'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? While 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, and even changes his mind! 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 previous churches, 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 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.

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.

Big Monday Tuesday Wednesday

Twice today Anne Marie came off ECMO for 10-minute trial runs. Neither time was particularly successful. Nevertheless, the ECMO chickens have come home to roost (the complications now outweigh the benefits) so tomorrow morning she is coming off ECMO for good. At the risk of sounding like a broken record, I would ask you simply to petition her Heavenly Father to declare: "I will ... put breath in you, and you shall live, and you shall know that I am the LORD."

Big MondayTuesday

Well, everything has basically been pushed back 24 hours. Anne Marie was going to try to come off ECMO today, but "she threw us a curve ball," as the doctor put it. An X-ray revealed a pneumothorax, which required a surgeon to come put in a chest tube. So, barring any unforeseen complications tonight, she will try to come off ECMO tomorrow.

Big Monday

Welcome to Anne Marie's room. This is the view when you first walk in. Trust me, there's a bed in there and she's in it.

Anne Marie had her first-ever taste of mother's milk today. Below is a shot of Dad feeding her with a syringe (minus the needle, of course). Later Susie put a little bit of milk on a pacifier and Anne Marie tried that for a while.

Below is a brief video clip from today. If Anne Marie could talk I think she would be saying, "That milk was good. I could get used to that!" (Come to think of it, she might actually say, "Not to be a bother, but why is my stomach hanging here in this bag?)



Anne Marie has no idea what's in store for her tomorrow. She's been on ECMO for 23 days now -- "we're living on borrowed time," one doctor said of that unusually long run -- and it's time to come off. The plan is to trial her off tomorrow morning and then, if conditions are favorable, decannulate and keep her off for good. To put it bluntly, it's sink-or-swim time. So again, I would ask you to petition her Heavenly Father to declare: "I will ... put breath in you, and you shall live, and you shall know that I am the LORD."

Eyes Wide Open

Yesterday afternoon was Anne Marie's one-hour trial off ECMO. Bascially what they do is clamp the lines on the ECMO machine so that her blood is circulating through her heart and lungs rather than being circulated through the machine. During her trial off, they check her blood gases every 10 minutes. They are checking to see what her oxygen level is as well as her CO2 level.

During the last two trials her CO2 has been really high. The first time it was in the 100s and the second time it was in the 70s. A good number is about 45. Also during the last two trials her postductal number (basically showing the blood flow in the lower part of her body) had really taken a nose dive. Not only did the number go down, but her legs and feet turned gray. Yesterday when she trialed off, the doctor commented that "her numbers aren't gorgeous, but I'll take 'em." This time her CO2 level was in the 60s -- not great, but we've been told the body can sometimes adjust to this higher carbon level. Her heart rate was good, her postductal saturation number remained fairly stable, and she looked good and pink the whole time. During the trial off the doctors also didn't have to adjust the ventilator at all (which they had thought they might have to do). Her blood pressure went down some, but this can be corrected with medication. So we are cautiously pleased with how she did. Now her team of doctors will get together and discuss how she did and where we go from here. We should know more today.

Here is Anne Marie's ECMO machine.

Even though yesterday's trial-off was satisfying, it wasn't the high point of the day. The high point was having Anne Marie open her eyes and look at me for about an hour. She looks around (as best she can) and tries to move her mouth, which she can't do very well because of the tape. She will open her eyes when I talk or sing to her. I could stand by her bed all day and stare at her beautiful blue eyes.

Another Day

This afternoon (about 30 minutes after I shot this video) Anne Marie was taken off ECMO for an hour. The doctors were cautiously pleased. "Her numbers aren't gorgeous," one doctor said, "but I'll take 'em." At this point, so will we.

We're off to have dinner with some friends from Heritage Presbyterian Church. More updates to follow.

The Latest on Anne Marie

UPDATE, 2:O2 PM: It turns out Anne Marie is not going to "trial off" ECMO today as I indicated in this post earlier today. The plan now is to try it tomorrow.

I imagine one of the hardest parts of being a doctor is having to sit down with parents and tell them that their options are limited or, worse yet, that there are no more options. Thankfully, in yesterday's meeting with our team of doctors they didn't tell us that they had done all they can do and that we are out of options. We were told, however, that the list of possible options is getting smaller and smaller. As I've said before, there are so many factors to all this that it is difficult to give updates and repeat every last thing we've been told. There are lots of details and so many parts that are dependent on other parts.

Today the doctors basically told us the positives and negatives of how Anne Marie is doing and where we might possibly go from here. The positives are that she came through surgery with very few complications. Her bleeding is under control. She hasn't developed an infection. Many of her "numbers" that they monitor continue to be good. They also haven't had any complications with the ECMO machine and they only had to change the circuit once. The doctors were also finally able to get a good echocardiogram, which showed she doesn't have a hypoplastic heart (which is a huge relief). We are grateful for all of these things. Some negatives are that they still haven't closed her belly and won't be able to until she comes off ECMO. Her renal function is a serious concern. Her pulmonary hypertension is still a problem, and the doctors have almost maximized the options to help with that.

Today is Anne Marie's 20th day on ECMO. The "normal" time period for a CDH baby is about 7-10 days. There comes a point where the complications from ECMO begin to outweigh the benefits of staying on, and we are getting close to that point. So eventually she is going to have to come off, and the doctors told us that it's better to do it in a controlled setting rather than having a complication arise which forces them to "crash off" ECMO. When she has tried to come off ECMO the two previous times, her oxygen level has been OK but the problem has been with her carbon dioxide (she hasn't been able to get rid of enough of it). The doctors can help with this using the vent, but if they turn the vent up much higher there is a possibility that it could permanently damage her lungs. So it's a fine line, figuring out how much to turn up the vent so that her carbon dioxide is at an acceptable level without damaging her lungs.

As of now, the plan is to have another trial run today of having her come off the ECMO machine. This time they will turn the vent up just a bit and see if she does any better. The previous times they have tried for 30 minutes and then gone back on. Every 10 minutes of so they check her oxygen and carbon level in her blood to see how she is doing. Today they are going to try to take her off ECMO for 60 minutes to see if her carbon number improves over a longer stretch of time.

The doctors have told us they aren't optimistic about things. And just by looking at her, and considering all the many complications, we understand why they say this. Even if she is able to come off ECMO, we realize she still has a long road ahead of her. We continue in all of this to ask God to help us trust Him and His purposes, knowing that all the days planned for her were written before she was even one day old.

'I Will Get Glory'

Yesterday and again today, the doctors took Anne Marie off ECMO (the heart-lung bypass machine that is essentially keeping her alive) for a 30-minute stretch to see if she has what it takes to make a go of it. Both times the results were disappointing. It's a very real possibility that she simply doesn't have enough lung to survive. Tomorrow morning at 11 the entire team of doctors wants to meet with Susie and me. I'm not sure what they're going to say, but I gotta admit I'm not getting warm fuzzies about the whole thing.

One of two things is going on here. Either:

1. Anne Marie is going to die and be ushered into Christ's presence. If so, God will receive glory -- for the salvation He provided for her in Christ, for the sanctification he is working in her parents, and for a thousand other reasons yet unknown. Or,
2. God is going to preserve Anne Marie's life. If so, God will receive glory -- for answering the prayers of His people by displaying His mighty power and unfathomable mercy.
   

Now I'd have to acknowledge that, from the looks of things, scenario one appears more likely. Susie and I have read enough about this birth defect to know what we know. However, as a great old hymn reminds us: "Judge not the Lord by feeble sense." Recall, for example, what happened before God's people crossed the Red Sea:

Then the LORD said to Moses, "Tell the people of Israel to turn back and encamp in front of Pi-hahiroth, between Migdol and the sea, in front of Baal-zephon; you shall encamp facing it, by the sea. For Pharaoh will say of the people of Israel, 'They are wandering in the land; the wilderness has shut them in.' And I will harden Pharaoh's heart, and he will pursue them, and I will get glory over Pharaoh and all his host, and the Egyptians shall know that I am the LORD. And they did so.

Did you catch the significance of that? Pharaoh had finally let God's people go (hooray!), they were skedaddling from Egypt, they had gotten to the edge of the wilderness ... and then look what happened. Matthew Henry explains:

Instead of going forward, they are ordered to turn short off, on the right hand from Canaan, and to march towards the Red Sea. Where they were, at Etham, there was no sea in their way to obstruct their passage: but God himself orders them into straits, which might give them an assurance that when his purposes were served he would without fail bring them out of those straits. Note, God sometimes raises difficulties in the way of the salvation of his people, that he may have the glory of subduing them, and helping his people over them.

I hope and pray that's what's going on with Anne Marie. Scenario number two. God is hemming us in on every side, raising difficulties so that he may have the glory of subduing them. Indeed, to some extent this has already happened. Before her surgery we were told that "her chances of survival are low." Yet God preserved her life. We are praying that He will do so again, that He will unambiguously declare: "I will ... put breath in you, and you shall live, and you shall know that I am the LORD."