’re not really close. With my cousin, I admit: the distance has continued mostly because my judgementalism gets in the way. What do I say to someone in their early twenties that has popped out four kids (all illegitimate and of different fathers), has never held gainful employment (with no aspirations thereof), lives off the teat of the taxpayer (Oregon Health Plan/welfare/food stamps), decided to give up care of her first child to another family member (apparently full time neglect of one child didn't pay enough) and opted for full time neglect of twins instead? Oh, that's right, she gets paid for all three while only having to neglect two. Neglect is a really hard job after all. It’s really not right for me to judge. I felt like the right thing to do was go & visit her in the hospital & say “congratulations”. So, I plastered a big smile on my face and walked right in her room to say just that. It was late (after dinner), so I couldn’t stay long. He is such a beautiful baby boy (which was the only other thing I found I could say to her). I try for genuine honesty, while heeding the old “if you don’t have anything nice to say, then don’t say anything” mantra. Life just doesn’t seem fair, so of course the tears flowed on the way home and stopped just before pulling into my driveway.

So, rounding out my courage and strength post, I want to say this:

Dear Cousin,

Please consider carefully – accepting the great love of our heavenly Father. Only He can wash away our sins and hurts. Only He gives the courage and strength that we need to overcome our past abuse and properly love / nurture our children. In the depth of the darkest days, He does shine light. It’s called hope.

Conversations about death with an almost 4 year old

Riverview Cemetery (Portland, Oregon) is where Owen's grave is... It's fairly close to our house, so we pass by the entrance on our way to other places pretty often.

Today, as we passed by, BigBro asks, "Are all other people's babies at the funeral home?"

Me, "There are lots of other people's babies in the cemetery, but not all babies go there."

BigBro, "How come not all?"

Me, "Well, only babies that die go there. Most babies don't die, so they get to go home from the hospital."

BigBro, "So, it's all people's babies that died that go there?"

Me, "Yes."

Thursday, March 5, 2009

Two more

Here, two more

Is anyone else thinking of starting a perinatal hospice?

In case any readers don't have a perinatal hospice in their area & if you feel so inclined - I have uploaded several articles listed on the perinatal hospice website.

Please, feel free to download away + ask any questions about my efforts to get a perinatal hospice started in the Portland, Oregon metropolitan area.

Wednesday, March 4, 2009

A small get-away

Hubby, BigBro and I went to Cannon Beach for a few nights. This is the place we like to stay at (because they allow kids and dogs)The weather forecast was rain, rain and more rain...

The bright side: it rained very little and mostly at night

The not-so-bright side: BigBro and I caught a cold just before we left

It was very nice to spend time together, just the three of us and if any of us had to be sick -- at least there were lots of helping hands.

Two evenings ago, we spent time on the beach: catching sand shrimp (I don't know what they really are, but it's what we call them), throwing rocks in the water (little rivers of storm water running across the beach and into the ocean), and trying to keep Stanley from killing any seagulls. As I stood there, the sun was setting, the clouds were low and patchy, the wind lightly gusty and cold -- the sun had literally set the sky and clouds ablaze in red, yellow, blue, purple and orange. I looked west towards the setting sun and felt like I was floating. Aren't His creations wonderful and awe inspiring?

This morning I walked Stanley on the beach. It was cold, but not as windy as some of the other days. The sky was blue and crystal clear. Then I noticed. When the tide is going out, the ocean will often leave ruts or troughs in the sand. If you focus on one of the ruts, you'll see that they aren't exactly beautiful, but if you look up and see, hear, feel and smell the whole picture... It's absolutely breathtaking. I especially loved how wave after wave flowed over the sand forming many ruts. In a metaphorical sense it reminded me that, like a wave, one life can wash over and touch so many other lives.

I am not usually one to buy those kitchy, cliche plaques that many people adorn their home with, but i couldn't help myself.

Last, but not least, I uploaded some pictures of our fun on our picture sharing blog.