Twenty three days ago my sweet baby Hope received her miracle gift of a hero liver from a deceased donor. I do not know anything about the donor or family, other than Hope received a part of the liver. To say that we have been receiving the most exceptional care would be an understatement. Two days after surgery, her surgeon took her back to the operating room to open a vein in the liver with a clot in it. Praise God this was found early so it could be corrected and she could move on to healing. She spent 5 days in the ICU unit where we had the best nurses ever. EVER. Then, we were moved to the transplant floor where other children recovering from liver or kidney transplants stay. Again, the nursing care was superb. God has clearly put incredible people into our path to help us through this time. What is truly amazing is the fact that Boston Children's Hospital's liver transplant program is top in the country and it is right in our backyard. There were families on the floor who have traveled from around the world to come here. A family recently moved up from Florida. Another is from Mexico. Another is from Dubai. It has confirmed that despite 6 of us living in a 2 bedroom condo, this is where we need to be and stay so we can continue to receive wonderful medical care. Someone in my liver families group has said that post-transplant care is so critical, maybe even more so than the initial surgery. Her son is 15 years out from his liver transplant, and I believe she is right. Hope has already had three appointments at Children's in the past week since we were discharged. Two of these were to measure labs. The other appointment included labs and to meet with the team for our weekly 9:00am clinic visit. Our team is on top of things and is in constant communication. Every time she has labs, someone calls me later that day to explain what they show. While we were in the hospital, our surgeon came to the ICU to watch the ultrasound being done. He did not rely on the report, but rather wanted to see it with his own eyes. Another time, our liver doctor told us she was awake in the middle of the night, logging on to monitor Hope's vitals since her temperature was slightly elevated. That is the quality of care we are receiving. So exceptional.
Hope has already shown amazing responsiveness to her new liver. On the day of surgery, her bilirubin/jaundice was at 15.8. Literally overnight, she went down to 3.6. She is now at .3. This means her liver is working perfectly. She now will sleep all night, with just occasional crying for quick reassurance. The days of feeding her at night every 30 min-2 hours are behind us. Her body can now absorb and use the nutrition that she gets. She has begun to eat solid foods and taking sips from a cup. She is gaining weight and is up to 17 lbs.
Hope has come home with a feeding tube, abdominal drain and with 9 different medications. Right now, two of these medications are to fight rejection of her new liver. She is on an antiviral. A blood pressure medication. A blood thinner. A stomach protector. An anti fungal. An antibiotic to prevent pneumonia. And a 1/4 teaspoon of baking soda (ewww, for her electrolytes). Over the course of the next year she will be weaned from many of these medications. She will be on the anti rejection medication for the rest of her life. She takes them all by mouth, despite the fact that some of them make her gag. The nurses all said they are amazed at how well she does taking medications at her age. The feeding tube is necessary since she isn't interested in drinking enough right now. The abdominal drain is helping to get rid of the fluid which collects sometimes after liver transplant surgery. Hopefully this will be removed in the next few weeks. Hope's incision is healing nicely and the stitches will dissolve.
The outpouring of love and support during this time I something for which I am so deeply grateful. People around the world have been holding us in prayer. Dear friends moved into my condo to take care of the 4 older girls. Never once have these friends complained or even seemed tired. Home cooked meals were made every single night for my older girls and friends staying with them every single night. People gave rides and playdates. Food, baby supplies, and groceries have been delivered. I have received visits, messages, texts, and emails to express love and care while Hope was hospitalized. Christmas gifts and stockings for the girls have been covered. The thoughtfulness is just such a gift to us. I will never be able to properly express my gratitude.
The doctors have said for the next 6-8 weeks it will be important to remain isolated. After surgery, Hope was started on anti rejection medications to help her body fully accept her new liver. However, this means she is extremely susceptible to even the most minor illness. Any fever over 100.4 brings automatic hospitalization. Over time, the effects of these medications will decrease and her immune system will become stronger. Until then, we will be following the recommendations of avoiding all public places and limiting all visitors.
God knew what He was doing, leading us to baby Hope. Her team of doctors and nurses are meticulous in their care. They explain everything to me, answer my questions, and truly love Hope. Even the ultrasound tech here knew she had been listed for transplant and was hoping for the miracle. It is humbling that I was chosen to be the mother of such a precious baby. We have crossed the huge hurdle of waiting for transplant. She has defied all of the odds and lived. Her hero liver came in time. We now are creating our post transplant normal, cherishing each moment. I am soaking it up and am grateful for all of it.
Friday, December 18, 2015
Saturday, November 28, 2015
Thanksgiving
Sovereign God
A risk to take
All things made new
Beauty from the ashes
Beauty in brokenness
A life that matters
No longer an orphan
A baby now known
A daughter dearly loved
The samaritan offer
A selfless donor and family
A hero liver
Always, always hope
It was not "too late"
Toxins gone
Whites of eyes
Pruritus a distant memory
Healing
Miracles in the midst
Company on the crazy coaster
A community who rallies
Exceptional care
Meticulous in every detail
Liver families
Tender touch
Outpouring of love
Offers of help
Friendly smiles
Understanding of pain
Whispers of prayer
A new day dawning
Precious moments in time
Feelings of peace
The ability to choose
A source of Hope
Rejoicing in life
Eucharisteo
A risk to take
All things made new
Beauty from the ashes
Beauty in brokenness
A life that matters
No longer an orphan
A baby now known
A daughter dearly loved
The samaritan offer
A selfless donor and family
A hero liver
Always, always hope
It was not "too late"
Toxins gone
Whites of eyes
Pruritus a distant memory
Healing
Miracles in the midst
Company on the crazy coaster
A community who rallies
Exceptional care
Meticulous in every detail
Liver families
Tender touch
Outpouring of love
Offers of help
Friendly smiles
Understanding of pain
Whispers of prayer
A new day dawning
Precious moments in time
Feelings of peace
The ability to choose
A source of Hope
Rejoicing in life
Eucharisteo
Wednesday, November 25, 2015
Hope in the risk
"Love is always worth the risk".
I wrote those words. Two years ago. Two years ago to the very day that we would get the call that there was a liver donor for sweet baby Hope. I wrote them to the mother of a little girl whose story I had been following. A little girl who was living with half a heart. A little girl who, like Hope, was not expected to make it. A little girl who was adopted from China as an answer to her mother's prayers. A little girl who embodied hope as she defied all odds and human understanding. A little girl who hung onto life and received the miraculous gift of a hero heart transplant. A little girl who stole the hearts of all those around her, including mine. A little girl, who would be known as Lily Strong. A little girl, whose very life was such a huge testimony to the love of our great God.
At the time, I had no idea what would unfold in my life just two years later. At the time, I did not know that it was no coincidence that I was carefully following and praying for sweet Lily and her family. At the time, I had no idea that as I spoke about Lily to my family and friends that God was weaving together stories and lives for His glory. At the time, I did not know that I was being prepared to walk a similar yet unique path. At the time, I did not know that I would ever actually have a hint of what was going through the mama heart of Lily's mom. At the time, I did not know that I would be asked to love dangerously, just as Lily's mom does.
I wrote those words to Lily's mama on November 24, 2013. And now, November 24, 2015 we would receive a call from Hope's transplant team that there was a hero liver for her. My friend found these words and shared them with me, as Hope lay sleeping on my chest awaiting her surgery. I immediately thought of the past year and all that Hope has been through. Six months of the past year were spent in an orphanage and hospice home as an orphan where she was not expected to survive. I thought of how impossible it was that she made it out of China and that she made it home. I thought of how unfathomable that it is that she was still alive and breathing on me. I thought of how miraculous that she has actually made it to the point where this gift is an option. I thought of how fierce my love is for her. And I thought of how I would do it all over again for her. Because she is so, so worth it.
I am still not sure why I was the one chosen to be Hope's mother. But I am beyond grateful that I was chosen. Loving her has taught me so so much, and I am still learning. I have learned to try to live in the moment and find the beauty. I have learned that there is ALWAYS hope. I have learned to choose hope in even the most desperate of situations or when things seem out of control. And I have learned that to love, even to love in the face of enormous uncertainty, is always worth it.
I live now to choose hope. And I live now to choose love. Because love is always worth the risk.
I wrote those words. Two years ago. Two years ago to the very day that we would get the call that there was a liver donor for sweet baby Hope. I wrote them to the mother of a little girl whose story I had been following. A little girl who was living with half a heart. A little girl who, like Hope, was not expected to make it. A little girl who was adopted from China as an answer to her mother's prayers. A little girl who embodied hope as she defied all odds and human understanding. A little girl who hung onto life and received the miraculous gift of a hero heart transplant. A little girl who stole the hearts of all those around her, including mine. A little girl, who would be known as Lily Strong. A little girl, whose very life was such a huge testimony to the love of our great God.
At the time, I had no idea what would unfold in my life just two years later. At the time, I did not know that it was no coincidence that I was carefully following and praying for sweet Lily and her family. At the time, I had no idea that as I spoke about Lily to my family and friends that God was weaving together stories and lives for His glory. At the time, I did not know that I was being prepared to walk a similar yet unique path. At the time, I did not know that I would ever actually have a hint of what was going through the mama heart of Lily's mom. At the time, I did not know that I would be asked to love dangerously, just as Lily's mom does.
I wrote those words to Lily's mama on November 24, 2013. And now, November 24, 2015 we would receive a call from Hope's transplant team that there was a hero liver for her. My friend found these words and shared them with me, as Hope lay sleeping on my chest awaiting her surgery. I immediately thought of the past year and all that Hope has been through. Six months of the past year were spent in an orphanage and hospice home as an orphan where she was not expected to survive. I thought of how impossible it was that she made it out of China and that she made it home. I thought of how unfathomable that it is that she was still alive and breathing on me. I thought of how miraculous that she has actually made it to the point where this gift is an option. I thought of how fierce my love is for her. And I thought of how I would do it all over again for her. Because she is so, so worth it.
I am still not sure why I was the one chosen to be Hope's mother. But I am beyond grateful that I was chosen. Loving her has taught me so so much, and I am still learning. I have learned to try to live in the moment and find the beauty. I have learned that there is ALWAYS hope. I have learned to choose hope in even the most desperate of situations or when things seem out of control. And I have learned that to love, even to love in the face of enormous uncertainty, is always worth it.
I live now to choose hope. And I live now to choose love. Because love is always worth the risk.
Thursday, November 19, 2015
Six months of Hope
“Orphans are easier to ignore before you know their names.
They are easier to ignore before you see their faces.
It is easier to pretend they’re not real before you hold them in your arms.
But once you do, everything changes…” – David Platt, “Radical”
#nationaladoptionmonth
#sixmonthsinmyarms
They are easier to ignore before you see their faces.
It is easier to pretend they’re not real before you hold them in your arms.
But once you do, everything changes…” – David Platt, “Radical”
#nationaladoptionmonth
#sixmonthsinmyarms
Friday, November 6, 2015
Ramblings of Hope
Yesterday, we got the call. As in THE CALL. The "possible liver" transplant call. It happened while we were already at Boston Children's Hospital with Hope's sisters who were getting transfused. There is not a way to describe the feeling of receiving that call. There are so many mixed emotions. Excitement for the possibility. Relief that my baby's suffering might be ending through the gift of transplant. Sadness for the family whose great loss is gain for another. Gratitude for the donor family for choosing life. Panic at the prospect of a 10 hour transplant surgery. Awe of God's goodness and provision. All entwined together in one moment. Layered upon that was the knowledge that my baby is sick with a cold and ear infection, and the disappointment that it likely is not meant to be. And the hope that maybe, just maybe, the doctors who would come to examine Hope would say she is well enough to undergo the surgery. Hope that maybe it was, meant to be.
As I explained to our transplant coordinator what has happened since Hope became sick Saturday night, I could hear the concern in her voice. She explained that she would call the surgeon. She would call back. I quickly told the nurses who were caring for my other two daughters what was happening. Oh those nurses. These amazing women who love on our family every three weeks on transfusion day. They knew the magnitude of what was happening. I didn't even need to say. They surrounded me and my children. They distracted and played. In their eyes I saw the emotions. The hope. The fear. The concern. The care. The support. They got it. They knew. One of our dear nurses looked at me when the room was a bit emptier. She tenderly said, "her lungs are so important for this surgery. So, so important." She had heard my baby daughter cough. She had heard her wheeze. And she reminded me of truth. She prepared me.
Soon two doctors came into the room. Hope beamed her huge smile as if to say "maybe I am ok for this?". They asked me what had been happening. They listened to her lungs. I could see the concern on their faces. I knew. Dr Elisofon looked at me. He explained how the risk is just too great with her in this condition. Risk of anesthesia. Risk of necessary immunosuppression. As much as we all wanted her to receive the gift, it wasn't meant to be.
They wanted to run a virus panel (RSV had already been ruled out by our beloved pedi, impressing the team) and get a chest X-ray. And then they were gone. But those nurses, oh the nurses of the CATCR where my girls are transfused, they knew. They understood. They were so sad for us. I told them I was on the roller coaster and wanted off. One said we are not just on any roller coaster. We are on the upside down terror coaster. Flying fast and in all directions.
In the midst of all of this, one of my dearest friend reminded me to seek the mercies. The mercies that are so clearly there. Our team. Our nurses. Our family. Our friends. Our living donor who is willing to come out for transplant surgery where she will donate the tip of her liver on November 18th. All mercies.
Because Hope's liver is so sick at this point, making it hard to breathe, sit, move, eat, and sleep, her team has said we will take the first perfect liver available. I do not know what this means. I do not know how this story will unfold. Will she receive her living donor's liver? Or will it be something sooner? Only God knows. And I need to trust that He knows best.
Driving home I complained to God. It is so hard watching my baby be so sick. I wanted her gift to happen, and it was hard going through what had happened that afternoon. Really HARD. As we got settled back at home, there was a message waiting for me. Another true mercy to remind me that God knew and understood. One of the sweetest young souls I know in this world said that she was reminded of me just that morning as she read Psalm 27:14 "Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD." This came minutes after a text from my wise counsel who said she thought I was so, so brave. Even though I don't feel brave, I knew. I am to continue to be patient and trust. And I can celebrate that another mother got the call. Someone else's very sick baby received a miracle gift last night. Thank you God.
As I explained to our transplant coordinator what has happened since Hope became sick Saturday night, I could hear the concern in her voice. She explained that she would call the surgeon. She would call back. I quickly told the nurses who were caring for my other two daughters what was happening. Oh those nurses. These amazing women who love on our family every three weeks on transfusion day. They knew the magnitude of what was happening. I didn't even need to say. They surrounded me and my children. They distracted and played. In their eyes I saw the emotions. The hope. The fear. The concern. The care. The support. They got it. They knew. One of our dear nurses looked at me when the room was a bit emptier. She tenderly said, "her lungs are so important for this surgery. So, so important." She had heard my baby daughter cough. She had heard her wheeze. And she reminded me of truth. She prepared me.
Soon two doctors came into the room. Hope beamed her huge smile as if to say "maybe I am ok for this?". They asked me what had been happening. They listened to her lungs. I could see the concern on their faces. I knew. Dr Elisofon looked at me. He explained how the risk is just too great with her in this condition. Risk of anesthesia. Risk of necessary immunosuppression. As much as we all wanted her to receive the gift, it wasn't meant to be.
They wanted to run a virus panel (RSV had already been ruled out by our beloved pedi, impressing the team) and get a chest X-ray. And then they were gone. But those nurses, oh the nurses of the CATCR where my girls are transfused, they knew. They understood. They were so sad for us. I told them I was on the roller coaster and wanted off. One said we are not just on any roller coaster. We are on the upside down terror coaster. Flying fast and in all directions.
In the midst of all of this, one of my dearest friend reminded me to seek the mercies. The mercies that are so clearly there. Our team. Our nurses. Our family. Our friends. Our living donor who is willing to come out for transplant surgery where she will donate the tip of her liver on November 18th. All mercies.
Because Hope's liver is so sick at this point, making it hard to breathe, sit, move, eat, and sleep, her team has said we will take the first perfect liver available. I do not know what this means. I do not know how this story will unfold. Will she receive her living donor's liver? Or will it be something sooner? Only God knows. And I need to trust that He knows best.
Driving home I complained to God. It is so hard watching my baby be so sick. I wanted her gift to happen, and it was hard going through what had happened that afternoon. Really HARD. As we got settled back at home, there was a message waiting for me. Another true mercy to remind me that God knew and understood. One of the sweetest young souls I know in this world said that she was reminded of me just that morning as she read Psalm 27:14 "Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD." This came minutes after a text from my wise counsel who said she thought I was so, so brave. Even though I don't feel brave, I knew. I am to continue to be patient and trust. And I can celebrate that another mother got the call. Someone else's very sick baby received a miracle gift last night. Thank you God.
Saturday, October 24, 2015
Riding with hope
Those who know me well will know that I am not a roller coaster kind of girl. I much prefer the merry go round. It's a gentler ride and on horses which is bonus. The merry go round is much more predictable, with some ups and downs, and always moving in a forward direction. Yet, life is not always like the merry go round. More often, it seems, it is like a roller coaster, with some exhilarating ups and terrifying downs and always a bit unpredictable.
The past few weeks have been very much like a roller coaster. There has been the exhilaration of finding a living donor, and then the stall at the top of the hill with no progress towards a potential surgery date. And the quick crash down of having my fears confirmed that Hope is becoming sicker.
We had our 3 month recertification for the UNOS liver waiting list last Wednesday. Children must be re-certified every three months to determine their status on the list. Our doctor does labs every month, so I had an updated score last month. The score is a called a PELD score number, with PELD standing for Pediatric End Stage Liver Disease. The higher the number, the sicker the child, and the more urgent the need for an organ transplant. Hope was listed with a "moderate" score of 18 back in July. It was the same number in August. In September, she moved to 19. And now, she took a jump to 24. Her jump in score is because she is not able to clot her blood as well (a function of livers) and her kidneys are weaker (which happens in liver disease). Despite the fact that she looks SO much better on the outside and continues to flash that award winning smile, she is sicker. Our amazing liver doctor, recognizing that she is sicker, told me that she would be applying for "exception points" for my girl. Exception points are written for by a child's doctor, which allows the child a higher spot on the list. In Hope's case, she has been written for a PELD score of 40. Her doctor explained that because of Hope's huge abdominal size (we had to have 3 different doctors examine it and have another ultrasound done on Wednesday because it is THAT big), her negligible vitamin levels, her portal hypertension, and her poor growth may allow UNOS to agree to place her higher on the list. Sometime this week we will have an answer to know if the points have been accepted.
It was very clear at our appointment on Wednesday that our team prefers cadaveric organ donation. I asked our doctor why. Her answer was simple. That there is no risk to another patient. Surgery is surgery, and even minimal risk surgeries (which our donor's team has said hers would be) carry risk. Other than that, there is no difference in how Hope receives her liver.
I left the appointment exhausted. And deflated. In the past three weeks, we had pneumonia hit our home for two girls, and lice hit for two girls (eek!). Hope is only sleeping 30 minutes to an hour at a time most nights now. Long gone are our two hours of uninterrupted sleep chunks. One fellow liver mom told me that as liver disease progresses, the baby's body becomes desperate for nutrition so wakes up to feed in an attempt to get what it needs. But it can never get what it needs, because the liver is too sick to absorb nutrients. My poor sweet baby girl. The roller coaster has been spiraling down so fast and I wanted my family off. I wanted the merry go round. I wanted to sit on the horse and have just little ups and downs, not this terrifying fast ride. Then I realized, I am not alone on the crazy coaster. God has provided me an army of friends to ride along with me. People praying for us during the ride. People who have been delivering food and meals. A friend who always thinks to offer to pay for the extras at my daughters' school. Friends who are not afraid to come into a home with lice or pneumonia and just hang out with us. Family and friends willing to stay with a child with pneumonia so another could get to a long anticipated appointment. Friends who message, call, and text just to check in and see if anything is needed. Friends who show grace when I cannot return a phone call or am late sending a thank you. A friend willing to take the time to email a vice president and explore financial resources so my children do not have any interruption in their child care routine. A donor who is willing to say YES. A friend who continually puts out our story in order for needed financial support since we have no income or unemployment benefits. A friend who donates her time to take family photos, and another friend who opens her home for a spur of the moment dinner. Fellow liver mamas who tell me that they understand, one who shares data on the kids waiting and takes the time to explain it to me, and others who remind me to live for today. A spiritual director who reminds me that God has the best plan for my sweet baby which is unfolding as it should be, and that I need to be patient and trust that He knows best. My list could go on an on. All mercies. From Him who sits next to me on the crazy coaster.
I am not sure how much longer we will be on the roller coaster as we wait for transplant. I do know that I would not trade this ride, as scary as it is, as it is MY ride. I do not know what corner, hill, or slope we are heading to tomorrow or next week, but I do know there will be more mercies. And I plan to hang on Him for the ride.
The past few weeks have been very much like a roller coaster. There has been the exhilaration of finding a living donor, and then the stall at the top of the hill with no progress towards a potential surgery date. And the quick crash down of having my fears confirmed that Hope is becoming sicker.
We had our 3 month recertification for the UNOS liver waiting list last Wednesday. Children must be re-certified every three months to determine their status on the list. Our doctor does labs every month, so I had an updated score last month. The score is a called a PELD score number, with PELD standing for Pediatric End Stage Liver Disease. The higher the number, the sicker the child, and the more urgent the need for an organ transplant. Hope was listed with a "moderate" score of 18 back in July. It was the same number in August. In September, she moved to 19. And now, she took a jump to 24. Her jump in score is because she is not able to clot her blood as well (a function of livers) and her kidneys are weaker (which happens in liver disease). Despite the fact that she looks SO much better on the outside and continues to flash that award winning smile, she is sicker. Our amazing liver doctor, recognizing that she is sicker, told me that she would be applying for "exception points" for my girl. Exception points are written for by a child's doctor, which allows the child a higher spot on the list. In Hope's case, she has been written for a PELD score of 40. Her doctor explained that because of Hope's huge abdominal size (we had to have 3 different doctors examine it and have another ultrasound done on Wednesday because it is THAT big), her negligible vitamin levels, her portal hypertension, and her poor growth may allow UNOS to agree to place her higher on the list. Sometime this week we will have an answer to know if the points have been accepted.
It was very clear at our appointment on Wednesday that our team prefers cadaveric organ donation. I asked our doctor why. Her answer was simple. That there is no risk to another patient. Surgery is surgery, and even minimal risk surgeries (which our donor's team has said hers would be) carry risk. Other than that, there is no difference in how Hope receives her liver.
I left the appointment exhausted. And deflated. In the past three weeks, we had pneumonia hit our home for two girls, and lice hit for two girls (eek!). Hope is only sleeping 30 minutes to an hour at a time most nights now. Long gone are our two hours of uninterrupted sleep chunks. One fellow liver mom told me that as liver disease progresses, the baby's body becomes desperate for nutrition so wakes up to feed in an attempt to get what it needs. But it can never get what it needs, because the liver is too sick to absorb nutrients. My poor sweet baby girl. The roller coaster has been spiraling down so fast and I wanted my family off. I wanted the merry go round. I wanted to sit on the horse and have just little ups and downs, not this terrifying fast ride. Then I realized, I am not alone on the crazy coaster. God has provided me an army of friends to ride along with me. People praying for us during the ride. People who have been delivering food and meals. A friend who always thinks to offer to pay for the extras at my daughters' school. Friends who are not afraid to come into a home with lice or pneumonia and just hang out with us. Family and friends willing to stay with a child with pneumonia so another could get to a long anticipated appointment. Friends who message, call, and text just to check in and see if anything is needed. Friends who show grace when I cannot return a phone call or am late sending a thank you. A friend willing to take the time to email a vice president and explore financial resources so my children do not have any interruption in their child care routine. A donor who is willing to say YES. A friend who continually puts out our story in order for needed financial support since we have no income or unemployment benefits. A friend who donates her time to take family photos, and another friend who opens her home for a spur of the moment dinner. Fellow liver mamas who tell me that they understand, one who shares data on the kids waiting and takes the time to explain it to me, and others who remind me to live for today. A spiritual director who reminds me that God has the best plan for my sweet baby which is unfolding as it should be, and that I need to be patient and trust that He knows best. My list could go on an on. All mercies. From Him who sits next to me on the crazy coaster.
I am not sure how much longer we will be on the roller coaster as we wait for transplant. I do know that I would not trade this ride, as scary as it is, as it is MY ride. I do not know what corner, hill, or slope we are heading to tomorrow or next week, but I do know there will be more mercies. And I plan to hang on Him for the ride.
Sunday, October 11, 2015
Hope on the red eye
Right now, on the red eye from Washington state to Boston, is our samaritan donor. In the world of liver transplants, there are two ways Hope could receive her gift. One is through cadaver donation, where a deceased donor's liver would be given to Hope. Hope is currently on the UNOS waiting list for a cadaver donor. There are WAY too many people waiting for livers than there are livers available. Since becoming a part of the "liver world" I have witnessed baby after baby die waiting for his or her gift. It is heartbreaking. Hope has been on the cadaver list for three months now. The sicker the baby, the higher they are on the list. Of course being sicker also means a much more critical surgery and recovery. I have seen babies die during the recovery process too. From what we can tell, Hope is 3rd or 4th on the cadaver list in this New England region, and there has been no movement in the time she has been waiting.
The other way Hope could receive her gift is through living donation. This means a person chooses to donate a piece of his or her liver. Hope only requires part of a liver to survive, and every person's liver is comprised of two lobes. If a living donor was found, she would receive the smaller part of a liver and the donor would keep the remaining larger part. The donor's liver would grow back to original size. It is the only organ in the body which can regenerate itself. When I first came home, I was very anxious to see what blood type Hope has. It is the first method of determining whether someone could be a living donor. Unfortunately, I am type A and she is type O. I cannot be a living donor.
Back at the end of August, our regional newspaper published a front page article on Hope's miraculous story in the Sunday paper. It was then syndicated around the US and abroad. Friends shared the article on social media, and the outpouring of prayers and support was nothing short of astounding. Shortly after, dear friends of our family sent a message introducing me to a childhood friend of theirs. This person asked if she could be tested as a living donor for Hope. She said she felt a strong calling or prompting from God to do so. And she was serious. Despite never having met us, she wanted to pursue being a donor.
Our first hurdle was to ask the transplant team at Boston Children's Hospital if it would be possible to consider this person as a living donor. Unbeknownst to me, there is a black market for organs which still exists in this country. Donors can receive payment for donating organs. The team takes this very seriously, and decided they would meet as a team to discuss it. At the time I had no idea what they had to discuss (again, I was clueless about unethical practices), and said to our transplant coordinator that I could not see the difference if Hope received an unknown cadaver donor or an unknown (to us) or known living donor. Perhaps it was that statement that contributed to the teams' agreement to allow us to pursue living donation. They gave us the go ahead to begin testing. Our donor quickly began completing questionnaires and bloodwork. All of the donor doctors and Hope's doctors are completely separate. This way, there is no conflict of interest. The donor is seen at a completely different hospital, and if donation surgery happens, Hope's surgeons will travel to this hospital on the day of transplant with cooler in hand to bring the liver back to Hope at Boston Children's Hospital. All of the donor's tests have been passed, and she is now on the red eye coming for the final round of testing to see if surgery could happen. We could even have a date set THIS WEEK for Hope's surgery. To say that it is all so miraculous and surreal would be an understatement.
Boston Children's Hospital has NEVER had what they call a samaritan living liver donor (samaritan being non family member or close known friend). Ever. There has only been ONE samaritan kidney donor at Children's. Ever. Even the name "samaritan donor" gives me chills. We saw one of Hope's doctors on Friday, and he asked how the liver transplant wait process had been going. I explained to him that our samaritan donor was flying in this week for final testing. He looked at Hope, then looked at me, and was at a loss for words. He then said "that would be astounding. I will keep my fingers crossed". I know it's not the crossing of fingers which is guiding Hope's story. But I thanked him, smiled, and basked in the story that is unfolding for my sweet baby girl under God's care.
Even if this does not work out, the fact that someone is willing to step forward to say YES to God's prompting in order to save my baby girl's life is breathtaking. Never, in a million years, would I have dreamed of this. Only God could orchestrate such a miracle. And I am the luckiest mother to be a part of it. Samaritan. Believe. HOPE!!
The other way Hope could receive her gift is through living donation. This means a person chooses to donate a piece of his or her liver. Hope only requires part of a liver to survive, and every person's liver is comprised of two lobes. If a living donor was found, she would receive the smaller part of a liver and the donor would keep the remaining larger part. The donor's liver would grow back to original size. It is the only organ in the body which can regenerate itself. When I first came home, I was very anxious to see what blood type Hope has. It is the first method of determining whether someone could be a living donor. Unfortunately, I am type A and she is type O. I cannot be a living donor.
Back at the end of August, our regional newspaper published a front page article on Hope's miraculous story in the Sunday paper. It was then syndicated around the US and abroad. Friends shared the article on social media, and the outpouring of prayers and support was nothing short of astounding. Shortly after, dear friends of our family sent a message introducing me to a childhood friend of theirs. This person asked if she could be tested as a living donor for Hope. She said she felt a strong calling or prompting from God to do so. And she was serious. Despite never having met us, she wanted to pursue being a donor.
Our first hurdle was to ask the transplant team at Boston Children's Hospital if it would be possible to consider this person as a living donor. Unbeknownst to me, there is a black market for organs which still exists in this country. Donors can receive payment for donating organs. The team takes this very seriously, and decided they would meet as a team to discuss it. At the time I had no idea what they had to discuss (again, I was clueless about unethical practices), and said to our transplant coordinator that I could not see the difference if Hope received an unknown cadaver donor or an unknown (to us) or known living donor. Perhaps it was that statement that contributed to the teams' agreement to allow us to pursue living donation. They gave us the go ahead to begin testing. Our donor quickly began completing questionnaires and bloodwork. All of the donor doctors and Hope's doctors are completely separate. This way, there is no conflict of interest. The donor is seen at a completely different hospital, and if donation surgery happens, Hope's surgeons will travel to this hospital on the day of transplant with cooler in hand to bring the liver back to Hope at Boston Children's Hospital. All of the donor's tests have been passed, and she is now on the red eye coming for the final round of testing to see if surgery could happen. We could even have a date set THIS WEEK for Hope's surgery. To say that it is all so miraculous and surreal would be an understatement.
Boston Children's Hospital has NEVER had what they call a samaritan living liver donor (samaritan being non family member or close known friend). Ever. There has only been ONE samaritan kidney donor at Children's. Ever. Even the name "samaritan donor" gives me chills. We saw one of Hope's doctors on Friday, and he asked how the liver transplant wait process had been going. I explained to him that our samaritan donor was flying in this week for final testing. He looked at Hope, then looked at me, and was at a loss for words. He then said "that would be astounding. I will keep my fingers crossed". I know it's not the crossing of fingers which is guiding Hope's story. But I thanked him, smiled, and basked in the story that is unfolding for my sweet baby girl under God's care.
Even if this does not work out, the fact that someone is willing to step forward to say YES to God's prompting in order to save my baby girl's life is breathtaking. Never, in a million years, would I have dreamed of this. Only God could orchestrate such a miracle. And I am the luckiest mother to be a part of it. Samaritan. Believe. HOPE!!
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