Slow and steady progress

Today, AnnaSophia awoke bright eyed and smiling. I just knew it was going to be a good day. Unfortunately, she woke up in the lab at Children's Hospital to draw her blood to check her anti-rejection med levels. She cried so hard, and I felt bad that she has to get poked so often. The amazing thing is that as soon as the tech was finished, I sat her up, and with tears still streaming down her precious little face, she started smiling again. This was a good sign, and we should have breezed through the rest of clinic.

AnnaSophia smiled at everyone. She smiled at the people at the coffee shop, the people in the elevator, and the people in the hallway. As soon as we walked into clinic, the smiling stopped and the protesting began. It's amazing to see a baby's cognitive development grow before your very eyes. They start to figure things out and connect the dots. She is clearly beginning to understand cause and effect, even in the simplest of ways.

AnnaSophia cried hysterically through her weight, blood pressure, pulse ox, echo and EKG. And to put the frosting on the cake, she threw up her meds. It's amazing how a little baby can get grown adults to act in the silliest of ways in an attempt at coercing cooperation. She is officially 7 months old today, and she has figured out that she doesn't like it when people decked out in scrubs and stethoscopes try to touch her, no matter how silly we act.

The good news about today is that her echo showed some small progress with the rejection. The doctor increased her Cyclosporin (for rejection) and her Verapamil (to thin the wall of the ventricle). The team seems pleased with the slow and steady progress. As long as the rejection is tending toward improving, I am happy. Hopefully, her echo on Monday will show even more progress. Until then, I will continue to trust the Lord as He holds my precious little AnnaSophia in His arms.

Mary

The Lord is my strength and my shield;
My heart trusted in Him, and I am helped;
Therefore my heart greatly rejoices,
And with my song I will praise Him.

Psalm 28:7

Clarification

Some special friends have distributed a news release about AnnaSophia and our family to promote the upcoming fundraisers they organized. We are grateful for their giving hearts, but we're receiving a little media attention and wanted to clarify AnnaSophia's heart condition upon birth.

AnnaSophia was born with an interrupted aortic arch, a bicuspid aortic valve (normal valves are tricuspid), an atrial septal defect and a ventricular septal defect. Septal defects are basically holes in the heart. In AnnaSophia's case, one of these holes was very large. More information on septal defects, or holes in the heart can be found here.

While it's accurate that a couple of her major arteries were "misaligned" due to the interrupted aortic arch, it wasn't the chief reason her heart was in such bad shape after she was born. This has been one of the most misreported facts and is probably my fault, so I wanted to correct the record.

On January 12, 2008, repairs were made to AnnaSophia's interrupted aortic arch and the two holes were patched; a major undertaking since the arch interruption was significant and since one of the holes was so large. The bicuspid valve was not addressed during this surgery. The combination of AnnaSophia's defects was atypical and rare among the general population of cardiac babies.

The migration from AnnaSophia's first open heart surgery in January '08 to congestive heart failure in May/June was complicated, and slow in some ways and incredibly fast in others.

Almost immediately after AnnaSophia's first surgery in January, the doctors were concerned about her bicuspid aortic valve and narrowing in the valve. Initially, doctors felt the narrowing would improve over time, along with her heart function. But, that did not materialize. Instead, the narrowing became worse and a blockage developed underneath the valve, constricting blood flow and damaging her heart function. Various medications were tried, but none made much of a difference.

The seriousness of the congestive heart failure, initially diagnosed in May '08 I believe, did not reach a critical and life-threatening point until early June when AnnaSophia was admitted to Memorial Hospital. Up until that point, the doctors felt her existing heart could be salvaged with more open heart surgery. However, as her heart function deteriorated more and more, it became obvious that she would likely not survive another surgery to her existing heart. The belief is that the faulty valve and, most of all, the blockage underneath the valve had become the chief culprits to the congestive heart failure and the severe dilation of her left ventricle.

So, in about two weeks we went from believing AnnaSophia's existing heart could be saved to knowing she would require a heart transplant to survive. By mid- to late-June, the doctors were recommending the transplant.

Hopefully, that helps clear some things up.

Blessings,
Steve

AnnaSophia: Skilled Remover of Tubing

Days that we don't have clinic scheduled, I really hope that we will be able to avoid the hospital. I can think of many ways that I could fill up our day. But as luck would have it, we are still making many unplanned trips to the hospital--like today. AnnaSophia still has an NG tube for most of her meds, and today, she pulled the whole 24 centimeters out. In just a split second, she snagged a loop and out it came. When I looked at her in horror, she started smiling and cooing. She was clearly very proud of herself. She was the happiest that I have seen her in days.

Unfortunately, her antics sent us back to the hospital to have a new one placed. I thought we were good, and had hoped to spend the rest of the day visiting with Ethan, Emily, Grammy and Paw-Paw. When medication time came, I checked for placement and knew that something was wrong. Back to the hospital we went for an xray, which showed that it was 4 centimeters off target. Later, that day, I had to put it in place, and she was NOT happy with me.

Ultimately, we enjoyed our visit with family, regardless of the detours we took. Hopefully, we can avoid the hospital today, and get some other responsibilities taken care of.

God bless all of our friends and family who continue to keep us in your prayers.

Mary

Monday's echo

Today AnnaSophia had another clinic appointment. I was really hoping for great improvement on her echo since her Prednisone infusions. Unfortunately, her heart didn't improve as much as I had hoped for. The walls of the left ventricle are still very thick. Her pressure gradient had improved from 5 to 4--a slight improvement. I don't know if it just takes time for her heart to improve with rejection. The doctor did think that it was prudent to increase her dose of a drug called Verapamil. Hopefully, this will help thin the walls of her ventricle.

The good news is that she is wetting diapers like crazy and has increased her weight to 13 lbs. 6 oz.! She also is a lot less cranky today. The Prednisone made her really fussy, which was new territory with her, because she is normally such a laid back, happy baby. Today, she started smiling again, and is even trying to sit up. She thinks she is such a hot shot being able to sit up and play with her toys. I pray that she will continue to improve, even if it is a little at a time, each day.

AnnaSophia and I also had a surprise come to us at the Ronald. The Titus 2 Moms from Calvary Chapel Aurora brought us an abundance of groceries. I am utterly overwhelmed with appreciation. Thank you ladies for taking such good care of us. The love of Christ truly shines through these women.

Mary

Special coworkers

I'd say I'm a blessed guy. I often fall well short of what the Lord asks of me, yet He has given me a great family, special friends like Dave R., Mike and Todd (thanks guys for being there for me), an awesome pastor, and a fantastic group of coworkers at Colorado Springs Utilities.

This experience with AnnaSophia has revealed just how special the employees at Springs Utilities are and has given me a new appreciation for their kindness. I often question whether I'm deserving of their kindness, yet it has been poured out to me and my family many times over. I could not have gotten through the last seven months if it was not for their patience and support.

My friends and colleagues -- including John Leavitt, owner of the Powers Blvd. Sport Clips, and Doug Howell of Smoothie King -- kicked off an effort to raise money for AnnaSophia's medical expenses. As part of this effort, they've scheduled some fundraisers during the month of August and have asked that I post the information here (along with a link to a blog dedicated to the effort). Special thanks to Patrice, Janet, Rachel, John, Sport Clips and Smoothie King for coordinating the fundraisers! Also, thanks to my bosses and colleagues in Corporate Communications: Mark, Sherri, Natalie, Eric, Carol, Dave, Natilia and Gabriel. I could not possibly list everything you've done for us on this page; I'd blow up the Blogger server!

I want to emphasize that from my family's point of view we are not expecting or requesting donations. The greatest gift we could ever receive would be for people to be touched by AnnaSophia's story in a way that brings them joy and maybe even a closer relationship to God. Like all of the sick children at Children's Hospital, I believe Jesus gave a special kiss to AnnaSophia before He sent her to us. She radiates His love and grace. No scar, bruise or tube can hide that. There is an awesome message in this and reveals AnnaSophia's purpose.

Anyway, I still feel it is important to recognize our friends' awe-inspiring efforts on behalf of our beautiful little girl. I believe that is what the Lord would want us to do; to honor people who embody the love of Christ.

Here are the events:

• Sunday, Aug. 10 -- Smoothie King, 9275 N. Union (at Briargate Parkway), will donate 30 percent of the day’s proceeds to the fund.
• All Saturdays in August -- Sport Clips, 3736 Bloomington St. (Powers Boulevard and N. Carefree Circle), will donate $5 from each MVP haircut service to the fund.

Blessings,
Steve

Nursing Crash Course

Having a child with a heart defect means learning all kinds of new information that you never thought you would ever need to know. Steve and I first learned how the heart should look, or not look, in AnnaSophia's case. We learned how it should function, and what can happen when it doesn't function well. I have learned how to check placement of an NG (naso-gastric) feeding tube and administer feeds and meds. I have learned how to hook up medication pumps to her pic line. Yesterday, I learned how to flush her IV. Unfortunately, her IV has been causing her a great deal of pain, so the transplant coordinator had me just remove it. I have seen this done a thousand times, so I felt fairly competent. I was able to remove it just fine, and AnnaSophia is so much happier.

This past week, I have been thinking that, in retrospect, having a nursing degree instead of a psychology degree would have been so much more helpful. It's amazing the path that life takes sometimes. If someone would have told me two years ago that I would have been doing all of this stuff for my child, I would never have believed it. I would never have felt prepared or strong enough to handle what we have experience so far. I think that the Lord certainly gives us the strength we need when we need it most.

Mary

Saved by the bell (or ringtone)!

The case of the missing cell phone has been resolved! I decided to pack up and search Children's for my missing cell phone. Feeling tired and beat down, I was taking my time unloading AnnaSophia and all of our stuff, attempting to form a mental plan of where to search. Then, I heard a familiar, old fashioned ringtone. I stuck my head in the middle of the van, trying to place where the sound was coming from. Mind you, I had already searched my van twice, looking under all of the seats and in all of the nook and crannies. Turns out, the cell phone had slid under a seat in a way that I just couldn't see it. I rejoiced, praised God, did a little dance and answered the phone. It was AnnaSophia's Grandpa informing me that they were here to visit.

AnnaSophia is still irritable from the Prednisone, but she enjoyed her visit with Grandma and Grandpa very much. She will receive her last infusion tonight, and hopefully her IV will last till Monday. Monday, she will have another echo done to see if the infusions of Prednisone, IVIG and the Verapamil have helped her left ventricle.

Thank you to all who have been praying for us. When I spoke with Pastor Matt from Calvary Chapel Aurora today, I was telling him that although our circumstances have been hard, I have felt the Lord's favor upon us. I can't explain it other than I have felt Him walking ahead of us all the way. God is so great.

Mary

Frequent flyers

Yesterday, I can definitely say that AnnaSophia and I racked up some frequent flyer miles to Children's Hospital. She had clinic in the morning, which went well, relatively speaking. By late afternoon, I noticed that her IV looked like it was coming out. I took her in again, and the transplant coordinator and some skilled NICU nurses were able to save it. By 8:00pm, her home nurse attempted to start her prednisone infusion, and the line would not flush. We spent last night in the ER to place another line. Thankfully, the nurses in the ER were very skilled with cardiac kid's veins, and we had much success. Thank the Lord!

The bad news is that somewhere between the ER and the Ronald McDonald House, I lost my cell phone. I rely on this phone for not only emergencies and a life line to home, but also as a medication alarm for all of AnnaSophia's meds. She receives meds 10 times in a 24 hour period resulting in 18 doses. Needless to say, this phone keeps me organized and sane. Later, I will embark on the search of a lifetime, and God-willing find my phone.

Mary

Brussel or Brussels Sprouts?

WARNING -- there is no point to this post, so if you're looking for one, your time would be better spent on a good novel. Oh well, it's our blog darn it, and I've decided to take a detour of humor so my children will have a sane daddy. Very likely, however, this will be my last post ever. Mary will wrestle control away from me for my own safety.

For those of you who have taken the time to read my long update from today will get this. For others, this won't make a hill of beans, or sprouts, sense.

I've learned through a Google search that apparently most people say, "brussels sprouts." I apologize to all fans of the brussels sprout. Not that it matters. Why not call them "a food delivered by parents with a twisted sense of humor" or "yuck sprouts?" It's one of those foods that even ultra fried batter or chocolate could not save. Heck, I don't think my parents ever actually ate the brussels sprouts, but instead ran in the kitchen after dinner and laughed their behinds off at what they had just done to their children.

All of this reminds me that one of the meds AnnaSophia isn't crazy about tastes like banana pudding. It's really, really good. If it weren't for the side effects, I'd have some now. Sure beats brussels sprouts.

Steve

Small rooms

With age and seeing what AnnaSophia has been through, I've certainly become more patient with being shut up in a small room. But, to be honest, today's visit to the Children's Hospital reminded me of childhood when my mom would drag me into a department store's window covering or clothing area for hours and hours. I remember rolling on the floor like someone was shooting at me with heavy arms fire, or attempting to give me brussel sprouts.

Today marked AnnaSophia's fourth trip in a row to the cardiac clinic, but the normal two-and-a-half hour visit would have felt like heaven compared to what we experienced today. First, the good news is that AnnaSophia hasn't thrown up in nearly two days. Here's the not-so-good news -- she woke up looking pale and then the IV (for the steroids) became kinked and inoperable. So, that necessitated an immediate visit to clinic at around 8:30 a.m.

Upon arrival, the damaged IV was quickly replaced by an excellent nurse from the neonatal intensive care unit.

Today's echo showed that the thickness of AnnaSophia's left ventricle had not changed from yesterday, so that was actually good news. The perplexing thing is that her blood pressure and heart rate was down, but the EKG and echo conducted today showed no evidence why that was the case. There was some thought that one of the medications started yesterday may have contributed.

After a consultation with the transplant team, the decision was made to give AnnaSophia a 4-6 hour dose of something called IVGIV, or Intravenous Infusion of Immunoglobulins, to help her system stabilize from the dehydration and other issues she has been experiencing. The IVGIV was administered in a very small room in the hospital's cath lab. As always, AnnaSophia was a trooper about the whole thing. And, thanks to a viewing of Spider-Man, lots of sugar, superb nurses and my bad jokes, we made it through the day without me whining too much! And, the best part was there were no brussel sprouts.

AnnaSophia is doing fair at the moment -- although very irritable from the steroids. She is currently getting her second dose of the steroids for the day, courtesy of her home health care nurse. She receives two doses of the steroids each day via her IV. The hope is AnnaSophia will be done with the steroids by Sunday.

I plan on heading back home tomorrow after clinic, so please pray for Mary and AnnaSophia while I'm gone. Pray that they would be safe and be surrounded by friends while I'm taking care of Ethan and Emily, and returning to my job.

Speaking of friends, we made a new one today, a wonderful nurse who put up with my bad jokes and gave Mary someone intelligent to talk with. She gave us the following passage from Isaiah:

Isaiah 40:28-31 (NIV)

28 Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.

29 He gives strength to the weary and increases the power of the weak.

30 Even youths grow tired and weary, and young men stumble and fall;

31 but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint

Isn't that a great passage and an even greater gift from our nurse? God has delivered so many awesome people to us. We are humbled by how God has given us so many friends (new and old) who know and love Him.

Steve

Update -- NG tube, living arrangements request

During today's clinic appointment, AnnaSophia's transplant coordinator elected to insert an NG/feeding tube to ease AnnaSophia's vomiting and to help combat the dehydration while she's on the steroids. So, thanks to the tube, we only have to give two of AnnaSophia's medicines by mouth; the rest can be fed through the tube.

The good news is the doctors feel fairly confident that the steroids can knock out this blockage after about 4 days, but ultimately, this is in the Lord's hands.

At today's clinic visit we met another very nice couple -- Will and Mary -- who have gone through similar struggles with their 9-month old daughter. It was great to share stories with them and reassuring since their daughter also experienced a similar type of rejection to her new heart.

This post does come with a very important request. As many of you know, the Ronald McDonald House will not allow all three children to stay here. With the school season approaching, we need to figure out alternate living arrangements for Mary and the kids here in Denver/Aurora. Homeschooling for the children will need to start soon. We've exhausted all of our other options in Ronald McDonald House-type facilities, so we're concerned about what to do next.

We're looking for someone who would be willing to offer a self-contained, clean condo or studio apartment that is not in use and is located in a safe neighborhood. Cleanliness is very important since AnnaSophia's immune system is being systematically wiped out by the drugs she is on. We could possibly afford to pay a monthly rent, but it could not be more than what we're paying at the Ronald McDonald House. This would be full-time for a duration of between three and six months. Mary, AnnaSophia, Ethan and Emily would primarily live there, with me visiting on the weekends. The location of the condo/apartment would have to be within a 45 minute drive of Children's Hospital. I realize this is a hefty request, but I figured it was worth a try to put it out there.

The other option we're looking at is buying a full-featured RV with shower, kitchenette, fridge, etc. and seeing if we could hook it up at Children's Hospital. We had heard that this might be possible, but are awaiting a return call from the hospital's social worker. An RV monthly payment would equal what we'd otherwise be required to pay at the Ronald McDonald House or Brent's Place.

Blessings, and thanks for all of your continued support,
Steve and Mary

Rejection

AnnaSophia is experiencing a form of rejection. The walls of the left ventricle have become very thick, causing the heart not to pump well. This has produced a blockage near the aortic valve. The transplant coordinator and doctors feel her vomiting is caused by the heart function issues.

So, we're at clinic again this morning. The doctors have inserted an IV line to increase AnnaSophia's fluids and to inject four days worth of steroids into her to hopefully ease the thickening. In addition to the IV-delivered steroids, another oral medication will be added to the mix to help reduce the thickening. The theory is that improved heart function will reduce the nausea and vomiting.

Please pray that AnnaSophia holds down her meds, that the IV lasts all four days, that she doesn't have adverse affects from the steroids, and most importantly, that the steroids work as intended.

Blessings,
Steve

Tough day - prayers appreciated

The good news is that AnnaSophia was discharged from the hospital early Monday afternoon. We've been at the Ronald McDonald House since then.

AnnaSophia had her first post-transplant clinic appointment first thing this morning, and here's where the bad news starts...

First, AnnaSophia is vomiting her anti-rejection medications again. It's a painful process to get the meds down her, and even more painful to see her get sick after taking them. It is heartbreaking to see her struggle with vomiting after major surgery.

Second, the doctors have been concerned about a blockage in the ventricular septum of AnnaSophia's new heart for several days, but thought it would improve with time. Well, I guess a combination of the vomiting and some dehydration has made the blockage worse. This was just sickening news for us. If the blockage does not improve, the transplant team wants to start her immediately on steroids and another medication; on top of all the other meds she's taking! Please pray that the Lord heals this blockage and that AnnaSophia can avoid taking more medication, especially the steroids.

I think AnnaSophia was holding down her medications better a couple of days ago because she was on an anti-nausea drug. The doctors did not want to keep her on this drug because they don't want to artificially mask a cardiac problem. That's unfortunate, because the anti-nausea med was helping a great deal.

The bottom line is AnnaSophia must get hydrated and she must keep her anti-rejection meds down. The doctors are concerned enough about the blockage that they want to see her again tomorrow morning to conduct more blood tests and another EKG and echo.

Finally, I have to go back to work this week, which means Mary loses some help. Please pray that Mary welcomes and receives some much-needed assistance while I'm at work. A requirement for even more meds or hospital visits would be extremely stressful. It would certainly give me some peace of mind while I transition back to work if I know there is someone checking in on Mary daily.

Blessings,
Steve

Ethan and Emily

Through all of the trials and celebrations involving AnnaSophia, it's important to us that her wonderful brother and sister are never overlooked. We love them SO much and are very proud of the way they've handled everything! Yesterday, they came to visit us with Aunt Torry, and Grammy and Paw Paw.

Here are a couple of pictures we took of Ethan and Emily with AnnaSophia:

Holding down meds!

We are so thankful that AnnaSophia has not thrown up in the last day and a half. Meds are no fun, but at least she is not vomiting them up. She starts the day with seven medications at 8am and six at 8pm. She then has several more in between. All of these help ward off rejection and increase heart function.

AnnaSophia has also been weaned off of oxygen. Praise God! She is amazing! She does not act like a child who had open heart surgery, let alone a heart transplant 9 days ago. She does not even seem to be in pain. Honestly, cutting a tooth seems to bother her more than post surgery pain.

The transplant coordinator is planning on discharging AnnaSophia tomorrow. She will be followed in clinic twice a week for the next three months. Because we cannot leave Denver during that period of time, we will continue to live at the Ronald McDonald House until different arrangements can be made. Our biggest challenge will be finding living arragements where I can homeschool Ethan and Emily together.

When I look ahead, it seems like a really long time, but I have learned to take things one step at a time. It is hard to believe that one month has already passed up here. I know that the Lord will take care of us. He has been faithful to do so thus far. God is so good!

Mary

"Therefore do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For after all these things the Gentiles seek. For your heavenly Father knows that you need all these things. But seek ye first the kingdom of God and His righteousness, and all these things shall be added to you. Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble."

Matthew 6:31-34

On the 9th floor

We moved to the 9th floor yesterday (7/18) around 5 p.m. Praise God! We can hardly believe that one week ago today, she had undergone a heart transplant. On Thursday, AnnaSophia had her pacer wires and her last two arterial lines removed. The only line left in is her pic line.

Her oxygen has been reduced to less than a quarter of a liter, and the doctors and nurses think that she may be able to come off of this soon as well. We are so thankful to the Lord for how quickly she is healing. She is truly a little miracle.

AnnaSophia is still periodically throwing up with her medications. Thankfully, her blood pressure has been stable enough to stop her pressure medication, but she is still on quite a lot of meds, sometimes five at one time. Then, there's the cost of the anti-rejection medications -- about $380 total! Yikes.

Steve and Mary

More doctors to thank

Here are a few more great doctors I failed to mention in my last post -- Dr. Kaufmann, who performed the chest compressions on AnnaSophia during her cardiac arrest, Dr. Rausch, Dr. Da Cruz, Dr. Sticka, Dr. McCanta, Dr. Mitchell and Dr. Stoica.

All of the staff mentioned in this post and my earlier post have been wonderful to us and very down-to-earth. They really care about the children here and that is nice to see. Our daughter has been blessed to be cared for by these talented doctors and nurses.

Steve

Doing better

AnnaSophia had a better day, but the key has been managing her nausea with medication. So far, she's held down her anti-rejection and blood pressure medications, but not without a lot of work. We have to give her the anti-rejection meds very slowly.

AnnaSophia's new heart seems to be performing as expected for a little less than a week since transplant. Her heart rate while sleeping is a little low -- about 88 bpm -- but the doctors expect that to improve the more flexible her new heart becomes.

We heard today that the donor family has written us a letter, and we are anxious to read it and to get to know them a little bit. They are always on our hearts and we pray for them regularly. What a gift they have given our AnnaSophia. I can't imagine the grief they are experiencing, but we want them to know how grateful we are and that a part of their beautiful child is living on in our daughter.

Steve and Mary

AnnaSophia's surgical and transplant team

We wanted to take a moment and express our appreciation for being blessed with an amazing team of surgeons, surgical staff, transplant specialists and nurses here at Children's Hospital in Aurora, Colorado. They have all been instrumental in our daughter's care, and for that, we are very grateful.

We felt so fortunate that Dr. David Campbell, the phenomenal surgeon who performed AnnaSophia's first surgery in January, was available to conduct her heart transplant Friday morning. We appreciate him so much, along with the other doctors who have been involved in her transplant care like Dr. Goldberg, Dr. Miyamoto, Dr. Nydam, Dr. Younoszai, and Dr. Ibrahim -- all incredibly capable, smart and approachable. Special thanks to nurse Melanie as well for visiting us regularly during surgery to update us.

Our transplant coordinator, Jilayne, has been great to work with, as well as the rest of the transplant coordination team. Also, Dee Dee, Carrie and Allison have spent a lot of time with us in the past week through some difficult times, and it is much appreciated. By the way, Happy Birthday Jilayne!

To our friends in the intensive care unit and 9th floor, you all are incredible (apologies in advance for mispellings) -- Kim, Katie A., Stephanie, the two Jessicas, Kellie, Kelly, Heather, Clay, Lindsey, Colleen, Amy, Kalie, Beth Rose, and Tammy.

Please forgive us in advance for forgetting anyone we have inadvertently missed who was instrumental in AnnaSophia's care and in saving AnnaSophia's life during her cardiac arrest on Friday.

Steve and Mary

Mommy needs sleep, baby needs a better tummy

AnnaSophia is still vomiting periodically and we're not sure why. It's not always tied to the anti-rejection medications. The nurses and doctors will discuss the situation today and try to figure out a solution. She's also retaining some fluid, so that remains an issue as well. Please pray for healing and for wisdom for the doctors.

The good news is the doctors plan to remove her last arterial line and pacer wires today. We just need AnnaSophia's stomach and fluid issues to go away for her to be able to move to the 9th floor.

Also, pray that Mary gets some much needed sleep! She has barely gotten sleep since we've been here for AnnaSophia's surgery.

Steve and Mary

Today's update -- all about mom

Mom, mom, mom -- it's all about the mom. AnnaSophia really wants her mommy; daddy just ain't cutting it today. As one of the nurses said, "it's all about who has the breasts." That's O.K., I wouldn't look good with those anyway.

Overall, I'd say AnnaSophia is having a better day, but has still vomited a couple of times and isn't pooping like she should be. Also, her blood pressure still seems to run too high off the pressure medication.

The best news is we've seen the trademark AnnaSophia smile return! So, there is definitely progress being made, but it's slow with a few hiccups along the way.

Steve and Mary

Two pretty ladies

Yet another blurry picture (bloody camera!), but I had to post this one I took earlier today:

Throwing up is the BIG YUCK! -- need prayers!

Things were humming along pretty well, until about 8 p.m. tonight. AnnaSophia started getting fussy and then threw up her anti-rejection medication along with a stomach full of milk -- not good. She must get the anti-rejection medicine, so please pray that her system tolerates it tonight on the next attempt.

Steve

A special pastor, a sweet lady and two awesome churches

A tremendous lesson I have learned through our experience with AnnaSophia is that the Lord takes a time of despair and provides hope by putting incredible people in your life when you need them the most. One such person is Pastor Pat Jeffrey of Grace Community Church, our new church home in Peyton, Colorado.

Pastor Pat embodies everything a pastor should be -- faithful to God's word both at and away from the pulpit, available, approachable and authentic. We are so thankful that the Lord has placed this man in our lives. I consider Pastor Pat to be a mentor to me in my walk with the Lord.

Pastor Pat prayed for AnnaSophia before he even met us, and has been there for us through every struggle we've encountered recently. As soon as we found out AnnaSophia was getting a heart, he drove to Denver in the middle of the night to be there for us. The Holy Spirit shines brightly through Pastor Pat and the people at Grace Community.

We'd also like to thank Jim and Lucille McLeran, our prayer warriors from Colorado Springs and Mountain Springs Church. Lucille is the sweetest person you could ever meet and Christ's love radiates from her. And, Jim has been right there with her, praying for our family.

While we consider Grace Community our home church, we also must express our appreciation to the wonderful people at Calvary Chapel Aurora. Mary attended only one service with Emily and AnnaSophia, yet were immediately embraced by Pastor Ed and Pastor Matt, and the Titus 2 women like Jewel, Lori, Julie, Barbara and several others. We feel so blessed to be surrounded by such awesome people. We are humbled by how they've welcomed our family into their hearts and prayers.

Blessings,
Steve and Mary

AnnaSophia, our little warrior

We continue to be amazed at AnnaSophia's determination. She continues to make progress little by little.

The staff is working hard to get her completely off of the morphine and other narcotics for pain management. So far, it seems to be helping AnnaSophia's alertness and overall disposition to be off of the heavy pain drugs. Right now, she's just on Tylenol; woohoo!

The only setback she is having right now is a build up of fluid around one of her lungs. There's a fancy name for this -- plueral effusion -- but only Mary, aka Dr. Fluff 'n' Puff, knows what that means. My wife, while possessing many qualities, likes fancy words. If the Lasix medication does not flush AnnaSophia's body of the excess fluid, the doctors will have to reinsert a drainage tube into her abdomen tomorrow. We're obviously praying this will not be necessary, as the procedure involves sedation.

Steve

Baby steps

AnnaSophia is making progress with little, tiny baby steps. The nurses attempted to wean her off of more meds yesterday. They were able to stop the Isoprel, which helps heart function, but she needed to stay on her Nicardipine for her blood pressure. She now has seven pumps running instead of 15. Yeah!!

She has also been very swollen since surgery, and when I woke up this morning, she had lost a tremendous amount of fluid through wetting diapers through the night. Yeah!!

AnnaSophia has also attempted nursing. She nursed really well late last night, but when she tried again in the wee hours of the morning, she started vomiting. We will continue to try, as nursing provides comfort and nourishment.

Sovereign father God, we thank you for your amazing mercy for our little AnnaSophia. We thank you for your miracles that you have done through her. We pray for your continued tender mercy and healing for her. We know Lord that you hold her in your hands, and that you have a plan for her. We thank you for taking care of us daily, and surrounding us with your comfort and love through the people you have put in our lives. We are in awe of your love for us, Lord, and we pray that others will come to know you more through our little missionary, AnnaSophia. We pray this all through the mighty and holy name of our Lord and Savior, Jesus Christ.

Monday morning and pain management

AnnaSophia had a restless night, due to pain management issues. There is a delicate balance in weaning her off of her medications. If you wean her off of her pain meds too quickly, she experiences a lot of pain, if too slowly, she is too drugged to progress in her recovery. Last night and today, she is clearly having a lot of pain, and her nurses are working diligently to try to find the right balance.

They moved us down the hall today to get us closer to the nurse's station, so AnnaSophia has a new view at least. The nurses are currently removing an arterial line that was in her neck. We're hoping that will help make her more comfortable.

The latest news is I got a chance to hold her for a while, and then Mary got an opportunity right after me. We're very excited about this development. It was great holding her again.

Steve and Mary

Making progress, but not without challenges

AnnaSophia had a better day today and made some significant progress. She no longer has the breathing tube or the NG tube, and all drainage tubes have been removed. She also had her first sponge bath since the surgery, and even drank some glucose water and a little milk.

With all of the progress, however, came challenges. First, she's far from "out of the woods" at this point. Second, managing AnnaSophia's medications and pain levels has been a trying exercise for the staff. She is extremely sensitive to the slightest adjustment to medications, whether it's her o2 levels or blood pressure. Additionally, the more awake she becomes, the more she is freightened and upset. We're doing everything we can to comfort her as parents. We've even figured out a way to lay our heads next to AnnaSophia when she's in her crib to offer her some comfort and lots of kisses.

We also think AnnaSophia is suffering from quite a bit of gastrointestinal discomfort, so a good poop (sorry, we've got to mention the "p" word) would do her some good.

Please pray for a quiet night and a productive and safe day tomorrow. Also, pray that Mary's milk supply doesn't dry up, but instead becomes plentiful so AnnaSophia can get the nourishment she will so desparately need. Mary is extremely concerned about this at the moment.

We want everyone to know how blessed we feel as a family. To still have AnnaSophia with us is the most awesome blessing and gift we could have ever asked for. As her father, AnnaSophia has touched the very core of my being. I feel a connection with her I cannot explain, but I know she is touched by the Holy Spirit. When I thought we would lose her on Friday, the devastation I felt was the most intense ever. I thank the Lord several times each day for her life.

So many of you have prayed faithfully for AnnaSophia and our family; truly the greatest thing anyone could do for us. God is not only listening to your many prayers, but he is working miracle after miracle in AnnaSophia. For that, we are forever thankful to you -- our friends and family. We are overjoyed that our daughter's life has touched so many wonderful people.

Blessings,
Steve and Mary

Plugging along

AnnaSophia was still battling hypertension this morning. Her blood pressure was up to 165/96 and her heart rate was 200. After adjusting her meds, she is finally stabilized at 90/56 and 156 h.r. Steve and I have been praying so hard over her today, because the doctors plan on weaning her off of more things. They still do not know what caused her to arrest the other day. Not knowing is really hard, because if they knew, they could avoid it in the future.

The doctors did rounds today, and removed her last chest tube. She tolerated it well, and is becoming more alert. She is also breathing over the ventilator, and her chest xray looked good. The plan is to take her off of the ventilator very soon. Transplant likes to move quickly to remove tubes and wires so as not to introduce infection. Because they do not have her Swan line in to measure pulmonary pressures, they will keep her on her nitric oxide.

We pray that she will remain stable through today and tolerate her procedures well. We pray that the Holy Spirit will continue to have a sustained and mighty presence in this hospital and her room.

Steve

Pretty in pink

All has been relatively quiet the last few hours. Mary took this picture a few minutes ago after nurse Kim changed her dressings:

Photos from a few minutes ago

Here are three pictures from about 10 minutes ago. Our apologies for the blurry nature of the photos; we're hoping to get a better camera soon:

Resting comfortably...rosy lips are good to see


Lots of meds and pumps (15 or so):


Even more machines for breathing tube and nitric oxide (nitric oxide was added yesterday):

Successful procedure

The doctors and nurses successfully removed two of AnnaSophia's chest tubes. She tolerated the procedure well and seemed comfortable. Kim, our nurse, just started a vaso-dialater to help lower AnnaSophia's blood pressure a bit. She was running as high as 145/96. Dr. Campbell seems to think that blood pressure that is a little high for her is better than a low pressure, especially after yesterday's scare. The respiratory therapist has been able to wean our little angel down a bit on her nitric oxide and her ventilator. Everyone is progressing slowly and carefully with AnnaSophia, as she is very fragile right now.

Steve and I don't take anything for granted, and the CICU is a scary place to be sometimes. Two babies have passed away in two days here. I have cried for the families' losses, and I pray for the Lord to provide His divine comfort for these families. It is just a reminder of how critical these children are here. I pray for the Lord's comfort and blessings over the other families and their sick children. I pray that the presence of the Holy Spirit will be overwhelmingly felt among all in the CICU.

Blessings,

Mary

Managing pain, medications and blood pressure

The last several hours have been focused on managing AnnaSophia's pain, medications and blood pressure. From the first surgery to this one, we've realized it's an extremely delicate balancing act for the doctors and nurses.

AnnaSophia is becoming more aware of her pain, so the doctors and nurses have been trying her on a continual low dosage of pain medications, including morphine. It can be scary when she's moving around with all of the tubes and wires coming out of her, so it's everyone's preference that she stay sedated right now.

AnnaSophia's blood pressure has been running higher last night and this morning, so the doctor is attempting to manage some of her other medications (she's on several, up to 10) to bring it down. Also, her heart rate is in the 160 range off of the pacemaker; ideally it should be much lower than that. Again, this could be a matter of lowering certain medications.

As far as when her breating tube could be removed, well, that's up to AnnaSophia. We obviously hope and pray this happens soon, because that would mean she's doing much better.

Mary was able to get a little sleep last night, but chose to stay in the cardiac intensive care unit with AnnaSophia. I slept in our "sleep room," so I was able to get a bit more rest -- aside from the spring that was sticking in my back all night! Other than that, we're hanging in there. The Lord gives us strength. Speaking of which, I'm amazed at how strong Mary has been on such little sleep. Please lift her up in your prayers, along with AnnaSophia.

Finally, keep my parents -- Grammy and Paw Paw -- in your prayers as well. If it weren't for them and their help with Ethan and Emily, I'm not sure what we'd do. My mom is running on fumes right now.

Blessings,
Steve

A big scare

AnnaSophia was doing great since surgery, but things can change quickly. She just recently went into cardiac arrest, while Steve and I were with her. The nurses and doctors worked quickly administering CPR and were able to restore a regular rhythm. It was one of the scariest days in our lives yet. I thank the Lord that He is holding her in his hands and has given the medical team abundant wisdom. No words can explain what it was like seeing her arrest. It felt as though my heart was being ripped out at the same time hers was arresting.

Dr. Campbell put a new arterial line in to monitor her blood pressure. The doctors are currently doing an EKG and echo to check her rhythm and function. As best we can tell, her function looks moderate and there is no fluid around the heart. They will continue to investigate this situation, looking for a cause. One possibility is that her pressure built up in her pulmonary arteries, and she had a difficult time recovering.

We pray for the Lord to continue to work miracles in her recovery. Please pray that she will not have any more severe setbacks in her recovery. This is a reminder to Steve and I how quickly things can change here.

Mary

Post-surgery pictures

Here are some post-surgery pictures of our little angel and the various machines, monitors, tubes and wires she's hooked up to. All things considered, she is doing pretty well and the nurses are saying she looks good. Obviously, the next 24-48 hours are extremely critical.




At least 9 medication pumps (I accidentally cut off a couple)


All of the stuff (O2, heart rate, underlying heart rate, respiration, etc.) they monitor

Praise the Lord!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Praise the Lord!

Praise God in His sanctuary;
Praise Him in His mighty firmament!

Praise Him for His mighty acts;
Praise him according to His excellent greatness!

Praise Him with the sound of the trumpet;
Praise Him with the lute and harp!
Praise Him with the timbrel and dance;
Praise Him with stringed instruments and flutes!
Praise Him with loud cymbals;
Praise Him with clashing cymbals!

Let everything that has breath praise the Lord.

Praise the Lord!

Psalm 150

Lord we thank you and praise you for your mercy and abundant love toward our little gift AnnaSophia. Thank you for holding her in Your almighty and powerful hand. You are so good, and all the praise, glory and honor go to You.

AnnaSophia in a period of 30 minutes came off of bypass, had her chest closed and the bleeding stopped. We are currently waiting for the surgeon to come and talk to us, but the transplant coordinator said that everything is going well. The reality is that she has a hard few days ahead of her. The doctors said to expect that she will be very sick for a few days, but she now has a chance for life. Praise God!

One of the cardiologists said that he is not a religious man, but he said that he believes that something divine certainly has occurred here. He said that Steve and I must have a direct line to the Lord. We know that the Lord clearly has plans for AnnaSophia, and her testimony to the goodness and presence of the Lord is loud and clear. Even unbelievers realize that the Lord is doing mighty things here.

To God be all the glory!

Mary and Steve

Her new heart

Praise God, AnnaSophia's new heart is in! She is still on bypass, but the heart is beating with the help of a pacer. Sometimes, the new hearts are a little slow to wake up, as is the case with AnnaSophia's miracle heart. We pray that the heart will continue to beat and pace itself. We also pray that she will be able to come off of bypass and that her heart and body will tolerate it well. Another prayer need is for her bleeding to be well controlled. AnnaSophia was on aspirin therapy to guard against blod clots in her left ventricle. As a result, she bleeds very easily, and sometimes that can be a complication following surgery.

Thank you to all of your dear prayers for our little girl. In the words of Kimberly Woodhouse, "God is so cool!".

Mary and Steve

Some pictures

Just prior to surgery:


AnnaSophia's sick little heart about 10 minutes after removal:


This is the AnnaSophia we love SO much:

Heart arrives at 4:25 a.m.

AnnaSophia's new heart has arrived! One image that will forever be burned into my mind is of something so precious -- her new heart -- being carried in a simple red and white Igloo cooler. I can't describe in words what that's like. God delivers us stupendously awesome gifts in the most unlikely of ways, doesn't He? Hasn't that always been true?

Steve

Surgery update -- first hurdle overcome

AnnaSophia was taken back for surgery at approximately 1:45 a.m. All arterial lines are in and her chest is open. The surgical team is now preparing her for a transplant.

So far, AnnaSophia's vital signs are stable, which is excellent news. As of about 4 a.m., her new heart has not arrived. We're told it's about an hour away. The heart is transported here by plane and then an ambulance takes it from the airport to Children's Hospital.

The doctors are unable to give us any information about where the heart came from, but we're praying that the donor family finds comfort and peace in the Lord amidst their grief. We want them to know that we are forever grateful for this gift. We do not know what the future holds, but we're honored that our little girl is being given a chance to live and fight on.

Steve and Mary

A heart for AnnaSophia!

God is awesome! We are in awe. Mary received a call at 7:40 p.m. with the amazing news that the transplant team had a heart for AnnaSophia. It is now 11:38 p.m. and we're waiting for the surgeon. She is due for surgery any time now. Surgery duration is between five and eight hours. At this time, we still do not know if it is a traditional transplant, an ABO incompatible, or DCD transplant.

Our first prayer is that there are no issues with the donor heart. Although it is rare, it is still possible that the donor heart would not be suitable.

Our second prayer is that the Lord would provide comfort to the family of the donor child and that He would shower them with many blessings. I pray that the child is with the Lord sharing in the joy of His almighty kingdom.

Finally, we pray that our precious little girl survives the surgery, that there are no major complications during surgery and that her body does not reject her new heart. We pray that the Lord would guide the surgeon's hands and fill that operating room with His Holy Spirit.

We are so thankful for everyone's prayers. For anyone who still doubts that the Lord does not hear prayers, our hope is that our AnnaSophia is a testimony to the Lord's goodness and majesty when we have faith and surrender everything to Him.

Blessings,
Steve and Mary

It's official

Today, Steve and I met with Dr. Pietra, the cardiologist in charge of the transplant team. He wanted to be able to do everything possible to help AnnaSophia get a heart as quickly as possible. We just recently realized that she has pulmonary hypertension as a result of the congestive heart failure. Hopefully, this is reversible with a new heart. AnnaSophia's reactive antibody panel was a zero, which is really very good. Her ISO hemoglutin for A blood type was a 2 and for B blood type was a zero. This is great news in that she will be able to accept a heart from a different blood type donor. Denver has done 3 or 4 of these transplants, and so far, all have been successful. The other type of transplant, a DCD, is still considered experimental. If AnnaSophia received this type of heart, she would be only the second of this type of transplant to be done at Denver Children's. AnnaSophia cannot withstand a long wait for a heart, so today she was officially listed with UNOS (United Network for Organ Sharing) for these other transplant options along with a traditional transplant.



At this point, if AnnaSophia went into cardiac arrest, there is not much the doctors could do to save her. As Dr. Pietra said, it would be futile. As these other options can be scarier than a traditional transplant, it is a far scarier thought to lose her. This way, we know that we have done everything possible as parents to offer her life. The rest is in the Lord's hands.

Mary

Opening up our options

I was really hoping that when I brought AnnaSophia to the ER the other day that the doctors would tell me that she was ok. I was hoping that I was just being an overprotective mom, and that we could just go home that morning. The plan is now to keep her a few more days.

Tonight, AnnaSophia will be getting a naso-gastric feeding tube put in to increase her caloric intake. We are still waiting for the results of the EKG and echo done today. Our transplant coordinator spoke with the surgeon regarding our girl, and the consensus was to consider her for other transplant options like a DCD or an ABO transplant. The DCD is a donor of cardiac death heart. This option means that the heart has gone without oxygen for a longer period of time than a traditional transplant. An ABO transplant means that they will transplant a heart from a different blood type than AnnaSophia (O type). Both of these options carry more risk for our little one, but she may get her transplant sooner.

AnnaSophia's pic line has moved a little and is now in her jugular vein. The transplant coordinator does not want it messed with, as our angel is at risk for sudden cardiac death with sedation. They believe that the Milrinone will not be affected by this.

We pray that the Lord will continue to guard AnnaSophia's life. We pray for a miracle in the gift of a heart for her. We pray that the Lord will give wisdom to the doctors and nurses that oversee her care. Steve and I also thank all of you who have felt led to pray for our little girl.

Mary

Fear not, for I am with you;
Be not dismayed, for I am your God.
I will strengthen you,
Yes, I will help you,
I will uphold you with My
righteous right hand.

Isaiah 41:10

Back in the hospital -- 2nd time in one week

Our apologies for the delay... After our July 1 post, AnnaSophia was admitted to the hospital later that evening. After a couple of days of observation, she was discharged on July 4 once she started eating a little better -- about 10 ounces a day. That's still well below what she should be taking, but good enough for her.

We hoped and prayed that AnnaSophia would be out of the hospital for a while, but an episode very early this morning (7/6) landed her back to Children's. I had driven home Saturday evening with our daughter, so I was not here. We're not sure what happened, but AnnaSophia woke up screaming about 1 a.m. as her O2 levels started to drop. After a gagging episode, her body went limp and she lost all color. Needless to say, Mary was extremely scared and immediately took AnnaSophia to the hospital.

I drove back to Aurora this morning with my parents to help Mary get some rest and support. After several hours of observation, the staff here still does not know what happened to her.

While many questions remain, this episode points to how fragile AnnaSophia's condition is and how quickly we could lose her. The prospects for a new heart for AnnaSophia look dimmer and dimmer with each passing day. We're left only to pray for a miracle. We humbly ask that you join us in this prayer -- that the Lord would work a miracle and deliver a heart before it is too late. I also ask for prayers that Mary is granted some much-needed rest and is surrounded by the Lord's covering and protection.

Steve and Mary

Scary times -- we ask for your prayers

Mary asked me to post tonight's update due to computer issues in Denver and AnnaSophia's condition, which continues to deteriorate.

For the last two days, AnnaSophia has refused to eat. She's hungry, but her heart is not giving her enough energy to eat and her stomach is unable to handle what she does get. She vomited earlier tonight because as the on-call transplant coordinator said, her system is finding a way to compensate. If her condition does not stabilize, Mary will need to bring AnnaSophia to Children's Hospital tonight.

Needless to say, Mary is very concerned and scared, and I feel nearly helpless because I'm not in Denver. Please pray for the Lord to grant Mary and Emily comfort tonight, and that He provides stability and healing to AnnaSophia's little body. Also, we humbly ask for your prayers that our AnnaSophia gets a heart soon.

Blessings,
Steve

Concern for AnnaSophia

Today has been a very hard day. AnnaSophia has not eaten well. I have been keeping a food diary, documenting when she nurses and for how long. She has gone from nursing 10 to 20 minutes to nursing only 3 to 5 minutes at a time. Clearly, she cannot be sustained on this. She has had only a few wet diapers after her Lasix. I have been pumping and attempting to syringe feed her, as she will not take a bottle. After 45 minutes of syringe feeding, she only took an ounce. In this time, she made 4 diarrhea diapers and vomited clearly more than an ounce. I put a page into the transplant coordinator on call. She feels that AnnaSophia is self-regulating by not eating. Her body is not digesting the food she is taking in due to her heart failure. Today, everything has been worse with the heart failure. I am watching her very closely tonight, and we may need to take her to the ER tonight. I hope that she will be able to make it till morning. If she can we will be in clinic first thing in the morning. The will then start testing her. She will require a lot of blood work and possibly another echo.

Please pray that she will make it through the night without complications. We also pray that the Lord will give the doctors wisdom regarding her status and how to manage it. We pray that her little body will be able to take in nourishment, and finally, we pray that a heart will become available for her quickly. Of the four other transplant babies here, she is clearly the sickest. The doctors in the Springs gave her heart two more months to go. The list we are on could take six. We desperately need a miracle.


Mary