Journal entry by Ashley Topham —
"It was not that this man had sinned, or his parents, but that the works of God may be displayed in him." John 9:3
"Many are the plans in a man's heart, but it is the Lord's purpose that prevails." Proverbs 19:21
Kent and I are still recovering from our whirlwind trip to Philly and Boston. A 'quick' recap for those who are not on Facebook :)
Philadelphia:
*We had a Level 2 ultrasound, where it was confirmed that Asher has 'double bubble' or duodenal atresia. This is the blockage in his bowel that makes it impossible for him to take in fluids. This is also the reason for my high amniotic fluid levels.
*We then had a fetal echo (ultrasound of just his heart) and met with a cardiologist there. She confirmed Asher's complex congenital heart defects. For those of you who like to Google, his official list of defects are:
-Complete AV Canal Defect (CAVC) mildly to moderately imbalanced (his right ventricle is smaller than his left ventricle)
-Pulmonary atresia
-Double Outlet Right Ventricle (DOVR)
*The cardiology team in Philadelphia would pursue a single ventricle path for Asher based on his defects. Whereas the normal, healthy heart has two pumping ventricles, Asher would only have one. This is a fairly straightforward process, with open heart surgeries at birth, around 6 months, and another around 2-3 years old. Unfortunately, as Asher's heart would be doing twice the work as a normal heart, the life expectancy for children with single ventricle repairs is much lower.
*We left Philly feeling pretty good. There were no surprises with Asher's diagnoses and the doctors felt confident in their ability to help Asher.
Boston:
*We started with an MRI. This confirmed everything we already knew about Asher's condition. However, it did not show anything else (no brain issues, etc), so that was great!
*We had another Level II ultrasound, which again confirmed Asher's duodenal atresia. It also showed lower fluid levels for me, which was a huge relief!
*Then we had another fetal echo. We were impressed with this echo because two doctors performed the echo and consulted together the whole time. After the echo, we met with the cardiologists. Dr. Freidman again told us of what he thought Asher has, which was almost identical to what Boston thought. We were hoping he would think a biventricle (full) repair of Asher's heart was possible, but at this time he does not think it's possible. This is because of the imbalance between his ventricles and a couple of other things. He did offer the possibility of a 'one and a half' ventricle repair. He was honest and said that it all depends on what Asher's heart looks like after birth and as he develops. We were encouraged by the possibility of a fuller repair. Of course, with the single ventricle repair, the risk is lower, but so is the long term reward (life expectancy). The 1.5 vent repair carries a higher risk, but a higher reward (more time with Asher).
*We then met with a social worker, who helped us with some housing possibilities and to just process some of the reality of what we would be going through. Afterwards, we took a tour of the Cardiac Intensive Care Unit (CICU). We were VERY impressed with the CICU and all of the nurses we met... but let's be honest: picturing our baby boy there made the stark reality of his condition all the more real. There were babies waiting on transplants, newborns who had just gone through surgery, and so many babies and kids that it broke our hearts.
*After all of our appointments and tours, we were able to meet up with a Georgia mom who has a 10 month old baby boy with the same condition as Asher (heterotaxy). What a small world! Here we both are, hundreds of miles from home, with baby boys who were both diagnosed with this extremely rare condition. This mom was such a blessing to us, as she very honestly shared their journey and struggles. Seeing a mom who was in our shoes a year from now was both comforting and difficult... We realized then what a long and hard road lay ahead of us.
So what did we decide??
We will be delivering Asher in Boston and having him treated at Boston Children's Hospital. This is for many reasons, but the deciding factor is their progressive approach to his care. They are willing to take risks for Asher so that he may have the LONGEST and BEST life possible. We do not know what the future holds for Asher, but we want to know we did everything humanly possible to fight for him and give him the best.
We will likely move up to Boston as a family around June 13 (I will be 35 weeks). We will keep the kids with us until Asher is born. They will get to meet him, and then will head home with one of our amazing mothers. After that, Asher will have abdominal surgery to correct his bowel obstruction and open heart surgery to place a shunt to ensure blood flow from the pulmonary valve.
We were told to plan to be in the hospital with Asher for about 8 weeks. When he is ready to go home, he will fly with us home so that he doesn't have to be in the car for so long.
Whew. I took a four hour nap today and woke up still exhausted. The mountain before us seems insurmountable, but our God is bigger than any mountain. Thankful for His grace and love.
Prayers:
1. For us to be able to find affordable housing for our family in Boston. There is one 2-bedroom Ronald McDonald house apartment that we qualify for. However, these are on a first come, first serve basis, and families are not limited to how long they can stay. Please pray this opens up for our family!
2. Peace for me and Kent. We are both overwhelmed and the journey has just started. I cannot process being apart from my other 3 babies while I am in the hospital with Asher, and Kent is struggling with the idea of going back and forth from Atlanta to Boston. We are blessed with an amazing support system, and for that we are grateful.
3. For Asher to stay put until after we move to Boston. Worst worst case scenario would be for me to go into labor before we move.
Praises:
1. I was able to come home!! My fluid levels were iffy and we were worried they would want me to stay.
2. We have a plan and doctors who are willing to help our sweet boy.
3. Being able to see Asher's sweet face, watch his movements, and spend special time with just him in Philly and Boston.
Needs:
Many people have asked how they can help/what do we need. With the amount of travel and time we will need to stay in Boston, our immediate and most pressing need is financial provision. My parents have set up a GoFundMe account, listed below. Some people have asked about a PayPal account. That is also listed below. We are overwhelmed by the amount of support we have already received and thank each one of you from the bottom of our hearts!
GoFundMe: https://www.gofundme.com/c4xzp-prayers-for-asher?utm_source=facebook&utm_medium=social&utm_campaign=fb_co_shareflow_w&fbclid=IwAR1iZlv3VAaYkcMMgySZYD838UcvT8aMEo8nyoBJCCbuehN51dHJE2Ybqkg
PayPal: ashley.topham@gmail.com
Thank you all for your prayers and encouragement. We are so grateful.
Love and Blessings,
Ashley & Kent
"Many are the plans in a man's heart, but it is the Lord's purpose that prevails." Proverbs 19:21
Kent and I are still recovering from our whirlwind trip to Philly and Boston. A 'quick' recap for those who are not on Facebook :)
Philadelphia:
*We had a Level 2 ultrasound, where it was confirmed that Asher has 'double bubble' or duodenal atresia. This is the blockage in his bowel that makes it impossible for him to take in fluids. This is also the reason for my high amniotic fluid levels.
*We then had a fetal echo (ultrasound of just his heart) and met with a cardiologist there. She confirmed Asher's complex congenital heart defects. For those of you who like to Google, his official list of defects are:
-Complete AV Canal Defect (CAVC) mildly to moderately imbalanced (his right ventricle is smaller than his left ventricle)
-Pulmonary atresia
-Double Outlet Right Ventricle (DOVR)
*The cardiology team in Philadelphia would pursue a single ventricle path for Asher based on his defects. Whereas the normal, healthy heart has two pumping ventricles, Asher would only have one. This is a fairly straightforward process, with open heart surgeries at birth, around 6 months, and another around 2-3 years old. Unfortunately, as Asher's heart would be doing twice the work as a normal heart, the life expectancy for children with single ventricle repairs is much lower.
*We left Philly feeling pretty good. There were no surprises with Asher's diagnoses and the doctors felt confident in their ability to help Asher.
Boston:
*We started with an MRI. This confirmed everything we already knew about Asher's condition. However, it did not show anything else (no brain issues, etc), so that was great!
*We had another Level II ultrasound, which again confirmed Asher's duodenal atresia. It also showed lower fluid levels for me, which was a huge relief!
*Then we had another fetal echo. We were impressed with this echo because two doctors performed the echo and consulted together the whole time. After the echo, we met with the cardiologists. Dr. Freidman again told us of what he thought Asher has, which was almost identical to what Boston thought. We were hoping he would think a biventricle (full) repair of Asher's heart was possible, but at this time he does not think it's possible. This is because of the imbalance between his ventricles and a couple of other things. He did offer the possibility of a 'one and a half' ventricle repair. He was honest and said that it all depends on what Asher's heart looks like after birth and as he develops. We were encouraged by the possibility of a fuller repair. Of course, with the single ventricle repair, the risk is lower, but so is the long term reward (life expectancy). The 1.5 vent repair carries a higher risk, but a higher reward (more time with Asher).
*We then met with a social worker, who helped us with some housing possibilities and to just process some of the reality of what we would be going through. Afterwards, we took a tour of the Cardiac Intensive Care Unit (CICU). We were VERY impressed with the CICU and all of the nurses we met... but let's be honest: picturing our baby boy there made the stark reality of his condition all the more real. There were babies waiting on transplants, newborns who had just gone through surgery, and so many babies and kids that it broke our hearts.
*After all of our appointments and tours, we were able to meet up with a Georgia mom who has a 10 month old baby boy with the same condition as Asher (heterotaxy). What a small world! Here we both are, hundreds of miles from home, with baby boys who were both diagnosed with this extremely rare condition. This mom was such a blessing to us, as she very honestly shared their journey and struggles. Seeing a mom who was in our shoes a year from now was both comforting and difficult... We realized then what a long and hard road lay ahead of us.
So what did we decide??
We will be delivering Asher in Boston and having him treated at Boston Children's Hospital. This is for many reasons, but the deciding factor is their progressive approach to his care. They are willing to take risks for Asher so that he may have the LONGEST and BEST life possible. We do not know what the future holds for Asher, but we want to know we did everything humanly possible to fight for him and give him the best.
We will likely move up to Boston as a family around June 13 (I will be 35 weeks). We will keep the kids with us until Asher is born. They will get to meet him, and then will head home with one of our amazing mothers. After that, Asher will have abdominal surgery to correct his bowel obstruction and open heart surgery to place a shunt to ensure blood flow from the pulmonary valve.
We were told to plan to be in the hospital with Asher for about 8 weeks. When he is ready to go home, he will fly with us home so that he doesn't have to be in the car for so long.
Whew. I took a four hour nap today and woke up still exhausted. The mountain before us seems insurmountable, but our God is bigger than any mountain. Thankful for His grace and love.
Prayers:
1. For us to be able to find affordable housing for our family in Boston. There is one 2-bedroom Ronald McDonald house apartment that we qualify for. However, these are on a first come, first serve basis, and families are not limited to how long they can stay. Please pray this opens up for our family!
2. Peace for me and Kent. We are both overwhelmed and the journey has just started. I cannot process being apart from my other 3 babies while I am in the hospital with Asher, and Kent is struggling with the idea of going back and forth from Atlanta to Boston. We are blessed with an amazing support system, and for that we are grateful.
3. For Asher to stay put until after we move to Boston. Worst worst case scenario would be for me to go into labor before we move.
Praises:
1. I was able to come home!! My fluid levels were iffy and we were worried they would want me to stay.
2. We have a plan and doctors who are willing to help our sweet boy.
3. Being able to see Asher's sweet face, watch his movements, and spend special time with just him in Philly and Boston.
Needs:
Many people have asked how they can help/what do we need. With the amount of travel and time we will need to stay in Boston, our immediate and most pressing need is financial provision. My parents have set up a GoFundMe account, listed below. Some people have asked about a PayPal account. That is also listed below. We are overwhelmed by the amount of support we have already received and thank each one of you from the bottom of our hearts!
GoFundMe: https://www.gofundme.com/c4xzp-prayers-for-asher?utm_source=facebook&utm_medium=social&utm_campaign=fb_co_shareflow_w&fbclid=IwAR1iZlv3VAaYkcMMgySZYD838UcvT8aMEo8nyoBJCCbuehN51dHJE2Ybqkg
PayPal: ashley.topham@gmail.com
Thank you all for your prayers and encouragement. We are so grateful.
Love and Blessings,
Ashley & Kent
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