Posts
While visiting our friend's blog, Keeping Up With the Younger's, I came across this montage that Mindy had posted. Lauren, who created this montage, did so to raise awareness about Congenital Heart Defects. I have watched this beautiful video several times, and it never ceases to move me. It brings back so many memories of our journey with AnnaSophia. Lauren did an amazing job of putting a face on CHD's. CHD's are real, they are common, and affect many, many families. I never imagined that we would ever have a child with a birth defect, let alone a Congenital Heart Defect. I hope that this video moves you as much as it has me. Please click on the link to the side of our blog labeled Congenital Heart Defects Montage.
Mary
Wednesday, October 14, 2009
Saturday, September 26, 2009
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
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
Friday, July 10, 2009
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
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
Wednesday, July 8, 2009
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
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
Thursday, July 2, 2009
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
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
Sunday, June 7, 2009
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
Tuesday, June 2, 2009
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
Tuesday, May 26, 2009
Medical Update
It's been a while since I've posted an update on AnnaSophia's medical status. Last time AnnaSophia's CMV levels were tested, she was finally negative. We finished out her antiviral, and, amazingly, she started eating better. The diarrhea got better, and the most amazing thing was that I noticed yesterday that she no longer has a coated tongue. This is truly noteworthy. She has had a coated tongue since she was orginally put on cardiac meds in January of 2008. Our transplant coordinator tried everything. AnnaSophia was on Nystatin, acidophilous and Gentian Violet. Nothing worked. We were so frustrated, and I finally just resorted to accepting that she would have a funky looking tongue forever. This seems minor, but we all rejoiced that this minor detail is better. We were so happy, that AnnaSophia walked around the rest of the night with her mouth open wide, showing everyone her "non-coated" tongue.
AnnaSophia is steadily gaining weight and is up to 19 pounds. She is walking everywhere, and is getting faster by the day. She is still not sleeping through the night. On good nights, she wakes once. On rough nights, she will be up two to three times. I know that she will eventually sleep through the night, and when she is weaned fully, I'm sure it will happen soon after. The funny thing is that I actually treasure those moments in the middle of the night, when just AnnaSophia and I are awake. There are no demands of the day; no laundry to do in the middle of the night. No meals to make, school to do, or dare I say, fights to break up. It's just her and I and a peaceful home.
AnnaSophia recently cut another tooth, bringing her tooth tally up to six. She is still teething pretty hard, and I can see two others trying to fight their way into the world. The thing she likes the best are frozen teethers. She will put one in her mouth and walk around with this frozen frog hanging out of her mouth. It's really too cute.
AnnaSophia's echo's are stable. From a cardiac standpoint, she is doing well. Her cardiac function is good. The concerns are that her aortic arch and her superior vena cava (SVC) have narrowed considerably, and she will need ballooning of both of those during her cardiac cath in July. Our hope is that the mild rejection cells that were present at her last cath are better in July. The biopsies are rated on a scale of 0-5. A rating of zero is actually the best she could get, meaning that there is no presence of rejection cells, and a rating of five is actually the worst. AnnaSophia's last biopsy was rated a 1A. We are praying that her heart cells will be a perfect zero.
Originally, our five month old little baby was on 11 different meds and was dosed 18 times a day to keep her from rejecting her new heart. She has come such a long way. AnnaSophia is now only taking two medications twice a day. By her one year anniversary, she will only be on her Neoral (immune-suppressant) twice a day to keep her from rejecting. I am absolutely amazed by this. She will have her med levels drawn every month to make sure she is getting just the right amount. She will go to clinic once every four months for an echo, EKG and check-up. In many ways, she will be living an extraordinarily normal life.
What I don't think people realize is that, even though she's doing so well now, she will get sick again. She will reject, she will get CMV, and she might even get another nasty virus, that could affect her negatively. She will require another transplant at some point in her life. The ideal goal would be for this graft to last her eighteen years, but the reality is that the transplant team does not know how long her heart will last. It really is dependant on AnnaSophia and various factors specific to her. No statistics can predicte what will happen with her. Each child's journey is so different.
As much as we are trying to go on living a "normal" life, we have been forever changed by our journey. We try not to get caught up in the "what ifs" and the "whens". We are aware of the fact that we have a child with a chronic illness, but we try to live like we don't. We don't want the family to get hung up on illness. We want to live the life that God intended for us, and with His help, we can make it through the challenging times.
Thank you for all of your prayers and concern for our family. We are forever grateful.
Mary
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let you 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 3:6-7
AnnaSophia is steadily gaining weight and is up to 19 pounds. She is walking everywhere, and is getting faster by the day. She is still not sleeping through the night. On good nights, she wakes once. On rough nights, she will be up two to three times. I know that she will eventually sleep through the night, and when she is weaned fully, I'm sure it will happen soon after. The funny thing is that I actually treasure those moments in the middle of the night, when just AnnaSophia and I are awake. There are no demands of the day; no laundry to do in the middle of the night. No meals to make, school to do, or dare I say, fights to break up. It's just her and I and a peaceful home.
AnnaSophia recently cut another tooth, bringing her tooth tally up to six. She is still teething pretty hard, and I can see two others trying to fight their way into the world. The thing she likes the best are frozen teethers. She will put one in her mouth and walk around with this frozen frog hanging out of her mouth. It's really too cute.
AnnaSophia's echo's are stable. From a cardiac standpoint, she is doing well. Her cardiac function is good. The concerns are that her aortic arch and her superior vena cava (SVC) have narrowed considerably, and she will need ballooning of both of those during her cardiac cath in July. Our hope is that the mild rejection cells that were present at her last cath are better in July. The biopsies are rated on a scale of 0-5. A rating of zero is actually the best she could get, meaning that there is no presence of rejection cells, and a rating of five is actually the worst. AnnaSophia's last biopsy was rated a 1A. We are praying that her heart cells will be a perfect zero.
Originally, our five month old little baby was on 11 different meds and was dosed 18 times a day to keep her from rejecting her new heart. She has come such a long way. AnnaSophia is now only taking two medications twice a day. By her one year anniversary, she will only be on her Neoral (immune-suppressant) twice a day to keep her from rejecting. I am absolutely amazed by this. She will have her med levels drawn every month to make sure she is getting just the right amount. She will go to clinic once every four months for an echo, EKG and check-up. In many ways, she will be living an extraordinarily normal life.
What I don't think people realize is that, even though she's doing so well now, she will get sick again. She will reject, she will get CMV, and she might even get another nasty virus, that could affect her negatively. She will require another transplant at some point in her life. The ideal goal would be for this graft to last her eighteen years, but the reality is that the transplant team does not know how long her heart will last. It really is dependant on AnnaSophia and various factors specific to her. No statistics can predicte what will happen with her. Each child's journey is so different.
As much as we are trying to go on living a "normal" life, we have been forever changed by our journey. We try not to get caught up in the "what ifs" and the "whens". We are aware of the fact that we have a child with a chronic illness, but we try to live like we don't. We don't want the family to get hung up on illness. We want to live the life that God intended for us, and with His help, we can make it through the challenging times.
Thank you for all of your prayers and concern for our family. We are forever grateful.
Mary
Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let you 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 3:6-7
Thursday, May 21, 2009
Barney Beans
It's so fun to watch AnnaSophia grow up. She is starting to look more like a little girl and less like a baby. She loves playing with her brother and sister, and she is "talking" so much. Two of her favorite things are Elmo and Barney. She LOVES them. She has a plastic Elmo that she carries around, gives hugs to and pats on the back. Everytime she hears Barney's voice, she squeals with delight and dances to the songs. I mentioned to Steve that she has been on a vegetable strike. I tried them all ways, but she still refused any veggie. I then had the idea to rename her green beans Barney Beans. I told her how much Barney likes them, and we all ate one to show her how good they are. Then, Ethan, Steve and I all broke out into the "Have a Snack" song, interjecting Barney Beans into the verse. She started dancing, laughing and eating her Barney Beans! I have now decided that anytime she has an aversion to a food, we just need to simply name it after her favorite things, and of course, sing a song.
I cannot express what a blessing it is to see her thriving and growing. She has the sweetest little personality, and I am so thankful to see her blossoming into this beautiful little girl.
Mary
Sunday, May 10, 2009
Happy Mother's Day!
Happy Mother's Day to all of the wonderful mother's out there! I pray that all of you have been blessed today. I am so thankful for the blessing of being a mother. I have heard people say many times that being a mother is the toughest, yet most rewarding job there is. I don't want to sound cliche, but I have to agree. When you are a mother, you feel things more deeply. You love more deeply, protect more fiercely, instruct more diligently than you did before children. I hope and pray that they will always know how much I treasure and love them.
God's blessings to all,
Mary
Saturday, May 9, 2009
Slammed!
I am shaking as I write this. I cannot believe what just happened. I am sick in the very pit of my stomach. I was at a birthday lunch for a dear friend, and met a "friend" from our old church there. She initially had a hard time looking me in the face, but finally asked how my baby was. I explained that she is doing well, but had a few bumps in the road along the way. She told us that she heard there was a recent story on our daughter, but had not seen it. I explained that our goal was to really raise awareness about organ donation and the wonderful gift that it can be.
She apparently did not feel the same and proceeded to tell me that people in other countries are killed for their organs. I assured her that that does not occur in the United States, but she did not believe me. I explained that UNOS ensures that massive amounts of protocol are followed, so that everything through the process honors and respects everyone involved. She then proceeded to tell me that there was a recent lawsuit where the parents of a young man are accusing the doctors at the hospital for "killing" their son for his organs. I am aware of this case, and I hope that there was just a misunderstanding and lack of communication. Because of the number of people involved with transplant, I cannot see a mass "conspiracy" ocurring to kill a person for their organs. If anything, I pray that the family that lost their son will be comforted and find the truth.
There was such venom in this woman's demeanor, that I sat in shock. I felt sick to my stomach. Did she feel that it would have been better to let AnnaSophia die? I assured her that we were well aware of all of the protocol. I told her that AnnaSophia's donor family is absolutely wonderful, and that we are eternally grateful for the gift they gave our daughter. I think some people have such a difficult time putting themselves in other people's shoes, that they cannot even fathom the journey that we have endured. For the record, I told her that we did not specifically pray for a heart for our daughter. We did not pray for another child to die. We prayed to have the gift of time with our daughter. We prayed that the Lord's will would be done.
This woman is clearly ignorant of the donor process among other things. She clearly has no idea what the recipient families go through. She has no idea the grief and the process that the donor families go through. She also clearly has no idea what it's like to have a sick child, even though she has eight. She told me that she also heard that our other children were sick, and proceeded to tell me that we needed serious spiritual intervention. She believes that our family needs to be spiritually cleansed of whatever demons seem to be wreaking havoc here.
I don't know why some families are handed more difficult situations than others, but Jesus never promised life would be easy this side of Heaven. This woman, even though she calls herself a Christian, does not mirror the love and compassion of Jesus. She has a cold heart, and her self-righteousness is hurtful to others. My daily prayer is that somehow we would bring glory to God through our daily lives and testimony. I pray that we would somehow be a blessing to others. I just hope that as this woman stands before Jesus one day, she will not be judged too harshly, and that no one else has to endure her harsh words.
Mary
The Lord is close to the brokenhearted,
and he saves those whose spirits have been crushed.
Psalm 34:18
She apparently did not feel the same and proceeded to tell me that people in other countries are killed for their organs. I assured her that that does not occur in the United States, but she did not believe me. I explained that UNOS ensures that massive amounts of protocol are followed, so that everything through the process honors and respects everyone involved. She then proceeded to tell me that there was a recent lawsuit where the parents of a young man are accusing the doctors at the hospital for "killing" their son for his organs. I am aware of this case, and I hope that there was just a misunderstanding and lack of communication. Because of the number of people involved with transplant, I cannot see a mass "conspiracy" ocurring to kill a person for their organs. If anything, I pray that the family that lost their son will be comforted and find the truth.
There was such venom in this woman's demeanor, that I sat in shock. I felt sick to my stomach. Did she feel that it would have been better to let AnnaSophia die? I assured her that we were well aware of all of the protocol. I told her that AnnaSophia's donor family is absolutely wonderful, and that we are eternally grateful for the gift they gave our daughter. I think some people have such a difficult time putting themselves in other people's shoes, that they cannot even fathom the journey that we have endured. For the record, I told her that we did not specifically pray for a heart for our daughter. We did not pray for another child to die. We prayed to have the gift of time with our daughter. We prayed that the Lord's will would be done.
This woman is clearly ignorant of the donor process among other things. She clearly has no idea what the recipient families go through. She has no idea the grief and the process that the donor families go through. She also clearly has no idea what it's like to have a sick child, even though she has eight. She told me that she also heard that our other children were sick, and proceeded to tell me that we needed serious spiritual intervention. She believes that our family needs to be spiritually cleansed of whatever demons seem to be wreaking havoc here.
I don't know why some families are handed more difficult situations than others, but Jesus never promised life would be easy this side of Heaven. This woman, even though she calls herself a Christian, does not mirror the love and compassion of Jesus. She has a cold heart, and her self-righteousness is hurtful to others. My daily prayer is that somehow we would bring glory to God through our daily lives and testimony. I pray that we would somehow be a blessing to others. I just hope that as this woman stands before Jesus one day, she will not be judged too harshly, and that no one else has to endure her harsh words.
Mary
The Lord is close to the brokenhearted,
and he saves those whose spirits have been crushed.
Psalm 34:18
Sunday, May 3, 2009
Living vs. Surviving
These past two weeks have been tough. I usually put on my armor, deal with what were handed head on, and I don't dwell on things for too long. The situation at hand is what it is. But the last week, I have found myself dragging - physically and emotionally. Is it the lack of sleep? Do I need a vacation? The answer is probably a little of both...and more. It dawned on me yesterday that we have been doing a lot of surviving, but very little living. I mean living in a "more than just existing" sense.
Emily has asked a lot, "Are we going to have fun today?". "When are we going to go on a vacation?" Her days have consisted of being sick, running to doctor's appointments, running to the hospital's lab, etc. Both Ethan and Emily have done their schoolwork in the car, at the doctor's office, at the hospital, etc. Even though I try during the "good weather" days to inject a visit to the park, something is missing.
Joy is missing. At least it feels like it at times. In its place has been stress, fatigue and illness. I feel like a soldier who has gone to battle repeatedly, with little time to rest his weary body. There are dents in my armor and my strength is wearing thin. During the tough times of the past year, I have relied on the Lord so heavily, I KNOW that He carried me. Now my weary prayers have been short and have resembled something like, "Lord, you know what I/we need. Please meet us here.". And the Lord has answered these prayers time and time again. Thank you, Jesus.
I do not want to appear unthankful. On the contrary, I am very thankful that we have made it through the past two weeks, scary moments and all, and we can say that we conquered the virus. Woohoo!!! Ethan hopefully will not have permanent liver damage. His platelets are in normal range again. Emily is great. AnnaSophia is fantastic. But realistically, I worry about Ethan and the medications he is on.
Ethan's pediatrician and I discussed his meds, and the reality is that any of the medications he will need to take could cause some very serious problems. That's why they monitor him so closely. Basically, she told me that you pretty much trade one chronic illness for another...like AnnaSophia. We have traded a child who could not function physically, emotionally and socially for a child who is doing much better, but might have blood, kidney or liver problems. AnnaSophia traded in a heart with severe defects, congestive heart failure and imminent death for a heart that is normal, but her meds can lead to kidney, liver, or cancer issues.
So we watch, and pray and wait. We put our children in the hands of our Almighty, and we let Him be in control. We have faith and ask for wisdom, but in the mean time, we need to catch a break and start living, not just merely surviving. I want the children to have happy memorable moments of our time together as a family. I want them to enjoy a wonderful, QUALITY life. And most of all, I want them to have abounding faith and relationship with our Lord and Savior.
Mary
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4
Emily has asked a lot, "Are we going to have fun today?". "When are we going to go on a vacation?" Her days have consisted of being sick, running to doctor's appointments, running to the hospital's lab, etc. Both Ethan and Emily have done their schoolwork in the car, at the doctor's office, at the hospital, etc. Even though I try during the "good weather" days to inject a visit to the park, something is missing.
Joy is missing. At least it feels like it at times. In its place has been stress, fatigue and illness. I feel like a soldier who has gone to battle repeatedly, with little time to rest his weary body. There are dents in my armor and my strength is wearing thin. During the tough times of the past year, I have relied on the Lord so heavily, I KNOW that He carried me. Now my weary prayers have been short and have resembled something like, "Lord, you know what I/we need. Please meet us here.". And the Lord has answered these prayers time and time again. Thank you, Jesus.
I do not want to appear unthankful. On the contrary, I am very thankful that we have made it through the past two weeks, scary moments and all, and we can say that we conquered the virus. Woohoo!!! Ethan hopefully will not have permanent liver damage. His platelets are in normal range again. Emily is great. AnnaSophia is fantastic. But realistically, I worry about Ethan and the medications he is on.
Ethan's pediatrician and I discussed his meds, and the reality is that any of the medications he will need to take could cause some very serious problems. That's why they monitor him so closely. Basically, she told me that you pretty much trade one chronic illness for another...like AnnaSophia. We have traded a child who could not function physically, emotionally and socially for a child who is doing much better, but might have blood, kidney or liver problems. AnnaSophia traded in a heart with severe defects, congestive heart failure and imminent death for a heart that is normal, but her meds can lead to kidney, liver, or cancer issues.
So we watch, and pray and wait. We put our children in the hands of our Almighty, and we let Him be in control. We have faith and ask for wisdom, but in the mean time, we need to catch a break and start living, not just merely surviving. I want the children to have happy memorable moments of our time together as a family. I want them to enjoy a wonderful, QUALITY life. And most of all, I want them to have abounding faith and relationship with our Lord and Savior.
Mary
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.
James 1:2-4
Friday, May 1, 2009
AnnaSophia's Fox 21 Story
Here is the link for AnnaSophia's story:
http://www.coloradoconnection.com/news/video.aspx?id=293212
http://www.coloradoconnection.com/news/video.aspx?id=293212
Good News!
Ethan, Emily and AnnaSophia are pretty well over the virus that has kept the family down for nearly two weeks. AnnaSophia amazed us all with how quickly she recovered from it, and she didn't get nearly as sick as her brother and sister. Ethan was the one that worried us with his Thrombocytopenia.
After consulting with the hemotologist over the weekend, the doctors decided that he needed to have a CBC drawn every three days to monitor his platelets. I just heard from the doctor today that Ethan's platelets skyrocketed to 200! Normal is somewhere between 150 to 375. This was wonderful news! His white blood cell count is still low, making the doctor think that this is the result of viral suppression. I just thank God that he is recovering and doing so much better!!! The doctor seems to think that we should continue his Depakote since it is managing his emotions so well, but we will need to have a CBC drawn every six months to check his platelets. Steve and I are still mulling this one over.
Grammy and Paw Paw have been wonderful in helping us during these last two weeks, but unfortunately, they are now very sick with this virus. I feel so bad that we got them sick, and we pray for healing for both of them. Thank you for all who have faithfully prayed for our family.
Mary
After consulting with the hemotologist over the weekend, the doctors decided that he needed to have a CBC drawn every three days to monitor his platelets. I just heard from the doctor today that Ethan's platelets skyrocketed to 200! Normal is somewhere between 150 to 375. This was wonderful news! His white blood cell count is still low, making the doctor think that this is the result of viral suppression. I just thank God that he is recovering and doing so much better!!! The doctor seems to think that we should continue his Depakote since it is managing his emotions so well, but we will need to have a CBC drawn every six months to check his platelets. Steve and I are still mulling this one over.
Grammy and Paw Paw have been wonderful in helping us during these last two weeks, but unfortunately, they are now very sick with this virus. I feel so bad that we got them sick, and we pray for healing for both of them. Thank you for all who have faithfully prayed for our family.
Mary
Wednesday, April 29, 2009
Thank you to Christina Salvo!
The updated story on AnnaSophia ran last night on our 9pm news, and Christina Salvo, the reporter from our local Fox affiliate, did a wonderful job. She is a proponent of organ donation and loves to do stories that matter. Our hope is that the update on AnnaSophia would encourage others to think about organ donation. Thank you Christina for a job well done!http://www.coloradoconnection.com/news/video.aspx?id=293212
Blessings,
Mary
Blessings,
Mary
Monday, April 27, 2009
Waiting and retesting
Good news! AnnaSophia is improving much more quickly than Ethan and Emily. I am amazed! She was the one we were the most worried about, and she is doing really well. Emily is slowly recovering also. She is no longer taking three and four naps a day, but she still has a mild cough. Ethan, our hardest hit, is having horrible coughing fits at times. The good news is that no one has had a fever since Saturday.
Saturday, I had to take Ethan back to the lab for more testing. The good news is that the repeat urine test did not show that he had protein in it. Yeah! This lets us know that his kidney seem to be working well. His repeat CBC had shown that his platelets were still the same. Not great news, but at least they weren't worse. His metabolic panel came back normal also. His pediatrician, Dr. Foote, had consulted with our Denver doctor and also a Hematologist. The consensus was to keep Ethan on the Depakote for now, and the Hematologist wants to watch Ethan's blood work closely.
Today, we recieved a call from Dr. Foote telling us that Ethan's liver enzymes were elevated. This is troublesome news. For some reason, Ethan's liver is stressed. This could be from the Depakote, the virus or some other unknown reason. Tuesday, Ethan will go back to the lab for more bloodwork and then on to see Dr. Foote again. Hopefully, we will have more answers tomorrow.
Christina Salvo, the reporter who is following up on AnnaSophia, called today to tell us that her report will air on our local Fox affiliate tomorrow night at 9pm. This was moved up from the time we thought it would air in May. Christina was such a pleasure to work with, and Steve and I hope that everyone who sees her report will see the miracle of organ donation.
Mary
Saturday, I had to take Ethan back to the lab for more testing. The good news is that the repeat urine test did not show that he had protein in it. Yeah! This lets us know that his kidney seem to be working well. His repeat CBC had shown that his platelets were still the same. Not great news, but at least they weren't worse. His metabolic panel came back normal also. His pediatrician, Dr. Foote, had consulted with our Denver doctor and also a Hematologist. The consensus was to keep Ethan on the Depakote for now, and the Hematologist wants to watch Ethan's blood work closely.
Today, we recieved a call from Dr. Foote telling us that Ethan's liver enzymes were elevated. This is troublesome news. For some reason, Ethan's liver is stressed. This could be from the Depakote, the virus or some other unknown reason. Tuesday, Ethan will go back to the lab for more bloodwork and then on to see Dr. Foote again. Hopefully, we will have more answers tomorrow.
Christina Salvo, the reporter who is following up on AnnaSophia, called today to tell us that her report will air on our local Fox affiliate tomorrow night at 9pm. This was moved up from the time we thought it would air in May. Christina was such a pleasure to work with, and Steve and I hope that everyone who sees her report will see the miracle of organ donation.
Mary
Friday, April 24, 2009
Preliminary results for Ethan
Our pediatrician, Dr. Foote, called this evening with Ethan's CBC results. His platelets are low and his white blood cell count is also low. She is attempting to reach Ethan's doctor in Denver, who has prescribed the Depacote for him. Tomorrow morning we will head back to the lab at the hospital to repeat another CBC and urine. Her hope is that the cause of Ethan's symptoms and low blood count is due to the virus he has been fighting. It's rare, but viruses can sometimes cause the body to react this way. If his blood count looks like it has improved slightly by tomorrow, then he might just be fighting a really nasty virus. In an attempt to cover all of the bases, she is also having them draw for a metabolic panel. She wants to check his kidney and liver function as well.
Our biggest concern is that the Depacote is causing these negative effects. In some rare cases, this drug can cause Thrombocytopenia (low platelets), liver failure and also kidney failure. Even though we had researched this drug before Ethan was started on it, we were not aware of the possible toxicity. Needless to say, Steve and I are wanting to take him off of this medication and seek some more natural alternatives through some local doctors specializing in Autism.
We pray that Ethan feels well tomorrow morning and that the facial swelling will disappear. We pray that the pain in his legs will go away, and that the lab results will come back showing improvement. We also pray that the Lord will give the pediatrician divine wisdom in diagnosing and treating Ethan.
Our biggest concern is that the Depacote is causing these negative effects. In some rare cases, this drug can cause Thrombocytopenia (low platelets), liver failure and also kidney failure. Even though we had researched this drug before Ethan was started on it, we were not aware of the possible toxicity. Needless to say, Steve and I are wanting to take him off of this medication and seek some more natural alternatives through some local doctors specializing in Autism.
We pray that Ethan feels well tomorrow morning and that the facial swelling will disappear. We pray that the pain in his legs will go away, and that the lab results will come back showing improvement. We also pray that the Lord will give the pediatrician divine wisdom in diagnosing and treating Ethan.
Still under attack
AnnaSophia made it through the night pretty well. Her fever was under control with the tylenol, and she didn't have any other worrisome symptoms. I checked Ethan and Emily through the night, and they seemed to sleep well. I had high hopes that today would bring healing and peace to our family.
Emily woke up without a fever and was hungry. Great news! I put breakfast in front of her, and she told me she felt like she was going to faint. Indeed, she started to Vagal, so I put her on the sofa with her legs in the air. As she became more alert, I gave her juice. I was hoping that her blood sugar was just a bit low after yesterday, and after breakfast, she perked up a bit.
Ethan woke up late this morning, and I noticed right away that his face was really swollen. He was also complaining that his legs hurt a lot. After more investigating, I noticed that he also had petechiae all over his chest and abdomen. That was enough for me to take him into the doctor again. Mind you, this was our third trip this week.
I know that the doctor's office was surprised to see us again, but after examining him, the doctor was clearly worried. His urine showed that he has protein in it, which could indicate that his kidneys are not functioning like they should. We are currently waiting for the results of his CBC, and the blood culture will take about 5 days. We are to go in first thing tomorrow morning also. The doctor wants to rule out serious things like Thrombocytopenia (low platelets).
As we hurried home from the hospital, Emily and AnnaSophia both spiked high fevers yet again. I feel like my children are under attack right now, and I don't even know what we are battling. Please pray for our children, especially that Ethan will be ok. We will continue to post updates as we recieve them.
Mary
Emily woke up without a fever and was hungry. Great news! I put breakfast in front of her, and she told me she felt like she was going to faint. Indeed, she started to Vagal, so I put her on the sofa with her legs in the air. As she became more alert, I gave her juice. I was hoping that her blood sugar was just a bit low after yesterday, and after breakfast, she perked up a bit.
Ethan woke up late this morning, and I noticed right away that his face was really swollen. He was also complaining that his legs hurt a lot. After more investigating, I noticed that he also had petechiae all over his chest and abdomen. That was enough for me to take him into the doctor again. Mind you, this was our third trip this week.
I know that the doctor's office was surprised to see us again, but after examining him, the doctor was clearly worried. His urine showed that he has protein in it, which could indicate that his kidneys are not functioning like they should. We are currently waiting for the results of his CBC, and the blood culture will take about 5 days. We are to go in first thing tomorrow morning also. The doctor wants to rule out serious things like Thrombocytopenia (low platelets).
As we hurried home from the hospital, Emily and AnnaSophia both spiked high fevers yet again. I feel like my children are under attack right now, and I don't even know what we are battling. Please pray for our children, especially that Ethan will be ok. We will continue to post updates as we recieve them.
Mary
Thursday, April 23, 2009
AnnaSophia is sick
As much as we tried to stop the spread of illness, AnnaSophia managed to catch the crud. She has been running a fever all day. Ethan and Emily are still sick as well. Please pray for little AnnaSophia and that the Lord would protect her heart and heal her. We really want to avoid a hospital stay. Also, pray for healing for Ethan and Emily. Poor kids, they've been quarantined to their rooms for four days.
After two trips to the doctor, all we know is they all have some kind of virus.
Thank you for continuing to follow our blog and for your many prayers.
Blessings,
Steve
After two trips to the doctor, all we know is they all have some kind of virus.
Thank you for continuing to follow our blog and for your many prayers.
Blessings,
Steve
Illness has invaded
I knew this would happen at some point. Try as we might, bad germs have penetrated our home. Ethan started with a high fever Monday afternoon, and so "operation quarantine" was enacted. Yesterday, I took him to the doctor, as he has battled high fevers for three days. The strep test was negative, but I am not completely convinced. Yesterday afternoon, Emily started with the high fever. For Ethan this has been mostly a sore throat and repiratory symptoms. For Emily, it started the same, but she has also been vomiting this morning too.
I am very worried about Ethan and Emily. I don't like the continuous high fevers, and I am still suspicious of strep. The thing that has Steve and I really worried is that we do not want AnnaSophia to get this. As sick as Ethan and Emily are, we are concerned that this would truly put AnnaSophia in the hospital. The other thing that we are worried about is that the culprit could be Epstein-Barr Virus. This is another really nasty virus for transplants. Many times this virus, along with high levels of immune suppression, is behind the presentation of Lymphoma in transplant recipients.
At this point, I have quarantined the older two kids to their rooms. Luckily, since they are both sick, they can play together. AnnaSophia has been moved back into Steve's and my room. I have been disinfecting like a mad woman. Beyond that, the rest is in God's hands. I have found myself really anxious, but I know that this will help nothing. The reality is, AnnaSophia will be exposed to all kinds of nasty illness as she gets older, and ultimately, God is in control.
Mary
I am very worried about Ethan and Emily. I don't like the continuous high fevers, and I am still suspicious of strep. The thing that has Steve and I really worried is that we do not want AnnaSophia to get this. As sick as Ethan and Emily are, we are concerned that this would truly put AnnaSophia in the hospital. The other thing that we are worried about is that the culprit could be Epstein-Barr Virus. This is another really nasty virus for transplants. Many times this virus, along with high levels of immune suppression, is behind the presentation of Lymphoma in transplant recipients.
At this point, I have quarantined the older two kids to their rooms. Luckily, since they are both sick, they can play together. AnnaSophia has been moved back into Steve's and my room. I have been disinfecting like a mad woman. Beyond that, the rest is in God's hands. I have found myself really anxious, but I know that this will help nothing. The reality is, AnnaSophia will be exposed to all kinds of nasty illness as she gets older, and ultimately, God is in control.
Mary
Sunday, April 12, 2009
The gift of life
As we have been celebrating the resurrection of our Lord today, the Hibbert family has been close to our hearts. Our Lord gave up his life on the cross so that we may have everlasting life. What a sacrifice. What a gift. I have spent time today pondering that gift of life, and thinking about how AnnaSophia was given another chance at life because of the selfless gift the Hibbert family gave our little girl in their darkest time of grief. This is the first Easter they will be celebrating without their little Mason. Please keep this precious family in your prayers, that they will be comforted.
In honor of those whose lives have been affected by organ donation, many organizations will be flying Donate Life flags during the month of April. We have provided a link to the Donate Life website. We encourage all who visit AnnaSophia's blog to check out the link. http://www.donatelife.net/ There are many misconceptions about organ donation out there, and hopefully we can raise awareness about the need. This site is wonderful in providing education and stories of hope and success.
Many people who do not know AnnaSophia are surprised to hear that she had a heart transplant, because she looks so good. One thing we want people to know is that people who have had transplants can have normal, wonderful lives. Initially, there are a lot of medications to take. There are also risks, but all in all the quality of these children's lives are wonderful. Is it worth it to have a child endure the surgery and the "scary stuff" of a transplant? In our case, YES! It has been worth it to have the precious time with our littlest child and watch her grow.
Our transplant coordinator once asked us if we felt a sense of responsibility to our donor family, the Hibberts, in respect to AnnaSophia's care. And I answered "Absolutely!". Please understand that we understand that Mason's heart was a gift with no strings attached. Mason's heart is the most precious gift to our daughter. It is a gift that we treat with the utmost respect and awe. It goes without saying that we have always provided the best care for our little AnnaSophia. We have always given her medications down to the minute that she needs to get them, both before and after transplant. Somehow, knowing that her heart was such an amazing gift makes us want to care for it in the best possible way that we know how. We NEVER take for granted the second chance that AnnaSophia was given, and words cannot express how thankful we are. I know that Mason is in the arms of our Savior, and we pray for God's blessings on Dave, Char, Lincoln and the precious little life growing in Char. May the quiet peace of this Easter evening fill all of your hearts.
Mary
Be still and know that I am God.
Psalm 46:10
In honor of those whose lives have been affected by organ donation, many organizations will be flying Donate Life flags during the month of April. We have provided a link to the Donate Life website. We encourage all who visit AnnaSophia's blog to check out the link. http://www.donatelife.net/ There are many misconceptions about organ donation out there, and hopefully we can raise awareness about the need. This site is wonderful in providing education and stories of hope and success.
Many people who do not know AnnaSophia are surprised to hear that she had a heart transplant, because she looks so good. One thing we want people to know is that people who have had transplants can have normal, wonderful lives. Initially, there are a lot of medications to take. There are also risks, but all in all the quality of these children's lives are wonderful. Is it worth it to have a child endure the surgery and the "scary stuff" of a transplant? In our case, YES! It has been worth it to have the precious time with our littlest child and watch her grow.
Our transplant coordinator once asked us if we felt a sense of responsibility to our donor family, the Hibberts, in respect to AnnaSophia's care. And I answered "Absolutely!". Please understand that we understand that Mason's heart was a gift with no strings attached. Mason's heart is the most precious gift to our daughter. It is a gift that we treat with the utmost respect and awe. It goes without saying that we have always provided the best care for our little AnnaSophia. We have always given her medications down to the minute that she needs to get them, both before and after transplant. Somehow, knowing that her heart was such an amazing gift makes us want to care for it in the best possible way that we know how. We NEVER take for granted the second chance that AnnaSophia was given, and words cannot express how thankful we are. I know that Mason is in the arms of our Savior, and we pray for God's blessings on Dave, Char, Lincoln and the precious little life growing in Char. May the quiet peace of this Easter evening fill all of your hearts.
Mary
Be still and know that I am God.
Psalm 46:10
Saturday, April 11, 2009
Happy Easter!
I have spent some time reviewing our posts from this time a year ago. It breaks my heart to read those posts and see the pictures of AnnaSophia then. She is so much better now--and stable. This time last year was a scary and unpredictable time. Now we are watching her grow and thrive. Just the other day, we found out that she is officially CMV negative!!! Praise God! It seemed like we would never see that day come. She also is trying to walk and took ten steps across the living room to me the other day. What an amazing feat for our little miracle girl! She is still not truly walking on her own, but I feel that it should be really soon.
AnnaSophia is growing into a little girl, who truly loves her family and friends. She loves little babies and loves to play baby dolls. She loves dogs and can spot one a mile away. If we pass by the pet store in the mall, she yells "Dog, dog!!!" and squeals with delight. She loves other children and sharing. When we pray, she puts her little hands together and bows her head. She loves music and is known to dance whenever she hears a good song. She loves her big sister, Emily, and looks up to her so much. Her favorite foods are homemade chicken noodle soup and vegetable beef soup, and I think bath time is her favorite time of the day. AnnaSophia is such a joy. Our family has been truly blessed by the miracle of her little life.
As we celebrate the resurrection of our Lord and Savior, Jesus, this weekend, I am reminded of how much He loves us. He loved us enough to die on the cross for all of us. He nailed our sin to the cross and opened wide the gates of Heaven for all of us. His love for us is extraordinary. In the good times and the bad, He is constant. Jesus is the same today, yesterday and tomorrow (Heb. 13:8). The miracles that we have seen over the past 15 months are a testament of His love for us. Thank you, Jesus.
May you all have a very blessed Easter!
Mary and Steve
Then the angel spoke to the women. “Don’t be afraid!” he said. “I know you are looking for Jesus, who was crucified. He isn’t here! He is risen from the dead, just as he said would happen. Come, see where his body was lying. And now, go quickly and tell his disciples that he has risen from the dead, and he is going ahead of you to Galilee. You will see him there. Remember what I have told you.”
Matthew 28: 5-7 NLT
AnnaSophia is growing into a little girl, who truly loves her family and friends. She loves little babies and loves to play baby dolls. She loves dogs and can spot one a mile away. If we pass by the pet store in the mall, she yells "Dog, dog!!!" and squeals with delight. She loves other children and sharing. When we pray, she puts her little hands together and bows her head. She loves music and is known to dance whenever she hears a good song. She loves her big sister, Emily, and looks up to her so much. Her favorite foods are homemade chicken noodle soup and vegetable beef soup, and I think bath time is her favorite time of the day. AnnaSophia is such a joy. Our family has been truly blessed by the miracle of her little life.
As we celebrate the resurrection of our Lord and Savior, Jesus, this weekend, I am reminded of how much He loves us. He loved us enough to die on the cross for all of us. He nailed our sin to the cross and opened wide the gates of Heaven for all of us. His love for us is extraordinary. In the good times and the bad, He is constant. Jesus is the same today, yesterday and tomorrow (Heb. 13:8). The miracles that we have seen over the past 15 months are a testament of His love for us. Thank you, Jesus.
May you all have a very blessed Easter!
Mary and Steve
Then the angel spoke to the women. “Don’t be afraid!” he said. “I know you are looking for Jesus, who was crucified. He isn’t here! He is risen from the dead, just as he said would happen. Come, see where his body was lying. And now, go quickly and tell his disciples that he has risen from the dead, and he is going ahead of you to Galilee. You will see him there. Remember what I have told you.”
Matthew 28: 5-7 NLT
Saturday, April 4, 2009
AnnaSophia gets her first haircut
AnnaSophia received her first haircut the other day. As her hair has grown, it has been a source of much amusement. Some days, it sticks straight up in the air, no matter what you do. Other days, it seems to lay nicely. No matter what, she does not like to keep bows in her hair. Instead, the bows are great entertainment for AnnaSophia as she launches them like missles (usually when she is in her stroller) and squeals with delight. Her hair finally grew to where it just hung in her eyes, so the time of her first haircut arrived. Emily manned the camera and was a wonderful photographer, catching this milestone for us on film.
At first, AnnaSophia was not very compliant. I think she was afraid of the scissors. Emily and I tried to show her that it was ok by pretending that we were cutting our hair. It was only ok after we let her hold the cover for the scissors. As you can tell by the pictures that follow, she thought she was helping. She is such a little cutie!
At first AnnaSophia wasn't so sure of this haircut thing.
She's finally cooperating, as long as the scissors don't get too close.
She knows she looks pretty.
Look at those lashes!!!
At first, AnnaSophia was not very compliant. I think she was afraid of the scissors. Emily and I tried to show her that it was ok by pretending that we were cutting our hair. It was only ok after we let her hold the cover for the scissors. As you can tell by the pictures that follow, she thought she was helping. She is such a little cutie!
At first AnnaSophia wasn't so sure of this haircut thing.
She's finally cooperating, as long as the scissors don't get too close.
She knows she looks pretty.
Look at those lashes!!!
Tuesday, March 31, 2009
A long process
At times, like now, our posts will have a lot of information about our other two children, Ethan and Emily. Anything that affects our family, affects AnnaSophia too. I have been working diligently in obtaining services for Ethan. I have run into a lot of roadblocks with our school district, but I am very excited about the fact that we just recently got an advocate for him. She will come to the next meeting at our school district, advocating for Ethan and our family. This is a blessing because she knows Colorado law, and I don't.
I have recently toured a school in our school district that has an autism program for high-functioning kids like Ethan. God seems to be opening this door wide, and He has closed others. I just pray that the Lord will clearly steer us where Ethan needs to be.
One of the options that Steve and I have been exploring with great interest is the idea of an autism service dog. Originally, we thought that these dogs were exclusively for the physically handicapped or non-verbal/low functioning kids. What we have found through our research is that kids like Ethan benefit tremendously from these specialized dogs. The dogs help to calm and stabilize these kids emotions and also serve as a social bridge.
Before we even researched this idea, Ethan started telling us that he wished he had a dog that could love him and be his own. We thought about just trying to adopt a dog and have it independently trained for him. After talking with many experts in the field and Canine Companions, we were told that this would be a serious gamble. Canine Companions thought that Ethan would qualify for a dog and encouraged us to apply. We just received the application in the mail yesterday. We also are looking into an organization called Assistance Dogs of the West. They are an amazing organization that trains dogs specific to Ethan's needs.
The idea of Ethan having a 24/7 canine helper is an exciting idea for us. Ethan has many serious fears, and having a dog would mean that he could actually put his clothes in the clothes hamper in Steve's and my bedroom without a family member accompanying him. He could get his school supplies from downstairs without becoming hysterical. The dog would hopefully calm him in the middle of the night when he wakes up and can't get back to sleep. Sometimes, Ethan has been know to function on only 3 hours of sleep in a 24 hour period, because he has such terrible sleep problems. Medications help some, but not always.
We are still attempting to adjust his medications We are not having much success with Tegretol. The doctor may try Depacote next. The doctor is being very careful in his choice of medications for Ethan, as he is at risk for developing Bipolar Disorder. Some medications can actually increase this risk for him. We are very thankful that we have a wonderful team of doctors in Denver for him. We pray that the Lord will continue to open doors and direct our path.
Mary and Steve
I have recently toured a school in our school district that has an autism program for high-functioning kids like Ethan. God seems to be opening this door wide, and He has closed others. I just pray that the Lord will clearly steer us where Ethan needs to be.
One of the options that Steve and I have been exploring with great interest is the idea of an autism service dog. Originally, we thought that these dogs were exclusively for the physically handicapped or non-verbal/low functioning kids. What we have found through our research is that kids like Ethan benefit tremendously from these specialized dogs. The dogs help to calm and stabilize these kids emotions and also serve as a social bridge.
Before we even researched this idea, Ethan started telling us that he wished he had a dog that could love him and be his own. We thought about just trying to adopt a dog and have it independently trained for him. After talking with many experts in the field and Canine Companions, we were told that this would be a serious gamble. Canine Companions thought that Ethan would qualify for a dog and encouraged us to apply. We just received the application in the mail yesterday. We also are looking into an organization called Assistance Dogs of the West. They are an amazing organization that trains dogs specific to Ethan's needs.
The idea of Ethan having a 24/7 canine helper is an exciting idea for us. Ethan has many serious fears, and having a dog would mean that he could actually put his clothes in the clothes hamper in Steve's and my bedroom without a family member accompanying him. He could get his school supplies from downstairs without becoming hysterical. The dog would hopefully calm him in the middle of the night when he wakes up and can't get back to sleep. Sometimes, Ethan has been know to function on only 3 hours of sleep in a 24 hour period, because he has such terrible sleep problems. Medications help some, but not always.
We are still attempting to adjust his medications We are not having much success with Tegretol. The doctor may try Depacote next. The doctor is being very careful in his choice of medications for Ethan, as he is at risk for developing Bipolar Disorder. Some medications can actually increase this risk for him. We are very thankful that we have a wonderful team of doctors in Denver for him. We pray that the Lord will continue to open doors and direct our path.
Mary and Steve
Friday, March 27, 2009
New photos
AnnaSophia loves her new stroller!!!
Steve came home one night with this stroller/walker. When AnnaSophia saw the box, she instantly knew it was for her, and she squealed with delight. After Steve put it together, she pushed her stroller for an hour! She started losing her pants, so we just took them off. Good thing, too, because she was sweating from so much "exercise".
AnnaSophia thinks it's hysterical to play peekaboo. Here she is so tickled that she can't keep her tongue in her mouth.
AnnaSophia loves to play in Emily's dog bed for her Build-a-Bear dog. She knows that if she crawls in the bed and sits nicely, Emily will push her all around the house in the dog bed.
Big smile!Wednesday, March 25, 2009
Finding my blogger voice
I apologize for the long silence on our blog. Many of you have called or emailed us with concern. We appreciate this so much, and I hope that I will be able to maintain our posts consistently now. I have attempted to update our blog many times, but the words just wouldn't come. Our family has gone through a really tough emotional and spiritual time. This past year has been a really difficult year in many respects, and sometimes we find that we have been running on adrenaline for so long, that we forget what it feels like to just "be normal". I actually thought that when I got back home from living in Denver that things would be easier. In fact, life was more difficult in certain aspects. I can honestly say that each family member has gone through times of personal crisis since our return. There have been times recently when I cannot feel the presence of God at all. It is like being in a spiritual desert, and even though I don't feel the Lord's presence at times, I try to rest on the His truths that He reveals to me in scripture.
AnnaSophia is actually doing really well. Her cyclosporine levels (anti-rejection medication) are finally stable. Her last clinic appointment went well, and Jilayne was thrilled at how good she looked. She continues to grow and thrive, her echos are stable, and she finally cut her upper teeth! It only took three months for those two little teeth to break through. Apparently, "gum-tissue overgrowth" is a side effect of the cyclosporine. She will have lots of hair, big gums and be as cute as a button. AnnaSophia is also trying to walk now. She is standing on her own at times and will occasionally take steps. She is truly a blessing to us.
In addition to taking care of AnnaSophia and homeschooling Ethan and Emily, I have been working hard to get Ethan the care he needs. Ethan has been diagnosed with Asperger's Syndrome (an autism spectrum disorder), a Mood Disorder, and mild Tourette's Syndrome. We have been working with several experts in Denver, trying medications and also some behavior modification. We have seen some improvement, which we are very thankful for.
Our struggle has been with establishing an IEP (Individualized Education Plan) for Ethan. Steve and I believe that we are entering a new season in our family, one in which Ethan is going to be transitioned to school outside of our home. This has truly been a struggle for me, but I don't feel that I can provide everything that he needs in the homeschool environment now, and still be able to do an excellent job homeschooling both Ethan and Emily. It is our belief that Ethan has a strong moral foundation, but as he is getting older, he needs to learn how to function in the world. He needs special resources and our job as parents is to prepare him and give him the best possible future that we know how.
Unfortunately, this is not an easy task. Working with our school district has been confusing at best and nightmarish at worst. After many days on the phone contacting local resources, we were finally able to get an advocate to help us negotiate this process. I have many irons in the fire right now-too many to list. I just pray that the Lord will continue to guide us in the right direction and open doors.
While speaking with a friend recently, I told her that I wasn't sure what to post on our blog. She told me simply to ask that people pray for our family. So following her wise advice, I humbly ask that our dear friends and prayer warriors would be able to pray for our family and against the schemes of the enemy.
In His Love,
Mary
AnnaSophia is actually doing really well. Her cyclosporine levels (anti-rejection medication) are finally stable. Her last clinic appointment went well, and Jilayne was thrilled at how good she looked. She continues to grow and thrive, her echos are stable, and she finally cut her upper teeth! It only took three months for those two little teeth to break through. Apparently, "gum-tissue overgrowth" is a side effect of the cyclosporine. She will have lots of hair, big gums and be as cute as a button. AnnaSophia is also trying to walk now. She is standing on her own at times and will occasionally take steps. She is truly a blessing to us.
In addition to taking care of AnnaSophia and homeschooling Ethan and Emily, I have been working hard to get Ethan the care he needs. Ethan has been diagnosed with Asperger's Syndrome (an autism spectrum disorder), a Mood Disorder, and mild Tourette's Syndrome. We have been working with several experts in Denver, trying medications and also some behavior modification. We have seen some improvement, which we are very thankful for.
Our struggle has been with establishing an IEP (Individualized Education Plan) for Ethan. Steve and I believe that we are entering a new season in our family, one in which Ethan is going to be transitioned to school outside of our home. This has truly been a struggle for me, but I don't feel that I can provide everything that he needs in the homeschool environment now, and still be able to do an excellent job homeschooling both Ethan and Emily. It is our belief that Ethan has a strong moral foundation, but as he is getting older, he needs to learn how to function in the world. He needs special resources and our job as parents is to prepare him and give him the best possible future that we know how.
Unfortunately, this is not an easy task. Working with our school district has been confusing at best and nightmarish at worst. After many days on the phone contacting local resources, we were finally able to get an advocate to help us negotiate this process. I have many irons in the fire right now-too many to list. I just pray that the Lord will continue to guide us in the right direction and open doors.
While speaking with a friend recently, I told her that I wasn't sure what to post on our blog. She told me simply to ask that people pray for our family. So following her wise advice, I humbly ask that our dear friends and prayer warriors would be able to pray for our family and against the schemes of the enemy.
In His Love,
Mary
Friday, February 13, 2009
Results are in -- not the best news, but not the worst either
AnnaSophia's biopsy came back positive for a form of rejection, but at a low level, officially coded as 1A (on a 0-4 scale, with a 4 being most severe). There is potential rejection brewing, but it is currently confined to one portion of AnnaSophia's heart. The transplant team discussed her case after the results and decided to bypass treatment for rejection at this time. No doubt, the team is walking a tightrope with AnnaSophia, because that 1A could just as easily become a 3 or a 4 in a relatively short period of time. A 3 or 4 on the rejection scale could be life-threatening, at least the way I understand things.
While the "holding pattern" on treatment is a concern, we can certainly understand why the team has made the decision they have. A steroid treatment for rejection could awaken the CMV infection in AnnaSophia's body and make it much more severe, or risk the addition of another virus, or even cancer.
Speaking of CMV, we know AnnaSophia remains positive for the virus, but her numbers have come back down. At this point, we're hoping there will be a plan for wiping out the CMV completely. It is definitely impacting our little girl and is increasing her discomfort.
At this point, we humbly ask for your prayers that the AnnaSophia's heart would heal, that the CMV would be driven out of her body, that the transplant team would be given the wisdom to know how to proceed, that we would have strength to cope with the roller coaster ride of emotions, and that our family would have peace.
Finally, we are asking for prayers for Christian, a very special 6-year-old boy, and his family. Mary has blogged about Christian previously. Christian had a heart transplant when he was a baby and is currently fighting for his life. He is struggling with both heart failure and cancer. May God give Christian, his sisters, and his amazing mom and dad healing, rest and peace. Christian's dad has been on my mind a lot and I pray for him daily. I know the pain he must be feeling to see his son go through so much.
Blessings,
Steve
While the "holding pattern" on treatment is a concern, we can certainly understand why the team has made the decision they have. A steroid treatment for rejection could awaken the CMV infection in AnnaSophia's body and make it much more severe, or risk the addition of another virus, or even cancer.
Speaking of CMV, we know AnnaSophia remains positive for the virus, but her numbers have come back down. At this point, we're hoping there will be a plan for wiping out the CMV completely. It is definitely impacting our little girl and is increasing her discomfort.
At this point, we humbly ask for your prayers that the AnnaSophia's heart would heal, that the CMV would be driven out of her body, that the transplant team would be given the wisdom to know how to proceed, that we would have strength to cope with the roller coaster ride of emotions, and that our family would have peace.
Finally, we are asking for prayers for Christian, a very special 6-year-old boy, and his family. Mary has blogged about Christian previously. Christian had a heart transplant when he was a baby and is currently fighting for his life. He is struggling with both heart failure and cancer. May God give Christian, his sisters, and his amazing mom and dad healing, rest and peace. Christian's dad has been on my mind a lot and I pray for him daily. I know the pain he must be feeling to see his son go through so much.
Blessings,
Steve
Thursday, February 12, 2009
Preliminary heart cath results -- numbers look good!
Praise God! We just got some very good news from Dr. Miyamoto, the doctor who performed AnnaSophia's heart catheter procedure. AnnaSophia's (and Mason's) heart looks good. The pressures are within normal range, so the key is now to wait for the biopsy results.
We hope to have the biopsy results by tomorrow afternoon, so we're praying that those are normal. Dr. Miyamoto thinks they will be. If not, they'll start her on an IV steroid treatment at the hospital tomorrow or early next week.
We're also praying that AnnaSophia recovers quickly from the procedure and eats well this afternoon.
Steve and Mary
We hope to have the biopsy results by tomorrow afternoon, so we're praying that those are normal. Dr. Miyamoto thinks they will be. If not, they'll start her on an IV steroid treatment at the hospital tomorrow or early next week.
We're also praying that AnnaSophia recovers quickly from the procedure and eats well this afternoon.
Steve and Mary
Status update -- heart cath is done, awaiting info.
AnnaSophia apparently had a fast heart catheter procedure, with good access -- praise God!
We're still awaiting the doctor to give us a recap. The fact that the procedure was completed so quickly could be bad, or it could be good.
If it was quick because the doctor immediately saw signs of rejection, well, that's not news we'd want to hear.
If it was fast because everything looked within normal range, that's the best possible news we could get.
Please continue to pray for AnnaSophia that we get some good news, and that her recovery goes well. She's not out of the woods yet, nor do we have any answers at this time.
Blessings,
Steve and Mary
We're still awaiting the doctor to give us a recap. The fact that the procedure was completed so quickly could be bad, or it could be good.
If it was quick because the doctor immediately saw signs of rejection, well, that's not news we'd want to hear.
If it was fast because everything looked within normal range, that's the best possible news we could get.
Please continue to pray for AnnaSophia that we get some good news, and that her recovery goes well. She's not out of the woods yet, nor do we have any answers at this time.
Blessings,
Steve and Mary
Wednesday, February 11, 2009
Wednesday update
Congratulations to Torry and Todd on the birth of Lillyann Joy. She surprised us all and weighed in at 5lbs. 10oz. This is a great weight for an early baby. Mom and baby are doing really well. She is truly a little miracle as she tolerated labor and delivery very well, and the doctor reported afterwards that her placenta was more than 50% abrupted. This is truly amazing! God is so good, and we thank Him for a beautiful new life.
I received a call from Jilayne today, and the plan is to take AnnaSophia to Children's Hospital tomorrow for an echo. After the echo she will most likely have her heart cath then. She is scheduled for 11:30am. This is mostly to gather information on whether or not she is truly rejecting, and if so, to what degree. Her echo on Tuesday looked dry again, so one of the options is to hydrate her with fluids. Honestly, there is so much that we do not know, and this is the reason for the heart cath.
One of my concerns is that I hope the doctor is able to get quick access during the cath. The last cath took more attempts than I would like to recall. I also pray that she does well with the anesthesia. I pray that the Lord would give the doctors and nurses wisdom for her care, and that they would clearly see all that they need to see.
We will continue to post updates tomorrow.
Mary
I received a call from Jilayne today, and the plan is to take AnnaSophia to Children's Hospital tomorrow for an echo. After the echo she will most likely have her heart cath then. She is scheduled for 11:30am. This is mostly to gather information on whether or not she is truly rejecting, and if so, to what degree. Her echo on Tuesday looked dry again, so one of the options is to hydrate her with fluids. Honestly, there is so much that we do not know, and this is the reason for the heart cath.
One of my concerns is that I hope the doctor is able to get quick access during the cath. The last cath took more attempts than I would like to recall. I also pray that she does well with the anesthesia. I pray that the Lord would give the doctors and nurses wisdom for her care, and that they would clearly see all that they need to see.
We will continue to post updates tomorrow.
Mary
Tuesday, February 10, 2009
Prayers needed
Today started at 3:45am with a call from my best friend Torry, who is 36 weeks pregnant with her fifth child. She awoke with vaginal bleeding, and her husband took her to the hospital right away. She has a partial placental abruption and was induced to hopefully deliver her baby today. The baby is tolerating labor well, but it is slow going. Please pray that Torry and the baby will be ok.
I had a hard time getting back to sleep after Torry's phone call, and I had to get up at 4:45am anyway for clinic. AnnaSophia was just not herself. She just seems like she is not feeling well. After clinic today, I found out that her cyclosporine levels were really low. We adjusted with another dose of Neoral right away. I knew that something was really wrong when AnnaSophia just laid limp on the exam table when Jilayne examined her. Jilayne called me later today to let me know that the good news is that her CMV levels are down. She is now positive, but not quantifiable again. The bad news is that her echo didn't look good. She needs to go back on Thursday for another echo, and if this one has not improved, she will need a heart cath with biopsies on Friday afternoon.
I felt like I just had the wind knocked out of me. Even though battling CMV is not pretty, I would almost pick it over possible rejection. I can't help but worrying that AnnaSophia is going to fall into the category of "chronic rejector". One third of transplants never reject, one third reject one time, and one third are chronic rejectors. I know that I have done everything humanly possible to take the best care of her that I can. She is in God's hands, and they are very capable hands.
All of this news came today as I had Torry's other four children with me at my home. Right now, all seven children are asleep, and Torry's mom will be coming in from California tomorrow to help with them. This has been a crazy day. I couldn't have written a soap opera this dramatic if I had tried. The only thing that's missing is someone's evil twin making a surprise entrance. Humor aside, prayers are needed.
We pray for healing for AnnaSophia and wisdom for the doctors. We pray that her echo will show improvement on Thursday, and that our Lord will continue to hold AnnaSophia in his hands.
Mary
I had a hard time getting back to sleep after Torry's phone call, and I had to get up at 4:45am anyway for clinic. AnnaSophia was just not herself. She just seems like she is not feeling well. After clinic today, I found out that her cyclosporine levels were really low. We adjusted with another dose of Neoral right away. I knew that something was really wrong when AnnaSophia just laid limp on the exam table when Jilayne examined her. Jilayne called me later today to let me know that the good news is that her CMV levels are down. She is now positive, but not quantifiable again. The bad news is that her echo didn't look good. She needs to go back on Thursday for another echo, and if this one has not improved, she will need a heart cath with biopsies on Friday afternoon.
I felt like I just had the wind knocked out of me. Even though battling CMV is not pretty, I would almost pick it over possible rejection. I can't help but worrying that AnnaSophia is going to fall into the category of "chronic rejector". One third of transplants never reject, one third reject one time, and one third are chronic rejectors. I know that I have done everything humanly possible to take the best care of her that I can. She is in God's hands, and they are very capable hands.
All of this news came today as I had Torry's other four children with me at my home. Right now, all seven children are asleep, and Torry's mom will be coming in from California tomorrow to help with them. This has been a crazy day. I couldn't have written a soap opera this dramatic if I had tried. The only thing that's missing is someone's evil twin making a surprise entrance. Humor aside, prayers are needed.
We pray for healing for AnnaSophia and wisdom for the doctors. We pray that her echo will show improvement on Thursday, and that our Lord will continue to hold AnnaSophia in his hands.
Mary
Sunday, February 8, 2009
Life skill #1-Learning to sleep without Mom
AnnaSophia has had the privilege of sleeping with me ever since she was born. When she was a newborn, it was just natural to have her sleep with me so that I could feed and change her. When we found out about the heart defects, Steve and I both felt more comfortable with her in the same room with us. We wanted to be able to keep a close eye on her all of the time. When I lived in Denver with her, it just seemed right to have her close by so that I could feed her, give her meds, and monitor her health through the night. When we moved back home, neither Steve nor I felt comfortable with her sleeping in another room. Even though we had been reassured that she had a "normal" heart now, we needed the comfort of knowing we were right there.
AnnaSophia also became used to me being close by when she needed me. One of my deepest fears was that she would pass away in her sleep. If that were the way she was supposed to leave this earth, I wanted her to pass away in my arms, not in her crib by herself. We were well aware that we were spoiling our little princess, but after walking the journey that we walked last year, I wouldn't change a thing.
Well, the time has come for our growing, thriving little one to share a room with her sister, Emily. Emily is soooo excited. As Jilayne told her, "It's like having a sleep over every night!" Emily wants to be able to help with AnnaSophia's care, and she is excited about seeing her first thing in the morning when she wakes up. The other night, Emily was helping to feed AnnaSophia dinner and said that it's almost like AnnaSophia is her baby too. Emily has such a sweet loving heart.
Well, the honeymoon is coming to an end. AnnaSophia is so used to sleeping part of the night with me, that she is having a hard time sleeping in her new room. She does well from 8pm to 11pm, then she is up every hour until 3am. From 3am on, she will sleep for a few hours at a time in her crib. She certainly is a baby of habit. When she would wake at 11pm before, I would put her in bed with me to nurse. When I would wake up at 3am, I would put her back in her crib. It was survival for me. It was how I would get enough sleep to take care of three children, our home and homeschool Ethan and Emily.
The last couple of nights have been brutal on the sleep deprivation front. Learning to sleep in her crib without mom is a skill that I am attempting to teach her. I know that it will pay off in a few weeks, but for right now, I'm tired. I told Steve this morning that this is the kind of tired I felt when she was in the hospital. Thankfully, I don't have the same kind of stress associated with this kind of tired.
For now, I will attempt to get an hour of sleep before our "sleep lessons" start, and hopefully, she will do a little bit better each night.
Blessings,
Mary
AnnaSophia also became used to me being close by when she needed me. One of my deepest fears was that she would pass away in her sleep. If that were the way she was supposed to leave this earth, I wanted her to pass away in my arms, not in her crib by herself. We were well aware that we were spoiling our little princess, but after walking the journey that we walked last year, I wouldn't change a thing.
Well, the time has come for our growing, thriving little one to share a room with her sister, Emily. Emily is soooo excited. As Jilayne told her, "It's like having a sleep over every night!" Emily wants to be able to help with AnnaSophia's care, and she is excited about seeing her first thing in the morning when she wakes up. The other night, Emily was helping to feed AnnaSophia dinner and said that it's almost like AnnaSophia is her baby too. Emily has such a sweet loving heart.
Well, the honeymoon is coming to an end. AnnaSophia is so used to sleeping part of the night with me, that she is having a hard time sleeping in her new room. She does well from 8pm to 11pm, then she is up every hour until 3am. From 3am on, she will sleep for a few hours at a time in her crib. She certainly is a baby of habit. When she would wake at 11pm before, I would put her in bed with me to nurse. When I would wake up at 3am, I would put her back in her crib. It was survival for me. It was how I would get enough sleep to take care of three children, our home and homeschool Ethan and Emily.
The last couple of nights have been brutal on the sleep deprivation front. Learning to sleep in her crib without mom is a skill that I am attempting to teach her. I know that it will pay off in a few weeks, but for right now, I'm tired. I told Steve this morning that this is the kind of tired I felt when she was in the hospital. Thankfully, I don't have the same kind of stress associated with this kind of tired.
For now, I will attempt to get an hour of sleep before our "sleep lessons" start, and hopefully, she will do a little bit better each night.
Blessings,
Mary
Tuesday, February 3, 2009
Scars
I was talking to a mom one day whose baby had had a recent surgery. I tried to encourage this scared mom a few days prior to his hospitalization, and had prayed a lot the day of his surgery. Praise God that everything went well, and her baby left the hospital two days afterward. The surgery left a large scar on the child's head, but it is healing amazingly well. This child may possibly never notice the scar on his head as he grows.
Recently, this mom told me how she hated his scar and couldn't wait for his hair to grow over it. I shared with her what AnnaSophia's scars looked like. At one point, she had eight scars. Honestly, I've stopped counting now. She has large scars and little scars. Scars that look like dimples and scars from picc lines. She even has a scar from the velcro on a blood pressure cuff that was left on overnight once. I shared with this mom that Steve's and my perspective is that these are precious reminders of the miracle that she is.
It's interesting that when your child is born, you check to make sure that he or she has all of their fingers and toes. We marvel at their perfect little noses and ears and lips. As we gaze at our newest little additions to our families, we fall in love and find them just so "perfect". All three of our children have needed surgery. Ethan's and Emily's were not so "life-threatening", but I do remember wondering how my children would feel about their scars as they grew up.
AnnaSophia's scars were not even a blip on our radar, as we just wanted her alive. Saving her life meant big surgery with big scars. We have witnessed so many miracles in her short little life, that we have come to see her scars as miraculous reminders of God's hand in our lives.
As I have spent time reflecting on scars, I couldn't help thinking about our Lord and Savior, Jesus. He was whipped and beaten, nailed and pierced. His disciples knew Him by His scars. They were scars that He chose so that we would have life. They are the ultimate symbols of God's love for us.
We live in a society where physical perfection is most desired. The media paints a picture of what they consider to be perfect beauty. It is flawless, toned, unwrinkled, unscarred unreality. Many people become slaves to this idea of beauty, and it causes a great deal of unhappiness. Our journey this past year has changed our perspective on a lot of things. Scars are one of those things. We celebrate AnnaSophia's scars. She is our miracale girl, and her scars remind us of this every day. Just as we thank our Lord for the life he has given our daughter here on earth, we also thank Him for the eternal life that He has promised us by His scars.
Jesus came and stood among them and said, "Peace be with you!" After he said this, he showed them his hands and side. The disciples were overjoyed when they saw the Lord.
John 20:19b-20
Mary
Recently, this mom told me how she hated his scar and couldn't wait for his hair to grow over it. I shared with her what AnnaSophia's scars looked like. At one point, she had eight scars. Honestly, I've stopped counting now. She has large scars and little scars. Scars that look like dimples and scars from picc lines. She even has a scar from the velcro on a blood pressure cuff that was left on overnight once. I shared with this mom that Steve's and my perspective is that these are precious reminders of the miracle that she is.
It's interesting that when your child is born, you check to make sure that he or she has all of their fingers and toes. We marvel at their perfect little noses and ears and lips. As we gaze at our newest little additions to our families, we fall in love and find them just so "perfect". All three of our children have needed surgery. Ethan's and Emily's were not so "life-threatening", but I do remember wondering how my children would feel about their scars as they grew up.
AnnaSophia's scars were not even a blip on our radar, as we just wanted her alive. Saving her life meant big surgery with big scars. We have witnessed so many miracles in her short little life, that we have come to see her scars as miraculous reminders of God's hand in our lives.
As I have spent time reflecting on scars, I couldn't help thinking about our Lord and Savior, Jesus. He was whipped and beaten, nailed and pierced. His disciples knew Him by His scars. They were scars that He chose so that we would have life. They are the ultimate symbols of God's love for us.
We live in a society where physical perfection is most desired. The media paints a picture of what they consider to be perfect beauty. It is flawless, toned, unwrinkled, unscarred unreality. Many people become slaves to this idea of beauty, and it causes a great deal of unhappiness. Our journey this past year has changed our perspective on a lot of things. Scars are one of those things. We celebrate AnnaSophia's scars. She is our miracale girl, and her scars remind us of this every day. Just as we thank our Lord for the life he has given our daughter here on earth, we also thank Him for the eternal life that He has promised us by His scars.
Jesus came and stood among them and said, "Peace be with you!" After he said this, he showed them his hands and side. The disciples were overjoyed when they saw the Lord.
John 20:19b-20
Mary
Clinic update
We all need good news now and again, and I so glad to say that I have good news! AnnaSophia is looking better. Her echo has improved, and she is better hydrated. She is also starting to eat a little better. She didn't gain but a half an ounce, which wasn't surprising because of all of the diarrhea. Her cyclosporine levels were low this week after adjusting her meds last week. Jilayne says that she is the most sensitive baby to fluctuating cyclosporine levels. We are attempting to give her .21 mls twice a day, and hopefully her levels will stabilize.
AnnaSophia will continue to take the Valgancyclovir for a total of six weeks. My hope is that she will beat the CMV and STAY HEALTHY. Our little princess is starting to smile more again, and that is a sight we all love to see.
Mary
Sunday, February 1, 2009
Antivirals again!
AnnaSophia just hasn't been right lately. Someone who doesn't know her like Steve and I would look at her and think that she looks ok. Her symptoms have always presented in a very subtle way. She isn't eating as well as before, she's not wetting diapers as well, she's just not smiling as much.
Wednesday, I put a call into transplant in the morning, and the idea was that we would do some more blood tests. Thankfully, her CBC and metabolic panel came back normal. Her kidney function (which is what I was worried about) came back within normal limits. Praise God for the little victories!
Friday afternoon we got the call that her CMV PCR came back higher. She was at 2300 copies a few weeks ago, and the doctor wanted to wait to see if her immune system could fight the virus on its own. Unfortunately, her copies this time were up to 3974. As her numbers go up, she feels worse. The decision was made to put her back on the Valgancyclovir. Hopefully, in a week she will be feeling better.
Because her echo was a little dry last week, we will be going back to clinic this Tuesday. We pray that we will see improvement on her next echo, and that she will be able to fight the CMV with this new course of treatment. One thing I am certain of is that this little girl is a fighter. She amazes me everyday. We will continue to update her progress.
I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
Psalm 121:1-2
Mary
Wednesday, I put a call into transplant in the morning, and the idea was that we would do some more blood tests. Thankfully, her CBC and metabolic panel came back normal. Her kidney function (which is what I was worried about) came back within normal limits. Praise God for the little victories!
Friday afternoon we got the call that her CMV PCR came back higher. She was at 2300 copies a few weeks ago, and the doctor wanted to wait to see if her immune system could fight the virus on its own. Unfortunately, her copies this time were up to 3974. As her numbers go up, she feels worse. The decision was made to put her back on the Valgancyclovir. Hopefully, in a week she will be feeling better.
Because her echo was a little dry last week, we will be going back to clinic this Tuesday. We pray that we will see improvement on her next echo, and that she will be able to fight the CMV with this new course of treatment. One thing I am certain of is that this little girl is a fighter. She amazes me everyday. We will continue to update her progress.
I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
Psalm 121:1-2
Mary
Tuesday, January 27, 2009
Busy Tuesday
Today, we awoke to a snowy, icy clinic day. The kids thought it was really cool to see how low the temperature could go as we ventured out at 5:30 this morning. The coldest spot was minus 7 degrees. I prayed as we set out that the Lord would guide us safely to Denver, and we really made pretty good time until we reached Castle Rock. Everything pretty much came to a stand still, and it took us an hour and a half to reach Children's Hospital from south Denver. Our total travel time to Children's was 3 hours.
At 7:45, I realized that there was no way we were going to make it before her Neoral (cyclosporine) was due at 8am. This is one of those meds where you have a 5 minute window to dose. This is her life saving anti-rejection medication. I set alarms on my cell phone so that I give her this medication literally not a minute early or late. I paged transplant and asked them what they wanted me to do, because her blood could not be drawn after I gave her the Neoral. Transplant told me to not give her the medication and just to make it to the hospital as soon as possible.
The kids and I arrived running full speed at the lab at 8:21am. Our wonderful lab people were expecting us and drew her labs right away. As soon as the last drop of blood was collected, I squirted her meds in her mouth without delay. It was one of the most nerve-racking mornings I've had in a long time. All day, I've had to push back thoughts of her rejecting her heart.
Dr. Pietra said that she looked a little dehydrated on her echo. Her heart rate has also been a little high lately. I've noticed that she also looks like she is getting little pea size bruises on her back and limbs. Jilayne noticed that they are tightly grouped little areas of petichiae from her CMV. Her cyclosporine levels also came back pretty high, so she adjusted her Neoral down a little.
The good news is that we were able to stop her Verapamil today. Her and I will no longer need to get up at 3am for her middle of the night dose. Yeah! More sleep! She will need to go back to clinic next week to see how she is doing off of it. My job is to try to hydrate her as best as I can, and give her yogurt for the loose stools. If she doesn't seem to be improving, we will most likely need to draw another CMV PCR. Our hope was that she would be able to fight the CMV without antivirals, but if it continues to get worse, we may have to intervene.
Ethan and Emily were troopers today. I was really proud of how well they did, because it was a long day. I think they were secretly on their best behavior, because I only brought reading for them to do in the car, rather than a full school day. Needless to say, AnnaSophia is fussy, the kids are tired and I'm really exhausted. We all need some rest.
Tonight I plan to rest in the Lord. Every time we are handed a setback, I can't help but having negative, scary thoughts go through my mind. I start to wonder how much time we are going to have with our little AnnaSophia. Life is unpredictable and precious, and I try hard not to dwell on the negative. The one thing that I cling to is that God is good and He is sovereign.
I will praise you, Lord, with all my heart;
I will tell of all the marvelous things you have done.
I will be filled with joy because of you.
I will sing praises to your name, O Most High.
Psalm 9:1-2
Mary
At 7:45, I realized that there was no way we were going to make it before her Neoral (cyclosporine) was due at 8am. This is one of those meds where you have a 5 minute window to dose. This is her life saving anti-rejection medication. I set alarms on my cell phone so that I give her this medication literally not a minute early or late. I paged transplant and asked them what they wanted me to do, because her blood could not be drawn after I gave her the Neoral. Transplant told me to not give her the medication and just to make it to the hospital as soon as possible.
The kids and I arrived running full speed at the lab at 8:21am. Our wonderful lab people were expecting us and drew her labs right away. As soon as the last drop of blood was collected, I squirted her meds in her mouth without delay. It was one of the most nerve-racking mornings I've had in a long time. All day, I've had to push back thoughts of her rejecting her heart.
Dr. Pietra said that she looked a little dehydrated on her echo. Her heart rate has also been a little high lately. I've noticed that she also looks like she is getting little pea size bruises on her back and limbs. Jilayne noticed that they are tightly grouped little areas of petichiae from her CMV. Her cyclosporine levels also came back pretty high, so she adjusted her Neoral down a little.
The good news is that we were able to stop her Verapamil today. Her and I will no longer need to get up at 3am for her middle of the night dose. Yeah! More sleep! She will need to go back to clinic next week to see how she is doing off of it. My job is to try to hydrate her as best as I can, and give her yogurt for the loose stools. If she doesn't seem to be improving, we will most likely need to draw another CMV PCR. Our hope was that she would be able to fight the CMV without antivirals, but if it continues to get worse, we may have to intervene.
Ethan and Emily were troopers today. I was really proud of how well they did, because it was a long day. I think they were secretly on their best behavior, because I only brought reading for them to do in the car, rather than a full school day. Needless to say, AnnaSophia is fussy, the kids are tired and I'm really exhausted. We all need some rest.
Tonight I plan to rest in the Lord. Every time we are handed a setback, I can't help but having negative, scary thoughts go through my mind. I start to wonder how much time we are going to have with our little AnnaSophia. Life is unpredictable and precious, and I try hard not to dwell on the negative. The one thing that I cling to is that God is good and He is sovereign.
I will praise you, Lord, with all my heart;
I will tell of all the marvelous things you have done.
I will be filled with joy because of you.
I will sing praises to your name, O Most High.
Psalm 9:1-2
Mary
Saturday, January 24, 2009
Even more AnnaSophia -- BONUS!
Here are a couple more:
Squirt the dog is my best friend
I'm funny, huh?
More AnnaSophia!
Here are a couple of recent photos of AnnaSophia:
Dad! When the heck are you coming home?
I am a chunky girl despite going through so much!
Dad! When the heck are you coming home?
I am a chunky girl despite going through so much!
Wednesday, January 21, 2009
Prayers for Sam
This is Samuel Whitfield and AnnaSophia playing with the box of animals together. Sam just loves AnnaSophia. She had a coughing episode while they were playing, and Sam would look at her and ask "You ok Fia?" Sam is just the cutest bundle of a two year old I ever saw. He is also the youngest son of my dear friend Torry.
The day before AnnaSophia's birthday celebration, Sam was taken to the hospital for a long, petite mal seizure. It was the scariest thing Torry and her husband Todd have been through. Todd was assisting Sam's breathing and attending to him until the ambulance arrived. He was still seizing in the ambulance while in transit to the hospital. This was the first time anything like this has happened with little Sam.
We just recently received news that his EEG was abnormal, and he is having lots of small seizures. While listening to his heart, the doctor also discovered that he is having Premature Ventricular Contractions (PVC'S) every 10 beats. Sam is now in the care of AnnaSophia's wonderful Colorado Springs Cardiologist, Dr. Runciman. He will also be seen by a Neurologist soon.
We humbly ask for prayer for little Sam and his family. Sam is at risk of having a large seizure next. We pray that the Lord will guard his life and protect his brain, and prevent any big seizures. We pray that the Lord will give His angels charge over Sam. We pray for comfort for Torry, Todd and their other children, Tanner, Evy and Addison, as witnessing Sam's seizure was scary for all of them. We pray for wisdom for the doctors and everyone involved in Sam's care that they would know exactly how to care for him. We pray this all in the name of our Lord and Savior, Jesus Christ.
Mary
Tuesday, January 20, 2009
Coming Full Circle
After a full week of illness, our family is finally recovering. I feel like I am behind in everything now. Is it possible to be behind on your own blog? I know that I certainly feel like I am. I am also starting to get caught up on sleep, something that escapes me when the troops are sick.
AnnaSophia fought off croup like a champ, and is doing better. She spent four days sleeping in her swing (to keep her elevated) next to a humidifier. I think the fact that she is still nursing has also helped her immune system. Unfortunately, her CMV levels are increasing again. Her last PCR was over 2000. That's not as impressive as the 171,000 she was at before. The doctor's plan is to watch her carefully and hope that her immune system will be able to fight this on it's own, rather than starting her on antivirals again. Next week we go back to Children's for clinic. Her echocardiograms will be watched closely for any signs of rejection.
AnnaSophia's birthday celebration was lots of fun, and it was wonderful seeing so many of our dear friends. One friend reminded me that the day of her celebration, January 11, was the exact date that we had met, one year ago. Kimberly reminded me of the significance of the date. In all of the hoopla, I had forgotten that one year ago, AnnaSophia was undergoing her first surgery to correct her heart defects.
Kimberly and her family introduced themselves to Steve and I and had supported and prayed with us during our January 2008 stay at Children's Hospital. Their son Jonathan was at Children's due to complications from his cardiac surgery. Steve and I were scared to death as our little 11 day old infant underwent extensive repairs to her messed up little heart. Her heart was so swollen from the surgery that the doctors had to leave her chest open for two days after the surgery.
Nothing prepared Steve and I for what we were to see after she came out of surgery. She had lots of tubes coming out of her body, and she was on a ventilator. She had a thin piece of plastic covering the gaping hole in her chest, and you could see the rapid beating of her heart beneath it. She had ice packs behind her neck in an attempt to keep her body temperature lower in order to protect her brain. She had junctional ectopic tachycardia (JET) in which her heart rate was running 200-300 beats per minute. Praise God that she came through it better than we had hoped for. She even left the hospital one week earlier than we expected. I would never want to go back to January 11, 2008, but our experiences this past year have definitely changed us.
Steve and I have been forever changed by our journey of faith in 2008. Our journey has not stopped, but continues each and every day. We have learned to walk by faith and enjoy each day for the gift that it is. Having a child changes you forever. For us, having AnnaSophia in our family has definitely changed all of us in ways that we never would have imagined. One thing that we are sure of is that God is present in our lives and walks with us every step of the way, if we let Him.
Mary
AnnaSophia fought off croup like a champ, and is doing better. She spent four days sleeping in her swing (to keep her elevated) next to a humidifier. I think the fact that she is still nursing has also helped her immune system. Unfortunately, her CMV levels are increasing again. Her last PCR was over 2000. That's not as impressive as the 171,000 she was at before. The doctor's plan is to watch her carefully and hope that her immune system will be able to fight this on it's own, rather than starting her on antivirals again. Next week we go back to Children's for clinic. Her echocardiograms will be watched closely for any signs of rejection.
AnnaSophia's birthday celebration was lots of fun, and it was wonderful seeing so many of our dear friends. One friend reminded me that the day of her celebration, January 11, was the exact date that we had met, one year ago. Kimberly reminded me of the significance of the date. In all of the hoopla, I had forgotten that one year ago, AnnaSophia was undergoing her first surgery to correct her heart defects.
Kimberly and her family introduced themselves to Steve and I and had supported and prayed with us during our January 2008 stay at Children's Hospital. Their son Jonathan was at Children's due to complications from his cardiac surgery. Steve and I were scared to death as our little 11 day old infant underwent extensive repairs to her messed up little heart. Her heart was so swollen from the surgery that the doctors had to leave her chest open for two days after the surgery.
Nothing prepared Steve and I for what we were to see after she came out of surgery. She had lots of tubes coming out of her body, and she was on a ventilator. She had a thin piece of plastic covering the gaping hole in her chest, and you could see the rapid beating of her heart beneath it. She had ice packs behind her neck in an attempt to keep her body temperature lower in order to protect her brain. She had junctional ectopic tachycardia (JET) in which her heart rate was running 200-300 beats per minute. Praise God that she came through it better than we had hoped for. She even left the hospital one week earlier than we expected. I would never want to go back to January 11, 2008, but our experiences this past year have definitely changed us.
Steve and I have been forever changed by our journey of faith in 2008. Our journey has not stopped, but continues each and every day. We have learned to walk by faith and enjoy each day for the gift that it is. Having a child changes you forever. For us, having AnnaSophia in our family has definitely changed all of us in ways that we never would have imagined. One thing that we are sure of is that God is present in our lives and walks with us every step of the way, if we let Him.
Mary
Wednesday, January 14, 2009
Prayers needed, and Jan. 11, 2009 -- a day worth remembering
Before I get to AnnaSophia's celebration on Sunday, I want to humbly ask for your prayers for AnnaSophia's health. She has a nasty case of croup and even ran a fever off and on last night.
We are obviously hoping and praying for a speedy recovery as none of this is good for her heart, and she risks having to be put on steroids if her situation worsens. Mary and Ethan are sick as well. Please pray that AnnaSophia gets better quickly and that the rest of the family heals.
Back to our regularly-scheduled programming...
We wanted to take a moment to thank the Falcon community and all of the wonderful people who joined us for AnnaSophia's 1st Birthday celebration. It meant so much to us to see so many special friends and family members take time out of their Sunday to celebrate with us!
We also want to thank Pastor Pat, his wife Joyce, Dave, Mary and the entire leadership team at Grace Community Church for opening the church to us. A lot of work was involved in making this happen and we are so appreciative. Also, thanks to my mom and dad for helping with all of the pre- and post-event stuff!
Here are a few pictures, including a collage of photos my father-in-law put together -- THANKS! We got an opportunity to offer a bit of our testimony, and thank the Hibbert family for their sacrifice, to recognize Mason and to give a plug for organ donation.
Blessings,
Steve and Mary
We are obviously hoping and praying for a speedy recovery as none of this is good for her heart, and she risks having to be put on steroids if her situation worsens. Mary and Ethan are sick as well. Please pray that AnnaSophia gets better quickly and that the rest of the family heals.
Back to our regularly-scheduled programming...
We wanted to take a moment to thank the Falcon community and all of the wonderful people who joined us for AnnaSophia's 1st Birthday celebration. It meant so much to us to see so many special friends and family members take time out of their Sunday to celebrate with us!
We also want to thank Pastor Pat, his wife Joyce, Dave, Mary and the entire leadership team at Grace Community Church for opening the church to us. A lot of work was involved in making this happen and we are so appreciative. Also, thanks to my mom and dad for helping with all of the pre- and post-event stuff!
Here are a few pictures, including a collage of photos my father-in-law put together -- THANKS! We got an opportunity to offer a bit of our testimony, and thank the Hibbert family for their sacrifice, to recognize Mason and to give a plug for organ donation.
Blessings,
Steve and Mary
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