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

Married for 5 years!

May 25, 2008

Zeiner family at Checkerboard Mesa, Zion National Park


It has been a while since we have posted on this site, but we could not miss the opportunity to write about our 5 year anniversary. Believe it, it HAS been 5 years. The picture above depicts a happy family that traveled to Zion to celebrate a joyous occasion. It is kind of hard to tell, but can you guess what time of the day this picture was taken? (Hint Dianna is not wearing any makeup) Oh yes, it is at dawn... and to reach Checkerboard Mesa from our hotel was a 45 min drive. We decided to spare our hotel neighbors and gave up trying to get Zane back to sleep at 4am (poor kid sleeps poorly on vacations, but great at home) to try to make the most of it by having a morning adventure. The sun rose at 5:15am that morning and we saw it with all of it's glory.

Looking back on our anniversary weekend, we had a wonderful time. During the thick of it, we were quite exhausted. Zane, as sweet as he is, is quite a handful. His new "toddler" phase is very interesting and he is active to say the least. Zane can run and climb... and instead of halting this developmental stage, we decided we are very happy to have a healthy and athletic infant. Besides, it is getting Mommy back to shape. Zane sleeps in the backpack, and then runs around when we are pooped after our hike. His sleep cycle will change with just one plane or long car ride. He really is a schedule monkey. Plus when he is tired, Zane throws temper tantrums. Yippi!

But having stated all of that, we really did have a fun time. Some memorable experiences are:
* Zane's first time in a pool at Paris Hotel in Las Vegas, underneath the Eiffel Tower.
* Hiking Kolob Canyon, Zion NP for the first time in over 10 visits.
* Going to Gus and Dianna's "Happy Place", Zion National Park, with their beautiful son.
* Witnessing a bride and groom enjoy their moment while taking wedding photos at Zion Lodge and reminiscing.
* Taking an inside tour of Hover Dam.
* Searching for decent coffee for Gusti.
* Truly enjoying Vegas, even if it was just one day. GREAT food and fun walking.
* Making the most out of what could have been a disastrous weekend.

Lesson learned, Gus and I will be traveling duo on our next anniversary. Anyone up for babysitting Zane next year? Think about it grandparents... you do want more grandchildren, don't you? Up for a vacation to bond with Zane?

All our love,
Dianna, Gus and Zane

Road trip 2007

We're home! Wow, what an awesome vacation! Crossing 7 different states, the Zeiners have returned after a whirlwind tour visiting family, friends, and amazing places.

Our trip began heading north to Oregon for a wedding. Our friends, the bride and groom, gave a heartfelt celebration, one that we will always remember. Dianna was reminded that once again the Northwest coast is beautiful, not knowing that so many shades of green even existed. The pictures of the waterfall, were from Multnomah Falls, on our way out of Portland, OR. Traveling east towards Idaho we were shocked to see that desert can exist this far north, and that when you stop at Hungry Redneck Cafe, that you should actually expect to meet some rednecks.

After arriving in Moab, UT and only having 4 hours of sleep, Dianna woke up at 6am to see the orange rust landscape she missed since the Zeiner wedding. The Arches were spectacular and even though we only had 1 day to visit them, we snapped numerous pictures. A moderate hike up to Delicate Arch was appreciated after being cramped in the car. The desert heat reached almost 100F that day, and although we were well hydrated and sunblocked, Zane did receive his first sunburn. Luckily SPF50 allowed only a surface burn to penetrate, he did not seem bothered and his skin was healed within the next 2 days. Since Moab is the mecca for mountain biking, Gus also got a morning ride in the next day before heading to Santa Fe, NM.

On the way to Santa Fe our route brought us directly towards Mesa Verde National Park in Colorado. Since we are suckers for National Parks, we made a quick pit-stop to see the Indian ruins from 800+ years ago. 2 hours later we were off to Sante Fe, but poor Zane could not handle the car and the altitude changes any more and the next 300 miles were unbearable, the worst leg of the trip. Luckily when we arrived in Santa Fe, Zane's sweet personality returned as he met long time family friend and talented artist Kate Palmer. The next morning we went to her studio and saw her neat environmentally green house (it was an actual house, solar panels and all) at the outskirts of town. Not wanting to leave so quick, but definitely wanting to see Nanny Pam and Grandpa Van we headed to Ruidoso NM for a Vandertulip family reunion.

At the reunion Zane met Meemee, his great-grandmother, and many Vandertulip cousins, aunts and uncles. Even the adults were kids again as we all played in the world's largest sandbox at White Sands, NM. Gusti's first Father's Day was spent along side our cousin Joe-Daniel's first dad's day and Grandpa Van first Grandfather's Day. Gus woke up to his son and wife giving him presents that we lugged across country for his special day. Books on hiking in the Bay area, National and State parks will be used with his new hiking backpack to carry Zane. A plan to spend our first camping trip together was also announced for Labor Day weekend, which we will travel to Kings Canyon NP.

But wait our trip is still not over...

After the reunion, we headed back to California. On the way to Arizona, we stopped at a Ghost Town called Stein at the NM-AR border. This was something that Dianna, Nana and Papa used to do on their road trips when she was a child. Stein was a town of 1200 people, but the advent of the diesel engine caused this booming metropolis to fade away, not needing this water stop for the outdated steam engine trains. Outside of Tuscon, AR we made a quick drive thru Saguaro NP, home to thousands of 100 year old 25 feet tall cacti. We were pleasantly surprised how neat this park was, especially for a day trip. Afterwards a starving Zeiner family ended up in what looked to be a neat Mexican restaurant. Although the Luchador decor was favorable, the food was not. It was the first time in Dianna's life that she thought Mexican food tasted like dog food, yuck! Although it took us a while to find a hotel that night we somehow mustered enough strength to wake up the next morning.

Finally we made it to our last stop of our road trip, it was time for Zane to meet his 95 year old great grandmother Nuki. We spent a very nice evening with Nuki and Aunt Mady catching up and hearing old stories. The next day for memory sake, we briefly drove around LA stopping at our favorite breakfast joint, Kings Road Cafe and the Santa Monica beach. Zane touched the ocean for the first time and we all got in the Prius for our final leg home. To our friends in LA... we miss all of you and were honestly stuck with a crisis of choice. There are too many to visit on a one day trip. We really wanted Zane to meet Grandma Nuki and we decided to end it there. Forgive us for not contacting anyone else, but do not worry we will visit again soon. We love LA!

So we are back and happy to be at home. We traveled over 3000 miles, 100% by car. Our new Prius was awesome as we frequently got 48 mpg. we never had to stop and get gas more than once a day. We saw 3 National Parks, 1 National Monument, a ghost town, waterfall, desert, and ocean. We laughed with family and friends and have memories to share for a lifetime. A photo album is above on the right giving about 125 photos of our 250+ photo vacation. Even though this is the longest post so far, we hope you enjoyed hearing about and viewing our trip.

Love to you all! Dianna, Gusti and Zane

4 Year Anniversary - May 25, 2007

Dianna and I were married over memorial day weekend in Zion National Park in southwest Utah. We chose the venue and date because we have a bit of a national park fetish, and we wanted a three day weekend to visit more parks on our anniversaries (1st = Zion NP, 2nd = Crater Lake NP and Redwoods NP, 3rd = Olympic NP). This year, with the arrival of Zane, we needed to stay a little closer to home, and chose to visit Lassen Volcanic National Park, which is about 5 hours away, east of Redding, CA.

Dianna managed, somehow, to fenaegle a just-canceled-room at a bed and breakfast in the booming metropolis of Shingletown, CA, which turned out to be a hidden gem. On the first day we drove to the NW entrance of the park at Lake Manzanita, where we stopped by the bookstore to get the details on what hikes were open and what were closed. We learned that unfortunately all the cool thermal stuff (this is a volcanic park, after all) was still under a heavy blanket of snow (not the first time we have run into this problem), and none of those hikes were open. Instead we opted to strap Zane into the Baby Bjørn and hike up to Crags Lake, which we later learned was lacking in the part about the lake. We met a couple atop the hike who had been hiking there every memorial day for 20 years, and this was the first time they had ever seen the lake dry. We hiked back down, and drove through the western half of the park.

To this point we were having a pretty good time, but frankly thought that Lassen was a little on the lame side. Don't get me wrong, it was very pretty, but generally national parks blow you away with otherworldly beauty (2000 foot shear cliffs, impossibly balanced rocks, huge trees, et cetera), which Lassen so far appeared to lack. We figured that at least the bed and breakfast was cool.

The next morning we decided to drive to the other side of the park to the Cinder Cone hike, which required us to do 7 miles each direction of driving on fireroads with our Prius. I was laughing on the inside for the entire drive, as I remember reading in Harper's that 87% of Ford Explorers have never been off road. The hike started off alongside the Fantastic lava beds (I didn't make that up, that's actually what it's called. It was indeed fantastic), and slowly climbed up to Cinder Cone.

The hike is listed as 'strenuous' in the trail guide, because it gains 750 feet in a little more than half a mile... and it's like climbing uphill on a beach, as the ground is basically sand. Although we had not planned on trying to get to the top with an infant strapped to my chest, on the hike to the base of Cinder Cone I managed to convince Dianna that it probably wasn't so steep, and we should give it a shot, as we could turn around whenever we decided it was too tough. She first responded by asking me if I had been sniffing glue in the parking lot. Ultimately her sense of adventure kicked in and she said sure, let's go for it.

Then the trail went straight up, and we slowly but surely made progress towards the summit.



Zane had really been digging touching the tree bark and pine cones and was awake for the majority of the hike. Once we got to the top we hung out for a while, ate sandwiches and checked out the view while Zane breastfed. The last part is because the bottle of breastmilk that we had stuffed in my pack conveniently turned itself into cheese on the hike, and looked too horrifying to feed to him. There are a ton of pictures of the hike here.

While the two of them were busy, I stared at the map, and realized that we could loop the hike by going down the backside of Cinder Cone. We were somewhat shocked to learn that the back was steeper than the front. The pictures don't do it justice, but it was crazy steep. We took our time and got down safely, and made it back to the car without being reported to child protective services. If anyone is planning on going to Lassen, this hike was really cool, and redeemed the lameness of the previous day.

It was a great weekend. Pictures are more better, go check them out.

Zane's room - the nursery

Here are some pictures of the nursery, for those that are interested. Yes, I was able to work in Tiffany Blue in the room, without making it too girly. I am VERY proud of this!

Click on any picture to get a larger version

Baby Registry

Feb 13, 2007
Attention family and friends:

Someone was kind enough to purchase the Sound Sleeper from our registry at Day One. Unfortunately Day One lost the information of who bought this for us. Please send us a blog comment or call us at 310.497.0735 so we can properly thank you.

Many thanks,
Dianna

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We are registered at Day One in Palo Alto, which is a one-stop-shop place for babies and parents. Although Day One has a webpage, they don't have an option for online registry, but if you call, they will have our list on hand under 'Zeiner'. To order an item, you can call them at 650.322.3291. Since we are in the store frequently, we can pick up your orders, which saves on shipping. Alternatively, if you'd like to see Day One, you can go in and pick the item up yourself. There are two stores, one in SF near Laurel Heights, the other is near Stanford. Directions to both are on the webpage link above.

Stuff we're registered for at Day One:

1. Baby Bjorn Bib (received)
2. Tiny Love Gymini- baby floor playmat (received)

3. Diaper Dekor - like a diaper genie but apparently better (received)
4. Diaper Dekor refills (received)
5. soft covers for car seat straps (brown teddy bear)- (received)
6. Halo Sleep Sack (received)
7. Secure Sleeper (received)
8. Wipe Warmer (recieved)
9. Sound Sleeper (received)
10. Lamaze and/or Infantino foot and wrist rattle set
11. teething stuff - blanket, beads, toys (received)
12. Skip Hop Splash - bottle drying rack
13. Baby Buddy secure-straps
14. Medela breast pump (received)
15. Infantino spiral spintop toy
16. Gift Certificates for classes offered at Day One

NEW - We are also now registered at Target.com
(baby gift registry under Dianna Lester-Zeiner and Gus Zeiner)

Other stuff, not on a direct registry:

Stokke KinderZeat high chair - red
REI gift certificate for Kelty Hiking baby carrier and Chariot bike buddy

your expertise - whatever your favorite baby toys or books are

Stuff we already have:

Baby Bjørn
Baby Grooming Kit
Bathtime fun! (toys, tub, frog pod, rubber duckies)
Bottle Warmer
Crib and bedding
Stroller and carseat
High chair cover
rocking chair
changing table
vibrating baby chair
diaper bags =)

Baby Einstein DVD collection (set 1 and 2)
Dr Seuss collection
clothes up to 6 months