March 28, 2013

Baby Grace in 3-D at 26 Weeks

Today we had an appointment with the perinatologist. This is actually only the third time we've seen him and I was especially dreading this appointment because, for us, this is where it all started. This is where our lives got turned upside down.

I always have trepidation in my heart before appointments because I'm just so afraid of bad news. As I was driving in to the parking lot, I asked God for his peace and, quite simply, for good news.

And it was nothing but good news!

Besides her obvious heart abnormalities, everything else looks very good, according to the doctor. Her heart rate was 67 today. That's stable, which is what we want. Her organs looked great, as did her brain and spinal cord. And he said that there is no sign of heart failure!

You have to remember - this is where it started. This is where he told us at 16 weeks that Grace was already exhibiting signs of heart failure and that "her chances for life weren't very good." We can only attribute this to God's healing hand. Thank you, Lord.

She was very, very active. This tech made the same kind of comments as our other ultrasound tech - she's busy and not very cooperative. :) But the doctor said that's exactly what they want to see because babies in distress don't move very much. I love her kicks and punches and rolls and I especially love to see it on the big screen.

And now for some updated pictures.

Introducing Baby Grace at 26 weeks in 3-D!

(Did you bring your glasses?)

Side view of her arm, leg, and baby bum.

Her perfect hand and fingers.

Thanking Jesus today for the bright spots in this journey and for the answers to prayer along the way.

March 26, 2013

A Mostly Encouraging Week and One Setback

I've had several encouraging things transpire the last week and one giant discouraging thing. I'll start with the encouraging.

I received a message from a guy yesterday saying that he'd found our story from Baby Poppy's blog (turns out he thought WE were Poppy's parents, but I'm so glad for the confusion), and said that they also have a little boy with HLHS. They live in our state and see our same doctor and spent several months in Seattle this past year for their little boy. I asked how he's doing now and what his recovery was like and he sent back the most amazing story. (I'll have to get his permission to tell it.)

He and Matt also ended up messaging back and forth and we've exchanged numbers and will hopefully all be meeting next month. It was incredibly encouraging to talk to someone who understood and whose child is further down the line than we are, people we can ask questions of and who have true understanding.

I've also been in touch with another girl and her husband whose son also has a severe heart defect and they'll be in Seattle for delivery just about a week before us. I love that God loves community and relationship and often brings his comfort through others.

We've also had our minds blown at people's response to the fundraiser for Baby Grace. Honestly, this sort of thing never, ever crossed our minds. We were just so thankful that Matt had PTO and that we had some money in savings and we trusted God for the rest, never imagining what "the rest" would be. When Sarah first contacted me about this, I envisioned a small chili dinner, circa 1917. So to say this is way above and beyond anything we could've imagined is like comparing bean sprouts to chocolate cake. No comparison. Right?

"Thank you" has been frustrating me a little lately because it's falling desperately short of how deeply we mean it and how deeply you guys have touched our lives. So....thank you. (Darn you, English Language.)

The one, major discouraging thing came from my last appointment with Dr. Hardy, our pediatric cardiologist. (I have literally come to dread doctor's appointments.) For weeks, from the day we found out about this, every appointment things got worse and worse and worse. And we've finally had several appointments where her condition has been identified, a plan of action has been put in place, and she and her heart rate have been stable.

Apart from a complete miracle healing (which we're not ruling out), her condition is fixed. It's a structural abnormality, so it's nothing that will correct itself apart from life-saving surgery. So for us, good news is that her condition is stable and not any worse.

At my last appointment (the only one Matt hasn't been able to make it to), Dr. Hardy said that it appears from that day's fetal echo that her aortic and pulmonic valves are thickened. He explained in great detail what that means. Well, I've struggled my way through all these medical terms and conditions from Day 1 and only recently have things begun to make more sense. So, in my state of deep discouragement and total lack of medical understanding, I only retained about 5% of what he told me. (And I'm terrified to Google it because the Internet is a scary medical place.)

My first question was, What does this mean for her survival in pregnancy? He said she "should be fine." But it only adds to my already deep weight of anxiety that I wear around like a dang cloak. He emphasized that it's only a "wrinkle" and they'll be able to better tell in the next fetal echos, and he'll be glad to have another several pair of eyes to look at our appointments in Seattle next week.

I hate wrinkles.

So please add that to your prayers for Baby Grace. That her aortic and pulmonic valves would NOT be thickened and that God would continue to sustain and give her life.

Thank you.

March 20, 2013

In Which We're Not Going on Vacation to Florida (But Look, Pictures!)

Matt finished a term on Sunday so we feel like we've been given a bit of a reprieve. (For three weeks at least.) I feel like we should be going to Disneyland! The Bahamas! Phoenix! Hawaii! Not Montana!

But I'll take the break from school and be happy. Even if it kills me. (As we endured a mini snowstorm two days ago.)

I needed a little happiness after remembering our snowstorm. This picture fills that void.

If you haven't checked out Baby Poppy's website, please do. She is on ECMO (life support), but it's to give her heart a rest from the 13-hour surgery on Monday. At first they only updated that she was on ECMO with no explanation and when I read it I felt like somebody punched me in the stomach.

This isn't just someone else's story. This is our story too. It brought all my worst fears to the surface. I've been doing a little better lately at turning to Jesus first though, before I let myself stew in all my fears and anxieties for a crockpot hour. Know what I mean?

Here are some pictures from our recent days.

Picnic on the kitchen floor was our only option for A) Feeding my children dinner, and B) Keeping the house clean for a showing.

When Asher woke up from his nap yesterday I had to change his diaper but they were in the bedroom that the boys share where Micah was taking a nap. I pulled some undies from the clean clothes pile and spent the next 30 minutes dying every time I looked at him.

Micah has adopted a pre-bedtime routine of reading a Berenstein Bears book while sitting on the pot. (It's very patience-producing.) Hence, Matt multi-tasking (cutting his nails) while making sure Micah stays focused on the task at hand.

I had some friends over today and had such a great time. I love these girls. Asher enjoyed showing Libby Rose the Doctor's Office Toy ropes.

Caylee and Libby chatting it up. I think I heard mention of hair bows and manicures but it was kind of hard to pick out amidst the gurgling and grunts.

 The girls! Molli, Jami, and Jordan.

Jami and I have a picture just like this with our firstborns when they were about the same age!


Time passes way too quickly.

I'll be starting a page for Grace soon here so it makes it easier to read her story and updates. It just entails me bringing out my inner Technical Side which, ironically, doesn't exist. Hugs?

March 14, 2013

Update, a Plan of Action, and Some Amazing Girls

We've had quite a few appointments since the last time I've updated so I wanted to make sure I update everyone.

First, some answers to prayer that I want to make sure to include because I know they're the result of you guys praying and to give God the glory. One of the original prayer requests we had was for the fluid around her heart and neck to go away (signs of heart failure). The fluid in her neck has been gone for awhile and yesterday Dr. Hardy, our pediatric cardiologist, said she has NO SIGNS of heart failure! Thank you, Lord.

She is growing at the rate she should be, right on track with a 24-week old baby in the belly. I feel her moving lots and the ultrasound tech who does our regular echo-cardiograms said we're going to have our hands full with her because she definitely has a mind of her own. Apparently as soon as the tech gets a good look, Grace flips on her. Every time. That makes me smile to think about.

Yesterday we had our latest appointment with Dr. Hardy and he said that her heart rate is consistently between 65 and 75 BPM. One thing that I did not fully understand until about two weeks ago is that she has two separate heart conditions - heart block (which is causing the low heart rate) and a single ventricle heart defect. I had thought the heart block was caused by the heart defect but it's actually not. I was very frustrated when I first heard that.

So right now the most concerning thing is her low heart rate. Their concern is that she will get to a size where her low heart rate can no longer sustain her, but because she needs open heart surgery right after birth, they want her to be full-term; they don't want to add prematurity to a major surgery, obviously. So that's probably our biggest concern and prayer right now is that God would sustain her heart rate to full-term.

The fix for heart block is a pacemaker which Dr. Hardy says they'll most likely add when they're doing her first surgery. There is no fix for a single ventricle heart defect (apart from a heart transplant, but that's actually riskier and not their first choice if she doesn't need it right away), so basically they compensate for it with the Norwood procedure and the subsequent surgeries. Little by little this is making more and more sense to me.

As for our Seattle plans, we have appointments the beginning of April to have an echo-cardiogram with a pediatric cardiologist from Seattle Children's, an ultrasound with a perinatologist, and consultations with both where they'll explain in great detail what they see, what will happen, what we can hope to expect, delivery, transfer, what our time, the surgeries, and everything else will look like, etc. Obviously, we're very excited for that, as it will add more pieces to this gigantic unseen puzzle.

If all goes well (and we pray it does), we will go to Seattle when I'm 36 weeks (around the first week of June) and hang out there until Delivery Time (I feel that's momentous enough to be capitalized). Sometime around 38-39 weeks, I'll be induced if I haven't gone into labor naturally. Whether I deliver naturally or by C-section will be determined by her heart rate and how it handles labor.

We have some general information about what comes after that but I think I'll wait until after these appointments in Seattle to say so that we know more concretely.

I'll end by sharing something that puts me in awe of God's goodness and provision. First, he has completely blown my mind with the friends he has brought into my life the last year to year and a half. Especially because it's something I prayed for. Genuine, authentic friendships that I could share life and motherhood with.

As things have unfolded with Baby Grace, from the very beginning, these friends have shown up in real life to walk this with me and pray with us every step of the way. First, Reese put together a Pinterest-worthy "Prayer Shower" for Baby Grace.

Here's beautiful Reese with one of her three handsome sons.

She made this cake! 

That's ice cream in the middle. Go ahead, take a moment. 

 She also made bookmarks with a day of the week on it to remember to pray and on the other side are the prayer requests we had written. So creative!

I wish I had more pictures of how beautiful she made it and all the amazing girls that came. It was so incredibly meaningful. Everyone had written cards and prayers for us, which I've kept by my bedside. They shared some really encouraging verses and words and then we spent a lot of time in prayer interceding for Grace and her life. It was amazing.

And then yesterday my friend Sarah called and said she had been talking about us with a couple other girls and they want to put together a big fundraiser for the time we'll be away in Seattle! Seriously, you have no idea how completely floored I was (Matt too). One of the girls doesn't even know me!

Here's Sarah. I love her. 
(But I don't love how tiny she stays when she's pregnant.) (Well, I love it for her.)

Beautiful Camille. So incredibly sweet and genuine. 
(Pregnancy/staying-tiny thing goes for her too.)

And these are just the "big" things. They've sent cards, asked me repeatedly how I'm doing, researched books for the boys that would help them transition, looked for shirts for the boys to celebrate their Seattle time (sweet Molli), cried with me, prayed with me, and a thousand other meaningful things.

These are just a few of the others, The Preggos. (Half our group was/is pregnant!) 

These girls have no idea how much they've totally blown our minds. They've shown me over and over what authentic friendships look like. And I am more humbled and thankful than I can possibly put into words. It's hard to be on the receiving end (it's way easier to give) but I'm thankful they make it a little easier.

Thank you to all of you. Those I know and those I only know through this blog that I wish I could know! Thank you for praying, for caring, for being so thoughtful, for lifting us up. For a thousand other things that don't go unnoticed.

To God be the glory.

March 11, 2013

Pregnancy Questionnaire - Week 23

Oh my gosh, taking a pregnant self-portrait is ridiculous. My arm simply does not bend to the types of angles needed for a full self-portrait shot. I don't have time to wait for Matt to take it because I have to do it during naptime. So, this is the best I could do. 

23 weeks and 4 days

How far along: 23 weeks, 4 days

Total Weight Gain/Loss: I'm considering posting this, if only to make someone else feel better. At my last appointment, I'd gained 28 pounds. (I hope you feel better about yourself.)

Maternity clothes: It's all I wear. Except for my stretchy pajama pants (which are not limited to bedtime unfortunately).

Stretch marks: I have a few from my other two pregnancies but no new ones so far.

Sleep: I get up several times a night to use the bathroom. I was having some insomnia but the last couple of nights I've actually slept pretty good.

Best moment last week: Today actually - it felt like she rolled or somersaulted in my belly; I loved it!

Movement: Lots everyday. I never get tired of it. And with this one, I'm not taking it for granted, I thank the Lord constantly for it.

Food cravings: This has mostly leveled out, although if it's anything lately it's probably protein.

Gender: Baby GIRL!!! Grace Haven.

Labor signs: None.

Belly button - in or out? Still out.

What I miss: Not having my sciatica attack me at any given moment of the day.

What I am looking forward to: Not sure. Definitely meeting her but I also love having her in my belly.

Milestones: No nausea at all and feeling her constant movements.

Happy Monday!

March 08, 2013

The Struggle With This Journey

I've had a lot to say but I haven't wanted to write. Well, I've wanted to write (free therapy) but I haven't been sure how to write.

Honestly, I feel mad today. I went to bed mad last night. I spent a lot of time last night reading through blogs of families who have gone and are going through this same process - the unexpected diagnosis of a congenital heart defect, the uncertainties, the fears, the surgeries, the hospitals, the sweet baby faces, the praises, the losses, the grief. I hate it. I hate what these sweet babies have to go through.

This morning a friend sent me a blog of another family from Montana who also have a daughter with a heart defect (Hypoplastic Left Heart Syndrome) and today is being born via C-section. (Please be praying for her and her upcoming surgery.) I related with her 1000% on everything she's written. Seeing God's hand and provision and care and kindness and yet the deep sadness and fear and worry. Somehow knowing that this is not by chance that it's your family experiencing this and yet not wanting any part of it to be true for your little girl, or anybody else's little girl for that matter.

I long for redemption. I long for the day when Jesus makes all things new.

But I am so thankful, so deeply, soul-deep thankful for the people that God puts in our path in this lifetime. We could not do this alone. I think I've erred on the side of trying not to talk about this too much with others because I don't want to make other people sad or always be making things about me and what I'm going through, but I've found that I'm starting to feel like a pressure cooker.

The other night I went to a baby shower and a friend asked me how I was and how things are going and there was something so open about her that I felt like I could be honest and not put my Good Face on. I'm not sure she knows just how much she encouraged me or how much I needed that. I came home and told Matt that my soul felt full.

We've had several appointments with doctors the last couple of weeks and I'll update on those soon but today I felt the need to write feelings, not facts.

Here's an updated belly picture (not the best). Today I'm 23 weeks and 1 day but I took this picture at 22 weeks and 5 days so it's close. Baby Grace is growing great, thank the Lord.

March 04, 2013

How Our Daughter's Story is Already Changing Our Lives

I have to be honest, after my last post I felt conviction - I needed to remember some important things I have to be grateful for.

One of the things that our pediatric cardiologist told us is that Baby Grace's heart condition is incompatible with life apart from surgery. And this surgery is only 32 years old. Which means that if many of the people I love so much had been born with this same condition, I wouldn't know them today.

So even though things are going to look differently than I thought, I'm thankful for many things. Number one being that she was born in this time and that God puts it into the heart of people to create and invent technology that saves the lives of so many.

Even though I won't get to deliver where or how I want to, I'm thankful to live in a country that provides multiple options for delivery and surgery. Many, many, many people in this world don't even have access to clean water, much less medical facilities that save lives.

And while I may not get to deliver in our hospital's new birthing suites, I get to deliver in a clean, modern hospital when many other women today will give birth in unsanitary conditions and places because there's nothing else available to them.

Perspective, perspective, perspective.

Matt and I believe very strongly in the Bible's instruction for giving to the poor and taking responsibility for meeting their needs. (I don't say this to toot our horn - yuck.) I say it to highlight a way God has already used our situation to meet the needs of others.

We've wanted to give more to meet the needs of the poor and so I was doing some research online to see where we could give. We already sponsor several kids through both Compassion and World Vision (both exemplary organizations with high financial integrity and accountability) so I was looking on Compassion's website to see if there was another way we could give to them and I came across this. Please take a moment to read through the following description.

Rescue Babies & Mothers
    Elim Pentecoste Babati Child Survival Program (Tanzania)
    West of Arusha, Tanzania
    In Tanzania, west of Arusha, poverty is taking its toll on newborn babies. As a result, there is a high infant mortality rate in the community of Babati.
    Mothers in this community often have no access to medical facilities. As a result, these young mothers face complications during delivery.
    In turn, newborn babies tend to suffer from preventable diseases as well as malnutrition at the beginning of their fragile lives.
    This is where Compassion’s Child Survival Program (CSP) steps in.
    Located west of Arusha, the Elim Pentecoste Babati Child Survival Program is coming alongside mothers to help them deliver and raise a healthy baby.
    Mothers in this CSP are taught:
    • how to stay healthy during pregnancy
    • health education
    • safe food preparation
    • how to encourage healthy development in their baby
    Mothers who attend this CSP receive nutritious food and vitamins, which are essential to the growth and development of their baby.
    They also learn about Jesus and receive a Bible.
    When you support this center you are not just sustaining the life of an infant, you are providing a chance for mothers and babies to thrive.
    Rescue babies and mothers? Yes, please! So I signed us up to give monthly to the Child Survival Programs in both Tanzania and Uganda.

    Our daughter, by God's grace (and we pray unceasingly for it), will live because we have access to high-tech healthcare and medical intervention. Many of these children, who would otherwise be born healthy and whole, will not live simply because they don't have access to basic healthcare. You better believe I signed us up for that!

    How about you? Would you consider signing up to sponsor a child or one of these Child Survival Programs? It might mean less coffees that month, or eating in instead of eating out, or buying some clothes second-hand (which most of ours are), but at the end of your life when you stand in eternity before a holy God, don't you want most of what you spent your time and money and life on to echo in eternity? 

    The joy that giving brings is indescribable. See for yourself.

    And will you let me know if you do, I'd love to hear about it and how God uses it in your life and theirs!