Noah's Birthday: One Year Later

Last weekend marked one year since Noah was born. We didn't really know how to commemorate it - who does? We talked about several different things - planting trees, donating books or premie clothing, monetary donations - but when it comes down to it, we just wanted to be with people who had loved and supported us, walked with us, and made five trips to the airport in one day.

The week leading up to Noah's birthday was highly emotional for me. I am so glad, so blessed, that Dave was able to be home (not deployed) at this time.

We had dinner with Katie (Tom was stuck in AZ for the night), and fellow first-pregnancy-Trisomy 18 family, Kelly and Dan (who now have three lovely, healthy children). While there were many families who loved and supported us and Noah, if we were to have invited everyone, it would have been too many people and felt less personal. Katie made fresh peach pie - which many people who where here on Noah's birthday last year will remember as the best pie in the entire world. For real, that pie healed and comforted many wounds last summer. As such, Katie gave me a recipe card for "Noah's Famous Peach Pie."

All in all, it was a quiet day - a normal day - which is what we wanted this year.


I saw three individual signs of God's love for us on Noah's birthday.

1.  As I spent some time working in the yard, I noticed that my one surviving sunflower (of the 20+ I had originally planted) had finally bloomed. Additionally, I found a rogue sunflower seedling sprouting in the grass and repotted it.

2.  We received our first letter from our Compassion child. In April, Dave and I decided to sponsor a child through Compassion International. I chose Saju because his birthday was close to Noah's.

3.  God kept us busy with God. We spent the morning with our Pastor at a New Members class to become members of the church that's nurtured us these past hard years. I know that's not an "obvious" sign of God, but it kept us occupied, which is what I needed - not to dwell, but to be busy and with other God-loving christians.


"and whoever welcomes a little child like this in my name welcomes me." -Matthew 18:5

Trisomy 18 Foundation

We've created a legacy page for Noah at the Trisomy 18 Foundation website. Visit Noah's Legacy Page.

Money for Trisomy 18

You've probably heard of the Pepsi Refresh campaign, donating $1.3 million to different causes. Where the money is donated is up to us: each cause must be voted in to the top ten.

I'm supporting a cause created by a mom in Kentucky whose child was diagnosed with Trisomy 13. As a result, they were unable to find a doctor willing to help them. This story hit close to home for me, not only because of the Trisomy 13 - which similar to Trisomy 18 and Trisomy 21 (Downs Syndrome) - but because we also had a difficult time finding a doctor that would not only support our decision to carry, but also support us in finding surgeons who would operate. We were told that no doctor would operate on Noah because of his Trisomy.

No parent should not have that option. With $50,000, this grant would create an online referral system that would help parents find supportive doctors. Well worth the 2 minutes it take to sign up and vote. You can vote up to three times each day.

Hurry, voting closes on August 31.

Learn more: $50K: Care for children with Trisomy 13 and 18

Vote: Using the widget on the Right, or through the link above.

Photos of Noah

Today

Well, today just sucked.

We had a doctor's appointment in Fresno (Waiting Room Stories post). Our usual sonographer is on vacation this week - the first vacation anyone in the office can remember him taking. Our sonographer this time just didn't mesh with us and our situation. It's one thing to be professional, but now we know the difference between "professional," "professional with sympathy," "callous ass," and "doesn't know how to respond to our situation and has obviously never seen a Trisomy baby." John and Dr Morgan- our first sonographer and doctor at this new clinic - was professional - the one who was almost in tears by the time we left. Jeff and Dr Choa- our 'regular' sonographer is professional with sympathy - and because of that we feel 100% comfortable around him - he understand the situation we are in. Callous ass would be Dr. Wood's office, everyone. And then there's Mariella or whatever he name was today. She's the "doesn't know how to respond to Trisomy and obviously never seen it." She kept her distance and there was just something about it that told us she didn't know how to respond.

So we had some antenatal tests done - Dave and I don't understand, we thought we declined antenatal care, but then this might be standard? I'm not sure. There are three tests that Noah had to complete within the 30 minute time frame: 3 gross movements, fetal tone (heartbeat?), and breathing. I guess around now is when babies start practicing breathing on their own. Well, Noah didn't practice breathing. Usually, that would mean they'd send us to the hospital for 2 hour evaluation, or reschedule another ultrasound and try the test again in a few days. If he didn't pass the second round, they'd check me in. So fun times. Dr. Morgan had told us of a Trisomy 18 case he'd seen at the beginning of the year where they opted to continue evaluation in the hospital - she was there for two weeks - and then was able to check out. But it doesn't change the outcome - they still wouldn't delay delivery (before 32 weeks), or do anything more aggressive later. And the concept of me being in a hospital for an undetermined amount of time... in Fresno. Dealing with people like people in the Waiting Room. Away from Dave. For a situation that monitoring won't affect. Not worth it.

We also learned that as of 3 weeks ago, Noah was in the 5% for weight. 584g, 1.2lbs. They didn't do growth measurements this week so we don't know how that's changed, but that's never good. We expected him to be small, but it's still hard to hear it. Especially such a low percentile. Dave and I were talking on the way home - If you compared him to his like-peers - Male Trisomy 18 babies at 31 weeks - he probably measures right on, and is great compared to everyone else. Mainly because no one makes it this far to begin with. Also not a fun thought.

To top off the visit, we got no pictures. Ugh. So we're obviously only scheduling with Jeff from now on.

So we made it home, and Dave went into work, and then I promptly broke down. Sat balling with Slider for over an hour. Slider's got some great attributes but consolation isn't one of them. Just crying about everything. Nothing in particular. But everything at the same time.  Dave was able to come home from work a bit early and we canceled dinner plans and were able to just spend some time together, which i needed. (He's been flying/working nights the past two weeks in preparation for Carrier Quals out of Virginia next week.)

So that was a great afternoon only to be topped by this evening's news: Our travel insurance claim has been denied based on the fact that pregnancy is a preexisting condition. Well you just watch Dave and I fight this. It's total bullshit. We weren't canceling the trip because we realized I was pregnant. We canceled the trip because the DOCTOR(S) said I can't travel. So that's fucking awesome. I don't know who deserves to get $2k more than we do at this point. I'd go ahead and say we've earned it. So this will be fun. Not.

4th of July Weekend

Every year, I feel like the 4th of July sneaks up on me, and before I know it, I've got no plans. Poop. Probably as a result of this, Dave and I don't have any 4th traditions - unless you count rarely seeing fireworks. Last year we were in Perth, Australia, and Dave had a kangaroo steak for dinner and we saw a movie; the year before we were in Maryland at the Grebb's; I can't remember the years preceding those... So this weekend will at least be memorable.

On Saturday, we had a JO wine tour arranged in Paso Robles. For me, I wasn't thrilled about driving to Paso, spending 50$ for me to ride around in a limo (when i could be driving since I drove up there anyway) and then having to drive back. But it's never a dull moment with the single guys, that's for sure, and Dave found a way to pay for our trip.

Here we have Dave getting a Hanna Montana airbrush tattoo on his lower back. What we like to call a "Tramp Stamp."

When some of the single guys said "I'll pay you $100 to get a Hanna Montana tattoo" "Yeah I'll throw in another $50" Dave weighed the pluses and minuses and immediately said okay. So, there we paid for both our of limo tickets, all the wine we purchased, and then pocketed a bunch. Woot!

The day escalated quickly and was a lot of fun, save the last 45 minutes which were nothing but d-r-a-m-a. Aside from the drama, this was the first full-out day of neck pain, and I was poppin' Tylenol like they were Pezz...



On Sunday, the actual 4th of July, we had no plans. We used Dave's well earned money to go to Walmart-ugh-and buy two racks of ribs, which ended up being waaay to much and one sits calmly in our freezer. Dave and I realized we hadn't had ribs (homemade) since Summer 2008, when Mary and Kyle came to visit us in Virginia Beach. We decided to try two recipes out of the Webber Grill Book: one saucy, and one Memphis-style rub.

The Rub.

The Apple Mop Sauce.

Grilling, with some hickory chips, and sweet corn.

YUMMY. The rub was a bit peppery, the mop was awesome (it has shallots in it, and Dave said all he could taste were the onions, eeeeewwww. I, however, loved it.) the corn was amazing, the squash was bland.

before and after

Peach Cobbler with some local peaches. (I doubled the amount of crust.)

Slider, being Slider, and celebrating. 

After dinner, we went over to the Stephen's house for some fireworks. Local fireworks here are super lame. They are only on sale July 2-4. They cannot go more than 5ft off the ground. So we all sat on the curb to get a dog's-eye-view in an effort to make them more spectacular. 

Look! It's a picture of ME and DAVE!  And Noah. I look like a tent in this shot, but my dress is red-white-and-blue. Not the greatest picture, but it's at least a documentation that we were there together, all three of us :)

The little things

Last week's post was a downer, so I thought I'd write something more cheerful. Because the reality is, most of the time, Dave and I are ok. (I almost wrote "fine", but reality there is that we won't be that for a while.) Most days are not tearful, and while there may be a few moments that I think of Noah's fatality, I don't dwell on it usually. It would be impossible to function if I did.

A lot of times, Dave and I are happy with the normalcy of the pregnancy. We've never been pregnant before, so it's all new to us.

It simply is baffling that the human body can change so much physically. Let's face I went from being Annie to Whale-like-Annie and don't consider it a bad thing! When I go to the doctor's office, they weigh me every time. If I'd hit this weight a year ago, I'd be flipping out and exercising three times a day. But now, as a creep up to 150lbs, I'm not unhappy.

It's amazing to me that there is a little human body growing inside of me. I think that anyone who is skeptical about God has to become at least agnostic when they look at a pregnant woman: There is a HUMAN growing inside HER. Little toes and fingers. And a heart! So complex!

It's amazing experiencing Noah move. I've finally - finally - recognized the little movements in addition to his full-out change-of-position rotations.  They feel like bubbles. Once I was able to describe them to Dave as bubbles, he understood what to feel for and voila- he can feel Noah too! All those weeks I thought my intestinal track had shifted and that I was digesting food, nope, it's Noah. ((flutter flutter)) He say's "Hi!"

Most times I can look down at my tummy and play "On Which Side of Annie Is Noah?" and visibly tell the answer. I guess that's what people mean by carrying high or low - Noah hangs out most of the time upper right quadrant. Of course I don't know if it's his head or his rump.

And then there's the back pain. Not so much fun. After three months of sleeping on my sides, I only want to sleep on my back. Or my stomach. And guess what I can't do? Sleep on my back or stomach. The stomach for obvious reasons, but I can't sleep on my back because it compresses a main artery that sends blood to Noah. It's also sore from carrying extra weight at one point in my body. You try carrying an 11-15lbs bowling ball fastened to your stomach around for a while and see how long it takes you to develop back pains. Dr. Schipper said she would write me a prescription for "back massages from husband" if needed. I'm going to be trying prenatal yoga starting the week after next. (The studio is closed next Monday for 4th of July, blast.)

And then there's always the random cravings, random bouts of extreme tiredness, constipation, remembering to take the vitamins at give me constipation, remembering to eat fiberfull foods, peeing at least twice in the middle of the night, remembering to turn on the nightlight in the bathroom so I don't blind myself every night, and extra pillows everywhere.

So really, Noah's just a normal kid.

Father's Day

Disclaimer: Not Uplifting. 
Father's Day passed similarly as Mother's Day... though with less tears. I vetoed church because I didn't want to hear a sermon about how great and important dads are. It's not that I don't agree but rather that it is a constant reminder of what we will never have. Playing catch and teaching Noah how to ride a bike just aren't things we can think about without utter pain; instead, we'll be lucky if we get to hold him.

I have to remind us that we are perfect parents because we've given Noah the opportunity very few would grant him: The chance. The opportunity to make a difference in people's lives; to be treated like a normal baby instead of a fatal statistic; to be loved not despite all his difficulties but because of them. But still, we mourn for the loss of what we thought we'd have.

Noah's photoshoot

Full-body view of Noah, he looks like he's sucking his thumb, maybe. Omphalecele also apparent. (We learned how to spell it today.)

Noah's little legs/feet, crossed at the ankles. This is probably what's poking me every day...

Little fist! It's his hand, but his fingers are clenched so they're folded under.

Sucking on the umbilical cord...

Obviously he can't hear me tell him not to put that in his mouth....

Noah's boy parts! We had the tech, Jeff, show us because we found out he was a boy via amnio results. The big blob in the bottom left is his butt.  :)

We had an overall good visit with the doctor today. The Tech was disappointed when we had to schedule our next ultrasound while he is out of town. (Having to plan around Dave's schedule.) We had a minorly traumatic event as we witnessed a massive heart deceleration from 130s to mid 70s. So that was upsetting, but apparently not wholly abnormal. We spoke with Dr. Chao, who is our favorite, aside from Dr. Shipper. He has very good interpersonal skills. Dr. Chao arranged for a neonatologist from the hospital to stop by and meet with us. Dr Savid was helpful in discussing what options we have available - which aren't a lot, but we already knew that. We're planning on delivering at the Fresno hospital, where they'd provide some basic comfort care support. So overall, not a bad visit, but always emotionally draining. We're getting take out for dinner because a) we have no food and b) no energy to cook. 

Warning, the following includes judgmental comments. I'm just letting you know that I know they're judgmental. 

As always, we have many tales of the fall of the human race from sitting in the waiting room. Today's future-mom-of-notice was.... almost indescribable... Dave and I were unbelievably appalled. The office closes for lunch from 12-1pm. Having the appointments right after lunch are good because that hour gives the morning's rush time to even out, and you generally wait less. Well little-miss-Thang obviously didn't notice this, and continued to complain about the wait (they lock the doors until exactly 1pm). While we had to wait with her for 15 minutes, she drank a soda, pulled out some nothing-but-sugar-blue-and-pink candies, proceeded to announce to the other 10 of us waiting to get in that she was a gestational diabetic, but she didn't care since her due date is in 6weeks anyway. "I really shouldn't be eating all this sugar, but who cares." We also learned that this was her 7th child, (she's 31, I checked her birthday when I signed in.... come to think of it, she cut in front of me, but I don't care because I didn't want to have to deal with her); she has a baby girl, and a dead 12-week-old fetus in her that's causes extra fluid build up; she has the mentality of a 10 year old; she was wearing a tube top with a strapped bra. (Ok those last two aren't observations, they're judgements.)  I managed to avoid eye contact enough so that she didn't seek me out as a social companion in the waiting room (thank the Lord), but latched on to a 10year old boy who was there and talked about how many stitches and staples she'd had... There was also discussion of being in and out of jail, but I didn't hear the details, I don't think it was her that was in and out of jail, though, so that's.... good? 

Dave also thinks she's on welfare. Pure speculation, and judgement, but hey, if we can beat .007% odds and have a Trisomy 18 baby, it's almost a safe bet she's on welfare or unemployment. Or both.

When Dave and I over heard that she's had 7 kids, we just about lost it. How in the world can people like this get SEVEN kids and our FIRST has Trisomy 18? Why do bad things happen to good people, and why is stupidity continually recognized and rewarded in our society?!?!

Maternity Photos

Tada! While Diane was here - in the 45 minutes we had before we had to load everyone in the car to go to the airport - we did a mini-photo shoot of Noah and I. These are some of my favorites.

(Click on any of the photos to make them fullscreen large.)

The photo shoot wasn't hard until later - we were so busy getting everyone out the door, and then driving, and then driving again. But yesterday it was a little hard. I mean, I love the photos, but it's still difficult knowing that we won't have more photos of Noah. Regardless, the photos are a tribute to Diane's photography abilities - since the only light we used was the natural light from our bedroom window.  

So.

So. Dave's been gone for almost two weeks, boo, in Panama City, Florida. He comes home on Thursday, yay! Since he's been gone I've attempted to keep busy. I attended a surprise birthday party for a friend from church, attended a birthday soiree for a friend/Katie's neighbor, and saw a local production of Butterflies Are Free preformed by the King's Players. I met the director at Jo's soiree so it was fun to chat theater for a while. Our church was scheduled to have a church picnic on Sunday at a local ancient park with big trees, but due to high winds (25mph) we had to stay at the church (not nearly as fun). I also pet-sit Topher last weekend. Slider enjoyed having some company and playmate, but I think he was worried Topher would be a permanent addition - he just wasn't himself all weekend. This week I've been preparing for the Hamilton Invasion, who also arrive on Thursday. I'm driving to LA to pick them up, and we're banking on their "packing light" abilities so that' we'll all (7 of us) fit in our Highlander - with 3rd row. So I've been busy making nest-beds for the youngest boys, including a "clubhouse" in the walk-in closet in the guest room. I decorated it with Dragon and Navy paraphernalia and put a touch light and night-time reading books in there. It's pretty cool. It's like Nathan and John's own room, and I think Connor's going to be bitterly jealous. Ohwell.

Noah and I are off to our regular doctor's appointment with Dr. Shipper, Katie is accompanying.

more updates

I'm making this quick because I'm super tired of finding more things wrong with Noah.

We had a fetal echo cardiogram on Monday and the Tech found that Noah has Trucus Arteriosis. Click the link to learn about it becuase I don't feel like describing it. The good news is that it doesn't harm him while he's inside me, cause I keep him safe. As always, if it were the only thing wrong, it is treatable.

We had a really good expereince with the doctor there, super nice, easy to talk to, willing to listen, appreciated and supported our decision, inspired by our bravery, etc. The Tech offered to see us whenever we wanted to have an ultrasound - regardless of insurance - during his lunch any day. He's willing to do as many pictures as we'd like.

We also discussed that a) Noah's cute; b) we are blessed that he doesn't have any facial deformities; many babies with these types of abnormalities have cleft palates or the like. It's comforting to be able to just look and him and think he's beautiful, and not have to see everything that's wrong.

Slider's busy eating cat vomit, so I'll leave it all at that.

There he is!

There's our little Noah-boy! We had an ultrasound in Fresno today and were able to get some 3D glamour shots.

Another week goes by..

Another week passes by. It started off pretty rough - as is usual - with trying to make doctors appointments and not being able to and trying to sort through it all. The week picked up though. Katie and I - with Maya and Caleb - went shopping in Fresno, and visited Laura at Anthropologie as we oogled over the clothes there. Dave signed us up as volunteers to work a concession stand at the Fresno Grizzlies AAA baseball game. While we didn't have to actually cook the burgers, we did everything else, serving hundreds of people, and it happen to be Dollar Beer Night so the place was bouncing, even though it was a crispy 55degrees out and progressively getting cooler. I can honestly say that I have not worked that hard in a long long time. Another wife and I even did the dishes after the park closed. We raised money for the squadron's MWR fund, and I'm not sure what our total is yet. I also do not recommend eating anything from a ballpark: while the place was "clean", the food is "fresh", but it is all SO gross. Stick with hotdogs: at least there you know you don't know what you're eating. The "most interesting" item we served was a Frito Pie. I'm sorry if I offend anyone, but it does not sound appetizing to me. Two bags of Frito chips, topped with Nacho cheese, tomatoes... I don't even know what else, but I stopped listening after they said chips and cheese.... Friday, Dave and I had date-night and ate at Toshiko's restaurant in Hanford. It's a Japanese restaurant, but pales in comparison to those who've recently eaten real Japanese food. They don't even serve Toro, I mean really! And no Ramen! Blah! Saturday, Dave and I drove to Monterey for the day. We ate at a place called Pepper's Mexicali Cafe in Pacific Grove and went to the Monterey Bay Aquarium. I now want to live in Pacific Grove - the houses there are just my style. I can't even imagine how much many millions they cost...We drove up "The Five" on the way there, and took 198 all the way back. I-5 is a major highway and not too scenic, but 198 was really scenic, very twisty, and lots of valleys and peaks to look at. Today, Sunday, we drove up to Fresno to leisurely watch a Grizzlies game, which is definitely the way to see a game. I even kept score, using all the nerdy stuff my dad taught me. I had some trouble remembering how to mark everything, but the basics were there. The Grizzlies won 4-3 with an exciting 2 single run back to back home runs in the bottom of the Eighth.

We've chosen a name and will reveal it after we've told our parents.

This week

This week has been up and down, which isn't unusual I suppose.

Monday started with a call from my doctor, giving me two pieces of information. First, the address at which I can send a complaint about the clinic we were referred to. Second, she notified me that Lemoore's hospital, should we decide to deliver there, will only provide "comfort care;" if we'd like more aggressive care, we should deliver at Fresno Community Regional Hospital in Fresno. Lemoore will not provide an IV, intubation, oxygen and no surgeries. Comfort care consists of delivery (nice), wrapping the baby, and spending time with him. Fresno would provide intubation (so the baby can eat), an IV (to replace lost fluids), oxygen (to breathe), surgery options (like putting the intestines where they should be), and resuscitation. We would be referred to another perinatologist, but not the one we saw previously, which is good.  So basically, I felt like we have to choose between a good, supportive system at Lemoore, and more options for our baby in Fresno. It all comes down to the question "how aggressive do we want to be" with our baby.

So that was all a lot to take in. And not a decision I'd want to make for Slider much less our baby. Dr. Shipper made an appointment for me to speak to a pediatrician at Lemoore so that I could learn more about what Lemoore can provide. (This is why I love my doctor.) The pediatric doctor gave me a call within 3 hours to schedule a meeting.

On Wednesday we had our regularly schedule OB appointment. We were able to have some more questions answered and hear the heart beat.

Thursday, I met with Dr. McVey in Pediatrics. Katie came with me since Dave was flying. It was good to have her there because she's actually had children, with some minor complications, so she new some better questions to ask.

That was a hard discussion. It just sucks. Basically, if we don't do the surgery on the external-intestine, it will kill him eventually. But, since we know he has heart issues, and will likely have lung issues, do you put someone that unstable in surgery? Also, after surgery, he wouldn't get to come home with us after the surgery. He'd have to be tube fed for about 2-3 weeks and stay in the hospital. And that's assuming he'd make it through surgery. It's hardest because we don't know what his lung condition will be until he's born, and we don't know the exact heart complications he has. And then there's a chance he wouldn't be eligible for the intestine surgery to begin with if some hole isn't big enough. Some of this we'll be able to know more about via further ultra-sounds. But it doesn't help our situation much. We still have to decide. If we do surgery we will be being very aggressive; surgery means iv, intubation, the works.

So yeah. Rough week. I felt a little bit better when I realized that people have made this decision before. If someone is in a car accident and is brain-dead or vegetative, some one's family has to decide what to do. Hopefully there is a living will that can offer some guidance. Well, we don't have a living will, but have to make the same decision: how long is too long; how much is too much; IS there too much?

So this is lame. :(  But we try to stay positive, "always look on the bright side of life" and keep chugging along.

This weekend we had Katie and Tom over for dinner on Friday night, and participated in Relay for Life Saturday. We spent a few afternoon hours on a track walking around the track. We saw a youth Mariachi band, and a K-9 demonstration. Then we went back to the track at 2am to walk for an hour. Dave was a little less than pleasant about getting up at 130am, but we went out anyway and had a good time. We've been thinking of boy names, but haven't come up with anything yet. We had a girl's name all picked out. Maybe next time. ;)

the Weekend

Dave and I had a nice uneventful weekend together. On Friday night, we drove up to Fresno to celebrate the birthday of one of Dave's fellow-JO's (Junior Officer). There were about 10 of us, Laura and I being the token wives. We ate at Ruth Chris' Steak House.... I've not been a fan of red meat or chicken since getting pregnant, so I had the vegetable options, with a crab-cake starter. In case you've never been there or heard of it, this restaurant basically sells only steaks, with seafood options to satisfy the wives, or girlfriends that will inevitably get taken there. It's also very expensive: $10 beers, $18 appetizers, $42 steaks. Ouch. The cheapest thing we ordered was the $9 creme brule. Oh well. We don't spend that much regularly, and it was a special occasion. After dinner we went out to a bar, and were home by 1am.

On Saturday, we hung out. Didn't do much. Slept in, for one. We had dinner at a friend's house; they'd gotten up at 6am to start brisket, and again, not being a fan of meat currently, it was good, Dave really enjoyed it.

Sunday was church, where we (I) had a minor melt down. We spent the afternoon in Fresno, attending Triple-A baseball game of the Grizzlies, the field-team of the San Fran Giants. The Grizzles won 7-6, through some anxious innings.

We got a call on Sunday evening from the genetic counselor from Clinic Horrid. The Amnio results confirm that our baby has Trisomy 18. As odd as it sounds, Dave and I were relieved. We've prepared ourselves for Trisomy18, and if it had been something else, like something hereditary, we would have been broken all over again. No word on the gender yet. I've got a doctor's appointment on Wednesday morning, and hopefully the amnio results will have gotten to her by then so she can tell us more information.

On a happy note, I saw a video of one of my sorority sisters being proposed to. So sweet. Made me cry tears of joy.

Prayer Works

For anyone who is a skeptic, prayers work.

Dave's mom had been in town since Wednesday of last week, and we just dropped her off at the airport. It was a blessing to have her here with us as we've been working through everything. We were relieved as much as she was to realize that we have a support group here larger than we thought. Our church has been so helpful and supportive. Today we were able to meet with a doctor for the first time and have a good discussion and have questions answered. Our doctor gave us a standing invitation to be her walk-in appointment at any time, and even offered to deliver if and when the time comes. She was sympathetic, compassionate, astute, and informative; she was everything we didn't receive when we were told about our baby's condition. She's willing to see me twice a month as I progress to check the baby's heartbeat. And in another answer to prayers, she told us that last week, their office received word of another clinic that can provide the same services, but hopefully with a better bedside manner. She's helping us work out how to file a formal complaint about the doctor we were referred to.

So, to review. Prayers answered this week:
1. Dave and I are still strong and maintaining a positive outlook.
2. We've found we have a stronger support system here than we thought through friends and church.
3. We've found a doctor who is on our side, is willing to work with us and support us and our decision not to terminate our pregnancy.
4. There is another clinic available for Lemoore to refer patients too so hopefully no one else will be treated the same way we were.

Dear friends,

I'm sorry to relay this news to you via email, but it's just too hard for me any other way right now.

About two weeks ago we did a screening test for development abnormalities for our baby. One of the results came back abnormal for the AFP test. With a 25% false-positive rate, and Dave and I being young and healthy, we were pretty sure it was nothing, maybe that the baby was older than the doctors had thought.

On Monday we had an appointment with a Fetal Maternal Medicine Specialist to do an ultrasound and received the worst news any expectant parent can receive: our baby has Trisomy 18. Her brain is filed with water, her heart is enlarged and has several problems, her arm bones are wrong, and her intestines and liver are on the outside. 

Trisomy 18 is a genetic non-hereditary disorder. It happens at conception and is random. Every pregnancy has a .075% chance of having it happen. The 18chromosome didn't split correctly and as a result, our baby has three parts of 18 instead of two. This has caused her to develop abnormally in almost every aspect.

There is an 80-90% chance that she will not make it to her birthday; if she does, there is a 10% chance she would survive; if she does survive, because of the complications she has, almost no chance that we would take her home. 

For us, terminating the pregnancy is not an option. I could carry to full term, or miscarry at any time. 

Dave and I are not ok. We canceled our trip to Germany, Dave's mom is coming today, and we are trying to work through what we need to be doing.  We are meeting with the pastor of our church this week, and planning to meet with a doctor to discuss out ultrasound results and more of what we can expect. 

What we really need right now is love, supportive words, and tons and tons of prayers. The most difficult part of our situation is that the hard part hasn't come yet. Please pray for the strength of our baby, and for strength for Dave and I as we work through this time. 

Love,

Annie&Dave

Prayer Request

Please pray for Dave and I and for our baby.

1st Baby...

I always feel so stupid calling and making appointments. I don't know any of the lingo the doctors want to hear. I was referred out to Fresno's St. Agnes Hospital for our big Ultrasound, and when I called this morning to make an appointment, I felt that now-familiar apologetic conversation coming on: "I'm sorry, this is my first baby, so I don't know what exactly I need to be asking for, but I need [generic description]." Blah. It's not like I don't pay attention when the doctor tells me what I need, it's just that they assume I know exactly what it is, and am familiar with these terms. I'm sure every first time parent has felt this way - it just seems more noticeable when I'm in a new place.

The good news is we have an ultrasound appointment on APril 21 - the day after we get back from Germany! We'll find out the sex, woot!