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