AnnaSophia's first cupcake

Happy Birthday AnnaSophia!!!!!!!!!!!!!!!

Today is AnnaSophia's 1st birthday! There were times we never thought that we would see this day come. Having her here with us is the best gift we could have hoped for. We are so thankful for the gift of life that she was given so that she could be on this earth celebrating her 1st birthday with us. It has just been fairly recent that I have stopped mentally planning her funeral and memorial service. Every setback was met with those thoughts that every parent hopes they never have to realize. We thank the Lord that we have been given more time with our precious little girl.

As we celebrate today, we marvel at her little joyful personality. She loves her brother and sister so much, and she thinks that Emily's room is the best place in the entire house. She loves to explore and play with the toys. She loves dogs. She crawls all over the place, and when she sees Squirt (our dog), she turns on her "after burners" and crawls after her at an alarming pace. She loves music and will dance everytime she hears a song. AnnaSophia really loves her daddy. She has a very close connection with him and loves to call him on the phone when he is at work. She loves to give really big, slobbery, baby kisses to everyone she loves. She is truly a blessing in our lives, and her joy is contagious.

Thank you Lord for our little girl. Happy Blessed Birthday, AnnaSophia!

We love you,

Mommy and Daddy

Tuesday Clinic

Ethan, Emily, AnnaSophia and I were once again in the car at 5:30 this morning, making our regular trek to Denver Children's Hospital for clinic today. I am amazed at how well all three children do with such a long day. AnnaSophia is quite the star with her echocardiograms now. She has made up her mind that she will cooperate, and we are all so thankful. She still zooms through her check-in, with her blood pressure, pulse ox, height, weight and temperature. Today, we would have zoomed quicker than ususal, except that she urinated all over me, and gave us all quite a laugh. Normally, I bring an extra change of clothes for her, but it never occured to me to pack extra clothes for myself.

AnnaSophia's cyclosporine levels were perfect again! Praise God! Her echo also looks really good, and there has been no concerns with her aortic arch. Sometime in February, the team will lower her cyclosporine levels some more. This is amazing to me, because I think about how much medication she was initially taking, and it seems like she has come such a long way. Other transplant centers around the nation keep their patients at really high levels of medication, but Denver Children's is unique in that they prefer to keep their patients at the lowest anti-rejection medication levels in the country. They have really great success with their methods, and the patients don't seem to suffer with as many of the side effects of the medications. Our hope is that Mason's heart will continue to beat mighty and strong as long as the Lord wills it. I think that AnnaSophia has a pretty good chance of that while in the care of the amazing team of doctors and nurses as Denver Children's Hospital.

Steve and I continue to keep Dave, Charlotte and Lincoln in our prayers daily. Not a day passes without Steve and I thinking about this beautiful family. We are continually reminded of the amazing gift of life they gave our precious little girl, and we hope that the Lord will continue to surround them with his almighty comfort and peace.

God Bless,

Mary

Merry Christmas!

For unto us a child is born, unto us a son is given: and the government shall be upon his shoulder: and his name shall be called Wonderful, Counsellor, The mighty God, The everlasting Father, The Prince of Peace.

Isaiah 9:6

As we celebrate this Christmas, Steve and I are very thankful for the abundant blessings that have been bestowed upon our family. The greatest gift that we received this year was the gift of life for our little angel, AnnaSophia. Daily we are reminded of Mason's heart that beats so strongly inside of our daughter. As we reflect on the gift that the Hibbert family has given us, we are reminded of the ultimate gift of life that our heavenly Father gave us through His Son Jesus.

How much love our Father has for us that He would give His only Son to suffer so greatly, just so we could have eternal life and relationship with Him! Relationship...that is the key. After this year, we KNOW how present God is in our lives. One of our doctors claimed that he was not a religious man, but he could see plainly that God was involved in AnnaSophia's transplant. What we want him and everyone to know is that God is amazing, awesome, and present in all of our lives...if we let Him be. He is knocking on the door of our hearts, just let Him in and fasten your seatbelt for an adventure in faith!

God Bless and Merry Christmas,

Steve, Mary, Ethan, Emily and AnnaSophia

A tribute to Mason Hibbert -- a very special little boy

This is Mason Hibbert, a precious little boy who is very special to us. Mason donated his heart to AnnaSophia in July and saved her life, along with two other people through organ donation. Mason is now with our Lord in Heaven.

In his short life, Mason had a profound impact on many people -- more than some of us will in a lifetime. And, now his legacy lives on in our baby girl through a strong and mighty heart that beats with passion and determination.

To his wonderful and inspirational parents -- David and Charlotte -- we thank you from the bottom of our hearts. You are amazing parents and we will never forget what you did for our AnnaSophia in a time of great sadness for you both. You, your entire family, and your little angel Mason will forever be in our thoughts and prayers.

May the Lord provide everlasting comfort to you and your family.

With deepest appreciation and many blessings,
Steve, Mary, Ethan, Emily and AnnaSophia Berry

The heart of an angel

AnnaSophia had her last clinic appointment on Tuesday, and as has been custom now, she has done very well. She is now cooperating really well. She loves seeing all of "her people" from the lab to cardiac clinic. Her cyclosporine levels were perfect and her echo is unchanged--all of this is wonderful news.

Today, we received a call from Jilayne, our transplant coordinator, and by the tone of her voice I was immediately scared. Thankfully, everything with AnnaSophia is fine, she was just extremely touched by a letter from our donor family. They had received our letter, and had sent us another one with a few pictures of their son. AnnaSophia's donor's name was Mason. He was the most beautiful child with an amazing smile. As Jilayne read the letter to me over the phone, I was so moved that I could barely breathe. I could not stop crying as I took in the details of his tragic death. There was only a small chance that he would pass in a way that would allow for his parents to donate his heart. His amazing parents prayed that this would be possible, and the Lord answered their prayers. I cannot even fathom the pain and tough decisions that they faced this past July. Through their tragedy, they gave our little girl and two other children priceless gifts. I have always marveled at the strong sound of the new heart beating inside of little AnnaSophia. Now, I listen to Mason's heart and cannot stop the tears as I picture this beautiful child while holding our little girl.

I don't presume to understand the Lord's plans, but I have comfort in knowing that He is sovereign and am grateful that He cares for each one of us so much. The hand of God was clearly seen on both of our sides. We both would love to have more direct contact, and hopefully that can happen soon. The words "Thank you" seem so insufficient in expressing our feelings regarding the gift of life our daughter was given. Even though they are comforted in knowing that Mason is with the Lord, my hope is that they will have peace in knowing that part of him lives on in AnnaSophia. Mason's parents so eloquently closed their letter with the sentiment, "I think it's safe to say that your daughter has the heart of an angel...one that we will always love." I pray that this family will be blessed beyond all measure, and that the Lord will pour His favor and blessings upon them now and forever.

Mary

Positive but not quantifiable

Wednesday, we received the results of AnnaSophia's CMV PCR test. She is positive but not quantifiable. Basically, the test is not sensitive enought to give an exact number under 1000. She is somewhere between 0 and 1000. What transplant will do is watch her closely for symptoms. Because she is asymptomatic now, we were able to finish her last dose of ganciclovir today. Our prayer is that she will not develop symptoms of CMV again. It is possible that she could develop another infection or have chronic CMV, but we pray that she will not have to continually fight this virus.

Blessings,

Mary and Steve

Another cute photo

Clinic moved up

AnnaSophia has been fighting a cold. She has an awful, juicy cough, so I put a call into transplant, and we decided to move her appointment from Wednesday to yesterday. She still amazes me. Even when she is sick, she is the sweetest, most smiley baby. She did so well in clinic, too. She had the best attitude with her echo. One of these days, I need to bring the camera to clinic, because words alone just don't describe this scene. She was given her own transducer to hold during the echo, which she thinks is just the best. She also loves the echo "jelly". She had the "jelly" smeared all over her face, arms and chest. She smeared it all over her transducer, and had both shoved in her mouth as far as she could muster. She decided that the combination is the best thing ever to teeth on.

The good news is that her echo is still unchanged. She still has a thick left ventricle, but time and growth will resolve this. Her cyclosporine levels are still a little high, but we are just going to watch this. Her CMV PCR levels were drawn, and hopefully we will have the results today or tomorrow. Our hope is that she will be able to come off of the antiviral medication.

As far as her cold is concerned, the reality is that "normal" kids catch anywhere between 8 to 10 colds a year. She will get sick, but we walk a fine line with her immune system in that we want her to fight the cold without her immune system attacking her heart. The most important echo will be the one a week or two after she is over her cold to make sure that she is not rejecting.

I thank God that we are here, dealing with colds, and not in Denver waiting for a heart or battling rejection. He has been so good to us, and I am continually humbled by his goodness and mercy. I am no longer planning AnnaSophia's memorial service in my head everytime something goes wrong. I am taking each day and trying to enjoy it for the blessing that it is and the miracle that AnnaSophia's little life is. God is so good.

Blessings,

Mary

Pictures!

Here's a taste of a few photos from yesterday's "adventure:"

Surprise Day

Today was supposed to be photo day, but it turned out to be an exercise in flexibility. We planned this day for two weeks, and spent the previous night getting ready for a visit to a photo studio offering a special deal for holiday photos. When we arrived, the studio was packed with unhappy parents. Every chair was occupied and parents and children were sitting on the floor against the walls. They were running about an hour behind, so we decided to leave.

As a result, the kids had a great day of unexpected fun things to do. We took the children to a favorite restaurant while we decided what to do about pictures. The thought was that we could probably do a decent job all by ourselves, so we gave it a shot. We planned on taking the children to Glen Eyrie Castle, but it was closed to tourists for the weekend.

We then decided to go to Garden of the Gods. We got a couple of great shots of the kids, and they really enjoyed the beauty of this great park. We also took the children to the Pioneer Museum in downtown Colorado Springs. This is a really fabulous museum which was decorated beautifully for Christmas. Ethan and Emily both got a little bag of Pyrite after completing a scavenger hunt, then we were able to get some cute shots of all three of the children. Poor little AnnaSophia was really tired at this point, but she still gave her best for the camera. In addition to being worn out, she also has been battling a cold.

Ethan, Emily and AnnaSophia ended up having a much "funner" day than what we had originally planned. I thank the Lord that they are more adaptable than I am, and all along the way, Steve was cracking jokes. Steve will post some of the pictures to follow this post.

God Bless,

Mary

AnnaSophia's last clinic appointment

Last week was a very busy week and I neglected to post an update regarding her last clinic appointment. Her last appointment went remarkably well. I was really expecting her to give us a very hard time with her echo, but she clearly likes to keep us guessing. She did so well. She was able to play with the extra probes as our echo tech attempted to get the pictures she needed. AnnaSophia was very happy and compliant. When the time came to get the pictures of her aortic arch, we fully expected her to protest. She did. As our tech left the room to get some toys, I played with AnnaSophia and her probe. We pretended to take pictures of my arch, and then her arch. She became more comfortable with me putting the probe up to her neck, but when the tech tried, she cried. Candice (our tech) decided to try something unconventional to get the pictures we needed. She had me maneuver the probe where she needed it, then captured the pictures. It was complete team work, but amazingly, we got the pictures we needed.

The really good news is that her echo is unchanged from the last time. Her cyclosporine levels were still a little high, so her dose of Neoral was lowered. She was doing well enough for us to skip clinic this week, and she will be seen next on December 10th. At her next clinic appointment, her CMV PCR will be checked. We pray that it will be zero so that she may come off of the Ganciclovir. I actually was able to visibly notice that her petichiae is so much better. It is almost completely gone.

I pray that she will continue to improve and get stronger each week. God has been so good to us, and we have been enjoying our time home with her. She continually smiles and "talks" to us. She really loves her daddy, and she has been giving all of us these wonderful, slobbery baby kisses. She is clearly filled with an incredible, infectious joy. Praise God for happy babies!

God Bless,

Mary

Giving Thanks

I have heard the holiday Thanksgiving referred to as Turkey Day. I have heard some refer to its significance as nothing more than a gluttonous feast followed by lots of football watching--not that there is anything wrong with eating lots of good food, or watching a game. I have watched retailers completely gloss over this holiday, rushing from Halloween directly to Christmas. I am saddened that one of my favorite holidays seems to be disappearing.

This Thanksgiving seems to mean so much more to me than in years past. The pilgrims chose the difficult path so that they might have the freedom to worship the Lord according to scripture, without threat of incarceration. After surviving the treacherous trip across the Atlantic, they fell at the throne of our Lord giving Him thanks. They lost over half of their husbands, wives and children that first winter, yet they sought to praise the Lord through their trials. Even when food was rationed down to five kernals of corn per person per day, they never lost faith.

When you think about it, Thanksgiving is really one of the most fundamental Christian holidays. This Thanksgiving, Steve and I are especially moved to be celebrating this holiday with all three of our children. It is very exciting to see AnnaSophia thriving and eating her first Thanksgiving meal at home with us. When we asked Ethan and Emily what they were thankful for, they both replied that they were thankful that AnnaSophia was home, that she wasn't sick anymore and that she was alive. We couldn't agree more. God has been so merciful and given us more time with our baby girl. We have truly been blessed beyond measure, in every way. No matter what the circumstances, we give Him all the praise, glory and honor. God is good, and He is sovereign.

Mary


Psalm 100

A psalm of thanksgiving.

1 Shout with joy to the Lord, all the earth!
2 Worship the Lord with gladness.
Come before him, singing with joy.
3 Acknowledge that the Lord is God!
He made us, and we are his.
We are his people, the sheep of his pasture.
4 Enter his gates with thanksgiving;
go into his courts with praise.
Give thanks to him and praise his name.
5 For the Lord is good.
His unfailing love continues forever,
and his faithfulness continues to each generation.

AnnaSophia's opinion on her echo

AnnaSophia had her clinic appointment today. All was going well until it was time for her echo. This little one had three adults and her brother and sister all trying to entertain her to no avail. We tried toys, puppets and a baby einstein video. Everyone in cardiac clinic knew that AnnaSophia was not cooperating by the intense screams coming from echo room 1. We finally decided to give up after a while. AnnaSophia stopped crying right away, and was concerned that we were blocking her view of baby einstein. She was such a turkey. The good news was that she cooperated with her EKG.

She is weighing in at 15 lbs. 10 oz. and is looking very good. She still has some slight petichiae, but seems to be feeling well. We will recheck her CMV PCR in two weeks. We pray that her PCR will be zero so that she might come off of her ganciclovir. AnnaSophia is settling in at home and seems to be very happy to have the entire family together. She is crawling everywhere and attempting to pull up into a standing position.

I have been surprised by some of the conflicting emotions that I have felt since being home. On the one hand, it is so nice to be home and together as a family, especially with AnnaSophia, our little miracle girl. On the other hand, it is almost scary to be so far from the hospital. Home seems so "normal", but AnnaSophia's life has been anything but normal. I am so thankful that the Lord has given us more time with our precious little angel, but part of me can't help but feeling like I am waiting for the other shoe to drop. I am hoping that this feeling will eventually subside as she gets better and time passes. I thank the Lord that He is so good and ultimately in control.

Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths.

Proverbs 3:5

Blessings,

Mary

Mary = organization queen

Our apologies for the delay. Mary, hailing from the planet Listmaker, has zapped our home with a ray gun loaded with organizational frenzy. The Quarks of Berryland have tried to resist, led by their fearless leader AnnaSophia. However, resistance is futile. The Quark Berries were soon overwhelmed by the Queen of Listmaker and they became slaves to the organizational imperialism.

Back on Earth, AnnaSophia is doing very well. She is now weighing in at about 15 pounds, 7 ounces. And, her cyclosporine levels were perfect at the last clinic appointment. Perhaps, the only concern, is that more and more people are saying she looks like her daddy -- GASP! Seriously though, she is so beautiful to us and a testimony to God's grace.

Organization chaos aside, it has been so great to have the whole family together again, and to have our precious little girl with us. There were many times that we did not know if we would see this day. God is good. It feels like home again.

Blessings,
Steve

More photos

From bath and dinner time...

What the heck is this stuff they're feeding me??

Blessings,
Steve

Welcome home AnnaSophia!

First, our apologies for the delay in posting an update. The last week or so has been a whirlwind of activity as we transitioned the family back home.

Our little AnnaSophia has been through so much. To see her back home is an amazing testimony to the fact that God still works miracles. Sure, there are no big speeches, widespread media coverage, or fainting audiences, but our God does not need such things to reveal His majesty. Instead, our Lord takes the smallest and weakest among us and builds them up into His greatest works of art. My baby daughter is a mighty work of art by our Creator, and He has blessed our family immensely by sharing AnnaSophia with us.

During the election season and its aftermath, it was easy to get caught up into everything associated with our democratic process. Still, it came to the point that God reminded me how He has put things into perspective during our journey with AnnaSophia. No politician can replace the inspiration or purpose we find in Him. So, while we did vote and things did not go as we had hoped, the outcome had little meaning in the big picture of our lives. With that said, we love our country and will continue to pray for it and our elected leaders.

Healthwise, AnnaSophia is doing well right now -- praise God! Her anti-rejection medication dosage was even lowered recently. While she will be on these medications for the rest of her life, this is a positive step.

Moving the family back home has proven to be a lesson in organization. We've spent the last week getting organized, giving items to Goodwill, and throwing a lot of trash out. I'm not sure the trash collection people like us much these days.

During the move, we also had the honor of celebrating Emily's 8th Birthday! Here are a few pictures from the celebration:

Aren't those great pictures of some pretty ladies? Wow.

Many blessings to all, and thanks to each of you for your awesome outpouring of love and support.

Steve

AnnaSophia's trip to the E.R.

Today, AnnaSophia made an unscheduled trip back to Children's Hospital. She was playing with her big brother and sister, and got a mysterious cut under her nose. I heard all three of the children screaming at the top of their lungs. When I came running, I saw that AnnaSophia's face was bleeding. After looking at her closely, I decided to have her checked at the E.R. to make sure that she did not need stitches. I have to say that the kids are great during emergencies, and we were out the door in a matter of seconds. Ethan and Emily just might have a future as firefighters, as they could be in their boots and on their way to a fire in the shortest time ever.

When we arrived at Children's, it was so nice to see a familiar and friendly face. Cassandra, a family friend and E.R. tech, saw that we came into the E.R. and readily scooped us up to take care of us. Ethan and Emily had not eaten snack or lunch, and once AnnaSophia was settled, she treated the big kids to lunch. Thank you Cassandra for making even and unplanned trip to the hospital a good experience for Ethan and Emily.

After numbing AnnaSophia's injury and washing it thoroughly, the doctors realized that the cut was not deep enough for sutures. Originally, they were thinking that maybe they might glue her injury together, but there was concern that because it was so close to her nostrils, she might sniff the glue straight into her nose--not good. I was really glad that we were able to avoid stitches, because that would have required sedation. As you know, she does not have a good track record with sedation, so praise God that it was a superficial wound!

After we got back to the apartment, we realized that the culprit responsible for AnnaSophia's injury was actually a cast of a Phytosaur tooth that the kids got at the Denver Museum of Nature and Science yesterday. Nobody knows how the baby got the tooth, but it was on the floor broken next to where AnnaSophia was sitting. Because she is so mobile, today has been a lesson for all of us on watching AnnaSophia closely, and definitely making sure she does not play with dinosaur fossils. Who knows? Maybe she will be an archeologist one day. Needless to say, I have a headache, and I'm sure, another gray hair.

Mary

Countdown to home

AnnaSophia was so charming in clinic on Monday. She watched and "tried to help" with her blood draw from her picc line. We got her blood pressure the first time, which is unusual, and she smiled and charmed her way through the rest of her intake. After throwing up her meds and an EKG, she fell asleep and allowed her echo tech to get perfect ultrasound pictures of her new heart. After examining AnnaSophia, Jilayne removed her picc line. Praise God for success in even the little things! Every thing looked really good, including her. She is just so active, and I told Steve that he needed to make sure the house was sufficiently child-proofed before we came home, because she is feeling so well that she will be into everything.

Our target date to come home was November 3rd, but Jilayne told us Monday that we could go home after Thursday's clinic. Steve is coming up Friday, and we officially move home Saturday, November 1st. God is so good! It seemed like at times I would never see this day. I often tried not to think about when we would go home. I just lived in the moment, not thinking about more than one day ahead. AnnaSophia's health often changed dramatically from one week to the next, and I have made it through five long months purely by the strength that the Lord has given me. This journey has been a rollercoaster of emotions, but through it all, I have seen the Lord do mighty and amazing things. I am so thankful for all that the Lord has done, and I do not take one thing for granted. Life is but a vapor, and I try to live celebrating each moment. It is hard being the parent of a heart transplant child to not constantly feel like you are waiting for the other shoe to drop, but the one sure thing that gets me through is the fact that the Lord has walked each step of this journey with our family.

I also would like to extend a very humble thank you to the countless people who have prayed for our little angel and helped our family with financial gifts. Steve and I have felt so blessed and touched by the outpouring of support for our family. Your prayers have been more precious than gold. Words completely fail me regarding the amazing fundraisers and generosity of our community. If anyone knows me, this is really something, as I have a tendency to talk and talk and...well, you get the picture if you've read the blog. I have been completely humbled by this experience, and cannot possibly express adequately the thanks that is in my heart. May God bless you all and keep you in His holy care.

Mary

Look out world, here I come!

Thursday night, AnnaSophia started crawling! At first, she just scooted her little bottom up to her arms, but now she is actually crawling. She is such a little miracle, and it is such a joy to see her doing normal baby things. She has been a little behind, due to her cardiac issues, but is catching up quickly.

Her health continues to progress, and her CMV PCR numbers are coming down. They are at 1000, from 171,000, and she seems to be responding to the oral ganciclovir now. We had hoped that her picc line could come out on Friday, but Jilayne is being cautious and waiting till Monday. If she gets her line out on Monday, we will celebrate by giving her a little bubble bath. I know that she can't wait to splash in the bubbly water.

On Friday, Ethan graduated from his Neuropsych day program at Children's. We are so proud of him! In addition to learning new coping skills, he will continue with Occupational Therapy. He is doing so much better and is clearly a happier little guy. We definitely have our work cut out for us as far as scheduling, therapies and school for Ethan, but God continues to give us the strength needed for the challenges and changes ahead. Steve and I are so thankful for the help he received, and we all look forward to the brightest future possible for our boy.

Thank you for continued prayers.

Mary

A weekend furlough

Thursday's clinic was busy with an EKG and exam. AnnaSophia was fitted with a 24 hour holter monitor, and we should have the results by Tuesday. Her cyclosporine levels have still been running high (in the 300's). Jilayne surprised us by offering for us to go home for the weekend.

This was the first time that AnnaSophia and I had been home in 5 months. After a busy Friday, we finally made it home at 7:45pm. It was a very surreal experience. It was like seeing my home for the first time. I had memories of what home looked like, but I was amazed at how much I actually forgot about home. It seemed like a lifetime ago that I had lived there.

AnnaSophia actually seemed a little scared, because she did not know where we were. By Saturday though, she was happy as a little clam. She really enjoyed having the entire family together, and she especially liked the dog, Squirt.

Our time together passed much too quickly, and before we knew it, we were on our way back up to Denver. The sad thing was that going back to the apartment felt more comfortable that going back to our "real" home. I know that if I am feeling this way, it must be really hard for the kids.

We have fifteen days left in Denver, then we will be home for good, hopefully. Each day, the kids and I count the days left. Even though we will be coming to Denver once a week for the next year, I am praying that we will feel more settled after we go home. I think that it will be good for things to be back to the old kind of normal.

Blessings,

Mary

For everything there is a season, a time for every activity under heaven. A time to cry and a time to laugh. A time to grieve and a time to dance.

Ecclesiastes 3:1,4

And I thought I was busy before...

This week has been an exhausting whirlwind. I was able to nap for a little while before dinner, which gave me a little more energy to get through tonight. AnnaSophia is still continuing with her clinic schedule on Mondays and Thursdays, and Ethan is currently going to his Neuropsychiatric Day Program for Autism.

AnnaSophia is still getting her infusions twice a day for the CMV. So far she is a little champ and tolerating it well. She has bad days where she is quite nauseous, and then has good days, like today. We are concerned that she may be having some SVT (supraventricular tachycardia). The other night, I noticed that she was breathing very quickly as she slept. When I put my hand on her chest, her little heart was beating faster than normal. I listened with my stethoscope and as best I could count, her heart rate was around 180. The theory is that maybe the picc line is irritating her AV node in her right atrium. Tomorrow, in addition to the echo and EKG, she will also be put on a 24 hour Holter monitor. I pray that her new little heart is fine, and that it was just a fluke. We will also be checking her CMV PCR to see if her levels have come down since her IV Ganciclovir.

In addition to taking care of AnnaSophia, I have been at Ethan's day program a lot. I have parent meetings with the staff everyday, except when AnnaSophia and I are at the Cardiac Clinic. I have scheduled observation times and team meetings. Steve has been teleconferencing in on the meetings. I cannot even begin to tell how much I love my boy. He really struggles in some areas, but is so gifted in other areas. I see progress being made, and I am so thankful to have such a wonderful resource so close. God certainly knew what we needed and provided graciously.

Just like with AnnaSophia, God has a plan for Ethan and Emily too. I am so thankful that we are getting our family the help that we need. God is so good.

Mary
http://en.wikipedia.org/wiki/Supraventricular_tachycardia

Tonight's update

Mary is pooped, so she asked me to take over the blog for a while. She's obviously deserving of the rest as she manages AnnaSophia's needs and Ethan's daily clinic appointments. Just one of those challenges seem daunting to me, so I can't imagine managing both of them. Mary is doing a great job!

So far, AnnaSophia is handling the infusions for CMV pretty well. There is hope she could be done by Thursday! Please pray that the Gancyclovir infusions wipe out the CMV this week. The Gancyclovir can have side effects, so the sooner she can get off of it the better.

As noted by Mary a post ago, AnnaSophia's cyclosporine levels have been very high. We were hoping to get some new results today, but there was a logistical error at the hospital and we did not receive the results as expected. Hopefully, we can get some updated results soon.

Ethan seems to be doing well in his NeuroPsych Program for Asperger's Syndrome. Please continue to pray for Ethan, and that this program helps him. The staff seems very capable, but the program requires a lot of Mary. She has to visit with staff twice tomorrow, and there's another meeting on Wednesday. I'll conference in for that one.

As Mary's husband, I ask for prayers that she gets the rest she needs and strength to meet each day's challenges.

Blessings,
Steve

Balancing act

Today was a balancing act between two different clinics for two different children. AnnaSophia had her cardiac clinic today, and Ethan had his first day in the NeuroPsych Day Program for Asperger's Syndrome. I didn't realize what a miracle it was for Ethan to get into this program until the secretary told me today that it is normally a six month wait to be seen. She said that the Lord is definitely with us. Ethan will be seen Monday through Friday from 8:30-2:30 until things improve. He is very excited to be getting the help that he has wanted for a long time, as are Steve and I.

AnnaSophia's clinic appointment was first. Just when I thought that I had her asleep for her echo, she woke up screaming. I really don't want to have to sedate her for an echo. Today we got her to cooperate by letting her sit up during the exam. Her echo looked good, but her red blood cell count was down, most likely due to the IV Gancyclovir. We may need to do some special injections to help her count. If that does not work, she may be looking at a blood transfusion. Her cyclosporine levels also came back very high again. No one really seems to know why, but there is concern that this could be hard on her kidneys.

I feel like my head is swimming at times, attempting to take everything in and make some order out of it all. I don't even have time for my emotions to fully play out. It seems like I quickly move from one crisis to another. The one thing I am sure of is that the Lord is walking with me every step of the way.

Mary

But joyful are those who have the God of Israel as their helper, whose hope is in the Lord their God.

Psalm 146:5

Growing up

AnnaSophia cut her first tooth today! It is the cutest--and sharpest--little thing you ever saw. It seemed to come quietly overnight, and I noticed it later today. It is so neat to see normal little things, like cutting a tooth, happening with her. We celebrate the normal developmental milestones!

She also has learned how to wave bye-bye. She says bye-bye and waves all day. She has just captured our hearts so much. She enjoys her brother and sister as much as they enjoy her. Emily was dancing for AnnaSophia today, and she was just laughing and bobbing her little head.

It's amazing to me how she seems so happy in the midst of big medical things. We started her infusions of Gancyclovir yesterday. I was told that the infusions could cause nausea, vomiting, aching, flu-like symptoms, and just generally feeling crummy. Last night, the only symptom that made me think that she was not feeling normal was that she was up for a few hours in the middle of the night. That is really not her, because she normally sleeps well. Earlier this afternoon, I also noticed that she was swelling. After speaking with Jilayne (transplant), she said that we will look for extra fluid on her echo tomorrow. If she needs it, we will start Lasix to help draw it off. Giving her a little tylenol also seemed to help her feel better.

The medication that she is being infused with is a little scary. The home health nurse came yesterday to do some teaching with me. Even though it's not a chemotherapy drug, it comes labeled in a "chemotherapy" bag, because it is so caustic. I have to use special precautions to protect all of us while infusing, and there is a special protocol to dispose of the waste. I just hope that this medication helps to bring her numbers down, so that she can beat this virus.

Tonight, I pray that all of us will get rest. I have been really dragging all day, and I just hope that we can feel rejuvenated to face a really busy day tomorrow.

God bless,

Mary

Success!!!

AnnaSophia finally got her picc line placed today. Praise God for success! These kinds of things are never easy for her. Her left arm proved to be a problem today, and one of the techs was wondering if she had some type of vessel abnormality. After a half hour he came out to tell me that they were still working on things, and had accidentally gone into an artery. About 20 minutes later the radiologist told me that they were successful in her other arm. I think that I will now refer to her right arm as her official "picc line arm".

She unfortunately has had some issues with vomiting today. CMV has attacked her little digestive system giving her some bad belly aches. She doesn't want to eat anything other than breastmilk, but thankfully, it's the best food for her, and she is still continuing to gain weight on just mother's milk.

Tomorrow morning, she will get her next dose of IV Gangciclovir. I pray that this will bring her CMV levels down. I also found out today that her Cyclosporine levels were really high on Thursday (405). Her therapeutic levels are supposed to be between 175 and 225. Obviously, this has me concerned. I pray that her levels will stabalize, and that she will start to feel better soon. Thank you for all you who have been faithful to pray for our little girl. We appreciate it more than you can know.

Blessings,

Mary

AnnaSophia and special thanks

Special thanks

I've been remiss in not mentioning this sooner, but we want to extend our sincere gratitude and thanks to our church, Grace Community Church, The State Bank of Falcon, and the generous people of Falcon/Peyton. All have gone above and beyond to bless our family with donations and fundraisers. We are humbled and forever grateful for the generous outpouring of support they've given us.

We could not have made it this far if it were not for the generosities of others. We will never, ever forget that! We are equally grateful to the wonderful employees of Colorado Springs Utilities who continue to help us with rent, and the amazing folks at Sport Clips on Powers Boulevard and Smoothie King in Briargate.

AnnaSophia has had a pretty good weekend, all things considered. She still smiles, but it takes a little more effort to get her to give us a smile or a laugh. She has been through a lot, but continues to fight with the Lord's help. Please pray for her as the doctors attempt another pic line tomorrow.

Meanwhile, we bought her a new activity center, which she got to try out today. I'm still figuring out our digital camera, so the out-of-focus picture above doesn't do its capabilities justice. Still, we wanted to share. I've also included another picture of AnnaSophia taken a week or so ago. Isn't she beautiful? I've recently told a couple of friends that when I look into her eyes it's like reading the greatest novel ever written.

Blessings,
Steve

No go on pic line--The Sequel

After preparing for another attempt at a pic line for AnnaSophia, there was no success today. Actually, it was a blessing, as they did not even get so far as sedating her. I was really praying that the Lord would preside over her procedure and give us clear direction with the sedation. The nurse who was going to administer the Ketamine did not feel comfortable with doing so on a baby with her history. After the radiology team conferred, the consensus was that she needed cardiac anesthesia, not Ketamine.

The plan is to attempt the insertion of the pic line again on Monday. In the mean time, she received an IV infusion of Gangcyclovir on Friday. Saturday and Sunday, she will take the oral Valgancyclovir until the pic line is in.

Poor little AnnaSophia is just done with hospitals and hospital people right now. She has been fussy because she doesn't feel well. Two days of hours of no food before procedures has also not helped her mood. To Steve's dismay, she doesn't even want to go to her daddy. I am hoping we can have a mellow weekend with lots of hugs and snuggles to help her feel better, and I pray that all goes well on Monday.

Mary

No go on pic line

The pic line nurse was not able to get AnnaSophia's line in today. The problem was not her veins, but rather that they could not get her properly sedated. The nurse attempted to thread the catheter up her arm several times, but the two drugs used on AnnaSophia did not work.

Friday, the attempt will be made again in Interventional Radiology. A radiologist will place the line, while a nurse will administer a different drug for sedation called Ketamine. I am a little nervous about tomorrow's procedure, because the drug they are choosing to use is not a drug usually used on transplant patients. Dr. Pietra said that AnnaSophia's physiology is such that she should do well with Ketamine. I know that he is the expert, but something just doesn't sit right with me with this one.

I am praying for the Lord's wisdom to be upon the doctors. I am praying that the Lord will cover AnnaSophia with His holy and mighty protection, and that His angels will be present in that room. I pray that she will not have to be tortured through her procedure, but that she will be comfortable as they make this next attempt.

Mary

CMV IVIG finished

Our morning started out early as Ethan, AnnaSophia and I arrived at the hospital for AnnaSophia's infusion. She really was not feeling well today. She was very cranky and did not smile the entire time we were at the hospital. This is unusual for our smiley little girl. It is an indicator that she is not doing well. She also has been pinching me, especially when she is nursing, which she has not done since she was on the steroids. Clearly, she just feels yucky.

She tolerated the infusion well. Other than being a little hypotensive, she did great. I think that she also started feeling better later in the day. Our hope is that within a couple of days, the IVIG will work its magic and make her feel lots better.

The nurses left her IV in from her infusion to help with the pic line tomorrow. If they need it, it's there. If not, they can remove it then. Tomorrow, our day will start early with clinic, and then we will head over to the pre/post unit for her pic line placement. I pray that the Lord will guide their hands, and that the pic line will be perfect.

We do not know how long she will have the line in. The doctor said that AnnaSophia will let them know when it's ready to come out. When her levels come down, the pic line comes out. I did hear today that an older transplant patient who had CMV reported that even after his levels were zero, he still just did not feel right. AnnaSophia really does not feel well right now, but I am hopeful that the Lord will restore her health, and that she will be our bubbly, smiley little angel again soon.

Mary

CMV worse

I recently received a call today from Jilayne, our transplant coordinator, regarding AnnaSophia's CMV levels, which were run early this morning. The bottom line was that she was worse--much worse. Last week her levels were 62,835. Today, her levels were 171,375. She has gone from high to severe in one week. The plan is to act immediately in battling this CMV infection. Tomorrow morning, AnnaSophia will go into the infusion clinic on the oncology floor for a 6 hour infusion of CMV IVIG. She has had IVIG before for rejection, but the one for CMV is apparently tougher on children and more likely to cause reactions.

In addition to the IVIG, AnnaSophia will go to the pre/post unit of the cath lab Thursday morning after clinic for a pic line placement. This will enable us to give her the Valgancyclovir (antiviral) intravenously. She will receive Valgancyclovir 2 or 3 times a day. At this time, we do not know how long she will have the pic line for. The doctors want her levels to drop substantially before removing the line, but as of today, no one really is talking numbers.

I pray that the Lord will go before us and guide the hands of the nurses placing the IV tomorrow. I pray that the Lord will help AnnaSophia to tolerate the IVIG without serious complications. I pray also that the Lord will guide the pic line team on Thursday, and that they would be able to get the pic line in without trouble. Lord, protect little AnnaSophia from the serious complications of CMV. May your wisdom be upon the doctors and nurses and your comforting presence felt by us all.

Mary

My soul finds rest in God alone;
my salvation comes from him.
He alone is my rock and my salvation;
he is my fortress, I will never be shaken.

Psalm 62: 1-2

The cries heard 'round the hospital

Today in clinic, AnnaSophia had decided that she was not in the mood for an echo. She protested and screamed so loudly that she was heard throughout clinic. She worked herself into such a tizzy that she even threw up. No matter how much I explain to her that this is an important test, she wants no part of it. Cartoons and silly adults are of no interest to her as a distraction either. The doctor needs good pictures of her heart, so the recommendation today was to start sedating her for echos. Because I don't want her sedated any more than neccessary, I was able to convince them to try doing her echos when she falls asleep after 9am. After she finishes her morning meds, she gets really tuckered out and takes a little nap. This morning, like clock work, she fell asleep after 9am, and we were able to get really good echo pictures. The doctor was happy with the results, and the team decided to work with us in scheduling her echos after she falls asleep.

After a tough morning in clinic, we had to head back down to the lab to have another CMV level drawn. The plan is to check her levels to see if the antiviral (Valgancyclovir) is helping. If there has been no change or if the levels are higher, she will need a course of CMV IVIG to help her battle this viral infection. The petechiae is getting worse by the day and is now covering her entire body. Her little face looks sunburned from all of the little broken capillaries. She spent the weekend enduring diarrhea and vomiting. Maybe part of the reason she had such a hard time in clinic is that she just didn't feel well.

Ethan, AnnaSophia and I were all worn out by the time we got home today. Just walking away from her set her off yelling and screaming, so we decided to just spend the rest of the day resting and cuddling. By dinner time she was a different baby, and we all felt better after getting some much needed rest. Tomorrow, we will receive the results of the CMV levels. My prayer is that she will have shown some improvement so that she can avoid an IV, but the Lord knows what is best. I pray that He will give His divine wisdom to our transplant coordinator in how to proceed with her care. I pray for rest and peace for all of us and continued healing for little AnnaSophia.

God Bless,

Mary

CMV Positive

AnnaSophia had clinic on Monday, and as I suspected, had not gained weight in a week. Her echo and EKG looked good, all of her vitals looked good, but the petechiae had continued to spread. She also has continued to have loose stools and occasionally vomit. Today, I received the results of her CMV and she is positive for the viral infection. Starting tomorrow, she will restart the antiviral drug Valgancyclovir. She will be on this drug for at least six weeks, but could be on it for as long as a year depending on how the viral infection responds to the treatment. If the oral medication does not seem to bring her numbers down (her copies were 62,ooo--a significant number), then the plan would be to start IV medication. I pray that the CMV will not cause major damage to her little body or her new heart. Complications as a result of this are not unusual.

In addition to this news, Ethan has been sick all day with a stomach virus. Thankfully, he is feeling better tonight, but I pray that AnnaSophia does not get what he had in addition to the CMV. I have kept him isolated from the rest of us all day and have disinfected everything as well as I can possibly can. Once he started feeling a little better, he actually liked having the day off from school to read and watch movies.

There is one thing I do know, and that is that God is in control. I have felt as if God has been nudging me that something was wrong. I know that transplant does not want me to stress about her health, but when something with AnnaSophia is not right, her symptoms are very subtle. Even when she doesn't feel well, she still plays and smiles and is really sweet. It takes a lot for her to not be her sweet little self. Even the petechiae is very subtle and one really has to look hard to see it. I just thank the Lord that He helped me to be very intune to her and her health. I pray that this viral infection will resolve quickly and without complications, and that the rest of us can stay healthy.

Mary

http://www.viropharma.com/Pipeline/Camvia/CMV%20Disease%20Overview.aspx

Sunday update

Thank you friends and family who have graciously kept us in your prayers. Although AnnaSophia's cyclosporine levels were stable as of last clinic day, it has been a hard week. She was doing really well until I noticed that she was developing petechiae on her face. I thought that it might have been due to her crying earlier in the day, but by the next day, she had it very lightly on her legs too. I called transplant and they have ordered another CMV test for tomorrow. Sometimes a CMV infection can cause petechiae in transplant children. She also has not been wanting to eat very well the last couple of days. She did not gain any weight as of Thursday, and I would be surprised if she has gained anything from Thursday to Monday.

I have struggled with becoming very weary. I have had a hard week with Ethan also. We have had him seen by a neurologist at Children's, and have been working to get him into the Child Development Unit and NeuroPsych. Ethan is in the process of being diagnosed with Asperger's Syndrome. All of the turmoil with AnnaSophia's health challenges have rocked his little world. He has meltdowns several times a day, and I have been working diligently to help him through these and keep our home predictable and stable. Anyone who knows our family well, knows that he has many food allergies. Out of desperation, I have recently taken him off of gluten in hopes that it will help with the tantrums. This is not an easy feat, but if we can see some calmness as a result, it will be worth it.

All of my children are precious little gifts from the Lord. Each one is unique according to God's design. I just pray that the Lord will give me the knowledge and patience to meet each of their individual needs according to His will.

Mary

Let us not become weary of doing good, for at the proper time we will reap a harvest if we do not give up.

Galatians 6:9

http://en.wikipedia.org/wiki/Petechia

My wife

For those of you faithfully following this blog and AnnaSophia's amazing story of strength, I have been remiss in not recognizing where she draws this strength from: our Lord and the mom He has blessed AnnaSophia with.

Mary has been through a lot, more than I could handle, but she has remained strong through everything. It was Mary who was strong when our little girl almost died after transplant surgery, while I was nearly passed out in her arms.

Mary is not only caring for AnnaSophia, but she's also looking after and teaching our other two children. Ethan, our 10 year old, is a very special boy. As his father, I will never forget how strong he was as a baby as he went through hospital stay after hospital stay, and ultimately went through surgery to correct severe reflux at 7 months of age. His smile lit up rooms, no matter what he was going through. We love him SO much, but he's incredibly demanding for reasons I will not go into here. I only ask that you pray for Ethan; that he would rediscover peace and the joy of being a boy with a Savior who loves him. Ethan is a sweet boy and I love him more than words can say.

I humbly ask that you would continue to rally around Mary and that you would pray for her as she cares for our children. I pray that she would receive much-needed rest, a moment or two for herself, and that her and the children stay healthy and safe while in Denver.

I was recently reading about another special boy who recently had a second heart transplant and who lives near us. It reminded me of the long road we have ahead of us as a family and made me realize how I've fallen short through this journey. I am a broken man and often weak, but Mary is strong. Mary's strength reminds me that only through Jesus can we stand up and fight another day, for through Him, all things are possible and only He can fix a broken man such as myself. I cannot imagine how lost I'd be without faith in Him and without the family He has blessed me with.

Last weekend, I passed by AnnaSophia as she was sleeping and I said to myself, "I'm so in love with her." The Lord gave me this amazing little girl -- this gift -- to open my eyes to His unending grace and the strength of a wife like mine.

Steve

Monday's clinic

AnnaSophia had a tough Sunday. She was tired and fussy and threw up before her evening meds. I was hoping that Monday, she would be a whole new baby. Unfortunately, she cried through her labs, intake, echo and EKG. She was just out of sorts. The good news is that her echo is still improving. The goal is to keep her on her Verapamil (for the thickness of the ventricle) until she outgrows her dosage. This could be a year or so away. She will also be kept on her Cellcept until right before she goes home.

Her cyclosporine levels were still high today, running in the 300's again. The thought is that when her NG tube came out, it affected her levels. The cyclosporine is absorbed through the mouth and mucousal membranes. It also adheres to plastic, which is why I don't give her a plastic toy or pacifier for a half hour after she is dosed. The theory is that when she had her tube in, some of the cyclosporine was adhering to her tube. Now that the tube is gone, all of the cyclo is being absorbed, thus requiring that we adjust her dosage now.

I really hope that this post makes sense, because I am so tired that the computer screen keeps blurring. I also hope that there are no typos. If there are, I apologize and hope that my next post makes more sense. Now that the brood is asleep, my pillow is calling.

Goodnight and God Bless,

Mary

Our first Cardiac Kids Conference

Saturday, AnnaSophia, Steve and I went to our first Cardiac Kids Conference. There was a geneticist, a parent advocate, and two of AnnaSophia's doctors speaking. There was a lot of helpful information for us, including how we can be the most prepared and organized with all of our little angel's medical information. Dr. Shelley Myamoto, the heart failure specialist, also spoke about when to re-transplant. This was a really important talk to us, as we know that AnnaSophia's heart will not last forever.

On the one hand, the conference was very sobering as we realize how critical all of these children are or have been at some point in their lives. On the other hand, we are so grateful to all of the doctors and nurses who have made it possible for us to be able to have every extra minute we have with our daughter. They are truly performing miracles daily just so parents can love on their children a little longer. There are a lot of children with congenital heart defects that do very well, but there are a lot, like AnnaSophia, that are not cured.

This is an issue near and dear to my heart, as her insurance will not last forever. She will be meeting her lifetime cap sooner rather than later. Medicare and Medicaid consider children who have received heart transplants to be cured--regardless of the lifetime of meds they have to take, the rejections, the possible cancers related to transplants and possible death. Through the Cardiac Kids group, I was told about an insurance option for uninsurable people in Colorado called Cover Colorado. It is a separate insurance that we could buy for just AnnaSophia. I will continue to look into this, and hopefully, it will solve our future coverage issues for our dear girl.

Just a quick update for our faithful prayer warriors. I saw Christian Sorenson and his mom Deanna on Friday. He is tolerating the chemo well, and was full of smiles. The staff is amazed that he doesn't feel sicker. In four weeks, the doctors will do further tests to see if the tumors are responding to the treatments. This brave little six year old doesn't seem worried at all, and has told people that Jesus is taking care of him. No wonder Jesus said to come to Him with the faith of a child. Kids are so great.

Then Jesus called for the children and said to the disciples, “Let the children come to me. Don’t stop them! For the Kingdom of God belongs to those who are like these children. I tell you the truth, anyone who doesn’t receive the Kingdom of God like a child will never enter it.”

Luke 18:16-17 (NLT)

Unstable levels

Today in clinic, Jilayne (our transplant coordinator) said that we had reached a milestone. This was the first day in clinic that I honestly did not have any pressing concerns about AnnaSophia. Her appointment went well, but when Jilayne called later that morning with her cyclosporine levels, I was shocked. Normally, her levels should fall somewhere between 175 and 225. Her levels this morning were 356. Thankfully, they're not toxic, but should still be lower.

We can't understand why her levels have been bouncing around so much this month. One theory is that the cyclosporine, although given orally, could have been adhering to the NG tube, therefore, causing lower levels. When the NG tube came out, it could have caused her levels to jump higher. As a precaution, AnnaSophia will have her levels checked again tomorrow morning.

I pray for wisdom for the transplant team in balancing her levels, and that AnnaSophia will continue to progress in her healing. Thank you Lord for your loving covering and protection over our little girl.

Mary

Field trip!

Today, AnnaSophia went on her first post-transplant field trip. Grandma and Grandpa came to visit today and thought that all of us could benefit from a morale-boosting adventure. Ethan and Emily always get excited to see where Grandpa's adventures will take us.

Today, we got to see The Brown Palace Hotel and the State Capitol building. The kids were amazed at the opulence and beauty of The Brown Palace. AnnaSophia was entertained by the crystal chandaliers. From there we walked over to the Capitol building. The kids enjoyed seeing the portraits of all of the Presidents, but the main attraction was climbing to the top of the dome. Emily always has concern for everyone and wasn't sure that I should carry AnnaSophia up the stairs, because she read a sign that suggested that anyone with a heart condition should not go to the top. After I explained that the sign was a warning for cardiac patients who would actually be climbing the stairs (not being carried up), she settled down and enjoyed the tour.

The wonderful thing about our adventure is that we were the only ones on the tour. There are definite benefits to outings in the middle of the week rather than on the weekends. I love homeschooling for many reasons, but this is a nice perk when you have a child with health concerns.

AnnaSophia will never remember her little outing, but it was certainly nice to turn a regular day into something special. I hope to be able to enjoy other outings as her health permits, and maybe, special days like today will help the time to pass more quickly for all of us.

God Bless,

Mary

Sleep strike!

AnnaSophia is definitely feeling so much better. Her clinic appointments have become a lot shorter as she whizzes through her tests. We are still playing with her cyclosporine levels, but this could take time to get them just right. She is also continuing to gain weight and is now up to 13 lbs. 8 oz. Chunk on, little AnnaSophia!

Evidence of her feeling better is that she is doing new things each day. Today, she started squealing with delight. She has found her voice, and her precious little squeals are heard throughout the day. We are also working on waving bye-bye. She thinks that this is a really fun game.

The down side to all of this, is that she does not want to sleep. She napped for 15 minutes today, and then finally collapsed at 6:30pm. She then woke up at 8:30pm ready to go again. She fell asleep for a little while, but then mostly she just wants me to hold her. So here we are at 11pm, not sleeping.

I try to remind myself of where we were just a few months ago. Steve and I were uncertain of her future, and when we held her, we held her tight and treasured every moment. I still treasure each moment with her, but I find it ironic that when things are good, I have responsibilities swirling around in my mind of what else I should be doing at that moment. There is always laundry to do, dishes to be washed and bathrooms to be cleaned. I pray that these things will always be less important than the precious children that God has entrusted to me. May they always feel that they are more important than the endless chores that can fill my day. Sometimes it's important for the germophobe mom to put down the rubber gloves and eco-friendly cleaner and just be mom.

AnnaSophia is asleep now, and this mom is going to get some rest.

God Bless,

Mary

Be still and know that I am God.

Psalm 46:10

Beef yuck--it's what's NOT for dinner

AnnaSophia has had a happy, busy weekend with family. All three of the children really look forward to Steve's weekend visits. AnnaSophia is actually really doing well without her NG tube. She still occasionally throws up her meds, but nothing like prior to her tube placement. This is fabulous progress, and we pray that she keeps it up.

One of our goals is to get AnnaSophia to put on weight. Part of the strategy involved meeting with a dietician who works specifically with the transplant team. Some new research has dieticians encouraging the introduction of beef to babies earlier rather than later. It has good amounts of iron and zinc which are needed for growth and development.

The first time I gave AnnaSophia beef in the hospital, she ate it very quickly without any problems. Little did I realize that the steroids, which made her very hungry, were mostly the reason why she ate her beef with vegetable dinner so well. Each time I have tried since then, she did not want to eat it. Honestly, AnnaSophia had so many things going on, I just figured she didn't want to eat because of other issues, like an oral aversion.

Now that AnnaSophia is eating really well, I thought we would try her beef dinner again. We have developed a real honest and trusting relationship with feedings. She now knows that when I feed her, good things come to her. Tonight, she opened her mouth wide, expecting a yummy dinner and received a mouthful of beef yuck. She held her mouth open for awhile, trying not to swallow. When she finally did swallow, a full body shudder quickly followed. After that AnnaSophia clamped her mouth shut so tightly a crowbar could not have opened it. I tried her dinner myself and it was awful. One thing it does not take a rocket scientist to figure out is that if it tastes bad to adults, it will taste bad to children.

We will now try to reestablish our trusting relationship with food. Beef yuck will not be on the menu anymore. I will try other real-food beef options in the future. Maybe our dog Squirt will be interested in the other jars of beef smash in the pantry. For AnnaSophia, its back to cereal, fruits and veggies.

God Bless,

Mary

1...2...3...There's no tubes in me!

Today, AnnaSophia pulled out her NG tube again. She is very thrilled with herself. This time, I was hoping that we might be able to avoid putting it back in. After a call to transplant, we decided to attempt giving her all of her meds orally. After giving her all of her meds tonight, she did not throw up! Yeah, Yeah! This was big success. If she can tolerate all of her meds without lots of vomiting, there is no more need for a feeding tube.

AnnaSophia has continued to put on a little weight with each visit to clinic, and yesterday weighed in at 13 lbs. 6 oz. Her echo still looks good, with no visible sign of a gradient in her left ventricle. Unfortunately, her platelets were a little low, and she is back on aspirin therapy. Right now, her current meds are Neoral and Cellcept (to keep her from rejecting), Verapamil (to thin her ventricle), Prevacid (to protect her little tummy), and aspirin. Hopefully, she will soon be weaned off of all of her medications.

She is definitely making steady progress. She has been very happy lately, and loves interacting with her big brother and sister. Ethan and Emily steal kisses all day long. Yesterday, Grammy and Paw-Paw brought our dog Squirt up for a visit. This was the first time AnnaSophia and I had seen our dog since June.

The dog lived up to her name and squirted all over the pavement when she saw me. AnnaSophia was facinated with her furry friend, and Ethan and Emily got to spend some quality time with Squirt. Thankfully, the weather was mild and we spent most of the day at the park. AnnaSophia LOVES being outside. She smiled and cooed the entire time, not wanting to nap for fear that she would miss something. Overall, the visit was wonderful for all of our morale.

Our target date to come home is November 3rd. This could change a little as we get closer, but for now, it gives us another blessing to look forward to. God has been so good to us through everything. Remembering all of His blessings gives the children and I comfort. Thank you for all continued prayers. They mean the world to us, and God is so very good.

Blessings,

Mary

Rejoice always, pray without ceasing, in everything give thanks: for this is the will of God in Christ Jesus for you.

1Thess. 5:16-18

Small and steady improvements

AnnaSophia had clinic on Tuesday, and the good news is that she gained some weight. She now weighs 13 lbs. 5 oz.! She finally is starting to gain and keep the weight on, despite a weekend full of diarrhea. Because everything was going through her so quickly, her cyclosporine levels were a little low. It is constantly a balancing act trying to keep her levels steady. She will need to remain on her Cellcept until September 17th.

This weekend was a tough weekend for AnnaSophia, due to teething issues. I do have to say that it is such a blessing to see her going through normal developmental baby things, like teething, rather than serious problems with her heart. I have to keep a watchful eye on her and know when to call the transplant team, but it needs to be balanced with enjoying her as a "normal" baby. As Jilayne reminded me, she is a baby who has been through extraordinary circumstances, but now has a normal heart inside of her that is functioning well. It is a delicate balance for me as her mom. This is where I rely on the Lord to help me to not be a crazy, obsessed mom. I want to be smart in protecting her and watching for unusual symptoms, but I want to be able to enjoy her also.

Ethan and Emily are certainly enjoying their baby sister, but they are also incredibly homesick. They miss our home and our dog. We talk often about why we are here in Denver and about what a miracle little AnnaSophia is. They enjoy hearing the stories of the miracles that the Lord has done in their little sister. They also look forward to Steve's visits on the weekends. This helps the time pass a little quicker. I can say with certainty that we will all have a big celebration when we are able to move back home.

Thank you for continued prayers. Also, thank you to the Bowman family for blessing us with groceries today. I cannot possibly express enough how much your kindness means to us.

God Bless,

Mary

Mystery fevers

Thursday started off very early for me. I woke up at 5am noticing that AnnaSophia felt warm. After taking her temperature, she had a fever of 100.5. She responded to tylenol well, and did not run a fever the rest of the day. Her clinic appointment went well. Her heart is improving, and overall, she looks really good. Jilayne and I thought that her fever this morning could be attributed to teething. She's not really drooling, but she's chewing on everything and cries when she puts things in her mouth.

I was so exhausted lately, that I went to bed early (10:30pm) without updating the blog. As you can see, it's 3:30am, and AnnaSophia and I are awake, because she has another fever. This time it was 101. I gave her tylenol, and hopefully it will come down. If it doesn't, I will be putting a call into transplant.

It's so hard sometimes, trying to differentiate a fever in a normal baby at times, let alone a fever in a post-transplant baby. Is it normal teething, or is there something else going on? I just pray that it's nothing to be worried about.

Mary

Praising God through it all

I never thought I would ever hear myself say this, but Praise God for allergies! I am so glad to say that I do not have a cold, but just an up and down battle with seasonal allergies. This doesn't mean that I won't use the same precautions with hand washing and germ control that I would use if it were a cold. I'm just glad that I don't have anything contagious that could harm AnnaSophia. At times it almost feels like we are dodging a germ gauntlet at all times. Even our phlebotomist had a cold and was wearing a mask during AnnaSophia's blood draw today. But I know that I can only do so much, and ultimately, she is in the Lord's hands, and will at some time, get a cold.

Our clinic appointment today was good, but we needed to increase her cyclosporine a little due to still low levels. She is not metabolizing enough because of some vomiting over the weekend, but the good news is that she did not vomit tonight after her meds. As best we can tell, it looks as though the blockage in her left ventricle is completely gone. Praise God for healing! She also gained a little weight, and is up to 13 lbs. 2 oz. Hopefully she will continue to gain weight and not have anymore setbacks.

I do have a special prayer request for anyone felt led to pray for the Sorenson family. I met Chad and Deanna Sorenson through Calvary Chapel Aurora, when we first came to Denver for AnnaSophia's transplant. Their young son, Christian, had a transplant when he was a baby. He had a few setbacks when he was around three years old, including some rejection and I believe an infection, but seemed to be doing well when I met him during AnnaSophia's hospitalization for her transplant.

This morning, I saw Deanna at the hospital looking tired and overwhelmed, and she explained that Christian had been admitted because he now has lymphoma. This is a rare complication of heart transplant recipients, affecting 1 to 3% of the transplant population. I don't know what precipitated his condition, but it can sometimes be linked to Epstein Barr Virus. He is currently off of all rejection meds so that they can start chemotherapy. His mom explained that the tumors in his lungs are growing at alarming rates.

This is such a great family, and I felt a lot of empathy for the pain that they are experiencing. Ethan, Emily and I have been in prayer several times today for Christian and his family. We are praying for a miracle for him, and that the doctors would be given divine wisdom in knowing how to treat Christian. We are praying for comfort for his whole family, including his two sisters, and that they would not be consumed with fear. I hope to have periodic updates on his status, as this family is near to our hearts.

Mary


Psalm 121

I lift my eyes up to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The LORD watches over you—
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The LORD will keep you from all harm—
he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore.

Good Day

AnnaSophia has not thrown up once today. Yeah! This is a lot of improvement from the past few days, and her appetite is improving also. It helps that Steve is visiting this weekend. Having her daddy around always seems to make her feel better. She is definitely teething hard, and some of her irritability can probably be attributed to that.

Now for some bad news. I'm praying that I am just suffering from a bout with my allergies. August and September are the roughest months of the year for me, but unfortunately, I am thinking that this could be a cold. I am taking every precaution I can possibly take to protect AnnaSophia, and I hope that the antibodies she receives from breastfeeding gives her a little immunity.

Steve has been working hard to get some of the most beautiful pictures of AnnaSophia (courtesy of Little Loves Photography) on the blog. One of her pictures is now located on the side bar, but hopefully we will have more coming. Thanks Yvette for the gorgeous pictures!

Again, thank you for all who have felt led to pray for our family. Your prayers make a difference!

Blessings,

Mary

Some good news--but still sick

AnnaSophia's lab test came back CMV negative! Yeah, Yeah! We are very glad about this, but unfortunately, she still doesn't feel great. She threw up twice today, not a lot, but still not normal. It's not like she is really, really sick, just kind of sick. We just pray that she will improve and start getting better.

When a transplant child is showing symptoms like these, the first thing the team does is rule out rejection. So many viral symptoms are the same symptoms of rejection. AnnaSophia's echo and EKG looked great-the best echo yet. Her lab work is coming back good, except for her cyclosporine levels (anti-rejection medication), which were really low, due to her vomiting. Rejection has been ruled out, so we are left with thinking that this could be a viral thing.

The strange thing is that, I havn't gotten sick. Her and I are so close all of the time, one would think that if she had a virus, I would show even some mild symptoms. The Cellcept medication that she is on is very hard on the stomach. In two more weeks, she will come off of this, and hopefully start feeling better.

For now, all I can do is trust in the Lord for His plans for our little one. He has seen her through bigger obstacles than this. I just pray that He will sustain us and give us the endurance to get through the tiring, day to day stuff. The following scripture has given me comfort, and hopefully, will give you some comfort and peace also:

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Philippians 4:6-7

Thank you everyone who has felt led to pray for us. We appreciate it more than words can express.

Mary

Mystery illness

AnnaSophia started the day with a fever and not feeling well. After a call to transplant, we decided to have her seen. She had a lot of blood work drawn, including checking her CMV levels (cytomeglovirus). Her donor was CMV positive, therefore, AnnaSophia was on a 6 week course of an antiviral called Valgancyclovir. Last Saturday, she was able to stop the medication. There was some concern today that the CMV could be causing some problems, or she could just have a virus.

This is one of those situations where I just keep backtracking and playing everything over in my head trying to figure out how she could have contracted anything. We are so careful in protecting her. No one in the family is sick, but Jilayne (transplant coordinator) suggested that sometimes people can carry a virus and not actually be sick. In the case of an immune suppressed person like AnnaSophia, she can catch the virus, whereas no one else would necessarily show symptoms.

So now we have a new protocol, as per Jilayne, for the next several months. In addition to very good hand washing, no one is allowed to kiss on her excessively, be in her face, allow her to put her hands in or near people's mouths, touch her hands, etc. for awhile. I guess that I am the exception, seeing as I get to breastfeed her. In essence, she needs to be "bubble baby" for awhile.

Hopefully, she will get better over the weekend, and we can avoid anymore visits to clinic until Monday. We had to increase her cyclosporine (to guard against rejection), because her levels today were very very low. Jilayne believes that this was possibly due to all of the vomiting. The team will continue to keep a close eye on her to make sure that whatever this little illness is does not affect her heart.

Prayers are appreciated regarding her newest challenge. We pray that she will overcome this, without damage to her precious new heart.

Mary

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11 (NIV)

Tuesday night vomit fest

AnnaSophia started the day out really well. She was so happy and almost seemed like a normal little baby. I noticed that she seemed to be getting on a really great schedule, with dependable nap times today. This is such a good thing, as I use this time to homeschool Ethan and Emily. Even though I know that we are still going to have tough days, it seems like it takes me by surprise every time.

AnnaSophia was really hungry around dinner time and ate her cereal and applesauce like a champ. Later, she just didn't seem right, and started vomiting while I was nursing her. That was just the beginning. She just kept getting sick time after time tonight. She does not seem to have a virus, and after contacting Jilayne (our transplant coordinator) she reminded me that we will have good days and bad days, and that her medications can make her really sick.

Our poor little angel just seemed to have the wind knocked out of her tonight, but as I write this, she is resting peacefully. I just pray that this latest little bump in the road is short lived, and that she will not get dehydrated. I pray that the newness of tomorrow morning will bring peace for her little digestive system, and that the vomiting will not have any adverse effects on her heart.

Mary

Say cheese!

Today at clinic, AnnaSophia had a visitor from our local Fox 21 affiliate from Colorado Springs come to visit. Reporter Christina Salvo was interested in AnnaSophia's story, and came to Denver today to see what a normal day in clinic looks like for AnnaSophia. She interviewed myself, Steve and our transplant coordinator, Jilayne. Thankfully, AnnaSophia was in a good mood and was fairly cooperative through the interview.

I have been surprised at the interest that has come about regarding AnnaSophia's story. Christina was very nice and made a tremendous effort to truly understand the facts surrounding our little one's life and struggles. The interview was to air tonight during the 9pm news. I have not seen the story, because I cannot get the Colorado Springs news up here, but I was told by some family members that the story was well done. Kudos to Christina Salvo for her hard work!

I can honestly say that I have a new appreciation for what Steve does for a living, because it was very hard for me not to feel silly in front of the camera. I had to be very concious about what I was saying, so as not to sound studid. I am not quite sure how Fox 21 heard about AnnaSophia's story, but if publicizing it helps encourage other families to draw closer to the Lord, then it was all worth it.

Steve and I also cannot possibly express how grateful we are the local community for all of their assistance through fundraisers for our little girl. We are amazed and blessed by the outpouring of concern and support for our family during this time. Thank you, thank you, thank you.

God Bless,

Mary

Pure joy

2 My brothers and sisters, when you have many kinds of troubles, you should be full of joy, 3 because you know that these troubles test your faith, and this will give you patience.4 Let your patience show itself perfectly in what you do. Then you will be perfect and complete and will have everything you need.

James 1:1-4 NCV

This past winter, I had the privledge of attending a homeschool meeting, where author Kimberly Woodhouse was speaking. Her topic was homeschooling through various trials. In light of AnnaSophia's recent open heart surgery and subsequent hospitalizations, I thought that I just had to go to that meeting. She shared some of the trials that her family had gone through, and how they found that the Lord had seen them through. She shared a couple of bible verses that inspired her, and the above verse was one of them. I have held onto this verse through our journey with AnnaSophia and her heart issues. Sometimes it seems insane to be able to find joy in scary, out-of-control circumstances, but when you wait on the Lord, He can see you through even the most difficult of times.

This weekend can only be described as pure joy. Steve came up from Colorado Springs, and we were all together as a family. Simple things, such as breakfast together, with AnnaSophia on my lap, were pure joy. We are living very simply in an apartment here in Denver, but we are excited to have our own space to relax and not worry about germs. AnnaSophia seemed so content, like she knew that this was how our family is supposed to be--all together. Steve, Ethan, Emily and I enjoyed every little moment of cuteness that AnnaSophia displayed. I cannot express how thankful I am for our home away from home. I have been working on the story of how we came to find this apartment for the blog. It's complicated, but soooo cool, because God just took care of every little detail.

I believe that AnnaSophia's healing process is benefitted by having her entire family together. She seems so much happier, and she seems to be having more good days than bad. Saturday, she had trouble with vomiting and diarrhea, but today was a good day. Hopefully, her echo will show improvement tomorrow in clinic, and she will continue her upward trend. As we continue through this journey, I just pray that our family will continue to experience that special joy that is only found through our Lord and Savior Jesus Christ.

God Bless,

Mary

Making progess and feeling better!

AnnaSophia is finally starting to feel good. We are so happy, and I hope that she will continue to have more good days than bad. Her medication levels continue to come back just where we need them to be, and she is able to stop some of her meds. This week, she had her last dose of Bactrim, aspirin and as of tonight, she can stop her Valgancyclovir. In the next two weeks she will come off of her Cellcept (which will be replaced by another drug), but we are making progress. By tomorrow morning, she will only be taking Neoral, Cellcept, Prevacid and Verapamil. That is such a change from the nine medications that she was orginally taking.


As AnnaSophia starts to feel better, she is making amazing progress developmentally. She is sitting up, rolling over, and attempting to push up on all fours. She continues to babble, and Ethan, Emily and I were stunned to hear her say mama the other day. She is very interested in her environment, and it will only be a matter of time before she is into everything.


Before her transplant, I never thought that I would see this day come. Even though I felt that the Lord had given us hope and promise for AnnaSophia, sometimes it is hard to see past the current day to day struggles. One thing I do know from all of this is that the Lord has grace for us. I rely on Him daily for strength. Sometimes people will say that they marvel at how strong Steve and I are. The reality is that we are both very weak, broken people, and the only way we cope is by the strength that the Lord has given us. We take each day moment by moment and never forget to give the praise where it is due. The Lord has worked a miracle in our little girl, and we are thankful for each moment we have with her.

Mary

He has given me a new song to sing,
a hymn of praise to our God.
Many will see what He has done and be amazed.
They will put their trust in the Lord.

Psalm 40:3 NLT