Halloween in Big D

Another Day with Anne Marie

After surgery on Thursday we were breathing a huge sigh of relief, and the doctors continue to tell us how amazed they are that Anne Marie came through surgery so well. Yesterday one of the doctors who helps with Anne Marie (but isn't one of her main doctors) said, "Everyone is talking about what a strong little girl she is. We are all amazed at how well she did." God willing, one day Anne Marie will be able to tell everyone how God brought her through surgery. We continue to thank God for preserving her life so far and now we are gearing up for what's next.

She is still doing well, but continues to have bleeding. It's a situation that the doctors continue to watch as they give her blood products. And she still has the "unknown issue" with her heart. It has shifted almost back to the center of her chest (praise God), but the cardiologist still can't get a good view from the echocardiogram to see exactly what's going on. They will have to wait until they turn down the ECMO flow and allow more of her blood to flow through her heart to see what it is doing. Until they are able to wean her from ECMO a little bit they won't know much more. We are praying that her heart is full-sized and simply heretofore hasn't had much room. They are also still watching her fluid output. She hasn't had much urine output; they would like to see more so they can know her kidneys are functioning normally.

The weaning from ECMO is also another big hurdle. She has been on it now for 16 days, and the longer a baby is on ECMO the more chances there are for complications. The surgeons are very anxious to have her weaned so that they can control the bleeding and close her belly (though Brandon says having an intestine hanging out makes for a great Halloween costume). The neonatologists would also like her weaned but would like to do it in baby steps.

Again, there are just so many factors involved, but those are the big ones right now. For those who would pray for Anne Marie, please pray

• That Christ would cause Anne Marie's bleeding to stop, just as He did for the woman with the issue of blood;
• That her heart would function normally and that her pulmonary hypertension would improve;
• That she would be able to urinate; and
• That her lungs would continue to expand and that she would be able to be weaned off ECMO.

It is easy to become discouraged after talking to the doctors about all the various issues involved and all the hurdles yet to clear. They are very compassionate, but they don't sugarcoat things. And today I was checking another blog of parents who have a CDH baby, only to find out that he died last night after a 30-day battle. So discouragement can come, even with the joy of a successful surgery. But today at lunch Brandon showed me something that Randy Alcorn tweeted today:

God loves a great story. Before we fault him for plot twists we don't like, let's remember that Jesus has written the story in his own blood.

We are grateful that God knows the beginning and end of our story, and we trust Him for all the plot twists in between. And we are grateful for the many people who continue to pray for us.

Thanks Be to God

I don't think Brandon and I could ever put into words how grateful we are right now. Grateful for the many prayers for Anne Marie and our family, grateful for all of the kind messages we've gotten, grateful for our friends and family who were with us today. And mostly grateful to God for hearing and answering our prayers and for bringing Anne Marie through surgery.

Before surgery we were told of its many risks and the chances of her surviving surgery on ECMO. The doctor told us Anne Marie's chances of survival "are low, but they're not zero." So of course we were fearful as we gazed into her eyes this morning (see below).



So we prayed that God would be with the surgeons and all the doctors and that she would make it through surgery. Throughout the operation the doctors would come and let us know how things were going. Each time they said that she was doing really well and that her vital signs were looking good. After the surgery, the neonatologist and trauma doctor said that Anne Marie did so well during surgery that they weren't really even needed. After it was over the surgeon came to explain what they did and the neonatologist came to tell us what the next steps would be. Even though we have had countless sonograms and several MRIs, the doctors didn't know how big the hole in her diaphragm was going to be until they actuallly opened her up. As it turns out, she had virtually no diaphragm and not even much tissue around where the diaphram should have been. They had to use a GORE-TEX patch to form a diaphragm and sew it to parts of her rib and what little tissue they could find. They also weren't able to close her abdomen completely because it was too small for all of her organs to fit. Over time the abdomen can expand and they will close it then. The surgeon also warned us that with this big of a patch that there is a high risk of reoccurance. Her doctor also warned us that Anne Marie's next few days could be very good or very bad depending on if any complications arise. We know that Anne Marie still has a long road ahead of her, but we are just so thankful for today and are not worrying about tomorrow. Sufficient for the day is its own trouble.

The neonatologist is very pleased with all of Anne Marie's "numbers" (oxygen levels, blood pressure, heart rate, etc). She is still on ECMO and the goal is still to wean her off ECMO onto a ventilator and to continue to try to expand her lungs. Now that she has more room in her chest cavity, they are hoping they might have more success than before. She had an X-ray this evening and already her heart has shifted over just a bit. The two biggest concerns right now for Anne Marie are trying to control her bleeding (she is on blood thinner while she is on ECMO so the ECMO pump doesn't clot up) and making sure that her kidneys are functioning properly from the dialysis. This is what they are very carefully monitoring tonight and will continue to watch.

We were given lots of information today about what we could expect and what the long road ahead might look like. But for now we are praising God for his tender mercies toward us today.

A Good Day

Anne Marie's surgery went well. Her doctors said she tolerated it very well, that her vital signs were so good during the operation that one wouldn't even know she was undergoing surgery. More challenges await, but for today her doctors (and her parents) are very pleased that she lived to fight another day. More updates to follow. Thank you to everyone for thinking of us, praying for us, and sending along your best wishes.

Surgery Tomorrow

 

Anne Marie, 13 days old, opened her eyes today (see above), a rare occurrence which brought no small amount of joy to her mom and 11-year-old sister (below).



Tomorrow is a big day, a very big day, the biggest day yet, really. Today the doctors told us we're at a crossroads; tomorrow at noon Anne Marie is scheduled to have a two- to three-hour surgery to repair her diaphragmatic hernia. Suffice it to say the little princess -- plagued with pulmonary hypertension, her little heart pancaked over where it doesn't belong, surviving on a heart-lung machine -- isn't what you'd call an ideal candidate for surgery. But we're running out of options, and it's time to give it a try. Susie and I covet your prayers. Prayers that this risky surgery will have minimal complications and that Anne Marie's two-week birthday tomorrow will be the first day of the rest of her long life.

Happy 17th Birthday, Lincoln

Tomorrow Is Another Day

We have been going to a church here in Dallas, Park Cities Presbyterian Church, that has a Wednesday night Vespers service. There is a short message followed by communion. Last Wednesday the pastor began by talking about taking things for granted. We take it for granted that each day we are going to wake up and the atmosphere is going to be perfectly suited for us to breathe. We take it for granted that gravity is going to hold the planets perfectly in orbit. I do take these things for granted, but for the past few weeks I have woken up and my first thought has been, "Thank you, God, for one more day that hasn't been promised to us. Thank you for one more day with Brandon and my children." And every day these past 12 days I have been grateful for one more day with Anne Marie. Tonight my friend Ginger reminded me how we are all dependent on God for our very next breath, but that we see that more clearly in Anne Marie.

This afternoon two of Anne Marie's main doctors gave us an update and a plan for surgery. Anne Marie has been on ECMO for 12 days and in those 12 days has made some tiny improvements in increased lung volume. However, her lung X-ray today was not as good as the three previous days. Basically, she is not getting any better on ECMO. They have tried to wean her from it a little each day, but haven't had much success and mostly have had to keep her at 100 percent assistance. Her doctor said that Anne Marie isn't the most severe case they have seen, but she is one of the most complicated. Today both doctors said that her team has spent hours discussing her case and what to do.

They all believe that surgery on ECMO is really her only chance. Surgery on ECMO is very risky because her blood is thinner and doesn't clot as well. They had also hoped to wean her a little from the ECMO machine so that during surgery if she needed more assistance they could turn up the flow. As it stands now, she is at a very high level so there isn't much room to increase assistance if she should need it. The surgery is also very hard on her tiny heart, a heart that is already under extreme stress from being so squished. The doctors were all very compassionate and informative, but also very forthright about her chances. "She won't make it if she just stays on ECMO, and she probably won't make it through surgery."

We have known and believed all along that God will be the one to heal Anne Marie if He chooses. And we haven't given up hope. I stand by her bed and kiss her little hands and feet and stroke her head. She is so beautiful and looks so perfect. I ask God to help me love and trust Him more, and I ask Him to heal her. I just can't bear to have to say goodbye.

Here's Looking at You, Kid

For the first time in a long time, Anne Marie opened her eyes today:


Also, Mary Margaret and Jack Henry got to see her for the first time:

Roller Coaster

Before we came to Dallas, the doctors warned us that this journey with Anne Marie would be a "roller coaster." They were right. In the last few days Anne Marie has taken a few steps forward and a few steps back, and Brandon and I have had some emotional highs and lows.

Yesterday, Anne Marie had to start kidney dialysis to help get rid of some of the fluid. The medicine they had been giving her is hard on her kidneys, so they had to stop the medicine and begin dialysis. She also got a bit red and splotchy and her white count was a little high so her doctor thought she might have some kind of infection. She started antibiotics and her white count has gone back down, so that seemed to have helped.

Her doctor also did a treatment yesterday to expand her lungs a little more. She had an X-ray yesterday and it showed a little more lung than before. They are also continuing to slowly inflate her lung with the ventilator by turning it up a little more each day. Her doctor was very pleased with her X-ray this afternoon -- even I could see the improvement -- so we are very happy about that. (That's three days in a row that an X-ray has shown more lung than the day before.) They are also going to be a little more aggressive in turning down the ECMO flow to try and wean her from it just a little bit.

Anne Marie has several superb physicians giving input in her care. She has a main attending doctor, a cardiologist, and a pediatric surgeon, and the head of neonatology is also giving input. They all "put their heads together" to try to figure out the best course of treatment. And sometimes they don't always completely agree, which is normal. The surgeons really would like for babies to show more lung improvement and be off ECMO before they do surgery because of the high risk of bleeding in the chest cavity and/or abdominal cavity (ECMO makes the blood thinner). Her main attending doctor and the neonatologist agree that this is a very legitimate risk but believe that in her case she isn't going to show much lung improvement until the organs in her chest are moved down, so they really want to do the surgery while she is on ECMO (possibly in the next few days).

Another curve ball that has developed has to do with her heart. It is really squished over to the right and hard to see on an echocardiogram. The cardiologist can't really tell if it is just squished or if she might have a hypoplastic heart. Anne Marie had an extensive fetal echocardiogram three months ago in Houston, and the doctor there said that her heart was structurally normal, so we think it is just really squished and once the surgery is done it will function normally and shift back to the center of her chest. It is a concern to the doctors here because if it is a small heart then surgery is even riskier. The surgery is hard on a normal heart and even harder on a small heart. Right now they are treating her as just a CDH patient and not a CDH/heart patient. She will have another echo tomorrow to see if they can see anything different.

So that is where we stand right now. Here are some specific things we would ask you to pray for if you are so inclined:

• Wisdom for the doctors, that they would know the best time to perform surgery and that her echocardiogram would help the doctors make that decision;
• Continued lung expansion and that she would be able to be weaned of ECMO;
• No infections; and
  
• That the dialysis would be successful in getting rid of extra fluid.
  

Patients Must Have Patience

Anne Marie had a good day today. They did more of the same treatment -- they turned up the vent a little more and kept her right side propped up. She had an X-ray this afternoon and it showed a tiny bit of lung increase. It's a very small amount, but her doctor was pleased and reminded us that this process is very slow.

God Is Here

There is a lot of pain here on the 12th floor of the Children's Medical Center. I see parents in the ICU waiting room red-eyed and tired. Extended family members come and go bringing food and support. On Anne Marie's first day here there was an Asian-American family in the waiting room who had a son two doors down from us. I couldn't really tell how old their little boy was because he was surrounded by machines and covered up with blankets, but I'm guessing he was about four. His mom and dad would come and go and his older sisters would sit in the waiting room ... just waiting. On Saturday there were lots of tears and his family members were just clinging to each other. His dad stood by the bedside, shoulders slumped, head down. Early Sunday morning before church I came in to see Anne Marie and the little boy's room was completely empty. No bed, no machines, just an empty room waiting for another patient. Yesterday another patient arrived. So there is sadness here. It's a place where one might wonder where God is. Doesn't He see the pain of these families? Is He here? Is He listening?

And yet, I see God everywhere here. I thank Him every day for the ECMO machine, the terrible machine we hoped to avoid but which is now keeping our baby alive. It's a miracle that God would give someone the wisdom and knowledge to invent such a machine. I thank Him for the nurses and ECMO techs who watch Anne Marie all day and all night. And I don't mean they just sit and watch. They are constantly checking numbers and stats. They are monitoring tubes and connections. They are checking medications and levels of fluid. I thank Him for the doctors who are caring for Anne Marie. Brilliant people who are here day and night. I look past the countless tubes and wires Anne Marie is connected to and see her beautiful face. A combination of all our kids -- Lincoln and Mary Margaret's face, Jack Henry and Lillie's dark hair. I see her perfect fingers and toes. I stand and stroke her little fingers and ache because I love her so much, and then God reminds me how much He loves her. More than I can possibly imagine. God is here. There is no doubt about it. He is here in all this pain. Pain that is impossible for us to understand, but through which we learn to trust Him more.

Yesterday the doctors began to increase the ventilator pressure to try to slowly expand Anne Marie's lung. There didn't seem to be much improvement, so today they were a little more aggressive, increasing the vent from a 12 to a 13 (just a small increase so they don't "blow out" her lung). They did a chest X-ray this afternoon and did see some improvement. It was just a tiny bit of lung that showed up, but it was progress. They also propped her right side up a little bit, and to treat her pulmonary hypertension they gave her some medicine called Sildenafil (perhaps you've heard of it as ... Viagra).

The goal here is to "recruit" (expand) her right lung. All of the numbers they monitored today looked good. Please pray that Anne Marie's lung would continue to expand each day so that she will be able to be weaned off ECMO and be prepared to undergo the surgical repair she needs.

Big Brother (The Good Kind) Pays a Visit

Above is a little clip from yesterday. Anne Marie had a good night last night. By good I mean that her oxygen levels, heart rate, and blood-pressure reading stayed where they "should be" and that her fluid output was good. She was peaceful and calm. The number that was worrisome yesterday (measuring her blood flow in her lower body) was back to normal today. The doctor said that they didn't know what happened but "for some reason the problem corrected itself."

Today they are trying to get rid of a pretty big gas bubble in her stomach and are starting very slowly to turn up the vent in an attempt to expand her lung little by little. The goal is to turn up the vent (expanding her lung) and turn down ECMO. Please pray for success in this area, as it will prepare her to be ready for surgery. Please pray for wisdom for the doctors. Please pray that the ECMO machine will continue to work properly and will not clot (which is always a concern with the ECMO machine).

This morning at 6:30 Lincoln hopped on a Southwest Airlines jet in Oklahoma City and today got to see his baby sister for the first time:

What We Know Today

It is hard to keep up with all the numbers and understand exactly what is going on in Anne Marie's tiny body. The doctors explain things and I understand them at the time, and then not long afterwards they can tend to become a jumble of information. Our neonatologist told us today that Anne Marie's fluid level looks great. They have decreased her medicine because she is doing so well with her fluid. Her hypertension, however, doesn't look so great. The doctors are measuring her oxygen saturation level in two places, upper extremities and lower extremities. Her upper extremity numbers are perfect -- because she is on full ECMO support so they can set the machine to get exactly what they want. Her lower extremity numbers dropped early this morning, which tells the doctors that the blood isn't flowing as well in her lower extremities and that her hypertension isn't improving much.

That is the bare-bones update; it is hard to understand everything to begin with and even harder to repeat it back. Whenever we get too deep in the details Brandon reminds me of what John Piper says in his piece "Don't Waste Your Cancer." Piper says, "You will waste your cancer if you spend too much time reading about cancer and not enough time reading about God." So on one hand we want to understand what the doctors are telling us, especially because we know there will be many decisions that need to be made. On the other hand, we want to know more about God than we do about CDH. This is what I know about both: Right now Anne Marie is very sick. When I whittle everything down, I know that 15 percent right-lung volume and no left lung volume is not a good thing. I know that when a baby has a heart that is so squished over to the side that it may not be functioning properly, or may not be structurally sound, that too is not a good thing. I know that the doctors who are treating her are brilliant and attentive and are doing all they can to save Anne Marie's life. And I know that there is only so much they can do. I know it would be easy for God to save Anne Marie. To heal her lungs and her heart. To cause her lungs to expand and to heal her hypertension. There has never been any doubt about what God can do. The question is: will He? I continue to ask Him to heal her, to show Himself strong on her behalf. And I continue to ask Him to help me put all my trust in Him and not in doctors or machines, and to trust His sovereign purposes.

Thank You

During these last few months, and particularly this last week, Brandon and I have been overwhelmed with the support we have received from family and friends.

We have received countless calls, texts, and messages from people saying they are praying for us and for Anne Marie. We have had our family here in Dallas helping with the kids and being with us. We have had numerous people offer to help in any way they can. Even now our kids are back in Oklahoma City staying with and being cared for by friends who we know will treat them as their own. One day a few weeks ago when I was feeling really homesick, a package arrived filled with gifts and cards and all sorts of goodies from friends in our neighborhood. On the day Anne Marie was born, none other than our senior pastor showed up at the hospital, and today our friend and associate pastor came to visit and brought us a care package (photos below) from our church family. When we got home from a long day at the hospital, we sat down on the floor opening cards filled with prayers and notes from friends we miss. It was also filled with gift cards, treats, baby and mommy gifts, books and magazines, and more.

Again, we are just overwhelmed by the support we have had and we can't thank everyone enough. Mostly, we are grateful for your prayers for Anne Marie.

I Want to Hold Your Hand

Steady as She Goes

Before we came to Dallas there were some things I worried about: Would we be able to manage school? Would we have packed everything we need? How will the kids adjust? Will we have to be here for Christmas? I still think about how the kids are adjusting, but the other stuff just doesn't seem to matter. We could be here until next Christmas and that would be fine. It's funny how the things that may have been important just a few days ago really aren't important at all right now.

A few days before Anne Marie was born our computer hard drive was erased. All of my lesson plans I had prepared this summer are gone. It's going to take some effort to retrieve my Quicken accounts (if I can at all). At the time I was a little irritated, but now it's just not a big deal. Not that those things aren't important, but in the perspective of where we are now they are just small details. And then there are the petty things that I'm ashamed to admit might have bothered me before. Somehow in the rush of leaving town I didn't exactly pack the right things so I've pretty much been wearing the same thing over and over. Sunday morning I realized I didn't have the right church shoes so I ended up wearing old flip flops. Last night the kids and I had to run to Target to get a few things and the checkout lady said, "I see you have another one on the way." The poor girl felt terrible when I told her I had already had the baby; Jack Henry stood there smirking because he thought it was hilarious. These things might have bothered me at one time, but now I don't give them a second thought. The list of things I once thought were important has suddenly been whittled down to just a few.

As for Anne Marie, the doctor told us this morning that she is still very ill but that he is pleased with her progress so far. She is still stable on ECMO and the doctors aren't doing anything to "rock the boat" right now. At this stage of ECMO, one concern is fluid build-up. Sometimes these babies aren't able to get rid of the amount of fluid coming in and they can get quite puffy and swollen. This can also be hard on their kidneys. If this happens they are given some medicine to help with urine output to get rid of all this extra fluid. If the medicine doesn't work the doctors then decide to do something like a dialysis procedure to help. So far the medicine Anne Marie has been taking has been working and her urine output has been great. The doctor said that it wasn't uncommon to have to do the dialysis procedure, but that it is just "one more thing" they would rather not deal with if they don't have to. So we are very happy the medicine is working; please pray that she will continue to have good urine output so she can eliminate the extra fluid on her own.

Looking ahead: Surgeons don't want to operate when the baby has extra fluid, so the doctors will continue to monitor fluid and also hope to get her pulmonary hypertension a little more under control. When these things appear to be at a good place the doctors will start thinking about surgery. They don't have a timetable for this yet. It just depends on how she is doing.

Above is a brief clip of Susie and the baby yesterday. And below are a couple of photos from today. Highlight of the day: Susie placed her index finger in Anne Marie's palm and the baby's fingers curled around it.

No Crying She Makes

Susie and I sincerely thank the many friends who have called, texted, e-mailed, and sent Facebook messages inquiring about our newborn daughter, Anne Marie. We will continue to blog about her here.

She came into this world on Thursday afternoon, October 15, weighing 7 pounds 6 ounces. What was startling to me (only because I hadn't thought it through) was how strangely quiet the event was. Babies normally come into this world wailing. But little Anne Marie no crying she makes. (She has virtually no left lung and only about 15 percent right-lung volume.) She was placed on Susie's tummy where she lay, perfectly silent, for about five seconds before the doctors whisked her away and worked feverishly on her.

She was put on a ventilator, which didn't give her enough help. She was then put on a different ventilator; again, not enough support. So early Friday morning the doctors put her on ECMO, which is pretty much the last tool in their toolbox. Here she is:



ECMO will allow her heart and lungs to rest for a while. The goal is that soon she will be sufficiently stable to allow a pediatric surgeon to go in and rearrange her organs, giving her lungs a chance to grow.

Bottom line? Anne Marie is not out of the woods, but she is dearly loved by the Maker of the forest. We are praying that He will see fit to declare: "I will ... put breath in you, and you shall live, and you shall know that I am the LORD."

Isn't She Lovely?

I can't believe what God has done
Through us He's given life to one.

—Stevie Wonder, "Isn't She Lovely"

Tyler Teague, 1992-2009

More than 1,200 people attended the funeral today for one sweet kid, my nephew Tyler Teague (pictured above at right).

Signature in the Cell

Stephen C. Meyer (pictured here during his eventful visit to the Sooner State last month) has written a new book called Signature in the Cell: DNA and the Evidence for Intelligent Design. Reviewer Dan Peterson writes: "When I learned that Dr. Stephen Meyer had written a new book on the evidence of design displayed in living cells, I expected to be impressed by it. I wasn't prepared to have my mind blown — which is what happened."

No Need to Be Alarmed