April 29, 2013

Goodbye to Our Gracie-girl

Many of you have already heard that on Friday, April 26th at 30 weeks and 1 day our Gracie-girl was born to us. She was born into our arms but her sweet spirit had already gone to be with the Lord. She was 15 inches long and 5 pounds and already had her Daddy's dark hair.

She was beautiful. Perfect. And I have never loved so intensely in my entire life.

Every day I've wanted to write, to remember her, but I'm learning that Grief leaves no part of your being unscathed. Our first two days home I found that simply existing required all of my energy. And today, three days since we said hello and goodbye, I'm finding that I can't let another day go by without writing about her. I have to remember her.

I used to think that when a person was grieving, they cried all day long. And perhaps for some, that's true. For me, the grief hits in waves. And then it's wave upon wave and I wonder how I will survive the next 30 seconds, much less the rest of my life without her.

Today Matt and I had to meet with the funeral director to discuss her services. Matt parked in front of the building and I suddenly began weeping, gulping breath after gulping breath.

I can't do this! I want her back! She should be here with us, not in there! I want her back!

I want her back. I want her back!

That's the constant refrain through my mind. All day long.

I want my baby girl back more than I want my next breath.

I continually remind myself that other people have survived this but when wave after crushing wave is crashing over me, I find it hard to believe. How do you plan your child's funeral services? How do you actually sit across from someone and have a reasonable conversation about your child's headstone and casket color? How do people do that?

And yet today we did it. We actually did those ridiculous things and yet here I sit. Not dead.

By God's lavish and sustaining grace.

Struck down? Yes. Destroyed? No. 

We will not forget our Gracie-girl. She impacted more people in her 30 weeks than most people do in their 80 years. And I will tell her story.

April 23, 2013

Striving for Normalcy

We've had a very rough last few days. Matt got some sort of food poisoning (we think) which wiped him out for a solid day. On top of this I've struggled the hardest with our situation that I have this entire time. We also had a real scare in which we thought we had lost Baby Grace.

I barely made it out of bed this morning and was thankful for this verse a friend sent me.

This is my comfort in my affliction,
that your promise gives me life.
Psalm 119:50

In the midst of all this, I'm thankful for some normalcy. Matt and I decided a long time ago that if we're going to make it through in one piece we need to cling to each other and to God, and have as much normalcy as possible, especially for the boys sake.

So in the midst of an awful weekend, we strove for some normalcy.

We watched Dora.

I painted my toenails pink for Baby Grace.

(And because I know someone will ask, my tattoo says, "Send me, Lord, for I am willing," in Arabic. In college I was convinced I was going to be a missionary to the Middle East.)

Micah wanted a picture of his toes after he saw me taking one of mine. :)

We went to a dog show.

And once Matt recovered from the Black Plague I took an afternoon to myself (which included a trip to Big Dipper).

One day at a time. One day at a time.

April 18, 2013

Encouraging Doctors Appointment Today

The ups and downs of this journey are very difficult. I've learned that a heart can plummet from great heights to great depths and still survive.

But encouraging news is encouraging news and after asking everyone to pray yesterday for some very specific things, we had an encouraging report at our appointment this morning and I wanted to make sure to share with everyone.

For the last two and a half weeks, every appointment has been bad news upon bad news. Grace's condition has been steadily declining for these last almost three weeks.

(By the way, someone asked me how often we have appointments. We see the pediatric cardiologist for a fetal echo every week, as well as the perinatologist for an ultrasound every week. Every four weeks we see my regular OB, although after next week we will be seeing him every two weeks.)

Today at our appointment with the perinatologist (who tracks her overall condition which includes the fluid build-up and her progression of heart failure) he said that there has been no change from last week's appointment. He said that it is certainly not worse but rather stable.

I can't tell you how happy and relieved we were!

Things are still very serious; we won't know more about the condition of her single ventricle until our next appointment with Dr. Hardy, but at this point we will take any good news we can get and stable is very good news.

So many of you have commented and messaged me and I wish I could respond back to every single one of them, but please know that if I don't get a chance to, it doesn't mean I haven't seen it or been deeply impacted and encouraged by it. It blows our minds beyond belief that so many people have taken up Baby Grace in love and prayer.

The specific things we need prayer for are the same and those can be found here. Thank you for praying and for loving us so well.

April 17, 2013

Very Specific Prayer Requests for Baby Grace's Declining Condition

I haven't wanted to post anything because I'm not sure how you put words to such pain. But we refuse to give up hoping and our Baby Grace needs lots of prayers and I want to post as specific a prayer list as possible.

I mentioned in my last post that last Thursday at our appointment with the perinatologist the ultrasound showed that the fluid build-up (heart failure) was getting worse. We had been hoping and praying not only for it not to be worse but even for it to be better. So as you can imagine it was devastating to hear.

On Monday of this week we had another appointment with our pediatric cardiologist, Dr. Hardy. Thus far, Dr. Hardy has been Baby Gracie's biggest fan and cheerleader (besides us). He has never downplayed the seriousness of her condition but he has been persistently optimistic and hopeful. Not so this week. 

One of the major things that Baby Grace had going in her favor was that even though she only has a single ventricle, it was still doing a good job and was quite healthy. This week he said there has been a significant change and decline in its condition. Her heart rate was also the lowest it's ever been - 54 BPM. She is obviously in distress. 

She desperately needs a pacemaker but after several calls to surgeons and a cardiac electro-physiologist, Dr. Hardy called us on Monday evening to give yet more bad news - surgeons simply cannot put a pacemaker into a baby less than 34 weeks because their hearts just aren't big enough. 

I sobbed in Matt's arms after the call. 

Earlier that day, Dr. Hardy had told us as gently as he could that he thinks she isn't going to make it much longer if we don't do something. The pacemaker was our last something. She needs five more weeks in my belly to have a chance after birth. At the rate her heart failure has been going five weeks is a very, very long time. 

Here is what she needs prayer for:

- Increased and sustained higher heart rate.

- A sufficient increased heart rate to pump the fluid out of where it's been accumulating.

- No further decline of her single ventricle.

- Strong and healthy aortic and pulmonic valves. 

- To grow big and strong in preparation for surgery after birth.

- That her continued life in my belly and surgery and recovery would be so remarkable and inexplicable that the surgeons would marvel all the rest of their practice; that it would completely confound them.

I know the odds are stacked against her. I know the doctors are waiting for what they deem to be an unavoidable outcome. But today she's living and kicking and moving. And Acts 17:28 says, "For in Him (Christ) we live and move and have our being." Today God has given her life. And we won't stop persisting in prayer, asking for life and healing. 

Please ask with us?

April 12, 2013

As Grace's Condition Worsens, I am Reminded that What I Believe About God Matters

We're in the darkest watches of the night.

Grace's heart failure has worsened as of yesterday. The fluid has spread to nearly every organ and even around her brain. This is a pain that heretofore was unfathomable for me to imagine. I've never been so broken and so sorrowful.

My soul waits for the Lord
More than watchmen for the morning,
more than watchmen for the morning.
Psalm 130:6

My heart cries out nearly constantly to the Lord. While we can do nothing but wait on Grace and wait on the next few weeks, our souls wait earnestly for the Lord.

When I was introduced to Matt and Sarah Hammitt's blog from the band, Sanctus Real, who also have a child with a serious heart defect, something he said in one of his posts struck me deeply and has resonated with me since.

After experiencing yet another health crisis with their son and having to head back yet again to the hospital, he wrote that with tears streaming down their faces, he told his wife, "This is why theology matters."

This is why what I believe about God matters.

And it's never more profoundly obvious than in times of deep grief.

I fear that many Christians in our country have a devastatingly flawed understanding of who God is. I'll share a recent example. I noticed a conversation on Facebook in which someone had commented that their child had not seriously injured themselves and someone had responded, "God is good!"

Yes, God is good. But is he only good when things go well? Or the way we want them to? Or the way we think they ought to go?

Jesus himself told Peter that Satan demanded permission to sift him like wheat. But Jesus had prayed for him, that his faith would not fail.

Jesus didn't pray that Peter would not experience it, but rather that his faith would not fail. I fear we've become so oriented to prayers of avoidance that we're woefully ill-equipped and unprepared to handle suffering and testing when it comes. The account of Job is a similar story. Satan demanded permission to try Job, to prove that he would eventually curse God if he suffered enough. And yet, after losing nearly everything of value (his children, livelihood, health, friends, reputation), he said, Though he slay me, yet will I hope in him. Another translation says, Yet will I trust in him.

What we believe about God matters.

And what we believe about God is often revealed in times of suffering. If we've had a belief and understanding of God that he is our Wish-granter in the sky, our personal Genie to call upon, someone to manipulate to get our way, then the moment life comes crashing down will leave us reeling and often angry at the image of the god we had created. But it was not the image of the true God described in his Word.

I can truly say, with no pretense, that this experience, every parent's worst nightmare, has deepened our faith and trust in God. I often pray that Satan would not gain one inch of ground in our family and marriage through this. That God would receive all the glory due his Name through this.

I believe with all of my heart and mind that God is sovereign. That he sees the end from the beginning. That his love is unfailing and his kindness is inseparable from who he is. Like I heard today, He is immutably loving. Unchangeably loving.

The apostle Paul, after describing the crushing and afflictions they were experiencing, said this,

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory far beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
- 2nd Corinthians 4:16-18

I do not downplay our pain. These days I weep as easily as I used to laugh. My heart feels crushed. But truly, daily, moment by moment, his grace is sufficient. His power is at work in us, accomplishing in us what we simply could not do on our own.

And at the end of the day, I trust him. I trust the Lord Most High. Creator of everything seen and unseen. The one who has prepared an Eternity that makes the beauty of this world shrivel and pale in comparison.

For from him and to him and through him are all things. To Him be glory forever. Amen.

April 03, 2013

Very Urgent Prayer Requests for Baby Grace

This is an urgent prayer request.

As many of you know, we were in Seattle this week for appointments with doctors and surgeons there. We went with the expectation and anticipation of hearing what we've been hearing - being there at 36 weeks, a confirmed plan of action for the Norwood Procedure, hopefully a 2-3 week recovery time, and then back home.

They did their own round of fetal echos and ultrasounds and afterwards we sat down with a high-risk OB, Dr. Delaney (a wonderful woman who made awful news a little more bearable), and the director and chief of Seattle Children's pediatric cardiology, Dr. Lewin.

The short of it is that Grace has gone into heart failure and is in "severe distress." She has fluid collecting around her right lung, stomach, and in the placenta, which also places me at risk for preeclampsia. Her heart rate has also dropped from my last appointment. As you know, at my last appointment, five days prior, she had no signs of heart failure. This is a drastic change in a very short amount of time. Dr. Lewin said he's very concerned and his expectation is that she won't make it much longer.

Agh! I hate even typing that. How can you you type out the reality of your heart shattering in a thousand pieces?

He said her condition is so rare that in the last five years his team has only had two cases of it and only one baby made it. Because of that, her only chance for even possibly making it after birth is to make it to at least 37-38 weeks. But at this point, at almost 27 weeks, because she's already experiencing severe heart failure, he's not very hopeful.

Right now, they've changed their plan of action. They want us there at 34 weeks instead of 36, and because of the complexity of her surgery, we will likely be there at least 3 months.

If we can make it to full-term, he said that she will determine what is the best plan of action for her - the Norwood Procedure combined with a pacemaker implant (extremely complex surgery with a 50% survival rate as I've already mentioned), or a sort of hybrid procedure that would hopefully sustain her for a heart transplant in which, on average, the wait for babies is months.

Every direction and option is excruciating. We want our baby. We don't care what we have to do for her and we'll do anything, we just want her here with us.

She needs prayer desperately. Ultimately it's God who gives life and he isn't dictated by the odds. So please pray for the following:

- That her heart rate would increase and be enough to sustain her to full-term without any more heart failure (fluid collecting anywhere).

- That she would not need a heart transplant.

- That they would be able to perform the Norwood and the pacemaker implant and that it would go well and  be successful. So much so that the surgeons would marvel for years to come, and to God be the glory.

- For life for Baby Grace. That by God's power and grace, she would defy every odd stacked against her right now and would make it to full-term and through the subsequent surgeries and that we would have life with her.

Please, please pray with us for her.

April 01, 2013

A Seattle Easter

(Caution: lots of pictures ahead.)

We got into Seattle on Saturday. We have several appointments this week with doctors here. We also have tours of both hospitals scheduled. We decided to make a mini family vacation out of it since it'll be awhile before we get to do something like this again. Also, between Matt's school and Grace's situation, our family desperately needed some good QT together.

We spent most of Sunday at the zoo. But not without a visit to the other love of my life. A donut shop. This place came highly ranked in Internet World and it did not disappoint. I loved the atmosphere and would have loved to spend more time here.

We headed to the the zoo after that and we could not have asked for more perfect weather. 70 degrees and not a cloud in the sky. I think our faces were even a little pink by the end of the day. Do Montanans even remember what that's like?

(Some of these are phone pictures, others are my real camera pictures.)

Another "McNutt!" We're not alone!

This was the end of the day. The boys were totally pooped.

See? This is within minutes of getting in the car.

We're staying in a town about 20 minutes from downtown Seattle and we had no idea what a cool town it would be! It's right on the water and it has this really neat boardwalk/lighthouse area. Because it was Easter (I'm assuming) there were tons of people out with campfires and cookouts and volleyball games and ice cream cones. It was so neat.

While we've had fun and tried to make it a great time for the boys, we definitely haven't forgotten why we're here. In fact, as Matt and I were walking along the water tonight, I told him that I wish we could just be here for fun only, that every time I remember why we're there I'm overwhelmed with sadness. He agreed.

I even caught myself envying other families at the zoo. I was waiting to use the restroom and there was a family with two boys and a baby girl and without even thinking about it, I was jealous of them and their seemingly perfect health. I know several of you have commented that you're praying for us while we're here and we appreciate it. Being here makes it even more real. It just doesn't feel like home here but it will be for awhile and I want to accept it sooner rather than later. 

Even though we didn't spend this Easter at church with other Christ-followers, the day wasn't lost on us. Several times as we walked around the zoo and my heart was so full with love for my boys and my husband, I thanked the Lord for his life, death, and resurrection that made it possible for us to be there, full of joy and new life. 

I'm thankful that Friday wasn't the end. 

I'm thankful that Sunday came. 

Even when it seemed like Saturday would never end. 

He is risen indeed.