Monday, July 26, 2010

The recipe

I've had a handful of people ask about the recipe for the Chicken Enchilada Dip.

Remember this?

For a girl who isn't a huge fan of spicy things, I sure have had a change of heart lately.
Bread will give me heartburn, but this recipe with plenty of cayenne and cumin? Nada.
Go figure.

So, since I've made it three times in the last week, and enough people have asked me for it, here you go.

Same bad photo, double the kick.

*2 Chicken Breasts, cooked and shredded
(or you can take my short cut here and just used canned chicken. Less cooking time means it hits my mouth faster. And if you are familiar with Aaron's motto during my pregnancies-"keep your arms and legs away from the mouth"-you realize that quicker to the mouth is a good thing!)

*2 Tbsp olive oil
*1/4 cup diced onion
1 clove garlic crushed
1 Tbsp flour
1 15oz can tomato sauce
1/4 c water
2 tsp cumin
1/2 tsp oregano
1 tsp cayenne pepper
1/2 tsp salt
pepper to taste
1 15oz can black beans
1/2 c shredded cheese
1 Tbsp chopped cilantro
Corn chips

Heat oil over medium heat, add onion, saute until tender. Add garlic, saute 30 sec. Whisk in flour until combined. Slowly whisk in tomato sauce. Add water, then spices. Bring to boil, reduce heat to low then simmer 15min. Combine chicken with sauce.
Preheat oven to 375. In a 9x9 baking dish, layer chicken/sauce on bottom, spread black beans over chicken/sauce mixture, sprinkle cheese on top. Bake 20 min. Add cilantro after cooking. Serve with chips.

I'm not digging the cilantro lately, so I skip that, and have been bumping up the cumin and cayenne and oregano. This coming from someone who has burned through a jar of cumin this year and previously took 7 years to go through one jar. No exaggeration. (and yes, I know spices aren't supposed to last that long, yada, yada, yada) And using cayenne? Unheard of in this house. Now the just purchased jar is almost gone.

Pregnancy is weird stuff I tell ya.
Also, I think we can rule out that whole spicy food starting labor thing.


It frequently crosses my mind lately that I would be content to just stay like this forever.

Yes, I'm tired.
Yes, I'm getting uncomfortable.
And quite frankly, my feet just plain hurt day and night.
Not that this changes my choice of footwear. If they are going to hurt no matter what, I may as well still rock the peep toe pumps and strappy wedges while I can, right?
The constant contracting I could do without as well. It gets annoying after a while.
Yes, I miss my body and my normal clothes and actually running (it's nearing waddling and not pretty anymore!) and having full functionality.
All that good stuff.

But right now, my son is safe. He is alive. He is active and nourished and tucked away from the realities of the life he is about to face. The realities that we are all about to face.
It's totally and completely selfish of me, but while I'm anxious to meet him, and hold him (oh dear heaven I hope and pray he is well enough at birth to really cry so that we get to hold him!), right this minute if I could forever keep him tucked away safely inside me I would.

Charlotte turns 2

How is it possible that this child is two already?

I swear it was just yesterday that she was looking like this:
Unreal the way it flies.

We had a mostly great birthday party for her. Mostly because the girl was ON one!
Full steam into the "terrible twos". Dang. With all our others it seems like that didn't hit until they were pushing three.

Oh well!

I tried my hand at fondant for the first time-not too bad.
I feel like I've totally slacked on the birthday cake thing for the past couple of birthdays, time to kick it back up a notch. So I went checkerboard too.
Go me!
(now I'll feel like a schmuck if I slack on the October birthdays....)

She enjoyed the singing and the candle,
but snapped back into her mood shortly thereafter.
As evidenced by the cake she dumped on the table, after which she rubbed the plate on her head.
(note the crumbs in hair. nice.)

She preferred to take an ice cream cone and have some alone time.

The ice cream seemed to do the trick and she was back in good spirits for gift opening.
I can't even express how much I LOVE the dress up obsession that has hit lately! So much fun to watch her in the little shoes and stacking bracelets up her arm while she totes a purse and pushes her stroller around the house.


Friday, July 23, 2010

Nearing the finish line-the latest on baby Sam

Only one more scheduled round of appointments left in this pregnancy.
Wow, the end is near!
Too near some days.

The most recent lineup included a very long and very thorough conference with a couple of members of the Neonatology team where we will deliver.

It was also very sobering.

Let's break it down, shall we?

Holoprosencephaly (HPE) is a fairly rare condition. Rare enough that they are still trying to build a database of diagnoses from which to base research and studies on. They are still trying to build a basic of what genes may cause this to occur. To the point that we've been offered genetic testing (Aaron, myself and baby) free of charge so that they can add it to the research that is ongoing in hopes to nail down the possible places in the genes that the mutation that causes this thing occur. A great number of doctors have not even heard this name, let alone dealt with patients who have it.
To compound things, with the spectrum of HPE, there are different levels of how much brains are affected; at one end you have some people with HPE who lead a relatively functional life and are making it into their 20's (and likely beyond), and on the other end, you have those who do not survive birth, or if they do survive birth, make it only a very short time afterward.

Sam's odds? About a 60% chance of surviving the first month of life.

At least it's better than a 50/50 shot, right?

The statistics on it all are almost unbelievable when you take into account the full spectrum of HPE cases.

HPE occurs about 1 in 20,000 out of every live birth.

Only 1 in 200 babies with HPE make it through full-term pregnancy alive.

Roughly 2% of those survive through birth.

Less than 1% of those that survive come out without health complications, which will allow them to live during their hospital stay.

Total odds? roughly a 1 in 20,000,000 chance.

Talk about having the odds stacked against you.

The good news for Sam and for us is that he does not have the most severe form of HPE, which ups his chances. He's already beat the odds that weighed heavily against him surviving this long. The frustrating thing is that the type of HPE he does (most likely) have, semi-lobar (alobar being the most severe, lobar being less severe), has such a broad spectrum of outcomes, that there is no way to predict just how bad he will be until he is here. And even then it will take time to see how things go. Some babies with semi-lobar HPE end up with problems as severe as one would expect with alobar. Some fare much better, with fewer complications and less severe problems.

And while he does have additional challenges other than just the HPE (hydrocephalus, ACC, absent septum pellucidum), that will be the source of additional hurdles for him, he has-at this point-been spared other problems with major organs; his heart and lungs seem to be whole and strong, and other vital pieces of his brain appear perfect. We also found out that his optic nerves seem to look good from the MRI that we had a few weeks ago, so hopefully that will prove true upon his arrival and future scans. Frequently with the absence of the septum pellucidum, there is severe damage to the functionality of the optic nerves, and often results in serious vision problems-if there is vision at all. And that is just one of the repercussions of that little piece of the brain I'd never heard of until a few weeks ago....the host of problems that occur with the endocrine system, and their multitude of effects, is overwhelming.

Even after pouring over literally hundreds of pages of information over the past weeks, and really feeling like I had an idea of the laundry list of hurdles that we may most likely face, nothing prepares you to have to sit face to face with the drs that will be working with your baby as you go over what to expect in a mere matter of days as your baby leaves the world inside you where he has been safely tucked away for the past nine months.
It is frightening to hear that along with the Neonatology team, your path will very soon cross with neurology, endocrinology, pulmonology, cardiology, opthomology, occupational therapists, speech language pathologists, along with a handful of others. That there are a host of problems that will be carefully watched for. That they hope that your baby will not need a ventilator, but that it is very much a possibility. That you will deliver in a room specifically designed with a pass through window to the most critical area of the NICU, and that the odds are you will not get to hold him, or really even see him, unless by some miracle he happens to cry on his own at birth-which they do not expect. To talk of feeding tubes and surgeries. To have to discuss the very real likelihood that should he need a vent, he may not be able to be weaned off it and that we need to give serious though to the point at which we would either decide to do a tracheotomy, or stop forcing his little body to fight with machines for life....

It is frightening to sit face to face with those drs who may in the very near future be helping you make life or death decisions for your child.

It's a lot to digest.

There have been a lot of moments in the past few months that have seemed to last an eternity. The minutes between 9 and 10 am last Thursday may just rank at the top.
And it was nothing short of heartbreaking to watch my husband sitting next to me as he absorbed it all too. It sucks to watch the person you love most in the world struggle. It hurts even more to know just how much he must be aching inside, as I feel that same ache eating away at my own heart. I honesty cannot imagine walking through a single step of any of this without him by my side.

It was difficult to walk through the NICU, especially because with the amount of time our Neonatology meeting took, we had to bump the tour to the end of my other appointments which meant that Aaron had to be back at work and wasn't with me. While I was grateful at how cozy the NICU felt-it didn't feel like a big sterile OR like the one other I've been in-it was so hard to walk through there knowing that my baby would be the one in that empty spot very soon.
Though I do have to say it was heartwarming to see all those perfectly beautiful little babies in there....such strong little souls....


On a slightly lighter note, things are rolling right along on all other fronts.
Me? Same old, same old. Mentally and emotionally I may be a complete basketcase, but physically things are going so well it's almost comical. Everything checks out well, my labs still all come back fine. I could not have asked for a less complicated pregnancy as far as my own health is concerned. And it still cracks me up that every week the midwife comments on how tan my belly is! Getting more frequent contractions (waking up with them every morning at 4, which is getting old), but at least they are doing something even if it's not much. Enough progress internally that an induction should roll along fairly smoothly.

Speaking of induction, the date has been set for August 4th.
God bless our Perinatologist who understood as she told us we were booked for a delivery on August 5th and we pleaded for ANY other date that week since the 5th is our Anniversary. She laughed and fixed things. Thank goodness! Not that this will make our anniversary any more eventful this year-in a good way anyway (who wouldn't want to spend their anniversary in a hospital wondering if their child will survive?), but hey, at least Sam will have his own day.

So there you have it.
One more official check in with everyone next week-the last week in July-to make sure everything is still good to go. Assuming he stays in there that long. And with my history we have no reason to believe that he won't.

Then the real adventure begins.

A year ago

My house was just emptying itself of 4 of 5 of these little creatures:
Oh my word they were cute!

This one stuck around for the long haul

Thankfully she got over the shoe chewing thing very quickly. Now she prefers to chew pencils. Whatever.
It fits in with all the other weirdness in our house.

People don't believe me.....

When I tell them that this child is constantly into things.

Constantly into trouble.

Very, um, adventurous.

I mean really, how could that sweet little curled up child possibly get into trouble?
(most recently? burned hand, hair elastic, scaling the swingset....)
Ironically, with the same bed that she sleeps peacefully on in that last picture.

Take a close look at that (very messy) face.
Charlotte vs toddler bed.

Two weeks in the bed, three stitches in the face.
(no, I don't usually let her suck on nail polish bottles. Nail painting was used as bribery to hold still for the photo and she insisted on holding it in her mouth. whatever.)
Just in time for her second birthday.
But at least she waited until after family pictures!
And it is kind of amusing that from a few feet away it looks like she used eyeliner for the cat-eye look, along with a lovely purple shade of eyeshadow.

I will spare you a picture of the injury that followed this one. On Saturday she took a chunk out of her thumb with a potato peeler.
We now have a matching set; "eye hurt" and "hand owie".
Ah, to have a sweet, mild, docile little girl.....


The boys go camping

On the third of those magic three days off, Aaron took the boys to a Fathers/Sons campout.

They have looked forward to this for months. No, I'm not exaggerating-months!

This particular activity does not have the most stellar record in our family.

For example, last year it included leaving at around 8pm, after all the camping gear was finally set up, to go find a place still open that was able to do stitches thanks to a hatchet in a knee.


This time around I am super happy to report that there were no injuries!
Yes, that's right, no broken limbs, no stitches, not even cuts and scrapes. Hallelujah.

A whole lot of dirt and very little sleep, but no injuries!!

It seems like they all had a good time, as the boys are already counting down to next year.


Girls Night

So it's been almost a month.
A full month!
I was doing so good at actually writing posts thinking "I'll hit publish once I download the pictures". Taking a few minutes at a time to jot things down here because let's face it-it's much easier (and quicker) to sit down and type a few paragraphs than to actually write in a journal.
Even when you are long winded.

So, since I wrote this back on June 25th, I'm using it dangit! this blog needs a little more fluff lately.

Tonight it's Girls Night.

The boys are off camping so it's just me and the girls. The house has been freakishly quiet this afternoon and evening.
After we sent the boys off, Alaina went to play with a friend, Charlotte went down for her nap, and Malia and I hit the backyard. She lounged in the little kiddie pool, I lounged in the chair. Eventually I switched from the chaise to a regular chair so that my feet could share the pool. Add a few popsicles, and you have bliss.

I figured I'd let them call the shots this evening and make it their deal. 'Cause let's be honest here, my idea of a "fun" night would have consisted of a short run, a long bath, a massage (though with Aaron gone that was kind of out of the picture), and lounging in bed.

They watched a movie this afternoon, each with their own bag of popcorn.
They had cake for lunch.
They chose pizza for dinner.

There was plenty of giggling.
And then came the ice cream.
They wanted another movie and their nails done.
I'm happy to say that I didn't even argue their movie choice (Alvin and the Chipmunks, the Squeakqual-really wouldn't have been my first choice!), and they both thought it was just great.
I sat through it with them. Because moms sit through things like that to make their kids happy.
The nails are colorful.

The girls are full of sugar (there were Skittles and Starburst in addition to the garbage they'd already sucked down).
There are smiles on their faces.

And now that it's nearly 11, I'm ready to crash. Hopefully they are too. We'll see how long it takes them to build the fort out of the dining table. That's where they want to sleep. Hard floor under a table? Who wouldn't want to sleep there?

Hope you had an eventful Friday night as well.


A new family record

My kids are late tooth-losers.

The first tooth is usually lost around 6 1/2, one kid even pushed it till her seventh birthday. I always though that was weird because I remember losing teeth in Kindergarten....

Well, the family record has been broken.
And not due to an injury! Woo-hoo!

Dallin came running upstairs last week complaining that his teeth were loose. This has been an ongoing game since the first child lost her first tooth. One kid has a loose tooth, suddenly EVERYBODY needs a loose tooth. If you have kids you know how it is. Heck, the teeth could not be more solidly imbedded if they were cemented in, and yet child 3 would insist that yes indeed, there is a loose tooth somewhere in there! should child 1 or 2 have a loose one.

Ah, sweet sibling competition.

So Dallin's comments? I brushed it off.
Until every other child in this house had stuck their fingers in his mouth to check and see if it really was loose and insisted I check it too.
Sure, why not! His mouth had more traffic over a five minute period than Grand Central Station, what's one more hand in there?

Turns out, he wasn't kidding. A loose tooth. A very loose tooth.
And another pretty darn loose tooth.
And another one getting there!
What the?

The kids-still not having learned-told Dad the second he walked through the door.
Aaron's ears perk up when he hears the magic words "loose tooth!".....and there is no turning back.
Once he knows, that tooth will be out! Now!

And thus, Dallin got the tooth experience.

No pictures from the next day, but that next loose one came out too.
He has no bottom middle teeth.

Jacob it toothless on top, Dallin on bottom.

If they work together really hard, they might make it through some corn on the cob by the end of the summer.


Thursday, July 15, 2010

If you don't believe in Miracles, it's only because you aren't paying attention

And I mean that. Really.

There are people that say miracles no longer happen. Who choose to believe that because they don't see the Red Sea parted in front of their eyes, that these kinds of things don't exist.

That the "little things" are just coincidence. Or luck.

They are wrong.
Just flat wrong.

We were reminded yesterday-yet again-that we are constantly witnessing miracles. Some may seem smaller or simpler than others. And some are just flat overwhelming and unbelievable.

Some of them are provided through friends and family, some by complete strangers.

Some come directly from the heavens, in ways we can't fathom.

Some of them have been brought to our lives anonymously.
The hard part of that is that we are then left not knowing who to thank.

The overwhelming amount of love and service that has flowed our way in recent months, and truthfully for our entire lives but so very prominently in recent times, is nothing short of miraculous. The many ways in which our lives have been touched by the examples of others are countless.

We were discussing with a friend some of the challenges of life yesterday. She replied "The Lord does love us and look out for us. He just also teaches us and humbles us as well."

So very true. We simply hope we are good students in the lessons He is trying to teach us.
And that one day we will in turn be able to serve and lift those around us, and pay forward the many blessing with which we have been blessed. Though a lifetime of doing so would still only scratch the surface.....

The world is so focused on all that is bad and all that is wrong.

It is truly humbling to be surrounded by so much good. Thank you.
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Monday, July 12, 2010

Monday Monday


A new week, and a desperate need for productivity.

The week starts with a clean slate, but unfortunately not a clean house.

But hey, with laundry off to a good start (one load folded and put away, one in the dryer, one in the washer, and another about to be folded), my bed made, bathroom clean, and banana bread baking in the oven-all prior to 8:30am, the day looks promising.

At 34wks pregnant (that's 6wks to due date for those of you not as freakishly familiar with pregnancy timeline as some of us, and for this pregnancy means likely 2, hopefully 3 weeks till baby-come on baby, aim for August!), the panic begins to set in. I'm still hoping that we don't hear "It's time to get him out" at my appointment this week. The week by week thing is stressful sometimes.

Next Monday marks the return to real life again too as Aaron's next quarter of school starts.
Also we decided it would be a good time to refinance so the house must be appraisal worthy.
Nice timing we have.

Being a list maker at heart, the following were jotted down last night as today's "to-do's":
Little Boys' laundry
Charlotte's laundry
Towels (yes, more laundry)
Clean out Little Boys' room
Clean out office closet
Clean carpets-office, Charlotte's room
Hang Mirror
Paint Crate
Cut board for seat (that crate that is being painted is becoming a storage bench-needs a seat)
finish___ and ____for baby shower on Saturday (in case she reads this!)
Cut and paint trim for bathroom mirror

Not too bad, definitely doable.

Yes, I realize that blogging wasn't on that list, but hey, I found 5 minutes of quiet as I cleaned out my inbox, so you lucky gluttons for punishment who continue to wonder just what in the world goes on in my head get this gem. Besides, blogging has got to be more productive than checking Facebook, right?

The perpetual list for the week, or rather for asap but MUST be done this week:
Clean out laundry room
Clean out garage
Touch up paint: dining room, living rom, office, little boys' room
Paint baseboards upstairs
Repaint wall in Boys' room (the other boys)
Wash bedding
Make pillow and Case for Charlotte's bed
Call for copies of all ultrasounds and records
Make changing table cover
Paint hall bathroom vanity? (verdict is still out on whether or not Aaron agrees on this one...)
Find and sort baby boy clothes
Wash baby boy clothes
Wash crib bedding
Gather stuff for hospital

Those last few things above I've been putting off. I think as a coping mechanism. Worst case I don't dig out any baby clothes (just in case-still can't get over that fear some days of not needing them after all), Sammy arrives and Aaron has to find the tub o' clothes in the garage, and we'll wash them then. Since thanks to some very sweet people he has things to wear when he makes it home, the rest can be done after we know he's safely here, right? *sigh*
Except that whole hospital bag thing. I guess I should at least make a list for that huh?

I guess I'll add "make a list" to my list.
'Cause I'm like that.


Friday, July 9, 2010

Sneak Peek

Man, she's fast! :)

You see that little button over on the side there? <------
(ok, to the side and down a little)

You'll notice I don't really do the whole "add my button to your blog" thing, so she's the only one there. For a reason.

Cause she's worth it.

Shooting last night with Niki was an absolute treat! Seriously, it makes a world of difference to have a very personable photographer. Especially when a lot of kids are involved.

And there is a sneak peek at one of the maternity shots on her blog already:

The skies were perfectly overcast for many of the photos, and the sun came out for some finale shots.

I think if there were a photo to represent this past week perfectly, this is it.


This is what it looks like

when you take 7 kids out to eat.
(I have no idea what Aaron is looking at sideways)

We very very rarely eat out, especially with all the kids in tow. Any parent knows that eating out with kids is risky. You can imagine the looks we get from people when we walk in with our herd.
The assumptions are killer.
We went out last year for an early dinner (to beat the rush), and actually had three parties refuse to be seated by us. The hostess brought them over, showed them their table, and they refused. Nice, huh? Their loss though, not only were the kids stellar on that evening out, but we thanked the people who happened to sit by us without arguement by paying for their dessert. Don't get me wrong-when Aaron and I go out to dinner, I'm just as annoyed to sit by the obnoxious kids whose parents do nothing to control them as the next person.
*and since I keep deleting my further thoughts on this subject, I'll just say I have strong opinions on various factors that play into that, and leave it alone*

But I am happy to report that our children were good as gold last night. During family photos, and the dinner that followed (which was used as bribery to behave during photos. Thank you IHOP $2 kid meals!). The real kicker is that we didn't go to dinner until 8pm. Even more impressive that they were so good at bedtime!

I have to remind myself to not shoot smug glares at the people who roll their eyes at us when we walk in and watch with dropped jaws as we walk out. But for those people, I say Ha! Take that!
And I'm sorry they seated that other family next to you. I'm guessing your dining experience wasn't nearly as enjoyable as mine.

Tuesday, July 6, 2010


Life in our home is never boring.

If you've ever spent two minutes with us you understand.

And though lately all things concerning Samuel have kind of taken center stage, there are a myriad of other things going on. Outings, adventures, and a half a dozen blog posts to share our not so quiet life. Maybe by next week.

This week started off with all sorts of fun.

Tuesday was killer.
It was The Interrogation.

Duh, duh, DUUUUUUUH!

Oh yes. The full press.
All the kids lined up to find the culprit.

The crime?

Someone has stolen a Fat Boy.
No, I'm not kidding.

Ok, this wouldn't be as big a deal if this wasn't becoming a recurring theme. The kids have all been blessed/cursed with my sweet tooth. But one of them has also acquired sticky fingers.

I cleaned out my closet the other day, and out of 4 bags of lifesavers, one was empty, and two are now half empty. Previously one was open and I had eaten I think two lifesavers out of that bag. Also, the half package of double stuff Oreos was empty, as well as the bag of gummy bears. Not to mention the missing packages of coconut M&Ms.

Someone has breached the perimeter.

In our house Mom and Dad's room is not public space. The closet is ESPECIALLY not public space.

Hey, stop judging. If you had this many kids you wouldn't want them constantly pilfering through your things either. Heck, I don't know anyone with any kids who want them pilfering through their stuff!

Respect the perimeter! Someone is not respecting the perimeter!

And yes, I really do have that much junk food stashed in various places in my room. And that just scratches the surface. (Reason number 387 why I am a runner; I can indulge and not feel the least bit guilty about it because I know that I burn it all off anyway.)


Last weekend someone ate nearly an entire box of mint chocolate chip Fat Boys. Honestly, not that big of a deal because Aaron didn't like them much-and they were purchased specifically for him-but it's the principle of the matter darn it! It's annoying to find an empty box in the freezer. Also, we buy plenty of popsicles, Otter Pops and normal ice cream for the kids. When you are a grown up you have earned the privilege of the premium stuff; Hagen Daaz, Breyers and Ben and Jerry's are not made for children who can't tell the difference anyway. You have to earn those things in life.

Fat Boys fall into that same category at our house.

So after the empty box incident, I decided I'd count the regular Fat Boys left in the big box. Just to see.....

And what do you know, sometime yesterday morning, a Fat Boy went missing.

Kids to the couches!

Everyone sits until someone fesses up.

It's interesting to see how the kids react. Who finds it funny, who pleads for mercy, who just gets irritated.
Yesterday was quite eventful. One child begged the culprit to "Just admit it!", another lectured on two of the three basic house rules (Obey, Tell the Truth), ranting that "Oh great, someone disobeyed, and just like every time you disobey, something bad happens and now we're all stuck here! Just tell the truth and don't make it worse! You know the rules!".

I actually had to leave the room when Jacob started in on how whoever took it should just get coal for Christmas! ha!

After about 30 minutes of sitting there, Dallin took the fall. Whether or not he's the one who actually did it, I'm still not entirely convinced.....

But considering that he and Alaina admitted after the first empty box that they had concocted a plan to get up in the middle of the night to eat the Fat Boys, but had slept through Alaina's alarm that she had set for 1am for their middle of the night freezer raid and thus missed their opportunity, it's certainly possible.

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Reaching Out

Sometimes the ability to connect online just amazes me.

I finally felt like I really had a good grasp on the whole hydrocephalus thing. Found some good research info, hospitals that post their research articles online (which is more rare than I thought, except for the numerous sites that charge a ridiculous fee to access their medical journal info), as well as some online communities for those with children who have hydro. Heck, I'd even watched a VP shunt surgery online.

Enter new diagnosis. 7 syllables, 17 letters, an endless spectrum of maybes and wait and see.

Enter an entirely new and vast world of information to digest. And significantly fewer resources. From the stats that I've found, babies with HPE happen at a rate of roughly 1 in 100,000 live births. Approximately 3% of babies with HPE live to a full term birth, the rest either being miscarried, or passing away sometime in the second half of pregnancy.

Hey-at least we've beat those odds.

The catch is that HPE is rare enough, and apparently misdiagnosed as well, making the stats on it kind of confusing. There is no world wide comprehensive database to make the stats accurate. I read one report this week that gave an average survival of 6 months. That evening I was contacted by someone who has a 22yr old with HPE. 22!! Since then there have been others....a 5yr old, 8yr old, 9yr old, 14yr old......goodness....who knows what to expect.....

This sweet woman has directed me to a chat group for HPE, contact information for a research group, as well as contact information for a support group. The number of people out there who are familiar with HPE and are living with children with HPE may be small, but they are out there, and I have been blessed to have been contacted by a handful already. It is such a blessing to get an email from a stranger saying "I've been there, we've put together some information that will hopefully help you and your drs". From someone else who directed me to the opportunity to have our MRIs reviewed by radiologists with a Brain Research Center who have a lot of experience with HPE, who can evaluate our scans, and then give us some possible ideas of what to expect based on the development of others with similar scans.

Today I am feeling very grateful for this little group of parents from around the world that have come together to support each other through this journey. Though I wouldn't necessarily have ever chosen this path, I am glad that there are others who have walked and are walking it and that they are very welcoming and willing to guide and share and sympathize.

It is very overwhelming right now to be learning about an entirely new condition, and the added possibility of further complications from missing brain structures. There is so much to learn, so many specialists we'll need, and an infinite number of unknowns.

And yet somehow- despite my insane amount of fear and self doubt- the fact that I have my best friend by my side, a group of strangers willing to reach out, an amazing support network of friends and family, and the opportunity to drop to my knees to beg the heavens for strength, faith and courage, makes it all ok for right now.

Add to that one little baby boy in my belly with the hiccups, and this morning I can breathe a sigh of relief.

And just try to take it one day at a time.