New times, new hope

The last several months have been very difficult. I have found it hard to blog as the words just never came easily. It's not that AnnaSophia has been sick. She is doing really well. She is amazing! She is showing no signs of rejection, and God healed her from the CMV that reared it's ugly head a few months ago--without medication. God is so good!

I guess I was not really prepared for how our lives would be changed. We all know that a new baby changes our lives, but none of us were prepared for having a very sick baby with severe cardiac defects. We were not prepared for, and would have never chosen, the hard times our family went through.

When the children and I came home from Denver for good, I didn't know what to expect. Somehow, I knew that it was not going to work to pick up where we left off, like we had just come home from an extended vacation. Things were different. Our life was now different. Steve and I both had our times when we just had to deal with our emotions. We were operating in crisis mode for so long, that we pushed some of our emotions aside, because we just didn't have time to spend hashing things through in our minds. After we were all home, those times came without warning.

For me, I was dealing with a lot of sadness over the realization that in the past year, we lost our church and most of our friends associated with that church. God has blessed us with a new church family, Grace Community Church, who have been absolutely wonderful, but the scars that were left behind from our previous church had affected me more deeply than I cared to admit.

In addition to our church situation, I realized that one of my best friends had completely abandoned our friendship during my long stay in Denver. She never once visited AnnaSophia and I in the five months we were in Denver. I received very few calls of support or concern from her. In the back of my mind, I knew something was not right, but when AnnaSophia was fighting for her life daily, it did not seem important at the time.

Other friends clearly did not understand our situation, and we have been admonished for being "overprotective" about AnnaSophia's health. I do not want to have to apologize for rearranging a play date, because someone's child or children are coughing and have snotty noses. For people who have perfectly healthy children, a cold is nothing to worry about, but for a heart transplant baby, a cold could cause her to become very ill and reject. I patiently explain each time someone doesn't understand, and most people do, but others think we are just being difficult. These are the people who just don't "get it".

When the dust settled, and we got somewhat situated at home, we still had a lot of work to do in caring for some of the special needs of our children. I spent a lot of time working on and praying about Ethan's school for the next school year. I made the very difficult choice to put him in a public school with a wonderful autism program. Ethan clearly needed services that Steve and I just couldn't afford privately. But even this decision did not come without friends weighing in and telling us that we had "given up" on homeschooling. He has also needed to continually be under the care of his doctors in Denver. God has blessed us, and Ethan is doing really well. He is growing so much, and his teachers are so impressed with how smart he is. God has blessed us and put in motion all that Ethan has needed, including wonderful Christian teachers who pray for him daily.

While Ethan is going to public school, I have chosen to continue homeschooling Emily. My sweet daughter has been sandwiched between two siblings who require a tremendous amount of care, and sometimes get a lot of attention--not all of it good. This time that we have had together has been wonderful! We have grown so much closer, and she is growing spiritually by leaps and bounds. She has such a wonderful, kind and loving spirit.

Unfortunately, she was having trouble reading, so we made an appointment with the eye doctor. She definitely needed glasses, but we were also told that she is having a terrible time tracking. The bottom line: Emily needs vision therapy. Vision Therapy??? Are you kidding??? And does my insurance pay for that? Big fat NO is the answer to the last question. We have gotten two estimates from two different vision therapy places and both are over $1000 dollars. Our case manager for our insurance company said that she knows that I'm a mom who will sacrifice a lot to do what is best for my child. Guilt, guilt, guilt. Emily absolutely needs vision therapy, and I will always figure out a way to provide for my children, but for right now, vision therapy is on the back shelf. I am praying that the Lord will make a way, and I know that the Lord is always faithful.

My faith has been tested, but grown stronger. Our family grows closer together and closer to the Lord. AnnaSophia was playing tea party by herself one day. She laid out all of her tea cups and plates and spoons. She carefully put her play food on the plates, then clasped her hands together, and closed her eyes and said "Pray". It was only after she prayed that she poured her pretend tea. I was touched by her innocence and sweetness. It takes moments like this to put everything into perspective. Pray and come to the Lord with the uncomplicated faith of a child.

The Lord has pruned us. He has sifted us. The bad things for us have been removed, making for a healthier family. We are now able to grow and bear fruit with distractions removed. This year has been very difficult, but the Lord continues to bless us. My friendship with Torry, my dear sister in Christ, has grown so deep, and I am so thankful for her. As we continue to deal with the stuff that life doles out, we listen, share and encourage. Sometimes, I have felt like a ship without a rudder this year, because a lot of things that I felt were solid and good, the Lord took away. But the Lord has put better things in place. I trust my life, my family and my future with Him, and I look forward to a new school year and new hope for the life that He has planned for us.

I am the vine; you are the branches. If a man remains in me and I in him, he will bear much fruit; apart from me you can do nothing.
John 15:5

Mary

My Beautiful Girls

One year ago today

One year ago today was the day I received a call that there was a heart for AnnaSophia. For three weeks, it was the moment we had been waiting for. AnnaSophia was so sick, she was at severe risk for sudden cardiac death. I had just finished eating dinner at Ronald McDonald House, and had returned to our room to prepare AnnaSophia for bed. My phone rang and it was Dee Dee with transplant. I couldn't believe that the moment had come. I was so thankful, but also scared to death. There was no turning back. She needed a good heart, and she would surely die if she didn't receive one.

As I waited nervously in the CICU with AnnaSophia for Steve to arrive, my thoughts turned to the family on the other end of this transplant. I told Steve that we needed to pray for this family, because I couldn't imagine what circumstances led up to someone elses child dying. We were thankful for the hope that we now had for our daughter, but at the same time, very cognizant of the pain that this other family was experiencing.

As we celebrate AnnaSophia's one year heart anniversary, the one word that describes how Steve and I feel is thankful. The experiences of this past year have changed us. I take pictures of the children like crazy now. (You probably wouldn't know by the fact that I still haven't figured out how to post slideshows to our blog.) I am thankful for everyday that our family has together. Steve reminded me tonight of how many little things remind him of AnnaSophia around our home: the smudge on our mirror where AnnaSophia was kissing herself, the cheerios she put down our bedroom vent, the Barney DVD case she was carrying around after dinner. These are simple little things, but so extremely precious to us. The funeral we attended yesterday reminded us that we really don't know how much time we will have with her. She has been given a second chance at life, because of a selfless decision that the Hibbert family made. Everyday is a gift, and we feel extremely blessed and grateful as we remember our journey of the past year.

Mary and Steve

Today marks the anniversary of the Hibbert family's life changing forever. It was one year ago today that Mason choked, and his family was left with little hope for his future. Through their grief, they made a courageous decision to donate his organs so that others may live. We have prayed tirelessly for this wonderful family that the Lord would bring comfort and peace to them. Last week, they were blessed with the birth of their new baby girl, Abby Sophia. God is good, and we pray that they will continue to heal and find hope and peace for their family's future.

Tomorrow, our family will celebrate Christian Sorenson's life and grieve his passing. Christian's parents were so encouraging to us during such a difficult period of time in our life. This time last year, AnnaSophia was deathly sick. She was in such a fragile state of health that I could barely sleep, for fear that she would pass away while I was sleeping. Her heart was so weak, that she could not eat without sweating profusely and vomiting. She was on oxygen, a Milrinone pump to keep her heart functioning, and everyday was a miracle that she was alive.

Last year, little Christian was full of life, with bright eyes and a smile that could light up an entire room. When I met him, he was laughing, playing and running around the waiting room of Children's Hospital. He easily put a smile on Ethan and Emily's faces, when they were so scared for their sister's life. The light of Jesus shone through this precious little boy.

Things change so quickly in such a short period of time. Please pray for these precious families, that they will find the divine comfort of our Lord during these difficult times. Pastor Matt of Calvary Chapel Aurora passed along information about Christian's funeral. For those of you that would like to be there, but are unable, his funeral will be telecast live on the Calvary Chapel Aurora website at http://www.calvaryaurora.org/ and click on "watch service live".

Mary

Life and Death, Hope and Loss

It's been awhile since I've updated our blog. Time has been flying by, and I've fallen behind. I was not prepared for the strong emotions that I have been dealing with this July. June 17th marked the date that AnnaSophia and I arrived in Denver. Four days later, she was officially listed for transplant. I remember all to well how sick AnnaSophia was, and the utter fear and helplessness that we felt. It was an emotional rollercoaster as we watched her get sicker and sicker, and then, out of the blue, we received a call for her transplant. We ached for the loss of the family on the other end, and we waited expectantly and hopefully for our little girl to make it out of the surgery of her lifetime. We marveled at her "pinkness" after surgery, and felt like our hearts were stopping at the same time she arrested later that day. Last July was definitely an emotional time, both good and hard.

This July has proven to be a whirlwind also. We have struggled with the memories of last year, and have felt both joy and pain with the new experiences of this year. This July we celebrate the precious new life that our donor family, the Hibberts, have welcomed into this world. Last year Char and Dave lost their precious son, Mason. This past Tuesday, they welcomed a new baby girl into their family. She is a beautiful, precious little blessing, and we rejoice and celebrate this little angel that they have been blessed with.

The following day a family that we feel very connected to lost their precious son. Little Christian was six years old, and had received a transplant when he was just a baby. His amazing parents, Chad and Deanna, had comforted us many times while we were waiting for AnnaSophia's transplant. They encouraged us, shared scripture, prayed and visited with us. When we felt so scared, they understood the path that we were walking, as they had made the same journey. Last Fall, Christian was diagnosed with Lymphoma, which was a complication from exposure to Esptein Barr Virus (EBV).

Little Christian battled this cancer bravely and with the brightest smile I've ever seen. He loved babies and especially loved AnnaSophia. When I looked at Christian, I saw pure radiance. For a six year old, he had such a pure faith and love of the Lord. When I saw his dad last month, his heart function was about 13%. We were praying for a miracle. We were praying for a drug that might help his function, because he was not able to be relisted for a transplant. Wednesday, Christian went to be with the Lord.

I cannot even explain the grief that Steve and I have experienced for this beautiful family. Even though we know that Christian is no longer suffering and that he has been made whole again in Heaven, the pain that we who have been left behind feel is real and strong. His parents and two sisters have a painful road ahead of them, and we pray for the peace that passes all understanding and comfort for them as they move through this next week.

We will continue to pray for both of these families. The anniversary of Mason's passing is quickly approaching, and we will be praying for the Hibbert family as this time draws near. May the Lord bless them and comfort them as only our Savior is able to do.

Mary

Cowabunga!

Grammy are Grandma are some of AnnaSophia's favorite people in the whole wide world. After spending the day with Grammy, AnnaSophia learned a new word: Cowabunga! She can't really say cowabunga, so she says "Bunga, bunga!". She walks around the house, "Bunga, bunga, bunga, bunga!". She cracks us up. The funniest thing is when she says "Bunga, bunga, bunga!" and dances.

She is developing her own special sense of humor, and loves to laugh. If someone else is laughing - she doesn't even need to know why - she will laugh. AnnaSophia reminds me of Emily at this age, because she loves clothes and shoes. She likes to try on new clothes and shoes and wears them proudly. She thinks her sunglasses are the greatest, and she will throw a fit if you try to put them away.

I hope that as summer wears on and gets warmer, we will have a chance to take her to the pool. We have never taken her swimming yet, and I think it's something that she would really enjoy, expecially in her new swimsuit! Summer here we come!

Mary

Clinic Day

As is custom for clinic days, today started early at 4:50am. The kids were champs and were ready and in the car in no time flat. Each month that passes makes me realize just how much AnnaSophia grows up in that short period of time. All of our Children's Hospital "people" are amazed at how quickly she seems to be growing up into a little girl. As usual, she handles her blood draw beautifully. She just seems to know what she is supposed to do with clinic now.

I brought her Barney DVD today in hopes that it would entertain her during her echo. She was SOOOO excited to be able to watch Barney in clinic. She just laid there perfectly during her echo, clapping her hands every once in a while to her favorite songs. She even let her sonographer take pictures of her aortic arch without crying. This was a record of good behavior for two echos in a row!

Her cyclosporine levels came back perfect, her platelets are back in normal range, and her echo looks good. I think I forgot to share that her platelets were very elevated (600 range) last clinic. Normal should be somewhere between 275 and 400. She has been taking a half of a baby aspirin a day for this last month. We can now stop the aspirin therapy.

There was a conflict with her scheduled day for her heart cath, so we have rescheduled for Monday, July 13th. AnnaSophia's SVC looked good on her echo today, so we are hoping that she might not need it ballooned. The bottom line is that we are hoping that everything is growing nicely with her and that she will require very little intervention. Also, it would be wonderful to announce to the world that she is showing no signs of rejection.

On a side note, I would like to update everyone on little Christian's status. Christian's parents, Chad and Deanna were so encouraging to us when we were waiting for a transplant for AnnaSophia. Christian received his new heart when he was a baby, and seemed to be doing well for many years. This past year he was diagnosed with Lymphoma and has been battling cancer, as well as decreased heart function.

I saw Chad at Children's today, and my heart is breaking for this wonderful family. Christian is really not doing well, and we don't know what the answer is. I cannot speak for Chad and Deanna and all of the emotions that they are going through, but I know that they would greatly appreciate any and all prayers. Chad said that he felt bad praying for a heart for his son, and he doesn't know if that would be the answer. They are hoping that maybe there is a medication, even an experimental one, that could help his weakened heart.

This family needs a miracle. Christian needs a miracle. This is a family with a very strong faith in the Lord, and they know that God is sovereign. I can honestly say that having been in a similar situation a year ago, what they would truly love would be the gift of time with their son. If you feel led to pray for this precious family, I know that they would greatly appreciate it.

Mary

I look up to the hills,
but where does my help come from?
My help comes from the Lord,
who made heaven and earth.

Psalm 121:1-2