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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
Friday, February 13, 2009
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
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