Rae of Sunshine

In an alternate universe, Bryce's due date would have been on or around September 26, 2009. Knowing that this milestone would make both Dianna and Gus unable to function in our everyday lives, we decided to take a trip together. The basic plan was to go somewhere that week with full backpacks and get lost - lost from work, lost from our lives, alone with each other to talk and process this last step of the acute phase.

We enlisted Grandma Mouge to look after Zane for a week, and started to throw around ideas of where to go. After brainstorming we settled on an ambitious plan. We decided to backpack the Rae Lakes loop at Kings Canyon National Park in the Sierra Nevada mountains of California. Some of you may recall that Dianna, Zane and Gus all did the first leg of this six-day trip on Labor Day weekend 2007 (so far, this is Zane's only backpacking trip to date, which is an indicator of how brutal it is to backpack with an infant/toddler). Gus had daydreamed about being able to do the whole loop, but the reality never quite materialized and kept getting less and less likely - our lives are just too busy to spare that kind of time and energy. After nailing down our decision we realized that by making this trip a priority in our lives, Rae Lakes would be yet another gift we got from Bryce.

The route itself is 46 miles long, begins at 5000 feet at Road's End near Cedar Grove on Hwy 180, and starts to climb up Kings Canyon north through Paradise Valley, east through Woods Canyon, south up the John Muir Trail, eventually topping out at 12,000 foot Glen Pass above Rae Lakes. After the pass the trail descends rapidly, skirting Charlotte Lake, Vidette Meadow, Junction Meadow, and continuing down Bubbs Creek until it drops back to the canyon floor. Rae Lakes is one of the most popular high country Sierra routes in summertime, but 9/24 marked the beginning of the 'off season' when Kings Canyon enjoys few backcountry visitors. Even backcountry park rangers break down their summer stations and leave for the fall and winter. When all was finished, we had seen a grand total of 16 backpackers in six days and were alone on all but one night in camp.

We spent Saturday night at the Cedar Grove lodge, woke up on 9/27 and started hiking. Although we had been humbled by the switchbacks above Mist Falls on the way to Paradise Valley two years ago, on this trip we flew up them despite carrying 40lb (Dianna) and 50lb (Gus) packs. Although it turned out to be a long day of hiking, we made it 10 miles to upper Paradise Valley and camped the first night.

just below the south end of Paradise Valley

On Monday 9/28 we woke up, got camp together, ate some oatmeal and began to climb the trail above Woods Creek, which undulates slowly up the canyon. Whispy cirrus clouds started floating by in the afternoon, suggesting that a storm was building.

We intersected with the John Muir Trail, a 230-mile trail that traverses the high country between Yosemite Valley and Mt. Whitney, the highest point in the lower 48 states. The suspension bridge that crosses Woods creek sways when you walk across it.

We continued up JMT until we got to a good spot to camp, between the bridge and Dollar Lake. That night we were visited by some of the local wildlife, who took a few chunks out of Gus' camelbak nozzle (maybe it tasted like toothpaste).

fall colors

Tuesday 9/29 we had a short day because we were a few miles ahead of schedule. The plan was to make it up to Rae Lakes and enjoy the afternoon there basking in the sun, and to take 9/30 off from hiking to let our feet rest a little. The day before, Dianna developed a world-class blister on her right ankle that required some surgery and a lot of moleskin.

The mountains, however, had something to say about our plan...

We got to middle Rae Lake at 2pm, and hastily assembled the tent while snow started to fall. If we hadn't been laying inside of it, we would have lost the tent to the wind, the gusts of which we could hear howling through the mountain passes high above us a few seconds before ripping past the tent, deforming the tent upon us and sucking the modest accumulated heat away. That night it got down to 19°F. Water froze inside our tent. As Gus only had his summer sleeping bag, we improvised and zipped our bags together, spooning to allow our body heat to keep us warm through the night. That's the benefit of backpacking with your spouse.

The wind died down around dusk long enough for us to get a few 'golden hour' pictures:

10/1, Dianna woke up to a freezing but silent morning and snapped this shot:

Then she did some yoga.

On the rest day we explored the lake, laid around and generally did nothing. It was great. That night it was dead silent and the only thing we could hear was our own heartbeats.

The next morning, 10/2.

We got up, ready to power up Glen Pass (1400 feet in 2.8 miles, about half of the gain would come in the last 1/2 mile). Dianna flew up the mountain. She was a good 10 minutes ahead of Gus about half way up.

Dianna was excited

Gus was a little tired

We hiked for 8 hours and made it to Junction Meadow, which sits at 7000 feet. Our feet were tired.

Before she left, Dianna had her toes painted so she could have a 'ray of sunshine' when she took her boots off.

On 10/2 we got up and began the 10 mile hike down to the car. The trail was a thin rocky ribbon that sliced through the brush, but drainage from the peaks on either side of the narrow canyon into Bubbs creek irrigated everything else, which consequently popped with lush green color. We hiked in long stretches without saying much to each other except for the occasional, "that's pretty". This was a common theme throughout the trip and a benefit that we hadn't anticipated. We originally went on this trip thinking we would be contemplative, or visibly sad, unable to think about anything but losing Bryce. Those things turned out, for the most part, to not be true. We did talk about him, Zane and us, but this was mostly at night when we were laying there in the tent. The rest of the time that week, we simply turned off the world and ourselves. Few new insights about death or coping.

Dianna has been reading a book on grief, the gist of which is that coping with loss is like being lost in the wilderness, consumed by uncertainty, the fear of not knowing which way to go, what to do, how to protect yourself. Maybe this simile isn't too far off the mark. We've been in the metaphorical wilderness since Bryce died on May 15th. For the week surrounding his projected due date, it was a gift to be able to transiently live in actual wilderness and, for a change, to embrace it, to become a part of it.

One long month

From Bryce Aubrey Zeiner

Today is the one month anniversary of Bryce's death. To be honest, I do not know what to write.

Bryce we miss you... or at least the idea of you. How can you miss something that you weren't use to? Bryce was not part of our everyday routine, he was just inside me. I miss the concept of my second child, but that does not include medical needs, pain and death. I yearn for a healthy Bryce, the little baby that would be kicking my ribs and soon to be keeping me up all night. Is that fair to miss something that was never truly real? To be so self absorbed that I really only miss the thought of a child, but not Bryce? I am completely perplexed on how I should feel. So today, I give up. It is part of my nature to make everyone feel better, to let them know that it will be ok. Today is simply not that day.

Knowing that people might be looking at the blog specifically today, I did want to share yesterday's memorial and more of my most recent thoughts. Pictures are posted in Bryce's photo album, I hope that everyone can see what a beautiful place Bryce is buried. The headstone is currently being made, we are having a craftsman carve something special for Bryce. Once we have it placed we will post a picture of this a well.

Love to all,
Dianna

evaporated myth

I have had a lot of time to think and to talk to family and friends lately. In this process of writing a narrative for Bryce's life, lots of isolated thoughts have come up. This is one of those thoughts.

This isn't going to be an overly insightful concept for most of you but apparently I have been living with a gaping blind spot for quite some time now. Here goes:

I don't control anything in my life that truly matters.

Saying it out loud makes it seem so obvious it's embarrassing. I'm healthy. I was born into a good family. I'm a biologist because it was the thing I was naturally good at when I was in the career-choosing part of my life. I met Dianna by random chance. One of my sons is healthy and beautiful. My other son was only beautiful.

I think that most Dads believe that they can protect their kids. Our culture lauds Dads for this imaginary strength and cunning, for being six chess moves ahead of everyone else when it comes to averting danger. What complete bullshit. You can strap your kid into a car seat. You can put a helmet on your kid when your kid is doing something that requires a helmet. You can teach them to not run into the street to chase a ball. You can tell them to not talk to strangers or get into their car. These things aren't protection, they are common sense.

You can't protect your kids from random chance.

-Gus

Karyotype results

From Bryce Aubrey Zeiner

The above picture is Bryce's karyotype results from the amniocentesis. Although there is no new information from these results that we did not already know, we are comforted to see the actual data. To physically view the scientific reason behind our sadness, to understand why Bryce died. Bryce had a full triplication of chromosome 13. Notice the size difference between chromosome 13 and chromosome 21 (a triplication of Chromosome 21 causes Down syndrome). Even though it is not just the size but what genetic information is carried on the chromosome, when comparing the two it is obvious what a difference between the quality of life would be, if Bryce had the chance to survive. Poor precious boy, how and why were you so unlucky? Bryce, we love you.

In Bryce's photo album, we added a few more of the artistic photos we received. We love these photos almost as much as we love our boy. Evidence of his life, evidence of how Bryce has changed us. We hope it does not pain you to see them, we think they are beautiful.

All our love,
Dianna and Gus

What is Trisomy 13?

So far our blog posts have focused on Bryce's life and the aftermath surrounding his death, but we haven't spelled out the details of what Trisomy 13 actually is. In this post we will try to answer some of the questions that you might have.

Trisomy 13 (or Patau syndrome) refers to a group of chromosomal disorders where cells receive an extra functional copy of chromosome 13, resulting in three copies (hence trisomy) of chromosome 13 rather than the usual two copies. The extra chromosome 13 can be whole (referred to as 'full' or 'nondisjunctive' Trisomy 13) or a sizeable chunk of chromosome 13 can be duplicated and glued onto another chromosome (which is called a 'translocation'). Most of the time the events leading to Trisomy 13 were set in motion before the sperm and egg ever met (sometimes decades before), which results in every cell in the developing baby having an extra functional copy of chromosome 13. This is the type of Trisomy 13 that Bryce had. Other times the critical mistake occurs sometime after fertilization, and as such some cells are normal in the developing baby, while others have three copies of chromosome 13. These cases are called 'mosaic'. When you read about Trisomy 13 on the internet and see pictures of kids that are 10 years old with Trisomy 13, they are generally of the 'mosaic' flavor, which can lead to less severe form of the disease ('less severe' is relative - this disorder is hugely debilitating).

So, why does one extra chromosome matter? The extra copy of chromosome 13 thinks it's supposed to be there so it behaves like the other two copies and expresses its genes when it is supposed to. Unfortunately, the extra products of the genes on chromosome 13 have consequences for development. Cleft lip and palate. Congenital diaphragmatic hernia. Kidney dysfunction. Heart defects. Blindness. Extra fingers and toes. Fused fingers and toes. Severe mental retardation (IQ = 30-60). A spectrum of other things that you don't want. Bryce appeared to have only the first three at 20 weeks, but other problems (heart defects) would have almost certainly arisen during the third trimester. Bryce's congenital diaphragmatic hernia was what killed him.

What are some of the genes encoded by chromosome 13? Chromosome 13 contains 114 million bases of DNA (all chromosomes together add up to around three billion bases of DNA) and has around 700 protein-coding genes and an unusually high number of 'noncoding' genes, which often serve to regulate how other protein-coding genes are expressed. Coincidentally, Gus works on a class of noncoding genes called microRNAs, which act to regulate the expression of many other genes that encode proteins. The particular group of microRNAs that he focuses on are encoded on chromosome 13.

Now, back to what went wrong. Bryce's Trisomy 13 was not the result of Dianna and Gus having something 'wrong' with their genes. Bryce didn't inherit a disorder that has been passed down through generations in our families. Dianna, Gus (and consequently, Zane) aren't carriers of Trisomy 13. Rather, the nondisjunctive Trisomy 13 Bryce had was a chromosomal traffic accident that happened either in one of Dianna's eggs ~33 years ago (for those of you doing the math, this is back before Dianna was born, when her eggs formed while she was still in her mother's womb), or in Gus' sperm sometime in December 2008. The odds of this happening to Bryce were around 1:13,700. Bryce was the one.

Eggs and sperm each have half the number of chromosomes (23) that all other types of cells do (2 x 23 = 46). This 'half set' of chromosomes is comprised of one of two possible copies of each chromosome, and eggs and sperm are thus referred to as 'haploid'. Haploid eggs and sperm are made from precursor cells that have duplicate full sets of chromosomes. A series of very specialized cell divisions called 'meiosis' occurred in these precursor eggs and sperm to generate haploid eggs and sperm. Evolution decided long time ago that the benefits of these specialized cell divisions (the mixing of genes from your parents) outweighed the risks, so we're stuck with it.

In this specialized cell division process there is a risk that there will be a chromosomal traffic accident, which occurs when a chromosome accidentally diverts to the wrong haploid daughter cell during egg and sperm formation prior to their separation into individual eggs and sperm. In the case of a nondisjunctive Trisomy 13 chromosomal traffic accident, one egg or sperm receives two chromosome 13s (for symmetry, another will receive no chromosome 13 and fertilization involving this egg or sperm will lead to a condition called 'monosomy', which are typically miscarried). So, when there is an extra chromosome 13 in the mix, after the egg and sperm join during fertilization one of the two brings in the excess baggage leading to Trisomy 13.

Incorrect numbers of chromosomes are more common than we had imagined. Recent research has shown that somewhere between 5-25% of all eggs (but not necessarily fertilized eggs; women have thousands of eggs and not all of them ovulate) contain the 'wrong' number of chromosomes (this number is for all chromosomes combined, not just chromosome 13). 1-2% of all sperm contain the 'wrong' number of chromosomes. It is estimated that half of all miscarriages are due to fertilization involving a egg or sperm that carries the wrong number of chromosomes. In general, the most commonly diagnosed trisomies are 21, 18, 13 and the sex chromosomes. Babies with other trisomies rarely survive past the first trimester, and do not make it to full term.

The difference in incidence between eggs and sperm appears to be due to the particulars of how each is made. Sperm is constantly made after puberty and takes about three weeks from start to finish. In contrast, all of a woman's eggs began the process of meiosis while she was still in her mother's womb, but then hit the pause button. These paused eggs wait until just prior to ovulation to complete the first half of meiosis, which is typically 15-40 years later. Something about the nature of this pause increases the risk of a chromosomal traffic accident. This risk gets greater as a woman gets older, which is where the magic number of 35 years old comes from. Particularly for Trisomy 21, the most common of all trisomies, the risk of having a baby with Trisomy 21 (1:300) when the woman is 35 years of age is greater than or equal to the risk of miscarrying due to amniocentesis, which is the unequivocal diagnostic test for all trisomies. Thus, pregnant women who are over 35 typically have an amniocentesis. What exactly happens in a woman's body between the ages of 30 and 35 to increase this risk of trisomies several fold remains to be determined.

Of the children that have Trisomy 13, 90% die by 3 weeks post birth (this includes neonatal death). By the age of one year, the number of fatalities rise to 99%. There are beautiful and rare cases of children that live with Trisomy 13, if you wish to read their stories click here. If there was even a small chance for Bryce's survival, we would have been honored to care for and cherish him. Sadly, Bryce's condition was too severe.

None of this is meant to scare you into not having children. The odds that you will have a healthy child are still much better than the odds that you won't. The take home message here is this: be in awe of your children, of yourself and of human existence. It's amazing that we are this perfect.

If you have any other questions, please let us know. We've read a lot lately.

Much love,

Los Zeiners

P.S. We will answer questions in the comment section. We are already amazed at what we have discovered and encourage you to read the comments.

Honoring Bryce

From Bryce Aubrey Zeiner

Dianna's hands cradle Bryce.

In the rising of the sun and in its going down,
We remember Bryce.
In the blowing of the wind and the chill of winter,
We remember Bryce.
In the opening of the buds and in the rebirth of spring,
We remember Bryce.
In the rustling of the leaves and in the beauty of autumn,
We remember Bryce.
In the beginning of the year and when it ends,
We remember Bryce.
When we are weary and in need of strength,
We remember Bryce.
When we are lost and sick at heart,
We remember Bryce.
When we have joys we yearn to share,
We remember Bryce.
So long as we live, he too shall live,
For he is now part of us,
As we remember Bryce.

These words were read today at Bryce's funeral. Deborah, a family friend and Rabbi, lead a peaceful non-denominational ceremony reading passages from Psalms and Ecclesiastes. Dad, Mom, and Grandma Mouge shared their thoughts (including Bryce's gifts) and although there were tears, there were also a few smiles.

Bryce's funeral was a very sweet and personal ceremony, only 8 people attended. The sun was at full glow and the grounds were beautiful. Bryce is buried at Mount Tamalpais Cemetery in the shade of a tall Redwood tree directly next to his grandfather Arthur Zeiner. Hundreds of small white flowers were placed in the ceremony and at the grave. They included tulips, spray roses, baby orchids and blue bella donnas -- all fragile and small just like our Bryce. We placed an Elvis lunchbox beside his casket that were filled with mementos for him.

• Elvis lunchbox- For Baby El, purchased after 9 week ultrasound
• First present for Bryce - a baby rattle picked out by Zane the weekend we found out we were pregnant. The rattle had 2 soccer balls on it, one on each end.
• Newborn green and white striped socks and soft green lamb finger puppet -- also purchased after 9 week ultrasound
• Dill pickle - for the extreme cravings you gave Mama Zeiner (eating 3-4 a day)
• A piece of chocolate from Mother's Day
• "Sling Bling"- a rhinestone cross with hearts that Gus gave me for Mother's day. It was to be clipped onto my baby sling.
• Small blue truck from cousins Dana and Jessica
• 3 rocks from Zion National Park (place of our wedding) - one for Gus, Dianna and Zane
• Painted art from Zane - Zane quietly painted one afternoon this past week, giving mom time to reflect
  
• Small picture book of family
• Words from Baby of Mine lullaby - sung to Bryce in womb and after delivery
• Bryce's foot and hand prints
• A letter from Mom

There are a few ancient Jewish traditions that Gus and I agreed to do to honor Bryce. At the beginning of the ceremony, you take scissors to cut and rip your clothes, right over your heart as a sign of mourning. The modern tradition is to have a black ribbon pinned and cut this, but Gus and I decided to acknowledge the original intention. Gus wore his wedding suit and the linen shirt was torn. Dianna wore her blue bridesmaid dress, the same dress for Zane's first Easter and the one she wore this Mother's Day. These outfits were worn on our happiest occasions and to celebrate. They had meaning to us and will be saved in a keepsake box. Also by tradition, all who attend walk from the chapel to the graveside. Family members carry the casket as they walk. Gus led and carried Bryce in his arms the whole way. Mom walked barefoot, a homage to Jesus' journey and the sacrifice he made for us. The distance was only about 0.25 miles, short enough for all family members to walk, but long enough to contemplate our sorrows. After the graveside service, family and friends bury the dead (not strangers), honoring by physical labor. This is perhaps the hardest emotionally to view and do, plus it also takes time. The entire service lasted 3 hours. This time honors the deceased but allows reflection during mourning and sometimes gives peace. Bryce was buried by love from his family in attendance. We honored Bryce today.

Be at peace, our sweet baby boy. You will be remembered.

These past 2 weeks have been emotionally draining, and we are still in complete shock. Since this weekend happens to be our 6 year anniversary, we decided to continue with at least part of our plans. Although we will not celebrate, Gus, Dianna and Zane will travel to Yosemite National Park for a weekend of solitude and reflection. We thought it was appropriate since Bryce was named after our love for National Parks; it is yet another way to honor him. We will escape from the city life, including phone calls, email and blogging. You will not hear from us until at least Monday.

We also wish to thank everyone for all of the support. We have received heartfelt emails, cards, blog comments; flowers; food; and even presents for Zane (too sweet). Although we have not replied to many, know that we have read your words and received your gifts. You have been so amazing, we are truly blessed and touched by your love. We do not feel alone in our sorrow.

Please know that we still have stories we want to share with you, although we do not yet know when we can write about them. For example, Bryce's baptism was not conventional and a story worth sharing. Today when we returned home after the funeral and opened our mail, we received Bryce's baptism certificate and a note from the Chaplain. Mom wept.

All our love,
Dianna, Gus, and Zane

Mom's thoughts

Please view my Mama Zeiner blog for my most recent and loving thoughts about baby Bryce. Link is to the right...

Many thanks,
Dianna

Our sweet little Bryce

Bryce Aubrey Zeiner
May 15, 2009
21 weeks gestation
10 inches (25 cm)
14 oz
Beautiful baby boy.

10 perfect little toes and fingers.

From Bryce Aubrey Zeiner

Bryce was baptized at 9:45am in utero while still alive. He was circumcised after delivery. We are not angry with God, he was present in the room and gave us strength.

The funeral is at 10am on Thursday, May 21, 2009. Bryce will be buried next to his grandfather Arthur Zeiner. Immediate family only to be present.

Thank you for your thoughts and prayers.
Dianna and Gus

Update

Many people have called or emailed with kind words and prayers. We want you all to know that we are home and grieving. Bryce Aubrey Zeiner died at 10:45 am on Friday May 15. Dianna delivered Bryce at 10pm. We were able to hold, view and love Bryce for several hours. The time allowed us to begin the process of closure. Physically Dianna is well but neither of us feel like this wound will ever heal. We will write more when we can.

Late Thursday, it was confirmed that Bryce had Trisomy 13. His suffering has ended.

Thank you for your support.

-Gus and Dianna

Decision

We have to warn you that this post will contain details of what we have struggled to understand, and what we have decided to do. Articulating this will help us in our grieving process. We do not expect you to read this, nor will we fault you if you can't. -Gus and Dianna

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Wednesday we went in for an echocardiogram, which is a detailed ultrasound that is used to evaluate the heart. The results revealed that Bryce has a good heart. Although this might appear to be good news, it has to be viewed in the broader context of what is happening.

The most severe abnormality that Bryce has (or more accurately, what the ultrasound can diagnose) is called a congenital diaphragmatic hernia (CDH). The diaphragm separates the contents of your chest (heart and lungs) from the contents of your belly (stomach, intestines, liver, kidneys). Bryce's diaphragm didn't close completely, and has a hole on the left side. Bryce's stomach has migrated through this hole, and is situated next to his heart, as are his liver and intestines. Those of you accustomed to looking at ultrasounds will be able to see that Bryce's heart is right next to his spine, and the other dark mass in the same plane is his stomach (for orientation, he is facing down, head is left, his spine is the curved dotted white line).

This is a serious problem because Bryce's lungs have not properly formed due to the crowding in his chest cavity. As a consequence, Bryce's lungs will ultimately fail to form completely and will not gain adequate strength through the second and third trimesters. The surgery that could potentially correct the CDH is only performed in two hospitals in the country and is reserved for use in cases where CDH is the only problem to fix. Minimally, Bryce also has a bilateral cleft lip and palate and kidney dysfunction. The combination of these abnormalities points to an underlying chromosomal or genetic problem; the identity of the specific abnormality is most likely Trisomy 13, or one of several possible syndromes. Bryce's poor fortune can be summarized by the following numbers - based on the quadscreen results (from weeks 12 - 17) he had a 1:13,700 chance of developing an aneuploidy other than Trisomy 21, and even smaller odds for the other potential syndromes. Bryce's abnormalities could not have been seen on the ultrasounds at 9 or 13 weeks. With the low numbers received from the quadscreen, his condition unfortunately is something medical science could not catch until now. The first wave of results from the most recent genetic testing will be back tomorrow, but due to the extent of what we, and several doctors have independently observed by multiple ultrasounds, this information will be important for the future, but will not influence what we must do now. Unlike Trisomy 21, Bryce's abnormalities are not survivable.

We have made the decision to end Bryce's life on Friday. Bryce will have the best quality death that we can give him. Bryce's heart will stop beating. Death will take seconds and will be relatively painless. Bryce has most likely never known a life that wasn't uncomfortable, as the problems he endures have been with him from the earliest stages of growth and will continue to worsen as he develops. To put it bluntly, there is simply no chance for his survival with or without intervention, and if we were to allow nature to take its course we would be endorsing greater discomfort in utero and a prolonged and painful death by asphyxiation. That is something we can not, and will not tolerate.

We could have chosen to proceed by putting Dianna and Bryce to sleep under anesthesia, and upon Dianna's awakening everything would be over. We will not go into the details, but this option is not something that we can do. Bryce is far enough along in the pregnancy that we can deliver him and hold him in our arms. Bryce will be baptized, circumcised and buried in the Zeiner family plot in Marin, CA with his Grandfather and Great Grandparents. We take this decision very seriously and we want to respect and love Bryce the best way we know how.

As parents, we are charged with loving and protecting our children. Bryce's existence was not an accident or mistake, it was a choice that we consciously made because we wanted him to be a part of our family. Our decision to end Bryce's life now will prevent him from enduring pain. As his parents who love him this is the only thing that we can give him.

-Dianna and Gus

What to expect...

Hello family and friends,

Later on today, we will post information about yesterday's ultrasound and today's echo cardiogram. On Thursday we will have the results of possible Trisomy 13 or 18 and maybe the results of the MRI. The full amniocentesis results will not come back for 2 weeks. If you find that these details might be hard for you to read, we suggest that you do not come back to this blog site for now. We understand.

To place things in perspective, let us explain a few things. Bryce has multiple factors wrong with him. These include cleft lips, kidney stress/lack of proper function, and an incorrectly developed diaphragm that subsequently causes other organs to place pressure on his heart. Even if he was eligible for the in utero surgery to fix his diaphragm, the prognosis is grim. We are currently doing the requisite tests to determine if Bryce is eligible for this risky surgery. Without surgery Bryce's lungs will not be able to develop. To be honest, we just could not make any decisions yesterday. After a hard night's rest, today might be different.

Currently Dianna is not in medical danger, this could change as the pregnancy progresses into the third trimester. We are at week 20 now. This is a factor in our decision.

We are receiving the best possible medical care at Stanford. Yesterday's results were confirmed by 4 individual doctors and additional medical personnel.

The majority of the test results will be conclusive by this Friday. We will keep you informed.

All our love,
Dianna, Zane, Bryce and Gus

Bryce Aubrey Zeiner

**Updates are posted here (http://zeiner.blogspot.com/).

The 20-week ultrasound that we had on Monday demonstrated conclusively that Baby El is a boy, who now has the name Bryce Aubrey Zeiner. Aubrey is Dianna's grandfather, and Bryce is named for Bryce Canyon National Park in southwest Utah which was one of our favorite stops on our honeymoon. Dianna, Zane, Grandma Mouge, Bryce and Gus all went out to dinner on Monday evening to celebrate the newest addition to our family.

This morning we received a phone call from Dianna's Obstetrician who soberly relayed to us that the ultrasound revealed that Bryce has a number of independent developmental abnormalities. Today we went to Lucille Packard Children's Hospital at Stanford, and a subsequent high definition ultrasound confirmed the previous conclusions. Due to the extent of Bryce's developmental abnormalities the prognosis is poor. The most likely explanation is that Bryce has one of several possible chromosomal abnormalities that will not be compatible with his survival. The best possible scenario will require multiple surgeries, both in utero and post-delivery, and even this possibility is a long shot.

To keep this possibility on the table, we have taken the requisite next steps. The first of these steps was to perform an amniocentesis, which is a test that is used to diagnose chromosomal abnormalities, the results of which will provide answers and hopefully an explanation for what is happening. Bryce is currently in no pain, and Dianna is in no danger.

Updates will be posted here as information filters in over the next several weeks. We have a request for our family and friends, which is that initially you allow us the space we need to process what is happening. We know that your thoughts are with us, and we are thankful that we have you all to lean on, no matter what decisions we have to make. We will need you in the coming weeks.



Much love to all of you.

-Dianna, Zane, Bryce and Gus