Obituary

Anne Marie Dutcher, infant daughter of Susie and Brandon Dutcher of Edmond, died November 21, 2009 at the Children's Medical Center in Dallas. She was born October 15, 2009 in Dallas. She is survived by her parents and four siblings, Lincoln (age 17), Lillie (14), Mary Margaret (11), and Jack Henry (7), as well as many loving grandparents, aunts, uncles, and cousins. A funeral service will be held on Monday, November 30 at 11:00 AM at Our Lord's Community Church in Oklahoma City, with interment to follow at Gracelawn Cemetery in Edmond. A viewing for family, friends, and the many others who read about and prayed for Anne Marie will be from noon to 8 PM on Sunday, November 29 at Mercer-Adams Funeral Service in Bethany. In lieu of flowers, donations may be made to Heritage Presbyterian Church in Edmond.

Funeral

Anne Marie's funeral service will be held on Monday, November 30 at 11:00 AM at Our Lord's Community Church in Oklahoma City (map), with interment to follow at Gracelawn Cemetery in Edmond.

Home

We've been in Dallas now for eight and a half weeks. Today we load our car and head back north. I arrived here in Dallas a little fearful, yet continuing to trust God's sovereign plan for our family. Mostly I was glad to be closer to delivery, closer to the time when we could finally see in person the face we had seen so many times on an ultrasound. And I leave also a little fearful, but continuing to trust God's sovereign plan and grateful to have been able to see that tiny face day after day for five weeks, more delicate and beautiful than I had imagined.

When we arrived, we were grateful to be here. Grateful for the apartment that we were able to stay in. Grateful for OCPA and the freedom they gave Brandon to telecommute. Grateful that we homeschool so that it was easy for our kids to come with us and grateful that Ginger was taking care of Lincoln and Lillie. Grateful for Dallas Children's and the doctors that would be treating Anne Marie. Grateful for so many things, yet at the same time homesick. I missed our friends and our church. I missed our neighbors and our house. I missed driving to ballet. I missed watching Lincoln and Jack Henry play football. I missed going to our familiar grocery store and Pei Wei with Brandon on Sunday nights. So all the while we were here, we still missed "home" and hoped for the day when we would load our stuff in our car and go back. Only this time we would have to put a car seat in before we headed home. Not long ago, Brandon (not normally the party-planning type) talked about the homecoming party he wanted to have for Anne Marie when we returned. Yes, we always knew how very sick she was and that the medical odds were against her, yet we planned her homecoming anyway.

So now we are getting ready to go home. Back to all things familiar and comforting. And yet, I will miss Dallas. The only "home" I have known with my girl. I will miss going up to the hospital early each morning for rounds. I will miss seeing the familiar faces of nurses and doctors, who had become friends. I will miss seeing the young man who worked at the entrance desk and the girls who worked in the cafeteria. I will miss sitting outside in the sun in the hospital courtyard with Brandon. I will miss feeding the koi with the kids. I will miss the pancake house we would go to on Sundays and the Albertsons where we bought our groceries. I'll miss Sunday mornings at Park Cities Presbyterian Church and the Wednesday night Vespers service there. I'll miss hearing Pastor Lafferty pray prayers that were so soothing that I didn't want them to end. I will miss all of these things -- things that were part of our life here with Anne Marie. Mostly I miss our girl so, so much.

In a few hours we leave to return home. And my heart longs for our eternal home more than ever. Home where God will wipe away every tear and there shall be no more death, nor sorrow, nor crying.

Anne Marie Dutcher, October 15, 2009 — November 21, 2009

Anne Marie died peacefully in her mother's arms Saturday night. Susie and I are deeply grateful for everyone who cared about her and prayed for her. "The LORD gave, and the LORD has taken away; Blessed be the name of the LORD."

'Stably Unstable'

Not sure if that's a clinical term or merely a colloquial one, but that's the phrase the doctor used this evening to describe Anne Marie. She's unstable -- heck, she's on a ventilator, a CVVH (Continuous Veno Veno Hemodialysis) machine, antibiotics, pain medicine, blood pressure medicine, and more -- but she's stable in that at the moment she's not getting any better or any worse.

Of course, stably unstable doesn't last forever. In the next several days the doctors really want to see some improvement, or else we're going to start having some conversations we really don't want to have. Already today we had to revisit the concept of "Do Not Resuscitate," which is not where we want to be heading. If you are inclined to pray for Anne Marie, please pray that her pulmonary hypertension would improve, that she could be weaned from the ventilator, and that her kidneys would function. Here are some pictures from today.

And Please Tell Me You Burned the Books, Too

We already know that the University of Oklahoma's Darwinian dictators -- professors, museum bureaucrats, grad students, etc. -- sometimes act like, well, frightened children. So I guess it's no surprise to learn that they're not above ... confiscating books!

It seems that some copies of an unacceptable book turned up on campus this week, an edition of Darwin's Origin of Species with a special introduction by creationist Ray Comfort. Now clearly the last thing we want at a university is the freedom to express ideas and access information. So the scientists sprang into action. Victor H. Hutchison, an emeritus zoology professor, explains that "two men were here today passing out the books."

As soon as this was discovered, word was rapidly spread to biology departments and faculty, staff, graduate students and undergraduates rushed out to get copies to keep them from going to unsuspecting students.

The men distributing the books had one suitcase and one back pack full of books. We know of at least several dozen volumes that were acquired by Comfort opponents. By noon the two men were gone, hopefully not to return. If they do, those on our side are ready to grab more. ... If it is not too late, perhaps other campuses can do the same and get many volumes out of circulation.

Are You My Mother?

Anne Marie is more stable today than yesterday. Her bleeding and oozing have almost stopped and her blood pressure has risen just a bit. They have increased her pain and sedation medication so she seems to be more comfortable and restful. The pain medicine can make her blood pressure drop so the doctors and nurses have to find the right balance of managing these together. She is also still on antibiotics for infection and they have had to increase her oxygen level just a bit, but all of her blood gas labs looked good this morning. She still hasn't had any urine output, which the doctors really want to see.

Two of the biggest lessons I am learning on the twelfth floor are trust and gratitude. I see more than ever my need to trust God not just for tomorrow, but for my very next step and then the next step after that. Like Anne Marie, I am taking baby steps. Unfortunately, I am a slow learner, but God is patient and gracious. One of the biggest struggles with trust has to do with not being able to hold Anne Marie and mother her the way I had hoped.

There's a book I remember reading when I was little entitled Are You My Mother? It’s the story of a baby bird whose mother is away getting worms when he is hatched. The baby bird goes off in search of his mother. Not knowing what his mother looks like, he asks everything from a cow to a steam shovel the question, "Are you my mother?"

Anne Marie has lots of people taking care of her each day. Lots of people touching her, examining her, changing her dressings, changing her diapers. I wonder, does she know I’m her mother? It doesn’t take newborns long to know the touch of their mothers, the smell of their mothers, the feel of a mother’s breath on their tiny necks. The comfort of a mother’s arms and of being cradled and nursed. Anne Marie doesn’t know these things. And I wonder, does she know that the hands that are rubbing lotion on her dry, wrinkled legs are her mother’s? Does she know that the lips that kiss her few places that aren’t covered with tape and tubes are her mother's, and the voice that tries to soothe her when she cries is the voice of one that loves her more than she can imagine? I haven’t been able to mother her in the way I would have chosen. No first baths or late-night rockings. No dressing her in pink sleepers and snuggling her in warm blankets. My mothering involves things like asking the nurse how her last blood gas looked and asking if I can see her latest X-ray. It has been suctioning out her mouth and wiping her swollen little eyelids. It has been rubbing her head when she cries and trying to get her to settle down when I can’t pick her up and hold her. Does she know I’m her mother? As she is crying (without any sounds coming out) and looking at me so helplessly, does she wonder why I’m not doing anything to help her?

This has been a hard lesson in trust. Trusting that all things work together for good, even this. God knew what her road was going to be like and He knows how much babies need their mothers and how much mothers love their babies. Trusting that God’s love for her is far greater than mine and trusting that Anne Marie somehow knows how much I love her. I'm praying that one day I will be able to tell her how grateful I am that He chose me to be her mother.

The Latest from the Roller Coaster

Susie and I have remarked before that our journey with Anne Marie very much resembles a roller-coaster ride. Just yesterday we were celebrating a successful surgery, but this morning the rotating attending physician told Susie, "I'm not going to sugarcoat it -- this is the most concerned I've been about her yet." Anne Marie's blood pressure is low, and the doctors think she might be "septic," i.e., that she has an infection which has spread via her bloodstream. They are treating her with antibiotics. Please pray for her. I just look at her and think, "The little thing is being pummeled. How much of this can she take?" Please pray that God will comfort her and save her life.

Essentially, we're looking at the same thing we were two weeks ago: One of two things is going on here. Thankfully, God is sovereign over everything, including roller-coaster rides.

Another Big Hurdle Cleared

When my oldest daughter, Lillie, was seven years old she broke her arm and had to have emergency surgery. Lincoln once ripped off part of his ear on an alpine slide in Colorado and had to have many stitches to fix it. Mary Margaret has also had a broken arm, and Jack Henry's only medical procedure has been a frenetomy. So Anne Marie, Lord willing, will one day have bragging rights when she is comparing stories with her brothers and sisters. She'll be able to say that she was on ECMO for 27 days, had her stomach in a silo for two weeks, and had two major operations and several other surgical procedures -- all in her first 30 days of life. When I pray for Anne Marie, I pray that one day she will be able to tell her story of how God preserved her life when it seemed so unlikely.

Her surgery today was supposed to take place in the operating room on the second floor, but early this morning her blood pressure dropped and the doctors thought it best to do surgery without moving her. So at about 12:30 the surgery team came to her room on the twelfth floor to prep. As I said in the previous post, the surgeon wasn't sure what things would look like once she opened the silo. We had been warned that when her stomach was pushed back into her abdomen that it might crowd her lungs a little and the doctors might have to increase the pressure on the vent because of this. We were also told that the surgeon might have to put on a more permanent silo if her stomach didn't fit into her abdomen. As it turns out, when the surgeon began she saw that Anne Marie's stomach had already dropped down into her abdomen and that what was left in the silo was just blood and clots, which were just washed away. The skin on her abdomen wouldn't completely close, so the surgeon put a biodegradable patch on; over time tissue will grow over this patch (and later when she is one or two she will have another surgery to repair this better). Also, since her stomach had already dropped into her abdomen she didn't have additional crowding on her lungs, which was a very good thing. She did very well during surgery and all her numbers remained good. The surgeon was also able to remove her two chest tubes, which is a good thing because the more tubes Anne Marie has the more sites there are for possible infection. We were thrilled when the surgeon came out at 3:30 and said things went well.

Tonight the doctors are trying to keep her pretty sedated so that she isn't hurting and so she doesn't squirm and rip her stitches. Her sedation medicine can cause her blood pressure to drop; it is already low so the doctors are trying to find a good balance for this.

To sum up, God was once again merciful to us today. He brought Anne Marie over another hurdle. Her surgeon remarked to us today, almost in passing, "most of my partners can't believe she's still alive."

So, it's on to tomorrow. One neonatologist, though pleased with her progress, says Anne Marie's condition is still "very worrisome." The plan is to attempt to wean her from the ventilator, but there's no guarantee she has enough lung (or enough breathing muscle) to survive. But then again, through many dangers, toils and snares she has already come.

Anne Marie with her silo. In the silo (which is like a plastic bag) is part of her stomach.

Anne Marie after surgery this afternoon. The surgeon was able to put a flat patch over the opening in her abdomen and then put a sturdy dressing on it.

Another Big Hurdle

Tomorrow Anne Marie will have another surgery to finish (or partially finish) her abdominal repair. When they first repaired her diaphragm, not all of her abdominal organs were able to fit so the surgeon left some out in a silo until her abdomen stretched a little. Tomorrow at around noon the surgeon will try to put her stomach back in and close her abdomen. No one knows if everything will be able to fit, so this may require several steps and additional surgeries. We won't know exactly what they can do until they get into the operating room tomorrow. When Anne Marie had her initial repair they turned her ICU room into an operating room. Tomorrow she will be transported down to the second-floor operating room for surgery. Of course, today the doctors warned us of the many possible complications -- pneumothorax, putting more pressure on her lungs, or too much stress on her heart, to name just a few. Even the transport from the twelfth floor to the second floor carries risks.

We are encouraged that since she came off ECMO last week, progress has been made in weaning her off the oscillating vent. Her right lung has expanded a little so we are happy about that. She still is on CVVH (which is like dialysis only it is continuous); the doctors say this is a "nagging concern" and that they would really like to see some output from her kidneys.

Here's a little clip from this afternoon of Anne Marie making eyes at her dad.

Thus Far the Lord Has Helped Us

Just as Willie Sutton is (apocryphally) said to have robbed banks "because that's where the money is," Christians go to church because that's where God is.

I realize God is omnipresent, but He is especially present where the Word is rightly preached, the sacraments are faithfully administered, and prayers and praises are offered to Him. That where He meets us, speaks to us, feeds us. Susie and I have found this to be especially true during our time with Anne Marie. It seems like every Sunday morning or Wednesday evening at church, God has found a way to comfort us (as we have remarked here and here, for example). This morning what jumped out at me was one little phrase from the hymn "Come, Thou Fount of Every Blessing."

Here I raise my Ebenezer:
Hither by Thy help I've come;
And I hope by Thy good pleasure
Safely to arrive at home.

The reference is to this verse: "Then Samuel took a stone and set it up between Mizpah and Shen, and called its name Ebenezer, saying, 'Thus far the LORD has helped us.'" Matthew Henry comments:

Samuel erected a thankful memorial of this victory, to the glory of God and for the encouragement of Israel. He set up an Eben-ezer, the stone of help. ... Samuel himself took care to set up this monument. He had been instrumental by prayer to obtain the mercy, and therefore he thought himself in a special manner obliged to make this grateful acknowledgement of it. The reason he gives for the name is, Hitherto the Lord hath helped us, in which he speaks thankfully of what was past, giving the glory of the victory to God only, who had added this to all his former favours; and yet he speaks somewhat doubtfully for the future: "Hitherto things have done well, but what God may yet do with us we know not, that we refer to him; but let us praise him for what he has done." Note, The beginnings of mercy and deliverance are to be acknowledged by us with thankfulness so far as they go, though they be not completely finished, nay, though the issue seem uncertain.

That's precisely where Susie and I are right now. We are grateful for what God has done, yet the future is uncertain. I can promise you that Gilda Radner's old SNL character, Roseanne Roseannadanna, would go nuts on this journey. Truly, "if it's not one thing, it's another." Today we learned that Anne Marie might have an infection; the doctors have put her on antibiotics. Probably in the next few days they will be looking to close her belly, and of course complications are always possible with surgery. But it's fruitless to obsess over every potential problem. Sufficient for the day is its own trouble. For now Susie and I can say without hesitation: "Thus far the LORD has helped us." And (with apologies to the hymnist Robert Robinson) we declare:

Here we raise our Ebenezer:
Hither by Thy help we've come;
And we hope by Thy good pleasure
Safely to take our girl home.

Scenes from Dallas

We don't spend all our time at the hospital. Here are some pics.

Gratitude (cont'd)

I want to follow up on Susie's earlier post on gratitude. (Yes, I realize I'm the second-best blogger in my marriage. I'm dealing with it.)

The Bible tells us that "our God is in heaven; He does whatever He pleases." Gotta love the bluntness. He does whatever He pleases. And yet the Bible also tells us that God listens to the prayers of his people. How to reconcile these things? I cannot, nor do I try. It's a mystery. Like the psalmist, I don't concern myself with things that are too great for me.

But I know that He tells us to pray. "Come now, let us reason together," he says. He listens intently as we lay out our case before Him. On two different occasions -- right before Anne Marie's surgery, and then again before she came off ECMO -- I have to admit I was at the end of my rope and had to retire to a private consultation room around the corner from Anne Marie's room. On both of these occasions the prospect of her death was very real. Through tears I prayed:

I know you're gonna do what you're gonna do. And I know you don't decide which prayers to answer simply by counting noses. Nevertheless, look at all these people who are praying. I mean, look at them! Don't you hear all these people pleading with you, begging you for mercy? Not to get all in your face, but don't you hear them? Why wouldn't you answer? It would be so easy for you to spare her life! Think about how it will strengthen all these people's faith if you answer their prayers!

I don't pretend to know what's going on in the heavenlies. I see through a glass darkly. And I don't know if Anne Marie will live for another week or another century. My point here is simply this: I am grateful to everyone who is praying for her. God is hearing and answering your prayers.

I love God because he listened to me, listened as I begged for mercy.
   He listened so intently
      as I laid out my case before him.
   Death stared me in the face,
      hell was hard on my heels.
   Up against it, I didn't know which way to turn;
      then I called out to God for help:
   "Please, God!" I cried out.
      "Save my life!"
   God is gracious—it is he who makes things right,
      our most compassionate God.
   God takes the side of the helpless;
      when I was at the end of my rope, he saved me.

-- Psalm 116: 1-6

Looking Ahead

Thank you to everyone who is inquiring about Anne Marie and following her progress on this blog. Brandon and I have tried to stay current with the updates, but it occurs to us that now is a good time to zoom the lens out from the trees and get a wide-angle look at the forest.

One thing I have heard over and over these past few days is the phrase "baby steps." The doctors have told us that Anne Marie's progress will be in baby steps. They say she is still "very sick" and "fragile" and that her prospects are still "iffy." They tell us this could be a long road.

In the past few days they have adjusted her ventilator settings in very small increments, trying to go down each time with the goal being eventually to wean her from the oscillating vent (we've been told this could take weeks or months). This morning when I went to see her, the two numbers that I look at first to get an idea of how she is doing were both down a little bit. These are her preductal and postductal numbers. Yesterday they had been in the 90s. This morning her preductal was in the 80s and her postductal was in the 70s and sometimes dropped to the 60s. She was also very restless and crying on and off.

There are other things the doctors check. They check her blood gas to see what her oxygen level is and also see how much CO2 she is able to get rid of. These two things were also off a little from yesterday. Her oxygen level wasn't as good and her CO2 was getting a little on the high end. So the doctors check various things -- X-rays (to see if her lung has collapsed any), pH levels, vent settings, etc. -- and they try to find out "what she likes." Based on this they adjust the vent. And these adjustments are tiny. Her right lung is still underdeveloped and her left lung (such as it is) really isn't doing anything at all. And no one knows how much her lungs will develop or how long it will take. So this is what they doctors mean by "baby steps" and "fragility."

We don't know what the road ahead will look like. There are lots of baby steps to take. Looking at the big picture this is what we see. First, she needs to have her repair finished. They moved all her abdominal organs out of her chest and created a diaphragm for her (albeit a GORE-TEX patch), but her stomach is still hanging there in a silo and needs to be put back inside and her abdomen needs to be closed. She also needs to be weaned from the oscillating vent (again, this could take weeks or months) and then she will go on a regular vent and then be weaned from that. She will also need to learn how to eat properly (CDH babies often have trouble with the suck and swallow motion) and finally be weaned from all of her pain medication. Again, no one know just how long this process will be. The doctors and nurses still say "if she makes it that far" when referring to the future.

All that to say: We don't know what the future holds. We are just trusting God for one baby step at a time.

Tonight when we left the hospital Anne Marie was relaxed and sleeping peacefully. The doctors had tweaked her vent and her numbers looked better. And she had gotten a visit from her 7-year-old brother and 11-year-old sister. As always, we are grateful for one more day and for the baby steps along the way.

This is the monitor we see every day when we come in. The green number is her heart rate, the red number is her blood pressure, the blue number is her preductal number, and the aqua number is her postductal number.

Anne Marie and Mary Margaret

Gratitude

As I sit here typing this, I feel a little like the celebrities who win the Oscar and get up and try to thank all the people they would like to thank. They are so overwhelmed that they stand up there fumbling with words and trying to remember everyone they want to thank. We feel the same way. Brandon and I are just so overwhelmed with all of the support and we want to express how truly grateful we are.

Most of all we are grateful to God for preserving Anne Marie's life so far and for continuing to work in her little body. What we thought was going to be a terrible day yesterday turned into joy. And today she is four weeks old! She had a good day today -- her numbers all look good and her blood pressure and heart rate look good. She is pretty swollen and purple and has a pretty big hematoma from having her cannulas removed. This is something the doctors are just watching to make sure it doesn't get any worse. We are over one more hurdle and are waiting to see what's next.

Also during these past weeks as I thank God for Anne Marie I am always thanking Him for our other children -- Lincoln, Lillie, Mary Margaret, and Jack Henry. They are on this journey with us and have been troupers from day one. They have been shuffled to different places to stay, their school routine has been adjusted, they have had to leave what is familiar to them to come to a place that is unfamiliar. And yet, they have not complained, not once. So not only are we grateful to God for preserving Anne Marie, but we are grateful that He is sustaining our children and our family.

We have received many warm, encouraging, uplifting, tear-inducing notes, e-mails, texts, and messages from people. Messages from people who are praying for Anne Marie. We appreciate each and every one. We have heard from people we went to school with and haven't seen in years. We have heard from close friends from church and friends from years ago, from neighbors, and from people we haven't yet met. The day Anne Marie went off ECMO a family we've never met came to the hospital bearing gifts, including an audio Bible that we could play in Anne Marie's room. We have heard from so many people in the conservative movement in Oklahoma and throughout the country. We have been blessed with home-cooked meals. We are grateful to our church in Edmond, Heritage Presbyterian. The people there have prayed for us and supported us and sent us care packages; pastors and friends have come to Dallas to be with us in the hospital and to pray for Anne Marie. We are grateful to the pastors from Park Cities Presbyterian Church in Dallas who have visited us in the hospital and prayed for Anne Marie. We are grateful beyond words for all of these things. And just like with the Oscar-winner's acceptance speech, "I know I'm forgetting someone."

We are also so thankful to our good friends Kym, Ginger, and Carol who have been watching our kids. Our oldest son, Lincoln, has been living with my friend Ginger and her family for the past six weeks. She's been cooking for him, doing his laundry, grading his homework, etc. Leaving Lincoln in Edmond was one of the hardest things about coming to Dallas, but knowing he was with Ginger made it so much easier. And our other kids have from time to time gone to Edmond to stay with my friend Carol or Kym so Brandon and I could be at the hospital. It has been a huge help. We are also so thankful for grandparents who have been here with us for weeks helping with the kids. They come early in the morning when we leave for the hospital and stay with the kids. They help with school work, take them to eat, go to the park, etc. so that we are able to be with Anne Marie. I don't know what we would have done without this.

While we are sitting at the hospital, Brandon will take out his phone and read me the many e-mails and While we are sitting at the hospital, Brandon will take out his phone and read me the many e-mails and Facebook messages we have gotten. Messages from people who say they are praying for Anne Marie and for our family. To say that we are thankful is an understatement. We really just can't express how thankful we are to everyone who has prayed for Anne Marie. I hope for the day when I will be able to tell her the story of her birth and about the all the people who prayed for her.

Extraordinary

Yesterday morning Brandon and I sat in Anne Marie's room while she had her "trial off" ECMO. A trial off is basically a practice run to see how she will do for the real thing. They clamp the machine so that her blood begins to circulate through her heart and lungs rather than being oxygenated by the ECMO machine. They can easily unclamp it if her numbers drop. We are easily able to tell how she is doing by watching the numbers on her monitor. We've learned what to look for and what are "good numbers." We can also tell how things are going by the doctors' reaction and by the results of a blood test they do every 10 minutes.

So yesterday they clamped her off and we watched the monitor. We watched two of her numbers -- numbers that are 100 when ECMO is supporting her -- steadily fall: 90, 80, 70, 60, 50, and lower. We saw the faces of the doctors when they looked at her blood gas results and we heard them quickly say, "Get her back on." Throughout the day we saw her doctors come and go. X-rays were taken, blood was checked, bandages were changed from all the bleeding she had. All we could do was wait, standing there stroking her little hands and legs. Finally, yesterday afternoon three doctors took us into a private consultation room to talk. They had their game faces on. They told us that because of the amount of bleeding she had and because the ECMO complications were increasing, she would have to come off ECMO. They didn't say that all hope was gone, but you know it's serious when conversations with doctors start to include words like "do not resuscitate" and "we'll make sure she's comfortable" and "autopsy."

So we walked back to her room. We stood by her bed and looked at her beautiful face and cried. And I prepared myself for the worst. Within a few hours our oldest children were on their way to Dallas from Oklahoma City so we could all be together. We arranged for a worship service, including Anne Marie's baptism, to be held in her room the next morning (today). Brandon and I came up to the hospital again last night so we could be with her again. The mood in her room was somber. I stood and kissed her head and hands, and ached to pick her up and hold her. I talked to her and sang to her. I told her how much we loved her and how much her brothers and sisters loved her and how many people were praying for her. And I wondered how I would be able to say goodbye to her. And once again, I asked God to save her, to let us bring her home, and to please let me trust Him no matter what He decides to do.

We came to the hospital this morning at 6:45. More standing by her bed gazing at her little face, more stroking her arms and legs, more kisses, and lots more tears. The kids came in to see her again. Pastor Shawn Young got up in the middle of the night and drove to Dallas so that he (along with Matt Oliver and Patrick Lafferty) could preside over a worship service in her room with family and close friends. And though the service was beautiful, a definite sadness hung over the room. Shortly after she was baptized (pictured below), she opened her eyes. I thought it might be the last time I saw her with her eyes open.

Rev. Shawn Young baptizes Anne Marie

The doctors began preparing for her to come off ECMO. They gave orders for sedation, checked blood and oxygen-saturation levels, rearranged tubes, and called the surgery team to come up and take her cannulas out. And once again Brandon and I sat on the couch watching her monitor, knowing this time it wasn't a trial but the real thing. Right before they started, Brandon leaned over and told me that in the waiting area just a few minutes prior, Rev. Lafferty, a pastor at Park Cities Presbyterian Church, had prayed that God would do something "extraordinary" today. And judging by the deluge of e-mails, texts, phone calls, and Facebook messages we have received, he was far from alone. (We are incredibly grateful for this outpouring of support, but that's a whole other post.)

And so they clamped her off and we waited. Her numbers -- normally 100 when on ECMO -- dropped to 90 and stopped, then fell off into the upper 80s, then went back to 90 and stayed level. After 10 minutes they took a blood gas and her carbon level -- the doctors want it in the 40s, but on previous trial-offs it had been 100, 70, 60, and 70 -- was 43. Another 10 minutes passed and her numbers were still in the 90s. Another blood gas was taken. The ECMO tech smiled when she saw the results and showed them to the doctor. Another 10 minutes passed and her numbers were still in the 90s and high 80s. The doctor looked at me and said, "Don't ask me to explain this because I can't." The nurse looked over at me and was beaming. The surgery team came in to prepare to take her cannulas out.

And now I sit here in Anne Marie's room tonight -- 24 hours after we thought it might be our last night with her. The ECMO machine is out of her room. Her numbers that we have been watching on her monitor are both 100. People have come in and looked at the monitor and wondered if she was put back on ECMO because her numbers are so good. The doctor came in earlier to look at the computer screen with various lab results on it and said to the nurse, "How do you explain that?"

Now that same doctor, whom we love, also reminded us today that Anne Marie is "still very sick" and that her situation is still "iffy." Her kidneys still aren't functioning, she still needs surgery to finish her stomach repair, she has a hematoma, and other possible complications lurk. We understand the gravity of it all, and we understand that doctors do not and should not sugarcoat things. We understand that Anne Marie could live 9 more hours or 90 more years.

But right now we are more grateful than we can say. We watched God do something extraordinary today. My friend Kym sent me a text today that said, "To God alone be the glory! Great things you have done." That pretty much says it all.