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!)

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.

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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)

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...

My Story (part five)

New to my story? You might want to start here.

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As I look back on those first 2-3 weeks after our quasi-diagnosis (it's not really a diagnosis until the amnio results come in), I remember: how frightened I was, the discussions no husband and wife ever dream that they'll have, the not knowing, the waiting, reading and absorbing other's stories and all the medical things I had to learn. At Katie's suggestion, I joined a trisomy medical list-serv to better understand some of the many medical challenges. I was so worried about the future (which I never had any control over), I wish I had focused more on the joy of being in the moment: I was still pregnant and my child was still very much alive. I sometimes long to have the emotional roller coaster back - just for one more day with him. Instead I had spent so much time worrying. Did he have a VSD, or not? What was his lung mass & how would it grow/change over time? Would he need oxygen? Would he start measuring small for gestational age (IUGR)? Would the choroid plexus cysts start shrinking or growing? Did he have rocker bottom feet? Would we make it to term? Would he develop fetal hydrops (and, in turn, would I develop MIRROR syndrome)? Would I develop polyhydramnios? Would I go into preterm labor (if I did, would the doctor prescribe magnesium sulfate, or insist that we 'let nature take it's course')? Would the placenta abrupt? Would I develop pre-eclampsia or gestational diabetes? Would he need a feeding tube? Would he have the apnea problems? Would he have digestive problems? Was his esophagus connected to his stomach? Did he have some other problem that we didn't know about? Would we bury him, or have him cremated (which involved a whole other set of who? what? and where?)? Would we hire a nurse to come help us at home? Should we set up a whole nursery? How do we tell BigBro?

It was also within those first few weeks that we decided that we just couldn't argue over a name this time... We needed to agree on a name - and - the sooner, the better! Miraculously, after just a few days, we agreed on Owen.

Before our appointment with Dr. Winkler, Ward and I had discussed amnios. I was pretty much opposed to getting one before 28 weeks, yet wondered why all the pressure to have it right away? After all, I am open minded (stop snickering Hubby), was I missing something? What benefit(s) outweighed the risks? I felt like we had already 'hit' the odds lottery with Trisomy 18 and, gee, did I want to 'hit' the odds lottery on the amnio risk too? It's funny how doctors will get information from other doctors that they don't ever tell their patients. Even though I hadn't been through all the years of schooling and residency, nor did I have overwhelming debt from college - that doesn't mean that I'm dumb. Just ignorant. Meaning that I do possess the capacity to learn something new. Fortunately, Ward treated me like an old dog that could learn new tricks! So, one of Ward's doctor friends shared that while many studies point to a 1:200 - 1:300 chance of losing the baby from an amnio. These studies were of pregnancies around 20 weeks gestation. There have been other studies that show that there's a 1:100-1:150 chance after 26-28 weeks. Aha! But, I still remained unconvinced to play the odds lottery. I have to say: Why do the amnio at all? Especially if the patient is not in denial & is already preparing for the 'worst case scenario'? (you'll read more about this later)

I ordered copies of all of my test results and ultrasound reports (funny how labs and doctors don't ever give you, the patient, all of the information - in writing - unless you specifically request it), then brought them to Dr. Winkler's office. After filling out all of the obligatory new patient forms, signing the appropriate disclosures, submitting all of my prior reports, peeing into a cup and ugh - getting weighed - Hubby and I were ushered back to the ultrasound room. The ultrasound technician didn't take nearly as long to look Owen over, then we were moved into another room. Here, we met Trish and Dr. Winkler. Dr. Winkler went over the previous ultrasound report and this day's findings. He never once mentioned termination and agreed that we could wait to do the amnio. He openly and honestly answered all of our questions. I was so happy this doctor wasn't like the other doctor! One thing the ultrasound report from NW Perinatal listed (and the doctor never mentioned) was that the stomach was 'not visualized'. Thank goodness, this time, the ultrasound technician had no difficulty in finding it. Also, this time, they weren't really sure if there was a VSD or not. Hmmm. I guess we'll have to answer that one later! The other surprise was that the doctor from NW Perinatal had mentioned that whether we knew the chromosomes or not, I was to see them every two weeks irregardless. Dr. Winkler allowed us to keep to the once a month prenatal checkup schedule until we were further along. I think it wasn't until 28 weeks that we switched to every other week checkups. Nothing was really new - they were seeing the same 'issues' on the ultrasound. So, one other question I asked Dr. Winkler (I never mentioned the conversation I had with the doctor at NW Perinatal) was, with all of these soft markers, what did he think was the possibility (%) that our son had Trisomy 18.

Brace yourself.

Dr. Winkler said that he thought the possibility was ninety percent. He said that there was about a 10% chance that our baby has normal chromosomes, but that even with normal chromosomes, the baby still wouldn't be normal and probably still had some other type of syndrome. Wow, my suspicion about the doctor from NW Perinatal had been right! I had this deep, gut feeling that he was purposely under estimating when he said 5-30%, then upon my pressing revised it to 30-60%!

Continued...

My Story (part four)

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

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In case a genetic counselor or perinatologist (of the same mindset as those at Northwest Perinatal) ever reads this: First, let me say how wonderful it is that you are intelligent and highly skilled at an emotionally challenging profession. Honestly, you are not paid enough for what you do! If I could go back and have a cup of coffee with you (you're invited! call me 503-335-3453 and I'll totally buy you a cup of coffee), here are the broad strokes of some things I would like to tell you: Number one - never lie or exaggerate to get a patient to do what you want them to do. It's really your job to educate the patient as much as possible (offering support for either decision / outcome) and allow them to make the decision that is best for them. Number two - life philosophy. If you found out today that your three year old had a devastating illness, with only three months to live - would you push him/her in front of a bus tomorrow? If you could go back in time, would you have advocated for aborting that child, because they were going to live a short life? To both of these, I sincerely hope you would say "Of course not! I would cherish every second with him/her!" You really need to rethink your approach with patients facing a diagnosis that is difficult. Difficult diagnosis or not - I want to cherish every moment that I'm given to parent my child - please provide support, encouragement or, minimally, resources to help me along the way. Perhaps you are 'pro-choice' because you feel that not everyone would be willing to care for a disabled child; or maybe you think that people facing a difficult diagnosis would find it easier to 'say goodbye early'; or maybe you philosophically believe that anyone 'not perfectly normal' (however rigid your definition) is a drain on society; or maybe one of you would be willing to leave an anonymous comment (I do allow those) explaining your exact reasons - I would love to have the philosophical debate! Did you know that there are huge waiting lists of folks that want to adopt handicapped children? I am pro-life because I believe that every life is wanted and very loved by someone. Have you ever done a study of your patients that decided to terminate - a year later or five years later? They did experience a loss, but because most of our society is pretty judgmental - I'd be willing to bet that they are not 'allowed' to openly talk about their loss, or they have to lie about the circumstances of their loss. To me, it seemed like the folks at NW Perinatal were pro-termination, not pro-choice. They offered absolutely no support for carrying-to-term, only spoke about the negative aspects of my child's diagnosis and, in fact, expected (or it was a given) that we would terminate. Granted, the negative things did need to be spoken of (so we would be prepared for our child's possible needs) - BUT you mentioned nothing about the positive things and nothing about the 'choice' of carrying to term, or support for carrying-to-term. Plus, I find it unfathomable that you would present the only option of termination, without explaining exactly what termination entails. If, truly, you respected your patient's right to choose, then you would present it as a choice... That means the good with the bad!

The last thing I want to talk about is, whatever your religious beliefs - You are in a wonderful
position to grow spiritually. I believe your job is very tough (life and death involve highly charged emotions). This is not just a job, stop treating it like it's just a job. If you would allow yourself a heart connection, love and compassion for any of the patients that walk through your door - you will learn so much about love and life. That's the good stuff in life! I mean, really - why are you here? It's like most of the rest of us are in regular classes and with your job, you're taking the advanced placement classes. Unless, of course you don't allow yourself that heart connection with your patients. Then, you won't skip ahead - you'll be held back to the regular classes or worse, have to repeat them!

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When we first found out about Owen's condition - my immediate reaction was 'let's not tell anyone'. I didn't want pity or that look from anyone. Not too long after that initial reaction, I felt like: How do I pretend to be a normal pregnant woman? How can anyone treat me like I'm a normal pregnant woman? I'm NOT normal. It wouldn't be fair to my close friends to not tell them. If one of my friends were in this situation, what would I say to them? This, I thought, was going to take some leniency on my part. Lenient on friends and family towards what they might or might not say. If the situation were reversed, I really had no idea what I would say to someone else.

The first weeks were really hard! I was showing and all the normal things that strangers say really bothered me. Are you having a boy or a girl? When are you due? I bet BigBro's excited to have a little brother... All innocent enough - and, really well intentioned. Sometimes I couldn't answer and just burst into tears right away. Other times, I answered with the shortest answers possible. And, some times I was angry. Angry that something wasn't quite right with my unborn child. Angry that we might not make it to term. Angry that I didn't know what would happen. Angry that I had to just keep waiting (in late June, the end of October seemed like an eternity). Angry that I might not be able to nurse my child. Angry that I might have to get familiar with all the medical apparatus (feeding tube, oxygen, monitors, etc). Angry that my son might die soon after birth. Angry that I might have to plan for death (I held a great deal of guilt in - how could I plan a death and still truly be holding out hope?). Angry at the way the doctor seemed to not value a short life or a life of disability. Angry that we had to face friends and family with this horrible truth. When I was feeling angry, I answered those innocent questions from strangers with the angry (and honest) truth. "Well, I'm having a boy, but we don't know if he's going to live very long after he's born." Or, "I'm due at the end of October, but he might die - so I could have him any day now." Many of those strangers got super quiet after one of those responses! I realize now, that it wasn't right for me to snap, in anger, at anyone. This wasn't any one's fault. And, they really meant to share in our joy of having a baby. I fluctuated between being joyful that Owen was still with us and angry that I even had to face his possible death. I also tried really (really!) hard to give it all to God. I am a weak, naive, ignorant sinner. God could carry this, but not me.

Reactions of friends and family varied, but most showed us pity. Only a couple treated us like I
wasn't even pregnant, or worse. We had one family member ask, "You don't have to carry it, do
you?" For me, only my two closest friends were really supportive. A couple others were helpful,
but to make it through everyday, my husband, Cindy and Monika were my 'rocks'. Several friends and family members really disappointed me. I couldn't understand how they could not say anything and treat me like I wasn't going through anything difficult. These are the kind of people that you can share your life with at a superficial level, but when the going gets tough they are nowhere to be found. Through this, I learned whom really loved and cared about me.

The most surprising reactions were from acquaintances or strangers. People we didn't know well, or didn't know at all shed tears, told us they would pray for us or even randomly gave hugs. Through the ugly parts, I had lost sight of this world's kindness and compassion.

A couple of days after I had told Cindy she called to tell me that while she couldn't initially 'put her finger on it', so she hadn't said anything - she had finally figured it out. She had heard of Trisomy 18 before. Cindy's friend Jessie has a daughter (Katie) that had a little girl (Abigail) with Trisomy 18. You can read Katie's story here. Out of their grief, Larry & Katie decided to give a gift to others (as a beautiful, loving remembrance of Abigail) and started their non-profit - A Butterfly's Touch. After hearing of Katie's journey and amazing strength, I really wanted to meet her.

I ended up meeting Larry, Katie, their darling children and Jessie just a couple of weeks later (right before my first appointment with Dr. Winkler). Jessie is a Labor & Delivery nurse and I was able to get her suggestions on my initial scratchings of a birth plan. While I have had relatives pass away, I had never planned a funeral... Katie didn't mind sharing details about their arrangements for Abigail. Katie was also kind enough to give me one of the boxes that A Butterfly's Touch donates to area hospitals. Honestly, this was very kind and my heart hoped that I wouldn't need what lay inside the box for a very long time. Call it denial, but my greatest hope was that the doctors were wrong and God would perform a miracle so that Owen could live a very long time. All I wanted was to give him love, joy, care, patience, understanding and life. Even if it was a life of disability. The last thing I want to mention is that while Katie did have a different doctor than I did at Northwest Perinatal. They, too, encountered exactly the same attitude we did. And, just like us, they were also encouraged (and expected) to terminate.

Up next - I'm going to introduce you to Trish and Dr. Winkler.

Continued...

My Story (part three)

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

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**some names have been changed to protect privacy**

Even though we had made a follow-up appointment at NW Perinatal - I really didn't want to go back there and see that doctor again. Granted, that one nurse seemed warm and understanding, but to pay that doctor for his professional services when he obviously had such a great disrespect for the sanctity of life. And trying to pressure us into an amnio and suggesting termination... No Way - I wasn't going back! Then again, my regular doctor's office had cast me away and told me that I couldn't go back because, now, I was 'high risk' and I couldn't deliver at the Legacy at Meridian Park (as I had wanted). I guess that means that I'd have to search for a new doctor and a new hospital.

I started by calling my friends Cindy and Ward for some ideas. Cindy (bless her sweet soul) is a dear friend that thinks/believes much the same as I do about most things. I like to say that she is an older version of me. I hope she doesn't kick me for that comment because she's not that much older. Ward is an old neighbor of ours (no, he's not actually 'old', he's just from when we lived in Beaumont-Wilshire in NE Portland) and a baby-delivering-family-practice-doctor to boot! He and his lovely wife Sharon are Catholic, so I knew they would understand my pro-life viewpoint.

Cindy suggested that I call the Pregnancy Resource Center (a Christian organization that gives women options other than abortion) to see if they could refer me to a pro-life doctor. I called and while they did have referrals to pro-life OBGYNs, they did not have any pro-life perinatologists (or maternal fetal medicine doctors) on their referral list.

Ward did not believe that he knew any truly pro-life perinatologists, but gave me three names. (The theory is that there aren't any that are pro-life due to the nature of their work. High risk doctors see really weird things that test the limits of what someone would define as 'life'. There are actually some that are pro-life, just not in this part of ultra-liberal Oregon.) Ward told me that these doctors would treat me how I wished to be treated. Dr. Frias and Dr. Pereira were in the high risk clinic connected with OHSU; and Dr. Winkler was at Legacy Emanuel.

(I had also read about the perinatal hospice concept in a couple different online communities, but found that none existed in the whole of the Portland, Oregon metropolitan area - yet)

Since two of the recommended doctors were at OHSU, I started there. I called and transferred to the nurse line. The woman I spoke with (I wish I had written down her name) listened patiently, while I explained that I was pregnant with a baby that most likely had Trisomy 18. I explained that I wanted to find a doctor that respected the pro-life viewpoint and had other patients whom had decided to carry-to-term. The nurse told me that they have had patients that have carried to term before and she asked how I knew that my child had Trisomy 18. I told her of the ultrasound findings and that I wanted to wait to do the amnio until after 28 weeks. I relayed that a friend of mine had referred me to either Dr. Frias or Dr. Pereira. I asked if either had availability (for a new patient) on their schedule. Then she asked (without my bringing up the subject) if I was expecting to get a c-section. I was taken back a bit and answered, "Well, if during delivery, the baby became distressed - then yes, I would want a c-section." She explained that they didn't really do that and it wasn't recommended and she went on and on. But I stopped listening because she helped me decide right then and there that I definitely wasn't going to make an appointment at that clinic. Even if either of these doctors was fabulous - no way was I going to encounter this kind of attitude from a nurse. If I carry this child alive and kicking for nine months - of course I was willing to have a c-section if it meant the difference between meeting my child alive or not!

Next, I called Emanuel and spoke to a nurse. I explained all the same things about: T18, pro-life, carrying to term, the amnio, the ultrasound findings and the friend referral to Dr. Winkler. Thank goodness she never brought up anything about a c-section! (I was feeling so frustrated that if she had - I might have started swearing like a sailor) She looked over the schedule and explained that Dr. Winkler was hardly ever at Emanuel and that he was mostly at the Legacy at Salmon Creek (in Vancouver, Washington and almost 23 miles from my house!). She suggested that I make an appointment with Dr. Robertson. So I did.

The next day I talked to Sharon (Ward's wife) and told her about the nurse at OHSU and my appointment with Dr. Robertson. Late that evening Ward called me and said that no way was I to see Dr. Robertson. He'd had other patients of his complain about Dr. Robertson's bedside manner and if I was going to see anyone at that clinic, then it had to be Dr. Winkler. Ward couldn't believe that the nurse at OHSU had asked me such a thing (about whether I was expecting to get a c-section). Ward explained that this wasn't any of that nurse's business or decision, that these types of decisions are only between the doctor and the patient. Ward told me to call Dr. Winkler's nurse, Trish, and make an appointment at the Salmon Creek clinic.

The next day, I called Trish. She is a lovely woman. I explained: T18, pro-life, carrying to term, the amnio, the ultrasound findings and the friend referral to Dr. Winkler (only this time I mentioned Ward's name). We made an appointment to see Dr. Winkler. I called and canceled the other appointments (Dr. Robertson and NW Perinatal).

A couple days later, Wendy Busch (a genetic counselor from NW Perinatal) called to give me the AFP results. 1:4,100 chance of trisomy 21 and a 1:4 chance of trisomy 18. She asked if this information changed my mind about doing the amnio. <<Can you believe the pressure this clinic puts on patients to do the amnio right away? I told the doctor that I was pro-life more than three times - didn't they write that in big letters at the very top of my chart?!? Remember, the real reason to do the amnio before 28 weeks was if I was going to terminate - WHICH I WASN'T!>> I immediately bristled and explained that 1) there was no reason to risk that procedure when my baby's lungs aren't yet developed enough for life outside the womb. 2) I might do the amnio when I'm at 32 weeks. 3) I am pro-life 4) Our son is a gift to us and it doesn't matter if we get 2 hours, 2 weeks or 2 months with him.

About two weeks after my appointment at Northwest Perinatal my regular OBGYN called to see how everything went. I explained that in the future, folks at her clinic had better ask a patient if they are pro-life or not. Because if they were pro-life - she had better never send the patient to NW Perinatal. I gave the not-so-detailed explanation about my experience there and that I was set to see a different doctor at the clinic connected with Legacy Salmon Creek. She asked which doctor and when I told her, she said that she knew Dr. Winkler well and that I was in great hands!

Maybe all of this doctor drama / run around would save someone else from having to be subjected to the same treatment at NW Perinatal.

Continued...

My Story (part two)

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

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We arranged to drop off BigBro at Grandpa Mel & Grandma Cathy's house. Hubby and I went to Northwest Perinatal (it's a clinic connected to Providence St. Vincent's - Portland, Oregon). I was sobbing in the waiting room, so they ushered us into a regular room to wait for the ultrasound. On our way back, I noticed that while our regular doctor's office had bulletin boards overflowing with baby pictures on the walls of the hallway - this doctor's office had a creepy absence of bulletin boards and baby pictures. I wondered - did any of these doctors deliver babies? We waited quite a while before being shown to the ultrasound room. The technician seemed to take forever taking pictures and measuring every part of our precious son. At least this technician talked to us and told us what she was seeing (at our regular doctor's the technician said nothing and wouldn't let us leave until we could get in to see a doctor - so that she could give us the news right away). After what must have been at least 45 minutes to an hour, the technician went to get the doctor. When he came in, he took over the ultrasound wand and started talking about everything we had discussed with the technician. In addition to what our regular doctor's office had found, they also thought that there might be a very small hole between the lower two chambers of his heart, called a ventricular septal defect (VSD); and that our son's eyes were slightly closer together than normal (hypotelorism). At this point, the doctor explains that each one of these soft markers are not really a major thing, if they were presenting by themselves. BUT, since there were all of these markers presenting together, there was an increased possibility that something was wrong chromosomally. He thought it could be Trisomy 18. Then, the doctor started puting on gloves while telling us that the only way to know for sure was to do an amniocentesis.

I piped up immediately (because of my earlier internet research) - I'm only 21 weeks, his lungs aren't developed enough AND there's a big risk that we could lose the baby from this procedure.

The doctor was obviously surprised that I brought up the risk and sat back and said - Well, yes, there is a risk with this procedure. We tell patients that there's a 1:300 chance - but this is based on old research - I really feel like the risk is more like 1:600 or 1:1,000. With an amnio, the bag of waters can rupture or infection can be introduced.

I asked why I should do the amnio now. Based on all of these markers it was likely that our child indeed had Trisomy 18 and we could just wait until it was safer for the baby.

The doctor told us that he thought there was a 5-30% chance that our son had Trisomy 18 and gee, let's just do the amnio to rule it out.

I pressed the doctor - how could he say only 5-30% chance?? Granted, I don't have a medical background, but based upon my cursory internet research, it looked like well over a 50% chance to me. The doctor then revised his estimate to 30-60% chance of Trisomy 18 and pressured us, yet again to do the amnio now. I asked why I needed to do the amnio now, when we already know (more likely than not) what we're dealing with and we can confirm when I'm further along and the baby's lungs are developed.

OKAY, here it is - are you ready for it? Then the doctor explains that while there is no law in Oregon, doctors here follow what is done in other states - that you can terminate a pregnancy up to 24 weeks. (Really - someone associated with a Catholic hospital is suggesting this to me?!?) To which, I immediately and emphatically responded - Well that's not an option, so why else would I need to do the amnio now? (It was at this point that he started to take his gloves off. Obviously, this lady had no intention of doing an amnio now) Over and over again, the doctor gave us 'well you would know for sure' and 'you would be able to prepare for his birth'. When I questioned if the doctor would treat us (follow-up visits) any differently if we knew for sure or not - NO, he wouldn't treat us any differently. Whether we knew the chromosomes for sure or not, he wanted us to come in every two weeks. I explained that I was well aware that even if we knew for sure - the prognosis wouldn't change (which, of course, he agreed with). He also asked if I had the AFP blood test done earlier in my pregnancy. He suggested that since I hadn't, that I should go ahead and do it. Plus we could also test to see if something called cytomegalovirus was causing some of these symptoms (bilateral ventriculomegaly). I agreed to the blood draw for the tests.

We were shown into a regular room. The nurse came in and drew my blood, then left. We waited and waited. When the doctor came in, we discussed each of the ultrasound findings in great detail. The only 'ify' things were: they weren't sure if the lung mass was BPS, bronchopulmonary sequestration, or CCAM, congenital cystic adenomatoid malformation); and whether there was a small VSD or not. The doctor wrote down each of the medical terms and had us make another appointment.

While we were making another appointment a really nice nurse told us that she'd had a brother with Trisomy 18. Although he only lived a short time, he was the light of their lives.

Continued...

Questions for creating a birth plan

This cannot and should not replace advice from a perinatologist and neonatologist. I strongly urge you to discuss these questions with your husband or partner, then go talk to the neonatologist and perinatologist about these. Whatever your final birth plan (ie wishes) looks like, make absolutely sure that the doctors that are attending your delivery are 'on board' with your plans. If they are not, it is perfectly okay to switch to another doctor that will honor your wishes. The last thing you want to do on the day of delivery is argue with a doctor, or worse - not have a doctor honor your wishes.


1. What is the baby's full name, as you want it to appear on the birth and/or death certificate?

2. What are the specific medical issues that we know our child will have?

3. What are the possible surgeries and treatments (and what would be their pain level and what
is the prognosis)?

4. What kind of birth do you want? (home, water, hospital, vaginal, c-section, etc.) Consider
that birth is stressful on both the baby and mother. If the baby has serious heart or organ
challenges, a regular birth could increase the likelihood that the baby will pass away during
birth. On the other hand, a c-section is a major abdominal surgery with many serious risks
and a long recovery period. You can refuse a c-section. Part of a baby's lung development
inutero is that they 'breathe' in amniotic fluid. During a regular birth, when the baby
squeezes through the birth canal - it helps get the amniotic fluid out of the lungs. Because the
squeezing doesn't happen with a c-section, it can make a baby less responsive and need a
little more assistance to get going. Whom will attend the birth?

5. Do you want both the mother and baby to be monitored? You can refuse monitoring for
both. If monitoring indicates that the baby is in distress, what do you want to happen?
Again, you can refuse a c-section.

6. Did you bring a music CD to be played during delivery?

7. If it's a regular delivery, do you want a mirror - so you can see the baby coming?

8. Do you want an IV, episiotomy, pitocin, forceps or vacuum extractor?

9. Do you want to be induced a little early (ie 37 weeks), or do you want to let nature take it's
course? Are there any risks (ie pre-eclampsia or placental abruption) to either you or the
baby if you are induced early or if you wait until later?

10. Do you want pain relief? (breathing exercises or medications like an epidural, demerol, etc)

11. Can the doctor cut the cord, or do you want someone else to cut the cord?

12. Do you want all possible medical interventions, or comfort care only, or somewhere in
between? Consider if s/he isn't breathing, doesn't have a heart beat or has a low heart beat.

13. Consider possible medical interventions: what exactly are they and how do they feel for an
adult (pain or discomfort level)?

• Suctioning
• Rubbing/Drying
• Blow-by or bag and mask (with or without oxygen)
• PPV or CPAP (with or without oxygen)
• Tracheal tube
• Mechanical ventilation
• ECMO
• CPR or chest compressions
• Umbilical catheter or IV
• Regular IV
• Medications (Epinephrine, Morphine, etc.)
• Other Fluids (formula, IV fluids - what if their blood sugar level is too low, or you aren't producing enough colostrum/breast milk)
• Oxygen (usually given by nasal cannula)
• Feeding Tube
• Catheter

14. Do you want a rabbi, pastor, etc. to do anything? (bless, pray, baptize, etc.)

15. Do you want pictures and/or video taken? If yes, when and by whom? Consider that you
should discuss this with the doctors involved & make sure it's okay with them. For many
hospitals, the anesthesiologist has the final say in the Operating Room.

16. If this is a teaching hospital, is it okay if interns, students, residents, etc. are involved with
your family's care (including exams)?

17. Do you want the baby to have inoculations/vaccinations, a vitamin K shot, eye ointment,
tests, etc? If yes, when?

18. At what point do you want the doctors to stop the medical interventions? Are you willing to
put a Do Not Intubate (DNI) or Do Not Resuscitate (DNR) in writing?

19. At what point do you want to hold the baby?

20. At what point do you want s/he to have footprints, weight and measurements taken?

21. If you're having a boy, do you want him circumcised?

22. Many states have mandatory (without informed consent) newborn screening programs.
These screen for rare metabolic disorders that are lethal if not detected early enough. Do
you want to refuse participation in this program? It is common practice that whenever a baby dies before being born or within a short time after being born that the placenta be sent to a lab to be analyzed. Analysis can include many different things, including obtaining genetic information. If you are a privacy advocate, you may want to specify that the placenta must be incinerated (which is what they normally do with a 'normal' placenta/after-birth) and that you do not wish for any testing to be performed.

23. Should at least one parent be present at all times? Only when procedures are done?

24. With your desired level of interventions, can these be done by the hospital you're delivering
at? Some smaller hospitals require that you go to a larger hospital (with a NICU). Which
interventions can be done while the baby is 'rooming-in' with you? For some hospitals, even
for the baby to be on oxygen or IV fluids, hospital policy requires that the baby be in the
NICU. If your baby has to be in the NICU for an extended period of time, what does the
NICU look like and what kind of privacy is there (ask to go on a tour)? In most hospitals the
NICU is one big room with rows of babies in isolettes (very little privacy)... In some newer
hospitals, each baby's isolette is in their own room (lots more privacy).

25. Do you want to bathe, diaper and clothe the baby yourselves? Or at least offered the
opportunity to do it yourselves?

26. Do you want friends or family members to be allowed in your room? If yes, when?

27. Do you want to try to nurse the baby? If yes, do you want a lactation consultant to help?
Do you want to use a breast pump?

28. At what point do you want to take him/her home?

29. If the baby dies, do you want friends or family members to be allowed in your room?

30. Would you want an autopsy?

31. Do you wish to donate his/her body or organs to another family or for medical research?

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You may want to keep a separate checklist of things you want to happen to make lasting memories in the hospital (see THIS POST).

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Although this isn't part of creating a birth plan - in case your child doesn't come home from the hospital, please consider: (I, personally, was thankful that we planned for the worst, while holding out hope for the best. It made for fewer decisions while we were in the moment of losing our child.)

Do you wish to be buried or cremated?

Do you want your child to be buried or cremated? Think about if you move quite often, being buried means that you will not be able to visit your child's grave often.

If you want your child to be cremated, what do you think you will do with the ashes? Spread them, wear some in a keepsake necklace and keep some in a figurine/urn in your home, or utilize one of many options at a cemetery?

If you want your child to be buried, where will you bury them? Do you want him/her in the children's section, or will you purchase additional spaces, so that you can all be together? Will you have a viewing (if yes, do you want the funeral home to use makeup)? Will you have a funeral service (if yes, where & whom will perform the service)? Will you have a graveside service (if yes, where & whom will perform the service)?

Do you want an obituary?

We made the decisions about the poem for the folders for Owen's funeral service and which casket after we had gotten out of the hospital.

Creating memories when you don't know if your baby will come home from the hospital

*I modified the below entry & GAVE it to a local hospital to hand out to parents who have lost a little one while in the hospital*

Before the hospital we:
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* started a baby book
* started writing in a journal
* gathered some ultrasound pictures
* had Owen's brother choose a stuffed animal that he would give to Owen in the hospital (I bought 2... one for big bro to 'give' to Owen & the other for inside Owen's casket). we also secretly got a different stuffed animal that we packed in our suitcase & gave this other animal to Owen's brother - from Owen - in the hospital.
* purchased two (identical) super soft blankets. one for owen in the hospital and one for in his casket.
* put together call lists & scripts for family members to make calls for us
* purchased grave spaces (so we will all be together)
* I put together a CD of music (this is what we played at Owen's funeral)
* maternity photos (hired a photographer through nilmdts)
* videotaped some ultrasounds. these are priceless to me - I love seeing Owen dancing around while in utero.
* received an approx quote on our custom birth announcements (we only had to send Owen's footprints in & modify some wording, but changed very little - see it HERE. This is the lady that did THEM. We slipped in a small paper we made ourselves that invited people to Owen's funeral service)
* printed out address labels for the birth announcements

We took a big bag to the hospital & gathered:
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* pictures (nilmdts & personal)
* video
* we brought an extra large ink pad & paper to get lots of foot prints and hand prints
* small seal-top bag for hair clippings
* small seal-top bag for nail clippings (+ put a nail clipper inside the bag)
* Precious Impressions (to make one foot and one hand mold)
(+measuring cups, spatula, disposable container for mixing)
* the newspaper from the day Owen was born
* Owen's comb, aspirator, information/isolette card
* hospital ID bracelets
* hats, blankets and clothes for Owen. these were all brought from home, not ones typically provided by the hospital. clothes were all 'premie' sized. (we also brought a couple baby toys and a picture of our family - for Owen's NICU room)
* umbilical cord clip

I ended up with a c-section & my husband also kept the disposable 'cover-all' clothes.

We also brought an extra copy of our birth plan to the hospital, which really came in handy (there was a small mix-up).

A very sweet nurse made a bracelet for owen. It turned out to be a great thing that we named him owen - a longer name might not have fit on the bracelet!

After the hospital, we kept the newspaper from Owen's death notice and his obituary. We also kept all cards (even the ones from flowers that were sent). We have several things from the funeral home (guest book, folders, clothes, etc).

I wanted to minimize any later regrets, so in the hospital I wanted either my husband or I to:
====================================
* caress his soft skin (I really had forgotten how soft a baby's skin and hair are!)
* rock owen
* kiss owen
* tell owen how much we love him
* sing to owen ('wheels on the bus' or 'twinkle, twinkle' anyone?)
* bathe owen (later smelling the soap really reminds me of him)
* put lotion on owen (later smelling the lotion really reminds me of him)
* diaper and dress owen
* carefully study all of his adorable baby parts
* comb owen's hair
* hold owen all night
* walk outside and feel the sun or rain or wind or warmth or cold
* read a book to owen (yes, I packed Green Eggs And Ham in our suitcase!)
* had owen been alive for longer, I would have really liked to try to nurse him
* if I'd had a girl, I would have also brought fingernail polish to the hospital & painted all ten toes!

Recently, I bought a necklace for both my husband and I from THIS local woman. They just arrived yesterday & are really great keepsakes!

Birth Plan

Parent's wishes for the birth of Owen Thomas _

Owen is a miracle and gift from God. His birth is an occasion for rejoicing. Please treat it as such, even if he is still born or dies soon afterward. Please refer to him as Owen and share our joy and sorrow with us. Our wish is that if he dies, dad or mom are holding him. As a result, we ask that all possible procedures be done in our presence or delayed until his condition is assessed to see if he is stable. Our intent is to provide Owen an opportunity to ‘stay with us’ on primarily comfort care with minimal intervention. We truly appreciate your help and support, and ask that you understand if we seem indecisive at times. We also appreciate and find great comfort in your expressions of grief, be it through tears or humor.

Delivery (Possible vaginal birth or c-section):

Mom would like an epidural and pain relief. We also want the baby to be monitored as well as mom. Mom wants to be aware, alert and present for the delivery and afterward. Should Owen become distressed during a vaginal birth, then mom wants a c-section.

We desire to have a third person (in addition to dad and mom) in the delivery room/OR to take photographs and/or video. We do not wish to have any unnecessary hospital staff in our room at any time (ie students, interns, etc). Only hospital staff that are performing medically necessary exams or procedures are to examine our son in life or death.

We desire no circumcision, inoculations/vaccinations, and no eye ointment at any time. Please delay vitamin K, footprints, weighing & measuring until after both parents have held Owen. Immediately after birth, perform standard suctioning, rubbing, and vigorous drying to aid in his respiratory and cardiac efforts. We desire that the following guidelines be observed:

1) Assess Owen's respiratory effort after drying, rubbing, and suctioning. Keep in mind that due to his lung mass, Owen may need oxygen.

a) If he breaths well and has a heart rate above 100 bpm, weigh & measure; then, give him to mom or dad.

b) You may follow standard newborn resuscitation procedures (up to and including PPV (either bag & mask and/or CPAP), chest compressions and administration of medications (ie epinephrine, morphine, etc.) and oxygen). An umbilical catheter or IV are okay. We probably do not desire for Owen to have a tracheal tube inserted, nor mechanical ventilation. If you come to this point in resuscitation efforts, please discuss with dad and/or mom. We will probably just want to hold, comfort and love him – but we want to be given the information in case we change our mind.

c) Any tests should be discussed with parents and done with parents’ permission only.

2) We do not wish to participate in the Washington or Oregon Newborn Screening Program and want no part in any testing, donation or research of any kind (genetic or otherwise, irregardless of whether it’s coded, anonymous, identified or de-identified).

3) We desire that mom or dad be holding him at all possible times.

4) We desire that no procedure be done without parents' presence. Dad is to be with Owen at all times. As soon as is practical, please have Owen join mom in the recovery room.

5) We desire full rooming in (no NICU, transition nursery) for at least first several hours. We understand that hospital policy may not allow for this with some of the minimal interventions/monitoring that we are requesting.

6) We desire that dad and mom bathe Owen themselves if possible. If not possible, please bathe him in the same room with the parents.

7) We desire that our child and other relatives be allowed in to see Owen ASAP for as long as we wish.

8) We desire that mom try to nurse Owen. Request that the lactation consultant visit as soon as possible for assistance (mom has nursed one previous child). If Owen is unable to nurse, mom will express breastmilk using a pump and this should be given to Owen via a feeding tube. If mom is not producing enough breastmilk/colostrom (or Owen’s blood sugar is too low), formula and/or IV fluids are okay. If Owen’s esophagus isn’t connected to his stomach, then no further attempts at introducing nutrition are to be made.

9) If Owen stabilizes, we desire to take him home ASAP on comfort care.

In case of death:

If Owen dies during our stay, please notify staff members as soon as appropriate. Mom will be recovering and will probably be best cared for on the maternity floor, but the staff should be sensitive to the situation when possible.

In Owen’s death, please respect our wishes in point 2) above. We do not wish to have an autopsy.

If he dies before being bathed, we desire to bathe and dress him ourselves.

After he dies, we desire that Owen be with us as long as we desire. We also desire that our child and relatives be allowed to be with us during that time. We request Owen stay with us until the funeral home arrives.

Owen's name, Owen Thomas _, must be on the death or still birth certificate.

My Story (part one)

My mom... oh wait, maybe I shouldn't start the story at the very beginning. How about if we just start around the time of BigBro and Owen...

I enjoyed being pregnant and had a rather uneventful pregnancy with my first son, BigBro. I was working full-time at Nike and everything was 'normal':

• I did everything my doctors told me to do (ate nutritious organic foods, stopped drinking coffee, took prenatal vitamins, had all the prenatal visits, tests/ultrasounds, etc)
• Had morning sickness the first three months (it really annoys me that people call it morning sickness, because it's really an all day thing, not just in the mornings)
• Gained weight (too much really, but I really loved Burgerville's Chocolate Hazelnut milkshakes at the end of my pregnancy)
• Developed heartburn (which seemed to get increasingly worse as my tummy got bigger)
• Disagreed with my husband over the name
• Had a baby shower
• Argued with my husband over the name
  
• Bought everything else we needed for a baby
• Did I say we fought over his name?
  
• Decorated his room (of course we painted his walls orange!)
  
• Developed Sciatica (at the end, I couldn't sit for long periods - my leg would fall asleep)
• At the end, I was whale-like with very swollen feet and ankles
• I was almost two weeks overdue w/nothing going on (no dialation, no thinning) when I went in to be induced (Easter weekend 2005 at Providence St. Vincent's - Portland, Oregon)
  
• As far as pain goes, I thought I'd hold out as long as possible before asking for anything for pain... I ended up wanting the epidural by the time I was 3 cm dialated (does that make me a wimp?)
• I pushed for only 45 minutes, then my big (almost 9 lb) boy was here!

Almost 4 years later, I can still remember vividly how excited (and happy) we were to have a new baby. Let me say that I grew up with the brain-washing our society imposes on little girls. You know, the load of crap about how you're supposed to work, get married, have babies (that you put in daycare), climb the corporate ladder and EVERYONE'S happy. I returned to work for a few months and realized what a load of crap that is! (Partially, thanks to Dr. Laura) I finally came to the realization: Who did we want to raise our child & give him his moral compass? An $8-10/hour daycare worker or his parents? I'm a stay-at-home momma, so you can guess the answer to that question. BigBro is the light of our lives. I never realized how much you could love someone until I had a child. Don't get me wrong, I love my husband - and loving a child is totally different.

In between BigBro and Owen, we had a couple close family members get very sick and pass away. Needless to say, I have become somewhat skeptical of doctors. They call it practicing medicine for a reason! You need to research and get informed about your own health / health problems and be your own advocate with the doctors about what treatment(s) to try, what side-effects there are and what the likelihood of a positive outcome might be. I could go on and on about my political beliefs on health care costs / insurance, but I won't do it in My Story, please someone ask me about this later & I'll post my political beliefs.

We tried to get pregnant again for over a year, then in early February 2008 I became pregnant with Owen. I refused the AFP (or quad screen) and early ultrasound (nuchal translucency screening) because I believe this to be a waste of my health insurance company's money. No matter what the outcome, I wouldn't abort the baby anyway - so why do these tests? Also, I had a friend have a false positive, which literally stole the joy of being pregnant for the remainder of her pregnancy. In her case, nothing was wrong or went wrong - it was a needless stress/worry.

Early on, I sensed that something wasn't quite right, but had no idea what it could be. It seemed like this child moved less frequently, less vigorously and I didn't feel his movements until I was a few weeks further along than with BigBro. I told myself that every pregnancy is different, so there was nothing to worry about. I was seeing an OBGYN at a clinic connected to the Legacy at Meridian Park (in Tualatin, Oregon - which is the nearest hospital). Then on June 18, 2008 (a day I will never forget), we had our ultrasound at 21 weeks (we did this just to find out if we were having a boy or girl & for no other reason). That's where we found out that we were having another boy (yeah!). They explained that they had found some soft markers on the ultrasound for something called Trisomy 13 or Trisomy 18. The doctor told us she was very sorry (she said it like our child was going to die or something??!!) and that we would need to see a perinatologist for the remainder of my pregnancy. I felt castaway. The doctor called a clinic connected with Providence St. Vincent's and made an appointment that same afternoon for us. I had never heard of Trisomy 13 or Trisomy 18 and when we got home, I immediately got online to see what this was all about. We had about 2 to 2-1/2 hours to kill before leaving for our appointment at Northwest Perinatal. The ultrasound findings were: clenched fists, bilateral ventriculomegaly (slightly enlarged brain ventricles), choroid plexus cysts (fluid filled cysts in the brain), a lemon shaped head and a lung mass. All the websites that I looked at showed us how very devastating either of these diagnoses would be, yet offered hope that our child could live up to a few years. The statistics were startling! Trisomy 13 occurs 1:5,000 births. Trisomy 18 occurs 1:3,000 births. Only 50% of the time these babies make it to term and of those that make it to term - only 5-10% lived beyond one year old. I had seen that a firm diagnosis could only be made if we did an amniocentesis. So- I looked online at amnios; what exactly the procedure entailed and what the risks were (some sites quoted 1:200 and others 1:300 chance of losing the baby). I felt like the odds were stacked against us and wondered why we would have an amnio before 28 weeks, which is when his lungs are developed enough to possibly survive a rupture of the amniotic sac.

Continued...