February 26, 2013

Letting My Dreams Go and Choosing Joy

We've had a lot going on lately. I had my first birth photography experience this weekend and it was amazing. I am so, so thankful they let me be a part of such a beautiful experience.

It was also difficult in some respects. I had a front-row seat to the fact that part of this journey we're on is dying to old dreams and embracing new ones.

I always wanted all of our kids born in Montana. In fact, our boys were born in the exact same room at our hospital, 18 months apart. Baby Grace will welcome the world in Seattle.

I wanted to experience our Labor and Delivery's newly finished renovations, these beautiful birthing suites. I remember making the comment several times how excited I was that with our next child we'd be able to experience it. I'll birth in a hospital I've never stepped foot in.

My greatest joy with my babies is breastfeeding. Those first moments after birth, cuddling skin to skin, the first moment of connection, taking all the time I want to study their sweet faces and breathe in the smell of new life that never gets old. I'll be thankful to have even a few moments with Baby Grace after her birth before she's whisked to a hospital a mile and a half away for tests and prepping for open-heart surgery.

Honestly, there are days I hate our new normal. I struggle with jealousy and envy of others. I wonder why it's so easy for some families to have such healthy babies and kids. I envy that their child will not be defined by a major health obstacle the rest of their life.

We used to entertain the thought of a homebirth. I can't even imagine that now. Now, I just look forward to bringing her home at all.

Some days I struggle to accept it all and other days I have a deep peace and contentment.

I've made the comment to Matt several times that I miss the Cleaver life, the rainbows and the unicorns.

I've read more on suffering than I have before and I read now with new understanding and insight. The hard, brutal fact of the Christian life is that suffering is part of it, and through it we draw closer to Christ and his suffering. I'd need pages to list every verse that talks about this.

Suffering produces compassion. Empathy. A softened heart. Deeper grace. Humility.

If we let it.

Or it can produce bitterness, anger, envy, jealousy, a heart turned from the Lord.

At one point in Jesus' life many of the people following him turned away from him because of his difficult statements of truth and Jesus asks the disciples if they're going to leave him too and Peter says, Lord, to whom shall we go? You have the words of eternal life (John 6:66-68).

I feel that. Each of us turn to something when it's hard. I want to turn to Jesus. I don't want to miss one moment of becoming like him in this journey.

I want to choose joy and thankfulness. Even when it means choosing it over and over and over.

February 18, 2013

A Double Heart

Nothing causes you to consider how the heart is the source for all life-flow until you have a broken one. Or worse, until your child has a broken one.

I'm doing Beth Moore's James study with my Bible study group and I came across the most eerily ironic statement she made. She's talking about how we are to be single-minded in our devotion towards God, not double-minded or having deceptive hearts. She points out that in the original Hebrew language the Old Testament was written in, this means not having a "double heart" (p. 50).

She writes, You might picture it like this: the two chambers of our hearts trying to split off from one another and beat like competing drums facing different directions. It leaves the whole system out of sync and inauthentic (p. 50).

Well that's interesting, as the daughter of my womb has a heart that is beating at two wildly different rhythms and it's threatening her life.

Suddenly it's not just a pleasant word picture anymore. It's not just a gentle admonition that we tuck in our back pockets for a rainy day.

Because it's life-threatening.

To be double-hearted in our devotion to Christ threatens the very life of Christ in us. We can quench the work of the Holy Spirit in us, ultimately to the point of spiritual death and uselessness.

She writes further, It means we quit tossing this way and that, backstroking toward God one minute and dog-paddling for the world the next (p. 51).

We cannot have our cake and eat it too. We cannot pretend to have devotion for Christ and love for the things of the world too.

If there's one thing (amongst many) that have become plain to Matt and I, it's this - we are vapors and our lives are vapors and before we know it, we'll be in eternity. One short month ago our lives were not that insufferable. In light of true suffering, we had small problems. And in the span of a single hour, everything we knew was flipped upside down, and everything to come has been flipped upside down. Our lives from here on out will always be anchored by our daughter's broken heart.

I want my life to count for eternity. I don't want to remain who I am. I want Christ to change me, to transform the very structure of my heart. I don't want my heart to beat at two competing rhythms, all the while making merry, not knowing that I'm harming my own life.

I've had a lot of internal wrestling lately and these are some questions I've come face to face with - Is my God the same God in the secret as I profess him to be in the public? Do I really believe he's always good, always kind, always near, always loving? Is human experience the standard for truth, or is God and his Word? Am I willing to give all of me to God, the long-held hurts, the unspoken fears, the unknown, my comforts, my control?

Last night and the night before I laid in bed and whispered to the Lord in my heart - I want to want you like that. I want to want to love you like that. I want to want to give you all of me. Change my heart, Lord. Change my heart. 

Why do you spend money for what is not bread,
And your wages for what does not satisfy?
Listen carefully to Me, and eat what is good,
And delight yourself in abundance. ~ Isaiah 55:2

I don't want to spend myself on things that don't satisfy anymore. I want to eat of what is truly good, life in Christ, because therein lies delightful abundance.

February 14, 2013

The Appointment with the Pediatric Cardiologist

(Written yesterday.)

We finally had our appointment with the pediatric cardiologist today. He may be the nicest man we have ever met in our entire lives. He looks like Albert Einstein (and I think just as smart) and is as kind as anyone could possibly be. From the moment he walked into the room and started talking with us, we felt right at ease.

We spent almost 2 1/2 hours at our appointment, about an hour of it having an echocardiogram done. This is an ultrasound that focuses on the heart - its structure, function, etc. 

After the echo he spent a long time explaining what he saw, what it means, what we can hope to expect; he went over in thorough detail the answers to our questions and everything else in between.

We are very encouraged, more so than we've been this whole time, particularly after doctors visits.

He said he's very confident it's not hypoplastic left heart. He said that while her heart condition is serious, it's less serious than hypoplastic left heart would be. 

He said that she has a single ventricle heart defect. She will still need open heart surgery within the first week of her life, a major surgery called the Norwood Procedure. She will also have a pacemaker installed which she'll always have. She will then have another surgery at 6 months of age called the Glenn Procedure. This is less major and has less of a recovery time. The third and final surgery happens between 3 and 5 years old, called the Fontan Procedure

He talked us through in depth of what a life with this condition looks like. He said that while she'll never have the full physical capabilities of other kids her age, she'll still be able to have a full life. At some point in her life she will need a heart transplant because single ventricle hearts have a limited life span, but that might not come until her 30s or 40s. 

So lots of information but we still feel so much more encouraged.

The most concerning thing that he emphasized is her low heart rate. He said that because of that there's a chance she may not make it through pregnancy. That's terrifying and probably our biggest prayer request right now. (I'll write a more concise list at the end.)

Her heart rate fluctuated between 65 and 75 today, which is still an improvement from the solid 60 it's been at the last appointments. He also said that the fluid is so minimal around her heart that it's not concerning to him at all. (Thank you, Lord, for more answered prayers.)

So an updated prayer list:

- Complete healing.

- Her heart rate to increase and stay at a high rate.

- For the Lord to sustain her life through the end of pregnancy, birth, and after.

- For skill and wisdom for the surgeons and these upcoming surgeries, particularly the first one.

One of the things I shared with some girls this week is a verse I pray for her from Psalm 21:4. King David writes, He asked life of you; you gave it to him, length of days forever and ever.

We ask for life for Baby Grace. Thank you for asking with us.

February 11, 2013

Recap of our 6th Anniversary and a Look Back in Time

Matt and I celebrated our 6th anniversary on Sunday. It's unreal that 6 years have gone by so quickly. With everything going on, I honestly hadn't put that much thought into it. But on Saturday night Matt sent me a text (from the next room) telling me to check my email.

I opened it to find, Can you say Garithes Yiouvetsi? I can't either, but it sounds good. 

It was followed with a link to our favorite restaurant's February menu. And that was followed with a link to a Salsa dancing class at a dance collective here in town. It was such a fun surprise!

But first, for my record, a walk through our last anniversaries:

Year 1 we flew into Oregon and drove all along the coast, spending time in the Redwood Forest and exploring the ridiculous beauty in that part of the country.

Year 2 we flew to Seattle. (Flew over in the morning, flew back that night.) (You have to remember I worked for the airlines for a long time and we had flight benefits.) (We're not high rollers.)

The original Starbucks.

 Seattle's famous market in the background.

Eating authentic clam chowder. So delicious.

Year 3 we had a 10 day old and if I recall correctly (which I do) we had to take him to his 10 day check-up. We were sleep-deprived and hanging on to sanity by a thread. Matt got me flowers and a card and we called it good.

Year 4 we left Micah with friends and went to the Silk Road (where we went this year). I was also pregnant with Asher. I don't think I have a picture of us that year but I do have a picture of Micah that my friend snapped while she was watching him for us that night.

Ummm, I could die.

Year 5 we had a quick dinner and then went to see the Harlem Globe Trotters. We only got to stay about 30 minutes though because Asher wouldn't take a bottle for the first 8 months of his life (he would only nurse), so my parents called us to say that they had tried everything but he wasn't having it. It was still fun though, I'd like to see them perform again.

(I'm sorry, I've searched and I can't find those pictures, though I know we took some. C'est la vie.)

So this year we again went to the Silk Road. Matt's mom is so thoughtful and called ahead and had a gift card waiting for us! So sweet!

But first we had to stop in to see our very, very good friends' new baby boy, Hayz.

Oh my gosh, so stinking cute. I love him.

Then we were off to dinner. The Silk Road is a tapas-style restaurant, which means that you order several different things and they come in smaller portions so that you can try more. The menu features dishes from all over the world, which is totally right up our alley.

 February's menu. 
If you look closely, you can see the different countries to the right.

 I ordered a new drink, Agave Watermelon Cream Soda. Oh my gosh, to die for.

 The first dish was from France, Seasonal Mushroom Saute (one of my favorites that night).

And then the Crab Dip from the Northeastern USA. Honestly, I didn't love it. It wasn't bad and I loved the pita bread and gluten-free cracker bread that came with it, but I just kind of liked the dip itself (though I still managed to help Matt polish it off). 

After that we had the lamb gyro. I forgot to take a before picture. Suffice it to say it was amazing.

We usually order a couple more but we were feeling pretty full and we wanted to save room for dessert so we ordered one last dish, the Pad Thai with tofu. 

Yum, yum, yum. The flavors were amazing. Another of my favorites that night.

Once the waiter found out we were celebrating our anniversary he said that dessert was on the house. And I'm so glad he picked it for us because it was so different than what we'd normally order, but we loved it!

I can't find it on the menu so I don't know the official name or where it's from but I remember the ice cream was made in-house, Blueberry Lavender, and the bottom part was some sort of custardy thing with amazing things on top. 

It was served with Turkish coffee. Oh the hair on my chest. I drink my coffee black and prefer very dark roasts but even I couldn't take more than a couple sips! The flavor was delicious but just very (very, very, very, very, very) strong. Matt loved it, he finished mine for me. 

 Check out those tiny cups and coffee "pot!" So neat!

After this we went to our Salsa dancing class. Matt and I love Salsa dancing. It was actually the spark that got us to see each other again when we first met. Story here

We ended up being the only couple so it was like a private lesson! We learned some new moves, got to watch some pros put us to shame, and totally had a blast. 

Matt was feeling the Rhythm Divine.

 Baby Grace celebrating with us! (Almost 20 weeks here.)

 A great night with a great man. 

If there's one thought that kept coming to mind that day, it was this:

Ladies, choose your husband well. We would never have known when we got married 6 years ago in Colorado the journey our lives would take and the hardships that would come, like our present season. But it's made all the more bearable when you have a man committed to loving Jesus, loving you, loving his kids, and doing the right thing because it's the right thing. In short, integrity

Choose well. Choose for forever. 

February 08, 2013

Ultrasound Update and an Official Introduction to Baby Girl

I know many of you are waiting to hear how the ultrasound went today.

I wish I had better news but the short of it is, not very good.

I couldn't possibly recall all the medical terms and descriptions used, but in a nutshell it appears that our baby girl has hypoplastic left heart and an AV canal defect. The specialist said on a scale, this is very major and very serious.

We will be delivering in Seattle. And she will need immediate heart surgery. There's a lot of unknown still, as this is outside the realm of the perinatologist. We're waiting for a call back from the pediatric cardiologist to see if he can get us in today (which we're praying for), and if not, then the soonest he can.

Some updates and positive news. He believes that it is not a chromosomal abnormality. He can't rule it out for certain without an amniocentesis but he's fairly confident it's not. There is only a very little fluid around the heart and the fluid in the neck is not any worse and in his words, "appears to be resolving." That was a specific prayer request so thank you, Jesus, for that.

There is no fluid anywhere else, only the very little bit around the heart. The brain looks great and exactly how it should, as does everything else.

Here's where things get too medical-y and I can't possibly remember exactly how he explained this. I mentioned in my last post that the heart rate has been around the 115-120s, up from 60. Well, he explained that two parts of the heart are beating at different rates, one almost twice the rate of the other. One part of the heart is beating at 60 and the other at about 115, simultaneously. He explained that this is "nature's" way of kicking in as a lifesaver when one part of the heart fails. Again, I could totally be explaining this wrong; this is the gist of what I understood.

So when we've measured the heart the last few weeks, it was only partially accurate.

(Not sure if any of that makes sense.)

Also, because of the hypoplastic left heart, the heart is having to work very hard to pump blood to the rest of her body, which is causing her heart to enlarge. This is part of what makes this very serious.

So here's an updated prayer request list:

- Complete healing.

- That her heart would remain stable and able to be corrected with surgery.

- That her heart would not become any more enlarged.

- That the fluid around her heart would completely go away.

- That the Lord would sustain her life inside my belly and outside after birth.

Thank you. Thank you for praying. Thank you for caring. Thank you for holding us up on days like today when we feel very weak and very, very disheartened.

To leave on a happier note, we wanted to share her name with you. We chose this name months ago but then we decided we were having a boy and moved on to boy's names. We're thankful we get to use it after all.

So, without further ado, we proudly introduce our baby girl...

Grace Haven

(The quality isn't very good in these pictures because they're pictures of pictures.)

February 07, 2013

Results of Blood Test

Here's the moral of this story. Don't ever play poker or the lottery or any other game with me that involves taking a gander.

Because here's my track record.

I thought Micah was a girl and he's a boy.

I thought Asher was a girl and he's a boy.

I thought this baby was a boy and she's a girl.

Or maybe the moral is if I make an "educated" guess, go with the opposite.

This morning the specialist called with the results of the blood test that I took a couple of weeks ago. The purpose of this test was to confirm or rule out the three most common chromosomal abnormalities: Trisomy 13, Trisomy 18, or Down's Syndrome.

Wait for it...

He said the results showed normal! He said that even though that doesn't rule out a chromosomal abnormality possibility, only those three, it's still good news. The ultrasound tomorrow will fill in some major gaps of what we can semi-expect in the future.

We continue to trust the Lord and his character but also still ask you to continue to pray. We're very, very anxious about tomorrow. Honestly, we're terrified of getting bad news. But I don't even want to entertain that as long as there's a heartbeat and as long as there's hope.

So thank you for celebrating with us and Baby Girl and please keep praying!

(By the way, her name will be forthcoming...)

February 06, 2013

Doctor Visit and Update

(Written yesterday.)

I'm finding that it's easiest to keep everyone updated through here.

Encouraging news first.

The last 4 times in the past 3 weeks that I've gone in to monitor Baby's heart rate, it has been 115, 116, 118, and just yesterday, 121. As a reminder, this is up from 60 BPM. We're very encouraged by this.

(As a side note, I've been 150% convinced we're having a girl, but about two weeks ago I had a complete change of mind and am now 150% convinced we're having a boy. We'll know for sure by Friday when we get the results of the blood test back. I couldn't be happier either way.)

So I had an appointment with my regular doctor today. It's been the first time I've been able to talk with him since the ultrasound with the specialist when we learned that things are much more serious than we thought.

I had lots of questions for him.

What have you seen of this?

What's a cystic hygroma?

What kinds of chromosomal abnormalities are possible?

What does that mean?

What are the different possible heart abnormalities?

I asked him every question I could think of. And he was as thorough as he could possibly be. He answered every question fully and to the best of his knowledge, making sure to clarify when some questions were out of his field of expertise. Some questions had answers I didn't want to hear.

Again, it's the unknown that compounds the anxiety.

Before I left I asked him what would be a best-case scenario this Friday (when we have another ultrasound with the specialist). (Besides a complete miracle.)

He said...

1) For it not to be a chromosomal abnormality.

2) For the heart issue to be something that can be corrected with surgery.

3) For the hygroma not to be any worse. (I think......he was losing me on the hygroma. For some reason I couldn't get my brain up to speed with his explanations about it.)

So there you have it. Everything is continued speculation and guess-work until Friday.

A bright spot came today when I opened the door to find these flowers being delivered. I was shocked. I've never had flowers delivered, much less this many. Thanks, dad.

Thank you again for praying for us, for the cards, the messages, the texts, the compassion, the listening ears, and a thousand other significant things. We appreciate each of you more than we can say.

February 01, 2013

Happy 3rd Birthday, Micah Justice!

Today my oldest child is 3. I can hardly wrap my brain around that. All day yesterday I was marking different times in my mind.

At this time 3 years ago we were eating at Good Food Store and I was having regular contractions and I had to stop and hold the chair on our way out.

At this time I was refusing an epidural and we were all miserable.

At this time I thought I was going to die.

And then, at 1:19 on the morning of February 1st, you were born.

The night before you were born.

(And has become my tradition, here are the links to his birth story.)

Birth Story Part 1

Part 2

Exhausted and happy.

World's best daddy.

Micah, you blow my mind every single day. As I thought about what to say to you about who you are, I drew a complete blank. How do I wrap up 1,095 days of an unbelievable little life into mere words? To say you are smart, funny, tenderhearted, loyal, protective, compassionate - these barely scratch the surface.

So just know we think you're the best thing since.....the creation of donuts.

And for memory's sake, a written record of some of the funniest things you say...

Scoose me, mama, scoose me. (Excuse me.)

Get some chock-lick? (Chocolate.)

If you do something for Asher, this is how the "conversation" goes:

Ex. You give Asher a toy.

Micah: Say thank you Ash-ur.


Micah: Your WEL-come.

Mommy, check your oatmeal? (Email.)

Get horchasta? (Horchata.)

If you wike to talk to tomadoes, if a swash can make you smile, if you like to wazz with podadoes...*incoherent singing along*.....down the pwoduce aisle....*high-pitched voice*....veggie tayels, veggie tayels....veg-gie tayels! Bwoccowi, cerewry, gotta be...veggie tayels! 

I wish I could bottle you up with your sweet voice and keep it by my bedside until the end of my days.

And a look back through the annals of time.

1st Birthday

2nd Birthday

Halloween 2010 (Oscar Meyer wiener)

Halloween 2011 (zookeeper)

Halloween 2012 (airline pilot)

Micah's love language - throwing rocks in the river.

I love the bond between these two.

Growing up way too fast!

Happy birthday to my favorite 3-year old on the planet. You are the apple of our eyes and we love you to the moon and back.