Friday, January 30, 2009

Conversations about death with an almost 4 year old

While these conversations don't occur everyday, they happen at least once a week... I've always meant to journal some of these, (mostly because some of the conclusions BigBro comes to - or the things he asks are soooo sweet) - so here's my first attempt.

Earlier today BigBro and I were in the car and he asks me, "When we die, why can't we go home?"

As usual, this lead to a conversation about God, heaven, Owen and what death means. Usually BigBro asks why Owen can't come home - or - insists that we must dig him up and bring him home... (If only it worked like that sweetie.) I explain how heaven is all around us, so in a sense Owen is always near us.

This time after I explained about how death isn't the end for us (heaven exists) and how God is in heaven, just like Owen is in heaven, BigBro sweetly asks, "Is Owen cuggling* with God?"

Of course I answered, "Yes", with a big smile.

*See, in our house, since BigBro was a tiny baby, he and I have cuddled almost every night before he goes to bed. Since BigBro first started talking he has pronounced the word cuddle as cuggle.

Tuesday, January 27, 2009

Belated Christmas Pictures

This beautiful porcelain egg was received just before Christmas from dear, sweet Kathleen. Kathleen, I just received your card on Friday (Jan. 23) and I must say: Finn is so handsome! And so tiny! He looks just like an angel... I had meant to post pictures of the thoughtful gift that you sent us for Christmas - and I am sorry that I neglected uploading pictures from our camera for soooo long!

Once we received the package, we had tucked it under our Christmas tree & waited until Christmas Day to open it. Of course, I cried instantly when I opened it. I've never seen anything like this! The touching script on the bottom says, "If tears could build a stairway, and memories a lane, I'd walk right up to Heaven and bring you home again". At the very bottom is a wind up key and to my pleasant surprise, I found that it plays Amazing Grace! The 'egg' opens and inside there's a crystal encrusted stairway with a holy cross at the very top. The egg is sitting on a shelf in our living room - right next to our wedding picture.

Okay, so I teased you with that one! NOW you can see the whole wedding picture!
That was such a long time ago - who are those people?

Last, but certainly not least! One of my 'new' Republican friends sent these wonderful thoughtful Christmas ornaments to us:

Tuesday, January 20, 2009

New picture sharing blog

Okay, Hubby has been bugging me about uploading pictures from our camera for a while... I just uploaded a huge batch to Shutterfly & noticed that they have a new picture sharing website deal-y-o. Check it out

I'll post something here when I've uploaded big new batches of pictures :-)

Belated snow pictures

Owen's maple tree in the snow (it's planted on the West side of our yard)

Angel of Hope & Mausoleum just above (uphill from) Owen's grave

Potted flowers, vines and ornametal grass on Owen's grave

View down the hill towards Owen's grave (his is the one roughly mid-left)

Isn't snow just lovely?

I wish...

I wish I had thought of doing this sooner! I just made & sent off:

I hope you enjoy them ladies!

Tuesday, January 13, 2009

My Story (part five)

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

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%!


Tuesday, January 6, 2009

Quiet Time - It's for adults too!

So, I've been spending some time each day meditating. No, not the yoga-lotus-position-OOOMMMM sort of thing you might imagine. Just spending a little time each day in quiet reflection. I do this, because with everything that's happend in the last 7 months - I am anxious (I know, patience is a virtue - but I am soooo impatient) to find the gifts that lay in the days ahead. I refuse to dishonor Owen by focusing on the negative parts. Not that those negative things don't randomly enter my mind. I just want to remember the joy and hope in his purpose.

Anyway, this morning towards the end of my quiet time - a random, yet strong thought entered: Forgive your father. The burden is too heavy to carry. He will never move on with his life, if you don't. Hasn't he carried this long enough?

Then, as I readied to go out for the day - another deliberate thought entered: Write him a note and give him a picture of BigBro and Owen. So, cautiously trusting this 'inner voice' - I did it! I wrote a short note about how he no longer needed to carry the burden and that I loved and forgave him. I didn't provide any contact information and simply signed it with my first name.

Although it's been 16+ years since I've seen or talked to the man, he still lives in the same house (I looked on to see if it's sold in the last 16 years and it hasn't!). Then, as part of our errands this morning, I went to Rite-Aid and had a couple pictures printed.

I left the note and pictures in a plastic bag at his door. It felt so good to give such a wonderful gift.

Then, it was off to the hospital where I delivered Owen. The Legacy Hospital at Salmon Creek (in Vancouver, Washington). I brought them a special gift to give to other families that have lost a baby.

What a strange, yet beautiful day.

Sunday, January 4, 2009


Today, Hubby, BigBro and I went to Rolling Hills (a church in Tualatin, Oregon). BigBro absolutely refused to go upstairs to make new friends and play with the other kids his age (in the Sprouts classroom)... He wanted to spend the entire time sitting with us. He talked, wiggled, colored and played while we shushed him -- all the while, trying to listen to the pastor speak. What a turkey!

Anyway, I've decided that this isn't the 'home' for me because the 'guest' pastors over the last couple of months have been great, but the regular pastor is abysmal. He's a shining light as to why I stopped going regularly to church years ago. I just don't understand the divisiveness and judgemental nature of a "loving" church leader. I do believe there's right and wrong, but whom will be the first to cast the stone? We all sin differently, but none-the-less, we're all sinners. Does that mean that if you don't believe exactly A-B-C-X-Y-Z that you're going to burn for all eternal damnation?!? Or how about a peaceful Buddhist that lives their life in peace, compassion and love - just because they don't believe in exactly the same rigid definition of God, Jesus and the Holy Spirit (as I do) - then they too are going to the sulphur pit? Honestly, I believe that's just not true. You see, in many ways the various authors of the bible got it so right, yet so very wrong. Have you ever stopped to consider that The Good Book was written by imperfect sinning humans? All decades after the actual happenings (ie Jesus' time?), with many authored works thrown out (omitted from the bible) by religious leaders - and, then later translated by imperfect sinning humans because we do not all understand the original languages they were written in.

Anyway, enough of my rant... What I had gotten out of today's service was this- I remembered how Psalm is one of my very favorite books and re-read these gems (the services had directed us to a very different part of Psalm, but I seem to always do my own thing)

Do good to your servant according to your word, O Lord. Teach me knowledge and good judgement, for I believe in your commands. Before I was afflicted I went astray, but now I obey your word. You are good, and what you do is good; teach me your decrees. Though the arrogant have smeared me with lies, I keep your precepts with all my heart. Their hearts are callous and unfeeling, but I delight in your law. It was good for me to be afflicted so that I might learn your decrees. The law from your mouth is more precious to me than thousands of pieces of silver and gold.

Your hands made me and formed me; give me understanding to learn your commands. May those who fear you rejoice when they see me, for I have put my hope in your word. I know, O Lord, that your laws are righteous, and in faithfulness you have afflicted me. May your unfailing love be my comfort, according to your promise to your servant. Let your compassion come to me that I may live, for your law is my delight.

If your law had not been my delight, I would have perished in my affliction. I will never forget your precepts, for by them you have preserved my life.

Have mercy on us, O Lord, have mercy on us, for we have endured much contempt.

O Lord, you have searched me and you know me. You know when I sit and when I rise, you perceive my thoughts from afar. You discern my going out and my lying down; you are familiar with all my ways. Before a word is on my tongue you know it completely, O Lord. You hem me in-behind and before; you have laid your hand upon me. Such knowledge is too wonderful for me, too lofty for me to attain. Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast. If I say, "Surely the darkness will hide me and the light become night around me," even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you. For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. How precious to me are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you.

Later on, I re-read the entire book of Job. After which, I started a new book I had just gotten from Amazon. It's called The Underground History Of American Education by John Taylor Gatto.

Saturday, January 3, 2009

My Story (part four)

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

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!

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.