Thursday, December 25, 2008

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

Tuesday, December 23, 2008

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

Thursday, December 18, 2008

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

Saturday, December 13, 2008

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

Tuesday, December 9, 2008

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

Sunday, December 7, 2008

Pictures!

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